tag:blogger.com,1999:blog-84183670384027251492024-03-05T17:32:58.694-08:00Blah, Blah, BlahMy journey through life...the good the bad and the ugly.Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.comBlogger122125tag:blogger.com,1999:blog-8418367038402725149.post-43683062545197747592017-11-02T16:04:00.002-07:002017-11-02T16:04:28.729-07:00Still<div style="text-align: justify;">
I have tried really hard the last couple weeks to keep my thoughts, worries and all that is going to myself. It's no secrete I talk a lot and in reality I think I tend to over share or just spit out what ever is going on so I am not having to deal with it by myself. My plan has been to keep quiet as long as possible until I knew details but after today I realized I need to share. Even if no one were to read this I would feel like I got it off my chest and in the event any prayer warriors out there did read it, I would have the benefit of your prayers now. So here it goes, and of course "long story short" doesn't really apply to me. I will try to keep it just long and not longer.</div>
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For anyone that is new here, or needs a refresher here is a recap. I was diagnosed with Late State Lyme Disease and other issues in April of 2010 after some on going health issues. It is believed I picked Lyme up almost 32 yrs ago when I was bit by a tick in San Diego, CA at approximately 8 yrs old. Fast forward and both of my daughters have had some health issues here and there and it was determined that they have congenital Lyme Disease since I was not on any treatment (didn't know) while I was pregnant. A little over 2 yrs ago my oldest, now 14, was having random dizzy spells. While I believed at that point it was probably Lyme related we began the process of eliminating any other possible causes. One of our visits was to a pediatric neurologist who decided to do an MRI strictly in an abundance of caution since all other exams were normal. To here surprise, Jenna had (has) a Chiari Malformation Type 1. (This is where the cerebellar tonsils sit a little too low in the head and push into the opening at the base of the skull) We were immediately referred to pediatric neurosurgery. (These docs are at Rady Childrens Hospital in San Diego) Again physical exam findings were normal, and Chiari was really small but just to make sure we did a spinal MRI and to the doctors surprise it was discovered that Jenna has a Syringomyelia or Syrinx for short. (This is where the Chiari is causing pressure resulting in a cyst or pocket of spinal fluid inside the spinal cord) The doctor said we should do Posterior Fossa Decompression surgery. (Considered brain surgery they basically but through the muscles in the neck and remove a small piece of skull, sometimes putting a patch over it. The goal is to relieve the pressure and hopefully drain the Syrinx or at least keep it form getting bigger. There is a slight possibility of permanent nerve damage or paralysis if they Syrinx is putting to much pressure on the nerves and it isn't fixed.) We opted for a second opinion and were sent to a pediatric neurosurgeon at Childrens Hospital of Orange County. This doc felt that Jenna was really a-symptomatic and that her Chiari and Syrinx were both small. He said he would not do surgery but monitor her for the time being. So that's what we have done for the past 2+ years. Every 6 months Jenna would have another MRI and we would have to remove her brackets for her head gear and put them back on. Every time the MRI was unchanged. Then earlier this year Jenna began having a weird pain on the back left side of her head. Another MRI showed nothing new and the pain resolved on its own. We were told at that point that we could wait a year before the next MRI. This entire time Jenna was given no restrictions on her activity. In June of this year it was discovered that Jenna had very mild Scoliosis. In and of it self not a big deal.</div>
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Jump forward to August/September and Jenna began complaining of chills and goosebumps only on her left leg between her hip and knee. Until one day she had them on her whole left leg and her leg ached really bad for a good part of the day. Then she began having issues where she felt like she couldn't focus her eyes at times or her eyes couldn't track fast moving objects and sometimes light sensitivity. Frustrated she was having trouble I continued to monitor her knowing that Lyme can cause all sorts of neurological problems. It was a few weeks ago in October when Jenna came home from softball practice telling me her arms and legs had started to go numb. I knew at that point we had to follow up. An MRI was ordered and appointment made with her NS. Unfortunately Jenna had just gotten her top braces on and to the surprise of the techs they made her MRI completely unreadable. We met with the doc anyway. The discussion was that surgery was in our future no matter what. The good news she can continue to chase her dream of playing college softball. A new MRI was needed and depending on what that said surgery would either be urgent or just sometime in the future. I called our amazing orthodontist and discussed our options. We had her braces removed (after only 1 month UGH) and had her fitted for a cheap retainer. We will reevaluate our options after we get this more pressing issue figured out but obviously they can't remove her braces every 6 to 9 months. With braces removed we went back for another MRI last Thursday. Her NS is out of the office this week so we are scheduled to see him on Tuesday the 7th. I was able to pick up a copy of her images and the report on Monday and I'd be lying if I said I wasn't a little concerned. Her Syrinx has gone from her C5/6 - C7 to C5/6 - T1. Other measurements included in the report seem to indicate it may gotten longer but thinner so they may just consider it essentially stable. </div>
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There was also some new information on her report that has of course created some questions and concerns. It was noted that there is mild desiccation of her C3/4 and C5/6 along with minimal disc bulges and the straightening of the normal cervical lordosis. (Basically the beginning of degenerative disc disease, with mild bulging discs and loss of the natural curve in her neck). What this all means I am not totally sure and will have to wait to talk to the doctor. One of the things we are looking in to is the possibility of a connective tissue disorder called Ehlers-Danlos Syndrome (EDS). Jenna does have an issue with loose joints and it was suggested by multiple people in a few Chiari and Congenital Lyme groups that she be evaluated for this. I would love to get another opinion on this issue from a "specialist" in the Chiari world. Just like Lyme they seem few and far between. The one at Standford requires we travel up there and it would cost about $1500 just to have them review what we already have. I did find a specialty place in New York that will do an online review for $300 so that is the option we are looking at right now. </div>
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While I had every intention of waiting until our next appt before I shared the latest Jenna had another episode today that left me somewhat frantic and worried. She texted me about 45 min in to school and let me know something was wrong with her legs. She felt like they were swelling up, they got tingly and weak and hurt like they were bruised all over. She was able to walk and continue with school but it was very bothersome and while most episodes have lasted a matter of minutes this one continued for most of the day. And as always there is no rhyme or reason to why it starts, what makes it stop, how often it happens or how long it lasts. In true Madson style she (and dad) where pretty adamant that the big softball showcase tournament in Vegas would still be happening this weekend. After talking with the nurse at the neurosurgeons office if she is up to playing, she can. While I am nervous, that I can't be there even though hubby will be, I want her to go and shine. Who knows what the future holds.</div>
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Next Tuesday we could be told surgery is happening now and not at our convenience. And yes, like any parent, my soul is crushed. I want so bad to take this from her. Especially because her congenital Lyme probably plays a role in while this all is happening. I want to fix it. Honestly, I have been frantically trying to "control" it all away. If I call the doctor enough, research enough, OR WHATEVER enough, it will magically disappear. Then I switch in to work mode of cleaning the house and making a list of everything I need to have squared away for surgery. Definitely not what God wants me to be doing. You would think I had figured that all out by now. Obviously I have some growing left to do. </div>
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Here is what I know about surgery and what I could use from you prayer warriors. Surgery should be few hours. We would most likely spend 1 night in ICU and 3 to 4 days in the hospital. 1 to 2 weeks out of school and 6 to 8 weeks out of softball. My prayer requests right now are for a great softball weekend with not symptoms. Clear direction on treatment. (Believe me having the 2nd doc say no surgery was almost worse than him agreeing with surgery since it left the decision in our hands) That we are in good hands with our doctors and that we can get any other issues she is dealing with diagnosed. </div>
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So here I am. Still fighting Lyme. Still being a control freak. Still growing in my faith. Still learning to be STILL. </div>
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"Still" by Hillary Scott</div>
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I believe that You are God alone</div>
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But sometimes I still try to take control</div>
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Cause I get scared when I can't see the end</div>
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And all You want from me is to let go</div>
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You're parting waters</div>
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Making a way for me</div>
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You're moving mountains that I don't even see</div>
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You've answered my prayer before I even speak</div>
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All you need for me to be is still....</div>
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Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-32242684344827233442017-04-10T20:12:00.000-07:002017-04-10T20:12:16.847-07:00Stormy Seas<div style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;">A few months ago I had some big ideas of where this year was going to take me. I was trying some thing new for my health, focusing on being able to once again contribute to my families finances, changing up my blog and committed to sharing my story. January and February seemed to comply with my best laid plans and then March rolled in and things just kind of go flipped on their head. At this very moment I am trying to my best to ride out the storm and when the waters calm enough for me to get my bearings, I can re-evaluate the course I am on.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">After sharing some little wins with my health and the fact that my the pain I usually experience around my cycle and a full moon was gone, the winds of change blew in and the pain came back. Not only did the pain come back but everything started to go in a downward spiral. I am having days as bad as they were right before my diagnosis or during the first of year or so of treatment for Lyme. I just don't know how much more of this I can take. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My brain is so inflamed and jumbled up right now I can guarantee my spelling and grammar will be off and the words aren't going to flow smoothly as I share whats been going on. It's important that I share this for those of you that have been following this journey, for myself so it clears my mind somewhat and for those that is may help. So please bear with me. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">For some reason my nerves are not happy. The one symptom we had managed to significantly decrease and for an extended period of time was burning nerve pain. The ghost that sneaks up and holds the invisible cigarette lighter against my skin has decided to come back and visit my regularly. I can be cooking dinner, driving down the road, or laying in bed and the searing, burning pain is so bad I am surprised there are no blisters or scars. My muscle pain and weakness has returned full force. I am back to wanting to cut my arms off because the discomfort is so bad. I am battling my seizure type activity regularly. My legs are restless and I just can't get comfortable. I am having muscle spasms all over. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My heart is acting up again. Palpitations. PVC's. Recently I had to walk a short but somewhat steep hill and I had some chest pain. It went a way quickly but it is still scary. The only other time I have really had chest pain is when my heart rate had jumped up to 272 bpm on treadmill stress test. I get short of breath really easily and just don't feel good. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My brain is not functioning well. I am confused, lost for words and anxious. I start sentences and stop talking mid way through with out realizing it. My 10 yr old told me the other day I keep doing that and how something is wrong with my brain and I'd better see the doctor. Oh if only there wasn't so much truth behind those words. It really sucks when I have to look up my 5th graders spelling and vocabulary words or words she needs help spelling because I just don't know any more. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Fatigue. Or should I say <u style="font-weight: bold;">FATIGUE!</u> I maintain to this very day that if I only had normal healthy energy and the ability to sleep well and feel rested when I woke up I could live a full life with all of my other symptoms. Fatigue is the one thing that has never gone away. I have been dealing with it consistently for 20 years now. And it's only gotten worse. I am back to being severely exhausted so much so that I can not always stay awake through the day. Miserable. Most days I get the kids to and from school at least. Part of me feels like my body continues to adjust to what I am dealing with. So in someways it may seem to you like I am doing more, and maybe I am, it is not because I have made such great improvements or that I have put the disease into remission but more so that I have learned to survive with a new normal. A certain level of feeling bad becomes normal so I have to feel that much more crappy for things to take me down. Something has got to give. I feel like I am in limbo or some other "in between" state. I know this sounds horrible to say but I am committed to keeping it real so ...sometimes I wish things would get so bad that I was stuck in the hospital. Then the seriousness of what I am facing would be evident. It's like get better or get worse but don't just stay in this in between state that keeps functioning enough for people to think your doing fine and yet bad enough to make you look just plain lazy. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I know I am at the heaviest weight of my life and extremely out of shape and both of those things aren't helping the situation so I am trying to refocus on those areas. While I do have an appointment to see my doctor next week, the reality is so much of this I just have to figure out on my own. If money were no object I would stand a better chance of getting things figured out but even then this whole mess is just so complicated. It it critical though that we make some way. Not only have I lost a good part of the last six years with my husband and kids, and the my oldest will be gone before I know it but there health is becoming more of an issue. I can't put dedicate what I need to, to help them if I can't take care of myself. And so the story goes. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">This leads me to where my kiddos are in their journeys and my current worries and stress. My 13 yr old continues to be monitored by a neurosurgeon for her Chiari Malformation and Syrinx. She recently had a repeat MRI early than expected for some unusual persistent head pain in the back of her head. All remained unchanged with her other issues which is good but we had no known cause of her pain. If I hadn't shared in any early posts, she also broke her hand just before thanksgiving in a freak accident. It was a fairly traumatic injury and besides breaking her second metacarpal she lost a lot of skin about the size of quarter on the top of her hand. Her scare continues to hurt, the coloring in her hand is off just a little, and she is now having pain along that metacarpal. UGH! She has some random aches and pains and still some dizzy episodes so we continue to run tests, and when all comes up clear I just check the Lyme related box. Unfortunately trauma can cause things to get out of control so I am really monitoring her since her accident and am hoping this doesn't unleash the wild beast of this illness.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My 10 yr old has put me through the ringer the past few weeks and I just have this gnawing feeling in my gut something bigger is going on. She along with my husband and other daughter had been sick earlier in the year with a flu type virus. We managed it at home and either I didn't get it or I did and maybe that's why I am having an issue at the moment. I have never seen my hubby so sick. Fevers, body aches, sore throats, etc...Jump ahead about 4 or 5 weeks and my baby started in with a low grade fever and just not feeling great. It would come and go on it's own, disappearing for 24+ hours before returning. She started sleeping a lot, not eating. Blood work showed an elevated SED rate (which indicates inflammation) and she had (actually still has) and swollen lymph node in her arm pit. Long story short after almost a week she was diagnosed with bacterial pneumonia. I guess it was making its round at school but it was just a little crazy the way hers presented and I am thankful that I was persistent with the doctors that something was going besides the standard virus. She lost almost 3 pounds in a week and she is a string bean to begin with so we are working hard to get the weight back and she is still taking it easy. She gets worn down somewhat quickly and just still isn't a 100%. I do realize the lymph node may totally be related to the pneumonia but I am keeping my eye on it. In addition, she has these spider angiomas. They are typically considered benign. Just maybe fragile blood vessels. I had some as a kid too and they aren't all that uncommon. At her first doctor visit for her ongoing fever and lymph node issue the doctor saw one on her hand that she thought was a petechiae that can be a sign of Leukemia. That caused her to start looking at my daughters hands and arms. While what caught her attention was just an angioma she commented about how many there were. While she doesn't seem incredibly concerned about it there were about 12 which is on the higher side. Usually there are only a few. Well today I found 3 new ones. There isn't any really clear information on what they may mean for a child. They can be indications of liver issues but so far we don't have any other symptoms to go on. So while I am trying to remain calm my mommy sense just is nagging me so I am doing my best to stay on top things. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I am sure I have so much more I could say but I am tired and brain has decided to give up for now. I once again don't know where I would be with out my faith in God. Frankly I have cried, yelled at and questioned Him a lot lately. What an amazing father He is to love in spite of this. As angry as I get with Him somethings He is also the only thing that gives me hope to go another day. I've got some special people fighting some serious health battles I am keep in my prayers and honestly I'll could use your prayers too. Preparing to take on what ever challenges tomorrow holds for me. Thanks as always for your support.</span></div>
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Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-61253469571320390912017-01-25T00:12:00.000-08:002017-01-25T00:12:13.118-08:00And So It Begins<div style="text-align: justify;">
If you had the chance to go back and do high school again, would you? The answer for me is a big NO! I guess if I could take what I know today and go back and make different choices, I may consider it. But that is only a maybe. I absolutely mean it when I say that those 4 years were some of the most painful and difficult of my life. I left my small school and best friend behind (she is a year younger than me) and entered the crazy world of the unknown. For some people this may have been an opportunity for a fresh start and believe me I was initially hopeful that is what my future held. But I was lost in the crowd, the chaos and my own self debt. I thought I was doing the right things to be successful. I joined a fall sport. I was nice to people, at least I thought. (I look back now and realize that maybe my shyness and insecurity came off as cold or stuck up. I see it in oldest daughter. No wonder people would comment on the dirty looks I didn't even know I was giving. Sorry I guess I can't control the face.) Going to class and practice wasn't the tough part. It was the time in between, the passing periods, morning break and the most difficult of all...lunch. I couldn't tell you what I did that first day at lunch. Senior lawn, Juniors over here, sophomores over there, freshman? It was hard enough to figure out where to go let alone doing it alone. There was a girl I became good friends with on my field hockey team but she had a large tribe already and it wasn't easy to just join in. I remember feeling relieved at seeing a girl that lived up the street and thinking I could hang out with her and her friends. They had no problem letting me tag along but there was only a few of them and things like smoking cigarettes out of a soda can wasn't really my scene. I guess I didn't really have a scene at that point but I knew that I didn't want what they had to offer. So most days it was wondering around, probably not eating trying to look like I had some place I belonged. </div>
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Sophomore year couldn't come fast enough as that meant my BFF and I would be reunited. I am happy to say that we are still BFF's today and I don't know how I would have survived with out her. Now I at least had some one to hang out with at lunch even if it was a bunch of freshman. I don't remember how this next phase all started but our group expanded. A couple couple sophomore guys joined in as everyone was starting the whole dating thing. I found myself with my first real boyfriend. A guy who seemed to know everybody but wasn't exactly in with the academics or jocks. My luck was changing. I now had a crew and a boyfriend. If I only had known how quickly my life was about to change. </div>
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My church youth group went to a music festival for a few days and when I returned my boyfriend was convinced something had happened while I was up there. He questioned me for hours at a time, late into the night. My bedroom was right next to my parents at the time and I remember trying to talk quietly so they wouldn't hear me as I endured his interrogation. One particular night I gave in to every little detail he wanted to know. I had not cheated on him but he felt I had not behaved in the way I should have and the name calling began instantly. I sat there crying and apologizing when I should have just hung up the phone. The phone call that night turned in to not stop verbal abuse. I was called the most horrible things and yet I stayed. I answered the phone when it rang and allowed myself to be verbally assaulted. As much as it hurt in my mind I thought I can't hang up. It's rude to hang up on people. Mind you, I have to loving parents and was not brought up in this kind of environment so where I got the idea this ok or I deserved to be treated this way I'll never know. I can picture being on the phone in my bedroom and wanting to punch my hand through the window to take some of my emotional pain away. Or being on the phone in the kitchen the first time I was driven to think that maybe suicide was the solution. (I believe now that my Lyme Disease played a role in the anger and depression I was dealing with) At some point I had the nerve to call it quits and we broke up. It didn't end the control he had over me at this point. I was scared and I thought if I could just keep him happy, tell him what he wanted to know he would leave me alone. But nothing worked. I was stalked and harassed. Our mailbox was blown up and bashed in. He tracked me, my BFF, and a couple guy friends down one night where him and his friends followed us, he jumped on my car and made references to having a gun in the car. </div>
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On particular night he found me at the mall with a girlfriend talking to another guy. He pinned me up against the wall, punched it next to my face and threatened to jump off the second story. He followed us to my car and when we thought he was gone my friend and I headed back in the mall. Before we knew it he was chasing me across the parking lot and my friend and I got separated. She called my parents frantic that the last she saw was me being chased. (This was before cell phones mind you) I was finally reunited with my parents and my friend. The craziness continued. Regular threats of suicide and when I would call to let his family know I was told if I wouldn't make him made he wouldn't be doing this. The final straw was my senior year when he paid someone to start a fight with another guy at school I had gone out with. I found my self at the court house getting a temporary restraining order until we could go to court. After our hearing a 3 year restraining order was granted. That certainly didn't do anything for my popularity although at this point the rumors and lies he spread about me had already solidified my place alone. My self confidence continued it's downward spiral. My senior year I gave up playing any sports. I left school with out the varsity letter and lettermans jacket I had dreamed about.</div>
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While the piece of paper ordering him to stay away from me, my family, my house and my work helped a little bit it couldn't stop the mental anguish I now suffered. I was constantly afraid I was being followed and believe me there were plenty of incidents to back up the fact that that was indeed happening. I was worried non stop. He had his friend come by my work one night and question me on all sorts of things while he sat in the parking lot. Not to long after that he showed up at my work with a date. I was almost physically sick and scared for my life as I hid in the back room and called the police. He was arrested a short time later.<br />
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I did have a few random incidents that I don't know who was responsible for, one of which was a phone call telling me they were in my driveway watching me and if I hung up they were going to kill me. This whole thing has been a big struggle in the area of my faith. I try to convince myself I have forgiven him but I think deep down inside I haven't fully. Forgiving someone for such horrible things when they have never said they are sorry is not an easy thing, It is definitely something I pray about and continue to work on today. I still carry fears in the back of my mind that he may come back. While I have absolutely no evidence to support my fears they are there none the less. Strange calls, cars following me for too long...I am working so hard to break free from these chains that bind me. I know by not forgiving and living in fear I am not trusting God and I am only hurting myself. Again easier said than done but things I am working on.<br />
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The profound effect those years had on my self confidence are indescribable. I just wanted to feel liked and accepted one time. As hard as I tried to go out and become this confident successful person the lies I had been told by others and the ones I told myself were winning the war. They have continued to wage a war in my head everyday. I've caught myself continually seeking others people approval and just wanting other people to be happy. I always seemed to have more guy friends than girl friends but I wasn't the one they wanted to date.<br />
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It make me sad to think that I am almost 40 years old and only know am I beginning to see just how damaging this mindset has been. More importantly I realize that I have a God that loves me unconditionally and created me just the way I am for a reason. It's easy for me to tell others how much they are loved, and how special they are and that God has big plans for them but it has not been easy to believe those things myself. Since my experience in high school I have always wanted to share with other young woman so they could avoid those same mistakes I made and they could see their value in being a child of God. I think one of the big turning points for me this last 6 months is looking at my 13 year old daughter and seeing how desperately she needs this message as she gets ready to head off to high school next year.<br />
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Through some soul searching, some time with God, some personal development and the blessing of meeting my Beachbody coach Courtney I am beginning to see the value in me and the value in my story. I am far from perfect and I have a long way still to go in my healing and the change in my mindset but I don't want to wait any longer. After some difficult events for my family this past year in addition the the continual stories in the news of these young people being bullied and committing suicide, or other self destructive behaviors I realize it is selfish of me to not share my pain and my transformation. What if...what if just one person benefit from knowing they are not alone in their struggle, that other people have been there, that other people do care...what if.<br />
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For we are God's handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.- Ephesians 2:10</div>
Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-37615570165812281492017-01-16T21:29:00.000-08:002017-01-16T21:29:45.329-08:00New Year, New Direction<h4 style="text-align: justify;">
<span style="font-weight: normal;"><i>(Disclaimer* After much thought I have decided that even though I am taking things in a new direction I will continue to use this blog. I will still update about my journey with Lyme but am choosing for the most part to share my heart on some on other things)</i></span></h4>
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As bad as my memory is, I remember this like it was yesterday. The day I showed up to school and was promptly told I was a "poser". I guess I should back up a little and give you some background. I grew up essentially an only child. My two half brothers are quite a bit older then me and didn't live with me for very long at least that I remember. I was attending a private Christian school that went from preschool through 6th grade. It was the only school I had ever attended. While I had friends I certainly wasn't part of the popular crowd, which is funny to even think about since there were only 15 kids or so in each grade. In any case I somehow drew the negative attention of others and the relentless teasing began. (To be fair I don't believe any of those people could look back now and see how mean they were. In fact on of the main players in this story told me years later he had a crush on me and never remembered being mean.) I would bet for at least 2 years I went home in tears everyday after school. Leading up to this particular incident, I had been being made fun of for my sense of style or maybe in their minds the lack there of. If I wanted to be on top of my fashion game I needed to get some surf clothes. After all we lived in sunny San Diego and surfing was part of our culture. I remember pleading my case to my mom on how I needed to find some surf clothes. I convinced her to drive me the 20 or so miles to the big mall that had recently opened. They had a Gotcha store (for those who remember 80's surf brands) and maybe one other place what was sure to have just what I needed. Back then there weren't any brands or lines for girls so the standard t-shirt was about your only choice. I remember picking out a bright blue Hobie shirt. It had a little white dog with a black ring around it's eye. Perfect. </div>
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Thinking I had finally figured things out, I proudly walked in to school with my new shirt. If I remember correctly I had made it over to the swing set when the same kid that told me surf clothes were in burst out laughing and told me I was such a poser. My spirit was crushed. I couldn't tell you what started it all but I was teased endlessly for everything from being too flat chested to being a mommas girl. Day after day I went home a cried myself to sleep. So it began, the downward spiral of the friendly little girl who didn't know how to stand up for herself and just wanted to get along with everyone. I'm not sure my self confidence ever had a chance to develop. I knew my mom and dad loved me. I knew Jesus loved me. But I guess it wasn't enough to overcome what the other kids had to say about me. Those moments, those words, followed me from then on. They went with me to my new school in 7th grade. Another small private Christian school where once again I just couldn't manage to be part of the popular crowd. There weren't the tears this time as the out right being made fun of didn't happen. But there was just enough to somehow make me "frienemies" with the most popular kids and I still hadn't learned how to stand up for my self or where my self worth truly came from. It was just two short years before I was thrown into the wild world of high school. My graduating class of about 15 kids was split up amongst 4 or 5 high schools. You would have thought that being in a much smaller group of 4 or 5 kids we would have stuck together, looked out for each other but that wasn't the case. A couple of the kids had older siblings so they already had people to look out for them and older kids who knew there name. And the popular crowd stuck together. I was now in a sea of few hundred kids and no body knew my name. While I wish I could say I thought of this as my chance to start over and make a new name, a new identity I froze. My self worth was already so damaged, I didn't know how to start over, how to write a new story. Those 4 years in high school were some of the most painful years of my life. I'll save those stories for next time. </div>
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You may be wondering what the reason is for me sharing my child hood sob story. Why would people want to read this and what purpose could it serve? The answer is not an easy one to share. The truth is that little girl who just wanted people to like her 30 years ago is now the grown woman writing this blog. Those same insecurities, same uncertainties, feelings of being unworthy and being a failure plague me to this very day. About 6 months ago, in the midst of a rough year for my family, God just really laid it on my heart that I needed to deal with these issues. I needed to truly see myself as He sees me. While I have started down that road, I can tell it isn't going to be easy or quick. </div>
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One of the things I have learned so far is that it is incredibly important to be a truth teller. We are inundated day in and day out with tv, radio and social media telling us everything we need to do, to have, to change about ourselves to be okay, to be liked, to make in this world. Jealousy and insecurity are fueled by our friends posting on social media how amazing their life is- All The Time! We feel the need to show the world how together our lives our. Soon we begin to lose touch. We can't truly relate to each other anymore because behind the scenes we are trying to keep up with or out do each other. Now I am not saying announce on Facebook that you couldn't pay your bills this month, or post on Instagram you failed a college class. But please, post a picture without erasing every line and wrinkle on your face with some crazy filter and when someone asks how you are feel free to say not so good. You aren't always fine or okay. Life isn't always amazing. Being real allows us to be so much more compassionate and empathetic. Our relationships become that much more authentic.</div>
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There you have it. I am far from loving myself, far from looking in the mirror and believing I am beautiful, far from feeling worthy but I am getting there. If one person could benefit from me sharing my struggle and avoid the years of pain I have subjected myself to then it is worth it. What really fueled my need to do this was my two beautiful daughters. I would do anything to keep them ending up here where I sit. Just the other day I sat outside the dressing room as my 13 yr old tried on dresses for an upcoming school dance. All I could see were her feet turning this way and that as she evaluated herself in the mirror. In that moment I wondered what she told herself. What did that voice inside her head say and how had things I had said or done affect those things? What about tv, Instagram and friends at school? What truths was she believing about herself? Did she know how much her dad and I loved her, and Jesus loved her and was it enough to overcome the lies of this world. It scares me to think about. I knew then without a doubt I couldn't keep this to myself any more. This is my story, it is mine to share. My prayer for those of you reading this is that you know your value and your worth and how much you are loved. If however, you find yourself in my shoes either as a young lady or a grown woman I pray you will go on this journey with me. That together we can overcome the lies the world feeds us and we can find our true identity in the one who made us. You were created for a purpose and your story is not over. </div>
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Ephesians 2:10 For we are God's handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do. </div>
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Recommended reading: Finding Your Brave by Holly Wagner</div>
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Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-25419420555162491192016-08-13T22:47:00.001-07:002016-08-13T22:47:08.433-07:00Surviving the Day (Finding My Brave)<div style="text-align: justify;">
39. 39? 39!?! Could this really be the last year of my 30's? And 8th grade? Next year at this time one daughter will be going into high school and the other will be in middle school. The elementary school days will be gone. Brain fog, crying for no reason, falling asleep in the middle of the day and waking up feeling hungover, increased seizure type episodes. Is the chaos of my daughters All Star season catching up with me? Am I having a neurological flare up?</div>
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Were any of these things or a combination of all three the cause of my ever racing mind and the deep introspection of the last few weeks? I guess it doesn't really matter in the end. I just know I've been in a little bit of a weird place. Sad, frustrated, angry, exhausted, lost. Why was I still in this pit? Why were things not changing? How could I continue the rest of my life just trying to survive the day? I already felt like that's what I had been doing for the last year 8 to 10 years. Sometime after getting married and having kids but before my diagnosis I had entered survival mode. Day to day life was becoming a struggle. Maybe working full time with two small children was just making me an overwhelmed mom. Maybe the heart palpitations, numbness and exhaustion were really just anxiety. Whatever the case I just needed to get through the day. Push through and survive another day. Then came the incredible moment when I finally got an answer...Lyme Disease. Perfect. We had a name. We could treat it and I could back to chasing the life of my dreams. That was over 6 years ago and here I am still in this pit. </div>
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When I was younger and I dreamed of what my life would look like this certainly wasn't it. Out of all the things on my list I have managed two of them. I am a wife and a mother. While I am incredibly blessed to be serving in those capacities, I am far from the wife and mother I thought I would be and definitely not the wife or mother God would have me be. How did I get here? I am almost 40 years old, living in my parents house (and soon to be with my parents), missing my career and contributing to the family, lacking friendships, financially a mess and a faith that wasn't thriving. My ongoing to struggle to see myself as God did was only made worse by this growing list of failures, and trials I was facing. I compounded that by living in the on line world of perfect lives as seen on facebook and chose things that could temporarily numb my pain. Starbucks and mindless television were go to fixs for me. The pit seemed to be growing deeper and I was overwhelmed at the thought of what I could possible do to change things. I mean my life is half over. The best years are behind my right? It's too late to start over. Writing a to do list was easy. Eat healthier, take my meds, have a better attitude, read my Bible everyday, exercise, pray more, keep my house cleaner, stop spending money...it was endless. </div>
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I kept coming back to one thing. During this entire time I had constantly battled trying to control everything and everyone. Time and time again God would allow me to be put in a circumstance that would yank the control freak right out of me. I would go down fighting every time and eventually surrender but only for a moment. I knew the place I needed to start was God's word. I knew at some point I needed to learn to see myself and my circumstances through God's eyes. I needed to be grounded in His truth and the promises of His word. But every time I opened the Bible I never knew where to start. Old testament, new testament, Psalms? I didn't want to but just another "Christian" book either. While not bad to read them, I needed help digging in to God's word. Maybe a devotional was the right way to go. On the way home from my daughters gymnastics glass the other night I decided to swing in to the Christian book store. I didn't realize dinner was waiting for us at home so my leisurely browsing was now rushed but I was determined to grab something or a few somethings. They were having a great sale so I walked out with 4 books. 1 for each of the girls and two for myself. Little did I know what was about to unfold over the next few days. </div>
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I decided to jump in to my book that night and start my devotional the next morning. I had never heard of the author but the title and back cover spoke to me. "Find Your Brave- Courage to Stand Strong When the Waves Crash In" by Holly Wagner. The words on the first few pages pulled at my heart and brought tears to my eyes. They spoke so directly to how I was feeling and what I was going through. I was excited knowing I had at least on resource to help me get started. The next morning I cracked open the pages of my new devotional journal. "Looking Up-Trusting God With Your Every Need" by Beth Moore with Lisa Guest. While I was excited to see what this devotional was all about the journal part scared me. While writing has been beneficial to help clear my mind in the past and I liked the idea of keeping a journal to record what was going on in my life I was too critical of my self. I would go back and read what I had written and would just think about how dumb I sounded and in the trash it would go. ( I know one of my faults. I'm working on it). Once again the words I read, the Bible verses I looked spoke directly to my heart and were just what I needed to hear. God certainly had His hand in my hurried shopping trip and brought me to the right resources. It has been a great week of seeking God's word, beginning to learn and apply some critical truths in my life. Both books work so well together and the things I am learning have been reaffirmed though a few Facebook pages of all places. Proverbs 31 Ministries and Sown With Strength both are a great source of inspiration of for me. Plus I started off the last week with a great sermon from Pastor Spivey at New Vintage Church. </div>
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As I sit here writing this tonight I am beginning to see my self in a new light. I have renewed hope in God's promises and am learning new truths. Being content doesn't mean I have to accept the pit I'm in as my lot in life. God wants to rescue me from the pit. I've got some baggage to let go of and some work ahead but the future right now is looking brighter than it has in a long time. Learning to love my self and finding my brave after 39 years- challenging. Believing God gives us dreams for a reason- exciting. Just because I took the long way around doesn't mean those desires that were planted in my heart all those years ago are dead. Expecting big things from an even bigger God- awesome! (Oh and I'll be putting in some extra effort to my relationships so don't be caught of guard if I'm calling you for coffee or lunch sometime soon)</div>
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As a side note: Since this post was different than anything else I have written I figured I'd give a quick update on the health end. I continue to struggle on a daily basis. Fatigue being my biggest symptom. I am learning more and seeing just how much Lyme has affected both of my girls already and we are working through what exactly we need to do for all of us. I don't mind talking about it so if you have questions fire away. I'll tell you anything you want to know about Lyme and company. The blessing and the curse of this disease is looking ok. Believe me make-up and a smile go a long way to disguise the reality of what I go through. I still the leave the house, un-showered and in scrubby clothes more than I'd like but I am trying to make more of an effort to get up, dress up, and show up everyday. </div>
Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-15821129231197645622016-03-13T18:40:00.000-07:002016-03-13T18:40:58.848-07:00Beautiful Mess<div style="text-align: justify;">
As the 6 year mark since my Lyme diagnosis approaches I am amazed by the fact that this journey continues to teach me, stretch my faith, and push the limits of what I thought possible. While I tell people that I am really no better then when I started treatment which is true in a physical sense I am certainly different. I have grown in many ways and just when I think I'm done a new challenge comes my way the process continues. My journey toward better health started many years before my Lyme diagnosis. I sought things that may provide relief from my little complaints at the time but November 2008 is when I truly knew something was wrong. Unfortunately as I sit here all these years later, I fell like I am still scratching at the surface of what is going on with me. While Lyme Disease is definitely part of problem I am not sure I could give it a percentage of how much it plays into my struggles on a day to day basis. My beliefs on the whole thing continue to change the more and more I learn. Lyme Disease is a significant problem, hard to treat and can be fatal. However, as I continue to discover and now believe it is chronic dysfunction or dysregulation of the body systems that are truly the issue. A few years ago one of the top Lyme doctors renamed in MCIDS (multiple chronic infectious disease syndrome). That is a step in the right direction but I feel like if the body we functioning the way God originally designed it to function, then the infectious disease part wouldn't be such an issue. This is as far as it goes for me though. I don't have a doctorate of any type in any thing and I really have no desire to get one so I am sure this will just remain my opinion based on my own personal experience. </div>
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I came into 2016 with lots of hope but I also felt like I had a game plan. I temporarily lost that hope when I went to one of doctors appts and left feeling once again like he had idea what to do with me. I vented my feelings to my fellow Lymies was flooded with encouragement and suggestions. Bee Venom Therapy (BVT) was one of them but I am just not ready to even entertain that idea. What was I going to do? We got money back from taxes and while we were focused on paying off as much debt as we could we saved a little fun money. While the hubby and kids were plotting their fun purchases I decided to put mine towards seeing yet another doctor. I had high hopes as two of my fellow mommy friends with Lyme were seeing him with some good results. I just didn't know (and still don't) how much I can get before the money once again runs out. In any case I figured it was worth a shot.</div>
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Enter Dr. T. I must admit I have been frustrated with the fact that I didn't know about him before I flew off to the Land of Oz in Kansas 4 years ago. Much of what I had read about him sounded just like where I had been in Kansas and he is local. Saving a few grand on airfare, hotels, etc...would have been a nice addition to put towards treatment. I realize though that I was probably not ready for what Dr. T was going to tell me had I seen him before now and I certainly would have missed out on meeting some incredible people. Back to Dr. T, my friends were so excited I was going to see him. One of them even said to me that they thought I was really ready to see him since I had been committed in taking on the Whole30. If I only knew what that was going to mean. </div>
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Last week I finally had my highly anticipated 2 appts with him. I had filled out my new patient paperwork, including a checklist of over 200 symptoms, and sent in my current med/supplement list and a health history narrative. Then I found out he doesn't even look at that until after your first appt. He doesn't want any ideas in his head of what may be going on with you. I totally get that and actually really appreciate it. It reminded me of how I didn't like the firefighters to come up and talk to me when I got on scene of a fire until I had a chance to look around and use what I had learned about burn patterns and indicators to give me an idea of where the fire had started. It was harder to be objective looking at a fire when someone told me a bunch of information before I had looked at anything. Smart doc, I like it. </div>
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I guess I should back up and tell you that Dr. T is a functional medicine chiropractor. Bring on the muscle testing, zyto and other unconventional forms of testing I had come to appreciate over the years. Now because the doc knew I was friends with 2 other patients who had Lyme he added that and all the co infections into my testing. As a side note at least 2 forms of Lyme bacteria, bartonella, babesia, erlichia, a systemic bacterial infection, viruses, and at least 1 parasite all popped up. While they are something to pay attention to they are not the big concern right now. Like the Hansa Center in Kansas, the main goal is to restore the body's function as much as possible and then hopefully it will take care of most of those things it self. </div>
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Now I have met with Dr. T for a about 4 hours and put another few hours into reading and researching and I still don't fully understand everything. You really need to a be a geneticist or super science geek to get some of these results so just know I am trying to paraphrase what we discovered and put in understandable terms as much as possible. (Translation=I'll probably get it wrong) Here goes nothing. Detox pathways is something a lot of Lyme people focus on. I've considered doing this testing (23 and me) but I just didn't feel like it was one of my issues. Everyone I knew that had detox issues or a genetic defect in these pathways couldn't tolerate antibiotics (like one dose would almost kill them) and would get no relief or even get worse from things like the sauna and Epsom salt baths. I did five or six antibiotics at one time and used the sauna or took baths all the time. Didn't seem to bother me to much. I was excited though that we would be looking at some of these issues during the testing and thought well at least I can check it off my list. Ya well my pathways had something else to say and they are actually quite a mess. There are actually pathways that deal with all sorts of things and I seem to have issues in all of them. Detox, toxin metabolism, inflammation, neurochemical, energy production, steroids hormones and immune pathways. This is all leading to serious histamine and inflammation problem causing almost my entire system to lose it's freaking mind. When it comes to organ issues my pancreas is showing as the biggest issue. Many things seem to test back to inflammation and pancreas. Dr. T asked is I have a family history of diabetes (which I do) and told me I am headed that direction if we don't get this figured out. Other organs showing issues are: heart, brain, 4 sinuses, both ears, lungs, ascending and descending colon, ovaries, joints, spleen, gallbladder, liver, kidneys and adrenals. I also have a problem with certain barriers in the body having "holes" which allow things to pass through them which should not happen. The most common one is leaky gut. Food particles and such from your gut can pass the barrier and end up in your blood stream when they shouldn't be. I have similar issue with both the lungs and brain. Speaking of the brain I have an issue with oxygen brain which can cause short term memory loss, word aphasia, and word slurring all which I have experienced but mostly the memory loss. My parasympathetic nervous system which deals with things like rest and digestion is decreased while my sympathetic nervous system which deals with our fight or flight response is increased. So basically don't have enough braking power for the amount of gas my body is being given. It is confused with trying to go and stop at the same time. I have issues with heavy metals and EMF's (cell phones, wi-fi,etc...my body actually craves emfs thinking it can use it for energy) and trace minerals.</div>
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To help start fixing these issues I have started on some new supplements and been given a new diet. I am also doing a therapy that has to do with polarity of the body and trying to put my body in resting state from all of the EMFs. I'll see the doctor again in a few weeks and may start with some adjustments and other therapies. Interestingly enough Dr. T sees our regular chiro, Dr.S (whom we love) and vice versa. There was some discussion about trying to get Dr. S to come to an appointment so they can see me together and help get some things figured out. </div>
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As for the diet, I thought the Whole30 was tough. but I look forward to the day I can just do the that. I have confirmed after a 30 day round and a 41 day round of the Whole30 that sugar does affect my pain level. Unfortunately the cravings never went away and there is some speculation that the cravings may be related to my pancreas problems. I now have a combo of the Whole30, a low histamine diet, and a few other things my body doesn't like at the moment. In a nutshell I can't have:</div>
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alcohol, grains, dairy, added sugar in any form, legumes, chicken, pork, fish (unless it is extremely fresh), berries, bananas, melon, COFFEE, avocado, citrus, potatoes, tomatoes, peppers, eggplant, spinach, sweet potatoes, any nuts, baking soda/powder (whats the point of those without anything else) and any artificial anything (again no point with everything else I can't have). The doctor tried to be nice and tell me things I could have like bok choy, dandelion greens, chard, etc., which are all things I have never even bought let alone try to cook. So unless I win the lottery and can hire a chef to help me out I have a feeling this is going to be a rough go for a little bit. There is no time limit on this right now so it's this until...I lucked out and with one of my supplements I could have eggs and sulphur veggies (cabbage, broccoli) which were originally on the list of no's because I have a sulphur problem as well. I guess I will found out what I am really made of. </div>
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Lots of praying going on though this process. While I have typically prayed for help trusting and giving up control in the past I find myself praying more for wisdom now. I really like Dr. T and so much of what he said made sense to me. If my body is really having problems detoxing toxic substances or metabolising things so they can be used or eliminated then it makes sense to me that many of my medications and supplements in the past probably didn't do much since my body can't process them correctly. Having to trust that if this is where I am supposed to be then God will provide the finances, It continues to be a journey full of trials and tribulations, but also one full of faith and hope. While I left Dr. T's office feeling like a walking disaster there was beauty in the feeling of hope that I can still regain my health and the large part of my life that has been lost to being sick. I've got a little more than a year to get this figured out because I have big plans to start my 40's in much better place than I've spent my 30's!</div>
Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-4329251441128213952016-01-12T20:55:00.000-08:002016-01-12T20:55:09.656-08:00New Hope<div style="text-align: justify;">
A very late Merry Christmas and Happy New Year to you all. I love this time of year, starting at Thanksgiving until the new year begins. I've always loved New Years resolutions although I can't say that I have ever kept any. I like the idea. A new year always feels like a fresh start so I enjoy thinking about some things I want to work on changing or goals and dreams I have for me and my family in the coming months. This year was no different, with the exception of my health being number one on my list. Many people want to eat a little healthier or work out regularly but for the last 6 years mine has been to beat Lyme and everything that has come with it.</div>
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I was thinking earlier about how many people ask how I am doing and are surprised to find out I am still fighting and that I really haven't made any improvement. "You look good" "I always see you doing things" "You wouldn't know there was anything wrong" I get it. I see how people can be confused but I think I figured it out. In my particular case, we believe I got Lyme Disease about 30 years ago when I was around 8 yrs old. I was bit by a tick right here in San Diego. Lyme was new on the scene and it was thought there was no way it could be here in California, plus I didn't develop a bulls eye rash so there was no need to worry. I also didn't become suddenly ill. I didn't wake up paralyzed or suffer from anything to raise any serious red flags. My mom will tell you I complained of stomach aches often and I struggled with remembering things or staying organized but not of it interfered in my daily life. More than likely my body was able to keep the Lyme in check. Over the years I had numerous viruses like most people and that probably began weakening my immune system. </div>
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Looking back, high school is when things began to turn. I was sick to my stomach a lot and was finding I was extremely tired. No test the doctors did ever seemed to show anything and I just figured I was over stressed and not taking great care of my self. I learned to adjust to how I felt on a daily basis and that became my new normal. After having my first daughter some things started happening with my heart and my ability to focus. I was diagnosed with ADHD after returning to work sometime around 2003/2004. I had my second daughter in 2006. Issues with my heart continued and became a little more bothersome, my ability to focus and stay on track continued and I was going on 11 years of being tired. In 2008, just a couple weeks after participating in the Breast Cancer 3-Day 60 mile walk things really began to go down hill. I look back now and realize the stress of 2 pregnancies and participating in this event just pushed my body over the edge. </div>
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When I was diagnosed in 2010 my health was at an all time low. I would say the stress and side effects of treatment pushed things a little further and that is where I have remained. For those of you that were around when I was diagnosed, it looks like things have improved but the reality is I have adjusted to a new normal. I have felt like this for so long the not feeling good is a daily thing. I've learned how to function somewhat with the current level of bad. I've got out of posting about it all the time because I know I people get tired of hearing it and frankly I know I shouldn't dwell in that dark place. There are still many days where getting the kids to and from school is all I can manage. I push my limits to be there for my kids because it helps me feel somewhat normal and it means the world to them. I'm continuing to wait for my miracle and try to figure out what to try next. I have been blessed in countless ways during these last 6 years so please know I have a lot I am thankful for. I am just not ready to settle and believe this will be as good as it gets. </div>
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A few months ago you may remember me writing about my journey with the Whole30. While I am still proud of 30 days with no dairy, added sugar of any kind, grains, alcholhol, and legumes I didn't give it long enough for my situation. The reintroduction of certain foods opened the flood gates and old habits and cravings were right back. I can tell you that in those 30 days, my skin looked better and I lost weight. I may have even had a slight reduction in my pain. What I have dealt with the last month or 2 since stopping has been nothing short of intense. I would even be willing to say I had some of my worst moments since being diagnosed. The joint pain I had in my fingers and toes got worse and now was in my elbows and knees. I had widespread muscle aches, I was having multiple seizure like episodes a week and was sleeping my days away. I had a big reality check when I went outside to shoot baskets with the kids on the hoop they got for Christmas. I didn't have the strength to get the ball to the hoop and after about 2 minutes I was done. It made it very clear that if things didn't turn around soon and if I didn't find a way to start building up my body that I will be in a wheel chair shortly. Somethings got to give. </div>
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I still don't fully understand how I could go to feeling that much worse when I didn't really feel noticeably better. When I started to fight the sugar demon right away I knew 30 days wasn't long enough and the creators of the Whole30 say up front for Lyme or other illnesses plan on doing it longer. I'm not happy about it, but I am currently on day 8 of a Whole90. Yest that is 90 days! Thankfully no one has been injured this first week but I apologize now for my attitude if you have to deal with me these next few weeks. I have stopped doing my IV ozone as I wasn't feeling any better doing it and most days I was to exhausted to get my self to the doctors any ways. Plus it's not cheap. I will see my doctor in February and am hoping to start the Low Dose Antigen therapy I talked about sometime soon. With a few medications and all my supplements, I am back to taking about 30 pills a day. I am hoping between the diet, the supplements, the support of essential oils and the addition of LDA that I can finally get my life back. </div>
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I'm choosing to use the New Year to inspire New Hope for putting this disease in remission and reclaiming my life. Praying that 2016 is a year filled with health and happiness for all of you. </div>
Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com1tag:blogger.com,1999:blog-8418367038402725149.post-90314115858104441172015-09-30T12:53:00.002-07:002015-09-30T14:02:32.054-07:00And Then...<div style="text-align: justify;">
While I wasn't planning on going this long between updates on my Whole30 adventure a little medical issue kind of got me sidetracked. I can't really say you've missed much though. Here's what I can say: Today is day 24 and the cravings are still there just like they were on day 1. I haven't totally adjusted to my coffee without sugar. Eggs everyday isn't completely terrible. Sugar is in just about everything. 30 days isn't going to be long enough for me. </div>
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In the 3 weeks and a few days since starting this journey I can tell that my skin has continued to improve and I have lost some more weight. Both of those things had started earlier this year with the elimination of gluten and a reduction on dairy and sugar. Going the extra mile has just continued those benefits. However, increased energy, reduction in pain, improved brain function or just a general reduction in the symptoms due to my illness hasn't happened YET. I emphasize yet because I have come to face the reality of just how off my diet has been and for how long and the bottom line is it's going to take longer than 30 days for my body to adjust. My doctor is also doing the Whole30 and is a few days behind me. He is always excited to hear how its going. While he was beyond impressed that I had been successful this long, he was a little disappointed that I had not had more noticeable improvements. I told him the honest truth about my life long sugar addiction and he let me know that I was very fortunate that I had not become addicted to drugs or alcohol as it is fairly common for people with such a love of sugar to become addicted to other things. I would say he agreed with my assessment and it will take me a little longer but good things are happening even if I don't see the changes yet. </div>
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While I consider myself successful to this point the creators of this program would say differently. Tough love is certainly a tactic they use. Here is where I have "failed" in these 24 days. The first 2 days I took my digestive enzyme like normal without realizing that is contained milk. Towards the end of the 3rd week I drank about half a bottle of a chia seed drink that I didn't realize had agave in it despite reading the ingredients a time or 2. Both of those things were accidental but the program says regardless of the reason they believe you should start over. For my own sanity I was not prepared to go back to day 1. The other times I made a conscious decision about something I ate that they would consider non compliant. Both items were fine ingredient wise but not in keeping with the general spirit of the program. I ate about 5 french fries and a few handfuls of Terra Chips. I actually planned on eating a whole order of fries but immediately knew I it was a bad decision and that I would regret it. The fact I stopped eating them is a success in my book. The chips I initially ate due to poor planning and their availability. I can see why the plan considers them food without breaks. It would be very easy to sit down and over do it. They both helped fulfill some kind of craving. I am not going to beat my self up over those decisions and am still considering my self a success up to this point. </div>
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I will say that this process is definitely hard. Certainly harder for some than it is for others. Here is where I have struggled and know that I can improve in the future. First and foremost is the sad shape of my diet up until this point. These are significant changes to make. I am telling you, sugar is in everything. So when you think its not a big deal to primarily eat meat and vegetables try finding compliant deli meat or bacon or something to dip your vegetables in that does not contain sugar. Second is the fact that I don't feel good and lack energy to get through the day everyday. My lack of cooking skills and planning goes hand in hand with #2. If I felt better and had more energy things like cooking, cleaning and planning would not seem like such overwhelming tasks. Lastly having kids and a husband who aren't on the same plan. (at least not yet) makes it a little more of challenge. I will say my family has been very supportive of me though. I realize I am not eating enough vegetables or fat at every meal. I also had a week of not eating enough due to my little medical problem and I haven't quite gotten back on track yet. </div>
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I have not made a decision on what will happen on day 31. I can choose to follow the plans reintroduction of foods and see which ones I can tolerate on some level, I can continue as I am, or I can quit and resume the diet I had. I really don't consider quitting an option so I am left with the first two. My gut feeling is I will reintroduce somethings that I know will be helpful in me maintaining a much better diet for the long term. I already know I am better without the gluten, most dairy, and added sugar. These final 6 days could be a game changer though and maybe I will take on another 30 days. I know everyday beyond the initial 30 that I can do this will only be a benefit to me. I will certainly let you know what I decide.</div>
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I'm sorry this post is a little long already but I wanted to give an update on what else has been going on health wise for those that are interested. A little more than a month ago I started IV ozone as my latest treatment for Lyme and its associated problems. Treatment was once a week although I did have a week off since my doctor was out of town. After the first treatment I was definitely more tired. After the second treatment I was not only more tired, but had the return of some awful nerve pain. I had random bouts of burning pain that appear almost any where on my body. We had some rainy weather during this time and on a few occasions when the rain was just beginning to fall almost like a heavy mist any exposed part of my body would sting with every drop of water that touched it. I had not experienced this since before I was diagnosed. While it was frustrating and uncomfortable I took it as a sign that the ozone was killing off some bugs and that it was just part of the wonderful herxheimer (herx) reaction so often associated with Lyme. The random burning and increased fatigue have unfortunately decided to hang around for a while. </div>
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The third treatment brought about some very unwelcome symptoms that temporarily turned my world upside down and left me wondering- "What the hell just happened?". And as usual I am not sure we have a definitive answer to that question. My treatment went as usual that morning and I headed home. I was tired as expected and knew my busy evening with back to school night and softball practice may require a little extra push. About 4 p.m., I was sitting at my desk, when head to toe pain washed over me like a wave. I was suddenly hit with some of the most severe body aches I had every had in my life. Every move I made hurt and my skin felt bruised all over, I was suddenly dreading the night ahead of me but figured it was important for me to go and it would be a distraction to what must be a severe die off from my treatment early that day. While I managed to get through back to school night it was not the distraction I hoped it would be and I felt worse with each passing moment. I finally made it home where I took my alka seltzer gold that usually helps reduce my pain and decided to detox with an epsom salt bath. As the bath water ran, I took my temperature and it was 99.2. While most people wouldn't consider that a fever, for someone who runs a degree or two below normal this could be the start of a low grade fever. I took my bath and then climbed into bed. It did not take long for my heart to become very unhappy. The rate seemed high but more concerning was the feeling that it was skipping beats or throwing PVC's every minute or two sometimes more. I let my husband know he needed to come straight home from softball practice because something was wrong and I didn't feel good. ( I was also having severe left sided ovarian pain which is normal for me but this time was more constant and intense) Was this all related to an ovarian cyst? Did I pick up the nasty virus going around the kids school? Who knew but I was miserable. I was not new to my heart acting up but it doesn't make the episode any less scary. I let this continue for a couple hours before giving in and calling the doctors office. The on call answered and said while they had being seeing patients with body aches and fevers come into the office the heart thing was concerning and it was best I go to the ER.</div>
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Fortunately we have a hospital with in about 5 min of our house so I was comfortable enough to take myself and let hubby and kids stay at home since it was about 10:45 at night and they didn't need to be around all those germs. The whole way there I prayed that they not only figured out what was wrong with me but that I didn't get laughed at or scolded about my Lyme diagnosis and my current choice of treatment. You may think its crazy for me to think that would happen but it already has. A Lyme patient has the constant debate when seeing a new medical professional on weather or not to bring up Lyme fear of what they might say. It was also important they found something. I have more been to the ER more than I would like and have had them find nothing which is also typical for a Lyme patient. Or they find something wrong but it doesn't appear life threatening and they don't know what is causing it so you are sent home with no answers. The last thing my body needed was anxiety over going to the hospital so I just prayed. I got the ER and it was packed. People wrapped in blankets with masks covering their faces made the germ a phobe in me come out and I wanted to run the other way. I checked in though and tried to make myself comfortable for the long wait that was ahead of me. </div>
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I made it to triage fairly quickly where all the typical questions are asked and your vitals are taken. The nurse was doing everything with a doctor sitting in to monitor. Temperature was 99.2 so no "fever" but my heart rate was a shocking 130. Based on symptoms and history they were going to run multiple labs and tests. This included a pelvic ultrasound for ovarian pain and blood cultures because this could be the beginning of sepsis since I had been using my port. They also threw in a chest x-ray for good measure. Tests and labs were all done fairly quickly but I had to wait for a room as I needed to be seen in the main part of the ER. I was finally called back at about 3 am. The attending doc went over my history again and agreed with the possibility of sepsis. Another culture was taken this time directly from my port and an abdominal CT was ordered. My heart rate was still running between 120 and 130 and my temperature was now 102. I was blessed with a doc who didn't laugh at my Lyme diagnosis, who didn't really know about ozone as a treatment but was going to research it and was familiar with a herx reaction. Ultimately, they found an ovarian cyst and something on my liver but nothing urgent they needed to deal with. They did give me a dose of IV antibiotics just in case and stated blood cultures would take 24 to 48 hrs to grow something. Since my heart rate had come down to 105 they would let me know go and call me if the cultures were positive to have me admitted. I was released about 6:30 that morning. </div>
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While the pain was somewhat better I was now extremely nauseous and running on no sleep. I came home and went to bed. The waiting for blood cultures brought on some anxiety. I wanted someone to call either way so I knew things had not been overlooked. I decided to call the next morning at the 24 hr mark and was told we will call you if its positive, The phone never rang. I called again the next day and explained I just needed confirmation things were ok (my doc had called to check on me and said he definitely suspected sepsis due to the high fever). I was told to call back on Monday when I could talk to the lab and they would help me out. </div>
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Just yesterday I was telling this little tale to my acupuncturist and when I got to this part of the story I said "and then" and he stopped me. He said "And then? Really Jessica there is an and then?". By now he was used to my crazy stories and we just laugh about it. So,,,I called Monday only to be met with resistance. We can't tell you anything. You have to go to medical records. The ER was wrong. I couldn't even fully get my question out before it was apparent I had to go get copies of my medical records for my 8 hr stay to find anything out. The process wasn't terrible bad but the results were a little shocking and once again left me with the thought that the medical community is in trouble and certainly leaves something to be desired. It is imperative that you are your own advocate and must not take everything you are told at face value. </div>
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As I flipped through the 40+ pages I was handed I found a variety of information some of which I had never heard about myself. Blood tests indicated high CRP, WBC and Neutrophils with low Lymphocytes. Urinalysis showed high ketones which most likely were from my new eating habits and the fact my body was burning fat instead of sugar. The urine culture was contaminated and they wanted a repeat which of course never happened. The 3 blood cultures all indicated no growth but they were only preliminary reports and 2 of them were given before the 24 hr mark. While my ovarian pain was on the left side they found a cyst on the right. I can only assume the pain is related to the varicose vein in my pelvis we discovered a year or so ago. Chest x-ray was normal. Now on to the CT. It is noted that I have a probable hepatic hemangioma on my liver. Follow up is needed to confirm this but there is not much concern. Up to this point everything I read they had mentioned to me with the exception of the blood cultures. </div>
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Now I begin reading things I have never been told about myself and most of which I have never heard of. This is where I am just special like that. Random weird and sometimes rare abnormalities that may or may not be something of significance. But in any case it would be nice if someone mentioned it. If it's important enough to note in the medical records could it be important enough to mention to the patient? The list includes a small umbilical hernia, a sclerotic focus on my left iliac bone, extrarenal pelvis bilaterally, a cyst on my lower right kidney, slightly enlarged spleen, and multilevel bulging discs causing a narrowing of my spinal canal and a diagnosis of degenerative disc disease. Reading these things caused mild a panic and serious frustration. Trying to weed through what may be important and what was not was something I had to do until I could see my doctor and confirm. This is where some knowledge can go a long way. I like to feel some what educated when discussing things with the doctor. I don't want everything to be over my head and I don't want something to be missed. After all people in medical community are just that, people. Prone to mistakes like everyone else. The issue is their mistakes can be life or death. (I almost terminated the life of my youngest daughter due to someones mistake. A story I may have shared years ago but will share again another day) After consulting my chiropractor and doctor it was decided most of these things were of no concern and just extra information. I do have to follow up with an ultrasound of my liver.</div>
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As far as my my blood cultures and treatment go...my doctor agreed there needs to be a final report on my blood cultures and is in the process of obtaining those. He also believes that after almost 5 years of having my port in there is most likely bacteria in the end of my line and each time we use it we would be flushing that in to my blood stream causing what could lead to sepsis. It has to come out. So tomorrow I go and have "Donald"removed. Ozone has been suspended for the time being and we will reevaluate once the port is out. I am nervous about doing IV treatment with out it but will do what ever is deemed necessary. The Interventional Radiologist office will be sending the tip of the catheter in to be cultured for bacteria once it is removed. I am concerned about the possibility of bacteria being dumped in to my system during the removal and have left a message requesting antibiotics just in case. </div>
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I am hoping to get back on here and check in in a few days to let you know how things went and if I have any new information. I certainly would appreciate extra prayers and good thoughts tomorrow. Thank you to everyone who has followed my journey over the years. It is strange to put this information out to the world sometimes, but it is therapeutic for me to get it out of my head and some of you really want to know. So again thanks for your support. </div>
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Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-37220660340823011052015-09-14T09:55:00.000-07:002015-09-14T09:55:47.618-07:00Sugar Demon<div style="text-align: justify;">
Well, I've successfully completed the first week of my Whole30 and am starting day 9. It hasn't been easy but it's getting easier. I have never quite mastered the cooking world. I mean I can get buy okay and lucky for me my hubby is fairly simple guy but I don't break out a cook book often and stay away from anything I would consider complicated. Add in the fact that our family has been in a serious eating out rut due to my level of fatigue and our schedule it is has been a little of challenge getting back in the kitchen. I don't doubt that these things contributed to my first being a little bit of challenge. Lots of tuna salad, scrambled eggs, and chicken filled my plate each day with a side of celery, carrots, and apples. I am determined to figure out some new things to eat this week. I really need some red meat in the mix.</div>
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I have been reading labels for a while but it is really eye opening to read the label of everything you area considering putting into your mouth. While I am allowed to have deli meat or any meat for that try finding bacon, turkey, ham or even sausage without sugar in it. I was so tempted to throw things in the grocery out of frustration with every label I read that had something non compliant in it. I finally got a little bit of break at Costco and found Adelle's Chicken Apple sausage that I could have and I splurged on shrimp platter for my self. Of course I had to forgo the cocktail sauce but at least it was a change.</div>
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The first week was also filled with lots of symptoms again not knowing for sure weather it was the ozone or the change in eating habits or just a major flare. I suspect the first two are likely culprits. The ozone probably killed some bugs and the lack of sugar probably made the candida and lyme angry. So I was left with lots of fatigue, pain and weakness in my arms and legs and twitching episode or too. The last few days have mainly been filled with fatigue so I consider that an improvement. </div>
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Unfortunately my cravings have not gone away. There are a million things I would eat at the drop of a hat right now but the one thing they all have in common is sugar. I have decided I don't just have a sugar monster, or a sugar beast. No I am dealing with a sugar demon. I really shouldn't be surprised, I mean I have been a sugar-a-holic from the time I was a kid. In the summers when I would go to work with my dad at the construction site I would take every opportunity to eat the sugar cubes in the job trailer. In highschool a snack would be Reese's Peanut Butter Cups and a Dr. Pepper. Oh and when my best friend and I were having a sleepover so we could head to the beach early the next morning I would make sure I brought ice cream for breakfast. While I was hoping those cravings would have started to fade already I do believe they will in time. I'm beginning to think that I may be looking at a Whole60 or 90 instead. I do know the husband and kids are going to have to participate in the next round. I want the girls to start making those much healthier choices now especially with their recent Lyme Diagnosis. </div>
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I guess that's it for now. Time to figure out whats for dinner! I'll check back in in a few days.</div>
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P.S. I forgot to mention the other thing you give up for 30 days...the scale. It will be fun to see the changes </div>
Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com1tag:blogger.com,1999:blog-8418367038402725149.post-25114254922122148842015-09-07T15:38:00.000-07:002015-09-07T15:42:19.091-07:00Lyme Times 3<div style="text-align: justify;">
I was thinking it was time for an update and that had probably been over a year since I last posted anything. I was surprised to see that I had actually posted something back in February but honestly had no idea what I would have said and had to read it to refresh my memory. Figuring out where to begin and what to tell any of you who may read this is always a difficult task. My thoughts are so scattered and I get distracted easily. While writing down a list of things I want to cover and in an order that makes sense could be useful the effort and time it would take me to do that would probably mean I would never get to posting anything. Frankly most of you are probably used to my rambling at this point especially since I seem to talk the same way. Just be prepared the brain function has diminished a little further...here goes nothing.</div>
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I'll start with an update on my girls who turned 12 and 9 over the summer. Both of my girls have suffered from some seemingly random complaints and symptoms over the course of their lives. The list has included hives, chronic stomach pain, leg pain, nystagmus and dizziness to name a few. On occasion these things have warranted a trip to the doctor or specialist and resulted in numerous tests. We've gone through blood tests, x-rays, mri's and other tests checking for allergies, hip dysplagia, brain tumors, dyslexia, and cystic fibrosis. The diagnosis's we were left with were allergies, sensory processing disorder, a chiari malformation and a syrinx. When I was diagnosed with Lyme back in 2010 and discovered it was very likely that I had passed it on to my girls during pregnancy some of the things they were experiencing began to make sense. I knew we needed to get them tested for Lyme at some point but also knew that a blood test wasn't definitive. This summer I think we reached a tipping point and we finally had the test done about a month ago.</div>
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My oldest daughter had been experiencing random dizzy spells for over a year. They were only lasting 30-60 seconds and never seemed to correlate to anything specific. I was bothered by them though and took her to her pediatrician. To make a long story short we were sent to a cardiologist, diagnosed with a completely normal "arrhythmia" and told if the dizziness continued to see a neurologist. So we ended up in the neurologist office earlier this year. The doc confirmed my daughter had vertigo and ordered an MRI any possible causes. The MRI showed a small chiari malformation where the cerebellum was being pushed down into the spinal column. We were assured it really wasn't a big deal, that it probably wasn't even the cause of the dizziness and that out of an abundance of precaution we should do an MRI of the spine but to expect nothing to come of it.</div>
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When the phone rang just a day after the second MRI I knew they must have found something. While the doctor did her best to remain calm it was easy to tell she was still in shock and not sure how she should tell us she had been wrong. The MRI revealed a syrinx between the C4 and C6. This means that spinal fluid has been forced inside the spinal column. We were told we needed to consult a neurosurgeon. The initial recommendation from the pediatric neurosurgeon in San Diego was to do decompression surgery which required removing a small piece of skull hopefully relieving the pressure on the cerebellum and allowing the spinal fluid to go back to normal or at least not get any worse. We got a second opinion from a pediatric neurosurgeon in Orange County who advised against the surgery for now. After a 3rd MRI, some research, prayer and another doc appt we decided against the surgery for now and will just monitor the situation. Neither doctor believes this to be the cause of the vertigo. So we are left with something new to monitor and still no answer for the vertigo. This was my breaking point and I knew we needed to follow through with testing and see if Lyme was something we were dealing with.</div>
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I really like our pediatrician, the fact she is somewhat close by, and that I have Children's Hospital urgent care around the corner from our house, I didn't want to change doctors just for the purpose of Lyme so the decision was made to take the girls to my doctor and pay cash. Unfortunately I had to take them alone and I was so worried about the screaming that would come from my 9 year old over getting a blood test, It was a very tense morning, and it took 10-15 minutes of physically holding my baby down to get the blood drawn but we did it. Now it was just a waiting game. We did the test thru IGenix which is one of the best labs for Lyme testing and after about four weeks we were able to meet with the doctor and go over the results. I'll spare you all the details of how to read a test and what they really mean but the bottom line is my doctor diagnosed both girls as having congenital Lyme disease. I can't say I was shocked and it wasn't going to change much but know we had an official diagnosis and could go forward with formulating a game plan. Although my doc would really support antibiotics we are going to approach this from a much more natural stand point for now and see where we can go. Besides the physical side affects of abx there was some concern that being on multiple medications for months would have them begin to take on a sick mentality. We want them to live life to the fullest and not let their brain trick them into thinking they have anything to hold them back. Obviously we have a long battle ahead with Lyme times 3 of us. Praying we can get a handle on this before it gets our of control.</div>
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Now on to me. I am still believing that 2015 will be a game changer in my fight. Besides my own determination there has been some much needed to exposure to this disease and new ideas for treatment seem to be constantly emerging. Some unconventional blood testing showed I was probably suffering from leaky gut, serious candida issues, among some other things and it was the push I finally needed to clean up my diet for real this time. Just before Mothers Day I decided to cut out gluten and significantly reduce all grains, dairy and sugar. I must say I was proud of how well I did and it certainly wasn't easy. Turning down the fresh bread at a restaurant, avoiding crackers, chips and the fresh baked chocolate chip cookies, cheese on anything and pizza at the team parties was hard but overall I was more successful than I had ever been. While I lost between 10 and 15 lbs with no exercise, the bloating went away and my skin cleared up a bit I had no noticeable improvement in how I really felt. I couldn't say my pain was gone, I had more energy, or my brain was working better, It was frustrating and while I didn't revert to my old ways I definitely began to give in more often. This past week I was at my doctors office having my second ozone treatment (more on that in another post) and he told me my blood looked good. We began talking about the changes I had finally made and he encouraged me to do the Whole30. I came home and began researching right away and decided I needed to go for it. There are a lot of great success stories involving Lyme Disease and I knew it was worth a try. I am planning on keeping more of a running blog about my Whole30 experience like I did when I went to Hansa a few years ago. I'll give you the basics of the plan (diet is not the right word for this) and tell you how the first 2 days have gone. </div>
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By doing the Whole30 I have committed to no: added sugar of any type, grains, dairy, legumes or alcohol for a minimum of 30 days. NO CHEATS! NO SLIPS! NO EXCUSES! Meals consist of protein lost of veggies, some fruit and some good fat. In preparation for this I decided to get a little crazy with eating junk for a day or 2. Not smart as I my gut paid for it but I got in a slice of cheesecake, the most amazing chocolate pudding, a soy latte or two, a quesadilla and cheese enchilada, some pita chips...you get the picture. The timing of this may not be great as I am finding that my ozone treatment is stirring stuff up but I determined to push through this. My pain the past day or two is at an all time high. My abs hurt like I have been doing crunches for a week and I've done nothing that should make them hurt. I mean it hurts to turn over in bed. My exhaustion is through the roof and I was essentially bed bound yesterday sleeping most of the day. I'm really a wreck. I'm waiting to see an ENT as I have had a sore throat, losing my voice, trouble swallowing pills, and a host of other problems for over a month now. Needless to say I am kind of in a desperate spot. This will make it somewhat difficult to determine what things are coming from diet change vs treatment or just a flare in symptoms but it almost doesn't matter at this point. I can say extra prayers are certainly appreciated. </div>
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Back to the Whole30. I haven't been super hungry these first two days but my cravings have been significant. I really want chocolate and just about anything I can't have but I'm holding on to hope that these cravings will pass. It is truly a moment by moment decision to stick with this. I'm trying not to focus on day 30 but on each moment or craving as it comes. From what I have read, I may be doing ok craving wise by day 10 or so but I also may be wanting to punch everything in my way. So my friends be ware. Maybe I will just stay in my room that day. </div>
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Right now my overall plan includes lots of supplements putting me at about 25 pills a day, essential oils to support my body on a million different levels, blood ozone, and the Whole30. Things I am looking at possibly doing next....UVL, LDA and even dare I say medicinal marijuana. I will post more on all of those things as I keep you updated on the Whole30. If you have done the Whole30 I would love to hear about your experience. Until next time </div>
Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-18239685444017602682015-02-10T13:05:00.000-08:002015-02-10T13:05:31.694-08:00Check Engine Light<br />
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Happy New Year. It has been a lot longer since I last posted than I thought. Reality is I'm not sure much is different. In fact in some ways I'm feeling almost like I did when I started this whole thing. I guess after unintentionally taking a break from everything I'm ready to get back at it. I'm praying that 2015 is truly the year I can put this illness to rest at least for a while. </div>
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Not that long ago, I was having a moment of frustration over how bad I was feeling. I kept thinking there has to be something we are missing, I actually still kind of feel that way today. While there are so many similarities in my case to many others I have met there are also some definite differences with me and I haven't quite found what the missing piece is. I usually think that being different and your own person is a good thing, but in this case it's starting to drive me a little crazy. I have heard so many times how my symptoms or issues don't seem to fit the box. Let me tell you this is one area of my life where I don't want to be special. So back to feeling like we had to missing something...the thought popped into my head how much my body is like a car whose check engine light is constantly coming on but no mechanic can seem to find the problem. My body starts acting up and I know its time for another doctors appointment. We go over the problems I'm having and the doctor has an idea and runs some tests. By doing that my bodies check engine light is cleared. Just like the mechanic plugging in the code reader and clearing your check engine light when you bring the car in. You no sooner leave and your check engine light comes back on so what they thought they fixed wasn't the real issue. I leave the doctor, the tests come back normal but the problem continue.</div>
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I can honestly say the only symptom I have had any relief from is my burning nerve pain. It is still there on occasion but the not nearly as frequently as it was. The intense weakness and pain in my arms that was one of the main reasons I knew something was wrong it back. I have occasional moments where the words coming out of my mouth are gibberish like I'm having a stroke. My heart has been acting up again and has caused me to almost pass out twice in the past two months. My fatigue continues to be my biggest issue as it is a daily problem and I am back to being in bed a large part of my day fairly often. Bone, joint and muscle pain, brain fog and memory issues, and my uncontrollable muscle movements are all still issues as well. (I'm sure I'm forgetting somethings but you get the picture) I also have been dealing with an increase in intense pelvic pain that has bothered me on and off for years. After multiple tests and doctors visits I was diagnosed with pelvic varices which is varicose vein(s) in the pelvis. I have one very large vein that acts up on the left side but as things go with me the doctor feels that based on my symptoms the procedure to embolize that vein would not provide me with relief so he didn't want to put me through an unnecessary procedure. I also still have my port although it has not been used in a few years.</div>
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I didn't really know where else to go for treatment and I am not sure my doctor understood how bad I was still feeling. I knew I needed to let him know that I needed to do something and attack this head on again so I saw him last week. I made it clear that I am sick and tired of being sick and tired. We decided that I would attempt the latest treatment in his office and I knew that in order for me to have a fighting chance of this working I had to address my diet and detoxing like I never had before. So here is the game plan. </div>
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Number one is putting myself first. I have to say no to things outside of immediate needs for my family. Unfortunately I allowed myself to take on the roll of team mom for Jenna's softball team but I won't allow myself to take on anything else with the exception of doing what I can for some very loved family friends fighting their own health battle. No helping the teacher, going on field trips, not even taking on photography jobs for the moment. It breaks my heart to feel like I'm checking out on life but I know if I don't force myself to do this now, my health is going to eventually do it for me. If that happens, I will be in a very critical situation and I certainly don't want that to happen. </div>
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Second, after much struggle,I am really starting to dial in the diet. I am realistic about the fact that this will be an on going challenge for me but I have finally made some big progress on this front. My gut is a big priority for me. Most of your immune system is in your gut and I know mine is not functioning properly so I have to got to get it healed. </div>
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Next I will be focusing on detoxing with my main goal to use my FIR sauna everyday. I am trying to do this for a couple of weeks prior to starting the bug killing part of my treatment. This is what Hansa in Kansas focuses a lot on and I know it seemed to help when I was there.</div>
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For bug killing and immune support I will be doing a couple of things. First I am excited to be starting an essential oil protocol. I have slowly been incorporating oils into our families treatment for the everyday cold and flu stuff and can't wait to really start using these to their full potential whenever we can. My doctor doesn't want me on any antibiotics right now which was kind of surprising but I admit I am happy about it. I will also be starting UVL therapy. I am definitely nervous about this as they cant use my port for this treatment and they have to use a fairly large needle. In case you didn't know, needles and spiders are the two things I hate the most. Basically twice a week I will go into my doctors where they will use a 22 gauge needle to access a vein and insert a two inch catheter. A UV light is put in to the catheter (they use UV light for sterilization in a lot of places) and as my entire blood volume passes by that point all of the bad things like viruses and bacteria are killed. My doctor recommended doing the hyperbaric chamber in combination with this but it is quite expensive. In its place I will be riding an exercise bike in a room with high oxygen levels in between treatments.</div>
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My daily routine for supplements and meds other than oils is looking like this:</div>
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My latest lab results indicate low Vitamin D (on going issue) and severely impaired immune system. The CD 57 is an immune system marker specifically affected by Lyme Disease. One of the leading authorities on Lyme Disease has said anything above 60 is good for a Lyme patient. However to be in remission with little chance of relapse you should be symptom free and that number should be closer to 200 for a few months. When I first got diagnosed my number was just above 60. Shortly after treatment started my number dropped (which is normal) and the lowest I got was about 27. At one point my number was back up to close to 100. The results I got today have me at a 16. Which is probably one of the reasons I have been feeling so bad. Needless to say I have a lot of work to do and need to fix this before it gets any worse. </div>
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As a side note we are finally getting both of our daughters officially tested and will be treating them accordingly. I will include more on their situation in another post. As always, thank you for checking in and your prayers are always appreciated. I will try and do a better job of keeping things updated when I can. Wishing you all a healthy and happy 2015.</div>
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<br />Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-563856519476372792014-03-17T14:15:00.001-07:002014-03-17T14:17:07.736-07:00Trust Without Boarders<div style="text-align: justify;">
I love music. I'm not partial to one particular type or even one era. Oldies, country, punk, rock, reggae, instrumental, Christian. Whatever speaks to me. Over the last couple of months the song "Oceans" by Hillsong United has become my anthem or even my prayer. Things seem so confusing that the words of this song are the only thing that really make sense. "Spirit lead me where my trust is without boarders, let me walk upon the waters, where ever You would call me. Take me deeper than my feet could ever wander, and my faith would be made stronger in the presence of my Savior." </div>
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The last couple of years I have struggled to give up control of my circumstances and trust God. Although I have made progress I'm not there yet. I'm not sure I even know where <i>there</i> is but its apparent I have some miles left on this journey. I keep catching myself putting limitations on my trust in God. It's like "Lord I trust you to handle this BUT"...I'm going to do this other thing just in case, the timing of things isn't right, this other idea may be better. The excuse for not trusting is that I am exhausted. Frankly the thought of continuing on like this much longer is just overwhelming. Things are not hopeless just overwhelming.</div>
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Unfortunately things with my health have had little improvement since I began treatment in 2010. Some things have improved, others have left and come back, some have gotten worse and even some new symptoms have appeared. I do my best to keep quiet about how I feel on a daily basis because I know it doesn't do me any good to verbalize the negative. Plus if we are being honest, you frankly don't want to hear it. For many of you this may be a shock because what you hear about is the kids, softball, photography and occasional camping trip that make up a lot of my life. These things bring my family and I joy and are required to keep hope alive. They are required so my kids can go through their day to day life with some semblance of normalcy. As of right now I could not hold down a full time job of any sort. My brain function is too diminished to return to my career in the fire service in any capacity. My physical exhaustion limits a lot of my activity and I'm back to having to take a nap almost everyday. The days I push myself (Disneyland, shooting a couple of softball games, camping) I pay for dearly. That is a choice I make for the benefit of my family and actually for my sanity. </div>
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I am currently still at a loss over what to do next for my treatment. I believe my gut has been destroyed by all of the antibiotics I've taken these past few years, and for that I really need to try and give them a rest for now. My attempt at a big lifestyle change in January with the Daniel Plan was derailed but I am ready to give it another shot. I don't really have a choice. I'm doing as much natural stuff as possible and just trying to get the money together for the next step.</div>
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One of the hardest things to deal with has been the health of my children. We are in such an awkward position with trying to get them the help they need while trying to work with in the confines of our insurance. My 10 yr old continues to show some symptoms of Lyme and was recently referred to the cardiologist for an irregular heart beat and dizzy spells. The good news is she has a common sinus arrhythmia and the doctor does not feel we have anything to be concerned about. The bad news is, she still gets these dizzy spells for unknown reasons and the next step would be to see a neurologist. It scares me to think I will most likely be facing the same fight with doctors about my kids that I have faced for years myself. The last thing I want is to be accused of making things up about my kids. Finding the right doctor and being able to afford them is no easy task but my kids deserve to be well. Our younger daughter has been going through a lot the past year. We got a diagnosis of Sensory Processing Disorder about a year ago and have trying to get her some much needed help. After being told by one doctor that she needed occupational therapy, being referred to OT for an evaluation by our pediatrician, and having the head therapist agree that therapy was needed we were just informed OT was denied by our insurance because they don't believe it is medically necessary. In the meantime, my daughter has been having some episodes of nystagmus (eyes moving rapidly back and forth). This has led to a referral to the neuro-opthamologist for an evaluation. That appointment is scheduled for the end of this week. Although there may be no known cause for her nystagmus, she has not had this issue since birth. "Acquired" nystagmus seems to be most commonly caused by medication side effects, injury or disease. She is not on any medication and has had no injury we are aware of so that leaves diseases of the inner ear, a brain tumor or ms as potential causes. (Add a ruptured cyst and broken toe with our one dog the past two weeks and I am just drained.)</div>
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This is where I am left praying that I am able to have trust with out boarders, that I am led deeper than my feet could wander and that I can keep my eyes above the waves. This is not the life my dreams were made of as a little girl. But despite the struggles we have been blessed. Praying that we turn the corner sooner rather than later and reminding myself in the mean time that my track record for getting through bad days so far is 100%. I will try to give an update after my daughters appointment this week. Thanks for keeping up with our journey and letting my ramble. </div>
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Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-38308048544372991382014-01-04T12:00:00.000-08:002014-01-04T12:00:00.226-08:00 A New Year, A New PlanI hope you all had a Merry Christmas and are on your way to having a Happy New Year. How do you feel about New Year's resolutions? I personally like them or at least the idea. I enjoy reflecting on the past year and thinking about what I want to accomplish in the year to come. Like many people though, my resolutions have never made it very far. I've always allowed something to derail my good intentions and end up with a sense of failure and frustration as the year comes to a close. <div>
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This year is going to be different though. This year I have a new plan. One thing God has been teaching me over the past few years in my battle for my health is that I am not in control. On more than one occasion, God has allowed me to get to a point where I have nothing left I can do but rely on Him. You would think that after just a time or two I would have gotten the message loud and clear. Instead this is a lesson I continue to learn and actually may be learning the rest of my life. See it's been somewhat easy to call out and surrender when I feel like I am literally on deaths door step. But what about when I am battling with procrastination, or not eating the cake, or taking my medication? I realized that I was learning to rely on God for the big things but the little things I took upon myself and when I didn't succeed, I either had a million excuses or a thousand negative things to say about myself and my failure. Here is an example.</div>
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I have continued to search for things I could do to help me get well. What haven't I tried? Are there any new treatments out there? Every time I have brought something up my husband has gently reminded me that I haven't done the most basic of things my doctors have instructed me. Things like drink plenty of water, use the sauna daily, take my pills, and most importantly....CHANGE MY DIET! I know many of you probably are probably thinking it is crazy and just plain stupid that I did not do something so seemingly simple that may have made me feel better. Believe me, it is not for lack of trying. I have tried, repeatedly, numerous times a year since my diagnosis and have had no success. The problem is each attempt has been fueled strictly by my own will power. I was not taking the time to give the issue to God, to ask for His power to help me be successful in my attempt. Will power was not my only issue. I struggled with negative self talk and thoughts and knew I needed to changed the way I thought. I was learning more about the mind, body, spirit connection but wanted to make sure that what I was reading wasn't crossing any lines of what the Bible said.</div>
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Just about a month ago I heard a little blurb about this thing called The Daniel Plan. I figured I should at least check it out. To my surprise it seemed to be everything I was looking for and needed. A Bible based plan, that focused on the health of the whole body. It basically said my eating habits, exercise, thoughts, relationships and focus on God were all connected to each other. They all affected each other and success in living a healthier life and becoming the healthiest person I could be was not only my desire but God's desire for me but I had to give up control. </div>
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So here I am with a new year and a new plan. To add to my excitement about the year ahead is the fact that there are some a few promising treatments for Lyme and related conditions that I haven't tried. (It is now really considered MCIDS or multi chronic infectious disease syndrome). Going to Tijuana to have a procedure that heats my blood up to 108 F is one of them, but more on that later. In any case, I am really trying to focus on being positive about putting my illness into remission this year. Even though the research shows I will have this disease forever and I have tried to come to terms with that I have recently realized that is not true. Some day I will have a new residence in heaven and I will no longer be sick. So I am choosing to view my illness and any trial I face for that matter in a new light, and really in the truth that it is temporary. </div>
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The Daniel Plan itself is a 40 day program which will hopefully help build life long habits. I am hoping to do my best to blog about my journey. I definitely encourage you to check out The Daniel Plan if becoming a healthier you is on your list of to do's. If you are doing the plan and would like to join our support group on Facebook for extra encouragement let me know. Here's to a healthy and happy 2014. </div>
Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-23598467886910429682013-09-20T12:35:00.000-07:002013-09-20T12:35:54.499-07:00A Race I Didn't Enter<div style="text-align: justify;">
One of my proudest accomplishments was completing the 2008 San Diego Breast Cancer 3-Day. I chose to enter that event, I did the fundraising, I trained, and I walked every step of that almost 60 miles. I was so proud of myself for sticking with it. It was truly an amazing feeling to walk across that finish line knowing that I pushed past my aching tired muscles, blistered feet and being away from husband and kids and I did it. . </div>
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Now whether what followed was strictly brought on by the physical stress of that event or whether it was a combination of things or strictly coincidence I'll probably never know. Shortly after completing the 3-Day I woke up with some unexplainable muscle pain. Over the next few days the pain became debilitating and severe and as it faded I was left with extreme weakness in my arms. It was so bad in fact, I couldn't drive or even write. Off to the doctor I went and that pivotal event is what led me on my journey to a final diagnosis of Lyme Disease and related issues a year and half later. </div>
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As I was mulling things over the other day, I thought how God is like my personal trainer and that the last 5 years were like a race. I would say a 5k. The problem is, it is a race I didn't enter. My "trainer" entered me in the race believing/knowing that I would make it. That I would cross the finish line. I couldn't have disagreed more but have I have pushed through, with my trainer by my side. Day by day, moment by moment, I have pushed through and made it this far. The issue I'm struggling with now is the fact that my trainer has once again entered me in a race I didn't ask to run. I feel like I'm starting the most grueling marathon, no lets say triathlon in the world. The run is all up hill. The road race is all up hill on a pothole covered road. The swim is in the midst of rough waters with almost hurricane force winds. I may have the best trainer in the world, but my initial reaction is He's nuts and He has set me up for failure. I already feel like I've lost the race and I have only run the first hundred yards. In my rare moments of clarity I acknowledge that those feelings are false and that He knows what He's doing and I am doing my best to trust Him every moment of every day. My faith is being tested and the reality is I am scared. I am scared, and angry, and frustrated, and defeated and for me the peace that passes all understanding has not set in yet. The only thing I can do is hold on to the hope that His peace is coming and when all is said and done I will be victorious and win the race of my life.<br />
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Just over 3 years after my life changing diagnosis I sit here not feeling much better that when I started. I don't know that overall I am any better. A few things have gotten less problematic as other things have gotten worse. My burning nerve pain rarely makes an appearance while my brain function continues to get worse. I had a few days of fumbling over my words and not making sense a few weeks ago it made my wonder if that is what happens when someone has a stroke. My heart continues to cause me problems to which I still have no clear answer and the fatigue continues to plague me daily. Some days the only thing I manage to do is get the kids to and from school. My immune system is back in the trash. I'm back on multiple antibiotics and have been wondering where to go and what to do next. What else can I try that I haven't? Not much with out winning the lotto. We have held our head above water with the generous help of friends and family (for which we are forever grateful) but the bank accounts are drained. Insurance still doesn't want to play nice in the sandbox of the Lyme world and without winning the lotto the options become very limited.<br />
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After talking with my doctor, we have agreed it would be worth it for me to try something called ozone. It is not a new procedure but more and more evidence is coming out stating the ozone is beneficial to people with Lyme. I will go in once a week and have a pint of blood removed. As it is removed it will be passed under UVC light which should kill different bacteria and such from my blood. It will then be infused with ozone which is basically adding an extra molecule to my blood. Then it will pass back under the UVC light as it re-enters my body. The procedure only lasts about 20 minutes and I will start with about 10 sessions. I am told it will very possibly be a rough 3 to 4 months once I start but I should see improvements after that and then maybe only do it occasionally. This costs roughly $150 a treatment. It's not exactly cheap but it is better than the cost of a very promising treatment the doctor talked to me about. Although this other treatment could be shared with my daughters the minimum it would cost us for the year it takes to do is $17,000. Something that's just not lying around at a moment.<br />
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This brings me to the toughest thing I/we have been dealing with over the last few months. I know I have mentioned that both of my girls most likely have Lyme. In fact during our visit to the Hansa Center last year, they confirmed that my now 10 year old in fact had active Lyme. (see previous posts) We did some natural herbal and homeopathic treatments for both of our girls and have been in a constant quandary of what to do next? We need to do the blood work which is not cheap and we need to decided what doctor we are going to take them to. I recently talked with the doctor I wanted them to see and he has stopped taking insurance so our options are slowly being narrowed and really we will be left with one. My girls have doing ok but very recently things have changed and kind of quickly which is where this being thrown into a triathlon has come from. My youngest daughter who just turned 7 had been struggling in school last year. Without going into all of the details the bottom line is she was diagnosed at the beginning of summer with executive functioning issues and Sensory Processing Disorder (SPD). I will have to write another post to give you all the details of those two issues but they are fairly significant. A lot of autistic children suffer from SPD but my daughter does not fall on the autism spectrum. With the number of autistic children testing positive for Lyme I felt that it was probably the same case with SPD. Sure enough between my doctor and the research I have doing it is very evident the Lyme can absolutely trigger SPD. And very similar to Lyme, SPD is not well accepted in the medical community. I was kind of told by my pediatrician, whom I really like, that in general the medical community doesn't care if your kid struggles with reading, writing, reversing numbers, etc...Insurance certainly doesn't want any part of of it. So we are left trying to pay a minimum of $325 a week for the therapy and help she needs or doing the dance of wording things so that insurance will at least approve an evaluation by an occupational therapist. If we can at least get an eval, then we pray we get a good OT that can determine there are things my baby needs help with that the insurance won't throw a fit about. We are currently waiting for the approval for the evaluation. In the meantime my little one is starting to have a really difficult time and my husband and I are so unprepared with how to deal with this. Daily meltdowns make you feel like you are dealing with a spoiled 3 year old but the reality is she just doesn't know how to deal with how she feels from everything in her outside world. It is heartbreaking and frustrating on a daily basis. Part of me can't help but feel the extra difficulties of the past week are somewhat due to a strong antibiotic she was put on for an ear and sinus infection and that it is killing off some Lyme bacteria causing a flare in her symptoms.<br />
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The bottom line is all of this at the moment has left me feeling very guilty. Every once in a while I can tell myself that this is not my fault. This is still so new and overwhelming though that I can't help but fall apart in desperate moments blaming myself for giving my girls Lyme and being the cause of their struggles and pain. I didn't know a heart could break so much and still manage to beat. I pray constantly that God just takes this away from them. As a mom, I want to take it all away. I hate to see my kids suffer more than anything. Prayer is about all I have right now as we try and navigate these rough waters. I'm sure I will be able to look back on this in the end and realize my trainer had it under control. For the moment, I need to relinquish my need to try to fix it myself and remind myself that God is ever faithful. He sees our struggle is by our side every step of the way. Breath by breath I have to continue on to the finish line of what seems to be an impossible race, regardless of the fact this is a race <b>I </b>didn't enter.</div>
Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-33519794777734436382013-01-24T13:00:00.000-08:002013-01-24T13:00:08.288-08:00A Big Year Full of Nothing<div style="text-align: justify;">
Happy New Year to those of you I haven't had a chance to wish it to yet. I hope you all had a wonderful Christmas and have had a great start to 2013. Things were a little different for my family over the holidays this year with my mom out of town taking care of my grandma, and my husband working Christmas Day and also getting called back in to work Christmas Eve on an emergency call that lasted all night. (He works for a local water authority) Despite that we still had a great time and had so much to be thankful for. We still do.</div>
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Thanksgiving really got me started on a journey of reviewing my life...where my family has been, where we are going, and all that we have been blessed with. I have really been focusing on getting rid of stuff and have gravitated toward the idea of becoming a "minimalist". As I took some time to read up on minimalism and simplistic living it really appealed to me. I made up mind that my big resolution or goal for the new year was to minimize. My family has been easily overcome with stuff. It clutters up our physical space, takes a lot of time and attention to maintain and deal with, and actually clutters up our minds as well. As I have moved from thinking about this new way of living to actually implementing it I can say I see a difference already. I won't pretend the transition will be easy, especially for the kids but I know how much better it will be for my family once we are there. The basic idea behind this concept, at least for my family, is that we reduce the amount of stuff and things so that we have the room, time, and energy for the things that matter most. God-family-others. </div>
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We have been focused more on putting others first. We have all committed to 26 acts random acts of kindness (after the Sandy Hook Elementary shooting), the girls have been involved in various kindness and service projects at school, and I am working on really finding ways I can give back. This has led to a general positive outlook on life. Once again, the response I get from strangers when out in public is amazing. People are friendlier, smiles are exchanged more often and the general feeling is just happier. I was reminded that this was how I felt after first coming back from Kansas just a year ago. Choosing to be positive and focus on the positive really does make a difference. Not always easy but it really is important and does make a difference.</div>
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The whole minimalist thing is also bleeding over to other areas of my life and it just makes so much sense. I am going with a much more simplistic and natural approach to my medical treatment and trying to do the same for my kids. Our visits to the NUCCA chiropractor have gotten more interesting and are really a front line approach to dealing with whatever ailments we are facing. Getting the body in alignment and functioning the best it can on its own is critical. This has led us to food sensitivity test. As an energetic type of testing this is much different than what western medicine would tell us we need to be doing but it just resonates with me. While we had already started changing our diet, we fell of the wagon during the holidays and while we have trying to get back on track, the testing has certainly forced the issue. The girls are the only one who have been tested so far and I go in tomorrow. The test checks for sensitivities to about 500 foods, baking items, food additives, and supplements. The girls both came back with issues regarding gluten, wheat, corn. One has issues with other grains as well. Yogurt is an issue for one. Chocolate, dairy, and eggs are an issue for the other. We are to avoid these foods completely until the girls have been "cleared" of their sensitivity. This is very similar to what Hansa did as far as being able to get rid of allergies. You don't need to suffer from food or other allergies for ever. Many of them can be alleviated by having the body reset. Ok, enough said. I really feel for people who have or have family members that have this type of issues. You really have to read everything. (I jokingly told the doctor he could not check me for chocolate, coffee, or shellfish) Hopefully the things we have to completely avoid will only be temporary. He did say gluten is one that we may not be able to get rid of but we are trying to avoid it anyways so we could survive. We are having to focus on very simple, whole, natural foods which just fits in with everything else. I am carrying this theme over to my workout life and just keeping it simple. Moving as often as possible is the goal. For the first time I am really giving my spiritual life a simple makeover too. Read the Bible and prayer more. That's it. I have been easily caught up in what Christian book, advice, study I should be doing focusing on and finally acknowledged that everything I may be searching for is right there in the good book itself. I set a personal goal of reading the whole Bible in a year. I have thoroughly enjoyed what I have read so far. Even the complicated lists of Kings names, and genealogy, I am spending time in the word and it has been a real blessing.</div>
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We are definitely being faced with some challenges right now but this change in our lifestyle has really helped keep me from getting overwhelmed. I find that I can handle stress better. Although it is a challenge some days to keep the positive outlook and to not try and find happiness in the stuff and the things, it is a challenge I definitely welcome. I am expecting this to be an amazing year that is filled with so much yet filled with "nothing" at the same time.</div>
Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-9639214194818040912012-11-08T15:17:00.000-08:002012-11-08T15:17:04.347-08:00Do you NUCCA?<div style="text-align: justify;">
The past few weeks have been another roller coaster of ups and downs. They have been physically and emotionally exhausting, filled with fatigue and some down right scary moments one of which almost sent me to the hospital. In the end though, they have been filled with hope and I feel like things may be finally turning around. </div>
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I can honestly say that the decision to change my diet ( really our diet as a family) and begin exercising again have been very important decisions on this path to getting better. Although I really wish I would have made those changes long ago there is no reason to dwell on the past. I didn't believe I could really alter my craving for junk but it has happened. I do green smoothies, juice and eat a lot of cooked vegetable almost daily. Most of which are organic. For me juicing and cooking my vegetables makes them much easier for my body to get nutrients out of. It has been so taxed that digesting raw food can take too much work. I have gone almost gluten free and have reduced grains as a whole by close to 75%. I try and eat sprouted grains instead. I have reduced dairy by 50 to 75% and most of what I do consume is RAW milk dairy. I definitely don't feel good when I eat the junk or the gluten. Sweet things usually taste to sweet now and I actually crave vegetables. Who knew. </div>
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I can see some improvements in my body from just the 5 or 6 weeks I worked out with my trainer. It is a somewhat difficult transition trying to workout with out him but I'm doing it. The things he taught me about functional exercises just make so much sense and seem to resonate well with my body so I look forward to seeing how strong I get over the next few months. I will never view exercise the same again. These changes with diet and exercise are definitely changes that I will stick with for the rest of my life. </div>
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I have had some blood work run recently to try and figure out some of the missing pieces to the puzzle. As has happened so often before the test results come back normal. I know it may sound weird but it is really frustrating at first. You get tired of hearing that "they" don't see anything wrong when you know full well something is not right. This time it was regarding my adrenal glands and hormones. What I had forgotten though is the tests that were done were really basic and not the most reliable tests. In fact I am starting to rely less and less on what the blood work says. Just because the blood work comes back normal does not mean things are functioning as they should be. </div>
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I feel like I've been at a crossroads with treatment for quite some time. I was hoping that the blood tests were going to point us in a certain direction but that didn't happened. I weighed my options and decided that I would try a local chiropractor that I had heard some great things about. I had been to chiropractors before, in fact the doctors from Hansa are both D.C.'s. This doctor though uses NUCCA and that was something I had not tried. It was perfect timing too because anther Lyme patient was inquiring about NUCCA and I heard a couple stories of people benefiting from it. Besides being local, the office also had a payment plan that worked for us. Really I barely have the funds to continue with my accupuncture so I needed something I could afford. What has happened over the past two weeks of seeing Dr. S has been huge and given me such hope that I am on the right track. </div>
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NUCCA stands for the National Upper Cervical Chiropractic Assocation. Without going into to much detail because I would probably screw it up, NUCCA involves adjusting the very upper cervical spine area with minor pressure. It is not the typical snap, crack, pop visit and it focuses on an area that no one has ever dealt with. My first visit was a sit down with the doc to go over my history, my complaints, concerns, and few minor tests and x-rays. After that the doctor let me know that he thought he could help me. As much as he wanted to start working on me right away he knew it was important to review everything first. I scheduled a followup for the next day. The second appointment the doctor said confirmed that he really felt he could me. He said in addition to the NUCCA he would be doing bio-cranial work as well. He laid out a treatment plan and we agreed I would see him twice a week for 6 weeks and then once a week for 6 weeks. After that we will figure out how often I may need to see him. He did say I am a very complex case but he likes a challenge. What a surprise. We jumped right in with the first adjustment which only took a matter of minutes. He finished with a couple more followup x-rays. As much as I don't like to have the x-rays they ensure that he is right on with his adjustment. During these first two visits the doctor explained a little bit about how NUCCA works. Basically when things in the upper cervical area get out of alignment it causes problems with the information going to my brain. Bad information going in, means bad information coming back out to my body. I'm very twisted and have a lot of misalignment. The doctor almost laughed and just said no wonder you are tired all of the time. You are so twisted that your body is fighting against it self, against the muscles to try and put you back into alignment. It really was making sense. At then end of my session I was put on the MRS mat. I won't go into that right now but you can look it up. Its magnetic therapy that helps with pain and all sorts of things by kind of acting like a whole body battery charger. A lot of people with Lyme use them and so I am excited to have the chance to use on regularly for a while. I have found that I am very sensitive them which is normal in my condition so I can't do to much time on the mat.<br />
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My next visit started off with some muscle testing and energy work. The first thing he says is that my adrenal glands are definitely weak and not functioning as they should. My blood work said my adrenal glands were find which I know in my heart was almost impossible due to how long I had been sick and everything I had dealt with. Next he picked up the fact that I had a virus in my intestine. He worked his energy medicine and put me on a herbal adrenal gland remedy. I'm almost in tears at this point and he was so excited he was almost jumping up and down. He said he could just see things unfolding for me and that we were really gonna get some where. Hope. Dr. Spinato gave me hope. Everything he said made so much sense. It also matched up with what Hansa told me in January. Adrenals and viruses were my two biggest issues. Two different doctors, in two different parts of the world, not knowing what each other said and using slightly different energetic testing methods came up with the same answers. So cool. We did the bio cranial therapy next which is like a big stretch in the neck and upper cervical spine to again help open up the communication to/from the brain. I jumped on the mat and was out the door. With in 45 minutes of my appointment I started getting sick to my stomach. I was "sick" to my stomach the rest of the day and the next. In addition I had a really bad episode of dizziness, heart, just feeling really bad and weird to where I considered the ER. I had been here before though and knew the ER wouldn't help. Anyways I figured I must be having a healing crisis. This is a little different in that herx I have talked about before. This is because my body is kicking in a fixing things instead of a die off of bacteria. I didn't enjoy it by any means but took it as a positive sign. The following appointment the doctor agreed with my thoughts that it was a healing crisis. He was glad I knew enough to just push on. So I have continued to have some healing crisis this week but am taking it as a positive sign.<br />
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Here a quick glimpse of what my treatment involves right now. I'm on 4 different antibiotics, a number of supplements (vit d, Co-Q 10, magnesium, adrenals, etc...), silver, acupuncture every other week, NUCCA, sauna daily if possible. I still have my chest port but don't use it right now. My plan is to do the antibiotics for about 3 more months and then be done with them for good. My goal is stick with natural herbal remedies and alternative therapies from then on out and for my family as well. I can't tell you how much I believe in energy medicine. I will never view medicine the same again. I will be taking my girls to Dr. Spinato soon and look forward to how he can help them. I will be using alternative medicine and therapies for the rest of mine and my families life. I am happy to share anything I can with you about it and highly encourage you to look into these options. They may just change your life. I can't wait to keep you updated on my journey over the next few weeks as Dr. S works his magic. Feeling truly blessed and I like I am on the right path to getting well.</div>
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<br />Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-69553084762044064432012-10-03T14:35:00.003-07:002012-10-03T14:38:58.815-07:00152<div style="text-align: justify;">
I don't know how I did it. I honestly don't know how I pulled off being a full time working mom for 7 years. As much as I enjoyed my work, loved my co-workers, and needed the money I wouldn't go back to being away from my family like that. Although I will admit the full time job I have now, the one of fighting this dis-ease makes my life seem crazier then it did before. </div>
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I really feel like we are at a crossroads with treatment and I don't know where to go next. I know I keep saying this, but it is beyond frustrating to not have a standard checklist of where to start. In reality Lyme is only part of the picture. That is why the name change to MCIDS (multi chronic infectious disease syndrome) seems better. Even with that there is so much more going on. You can have immune system, hormone, genetic, detox, a million more issues. There isn't even a standard list of tests to run. I feel fortunate on some level to have a lot of options presented to me over the past few weeks. Trying to research all of them and make a decision is proving to be very difficult. Then reality once again slaps you in the face and it really comes down to money. Money that my family doesn't have. Add to this that we have two children that we desperately need to get help and it just all becomes too overwhelming. With each passing moment there is mounting pressure on what to do for our girls. Every complaint of pain or some weird symptom almost paralyzes me and I desperately want to get them well so they do not have to endure this. What are we supposed to do? At this point all I can do is pray that God leads us where to go. I have at least 6 health practitioners that I am considering seeing. There is definitely a lot of information to review. </div>
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With all of that being said, I am proud of the fact that I am really making progress in the areas of diet and exercise. It has become clear to me that there are multiple things out of my control and that I will benefit by focusing on what I can control. Diet and exercise are the two main things I have been working on. The 30 days of clean eating my family tried was really difficult but it was definitely a catalyst for change. We have continued to pursue changing our diet and it is getting easier as time goes on. We have reduced the amount of grain, sugar and dairy we are eating over all. Most of the dairy we do eat is now RAW. We have increased the amount of fruits and vegetables we eat, most of which are organic. The amount of packaged food we eat is definitely reduced. I can't say that I feel amazing but I am losing my cravings for the junk and it just doesn't sound appealing to me anymore. My acupuncturist really wanted me to focus on eating cooked vegetables for a week and I really started to lose my cravings when I did that. I am happy that we are making improvements and that my husband is on board as well. The kids are not thrilled about it but they are coming around to the idea a little at a time. My six year old is still suffering from low iron so we are really focusing on bringing those levels up. An important thing you may not know is that dairy can actually bind the iron while vitamin c helps it be absorbed. So making our green smoothies with spinach and no dairy (use almond milk) or eating eggs with orange juice are things we are doing to help her out. We also just got a new juicer. I have researched and agonized over the blender vs juicer dilemma. The bottom line is you need to do what works for your family. We have a Ninja blender for our smoothies and are now using a Jack La Lanne Power Juicer for our juice. This just seemed to fit our budget and needs the best. Do what works. We are still getting amazing benefits and are eating healthier that we ever have. </div>
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Now comes the exercise. I know I said a few weeks ago that I was going to put it all out there so I was accountable to people other than my husband for my health. Although I probably won't post pictures until later I will say my starting weight is 152 lbs. This is one of those things that is very personal. I think especially for women. I know I shouldn't have a magic number but I kind of do. I am treating it more like a goal number but when I am comfortable with how I feel and look then that is what will matter regardless of what the scale says. So my goal would be to get down to 135 lbs. However since muscle weighs more than fat, I may not reach that goal. I just want to feel strong and be confident in how I look. So my journey to being in better shape has started. I ended up finding an amazing trainer and I have had the best workouts of my life with him. It has only been a few sessions but I am a total believer in his approach and can't wait to see my transformation over the next few months. The story of how I found him is really cool but I will have to save that for another day. The one thing I have not been happy with is my heart, but I am not going to quit. My heart rate was 183 during my workout out the other day. It is very frustrating but the cardiologist says its fine. I can't say I agree but they assured me I don't have anything life threatening. If I fall over and die due to a heart issue you heard it from me, the cardiologist said not to worry. </div>
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I am waiting for some test results for my adrenal glands and have some more information on my thyroid issue but that too will have to wait until next time. Thanks for following along and supporting me in this crazy journey. For all my San Diego friends, the San Diego Lyme Walk is Saturday October 13 at Seaport Village. Would love to see you there! Hugs to all my fellow warriors out there. Don't give up. Take it one moment at a time and fight hard. (I will update my current protocol too)</div>
Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-32289266459165826382012-09-12T22:28:00.000-07:002012-09-12T22:31:05.003-07:00Random Story<div style="text-align: justify;">
I really feel led to start off this post by sharing a story. There is always a chance I have shared this before but it was placed on my heart to share today even though it doesn't seem to relate to anything else I have to say. I have learned to not ignore those feelings. Someone needs to hear this. Here it goes.</div>
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About 6 1/2 yrs ago I found out I was pregnant with my second daughter. My husband and I had already decided during my first pregnancy that we would never terminate a pregnancy even if test results said our baby had significant health problems. We had been blessed with one healthy daughter already and although my first pregnancy wasn't a walk in the park I didn't have any significant issues. I wasn't very far along in my second pregnancy when I began having some severe pain. It was very similar to pain I had before from an ovarian cyst but of course being pregnant I was a little concerned. I called my OB whom had delivered my first baby and whom I trusted completely. She said I should go to the hospital for an ultrasound just to make sure everything was ok. We went down to the hospital and the results came back that I was pregnant but I was definitely not as far along as I should be. There was some concern of an ectopic pregnancy and I needed to come back in a week or so. The pain continued on and off and I went back for my followup. We were blessed with an amazing tech this time. Although he couldn't confirm anything, he told us that things had changed and appeared to moving in the right direction. I remember it was a Friday and he said he worked all weekend and if I needed to come back everyday for reassurance he would be happy to help us. Little did we know what a blessing this man truly was going to be for us. We were definitely relieved. The afternoon of the following Monday, my OB calls. She tells me she just received the ultrasound results and I did not have a viable pregnancy. She needed me to come to hospital to terminate the pregnancy. Of course my husband and I were devastated and we just couldn't understand why this was so different from what we had heard a few days earlier. We got settled in the hospital and while we were waiting for my doctor we explained to the nurse what we had been told and how this all didn't make sense. She was kind enough to pull my ultrasound results and told us the notes indicated exactly what we had said. She told my doctor as soon as she arrived about our concerns. When my doctor finally came back she apologized and said she had been sent the wrong results. Everything looked fine on the new ultrasound. We were free to leave. Today we have a healthy beautiful 6 yr old little girl. One persons mistake almost cost us my precious daughters life. Like I said at the beginning, I'm not really sure how this ties into everything else I'm sharing but someone out there needed to hear this. Please don't sit back and rely on someone else for health and well being. </div>
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Well with that out of the way I did want to give you a little update on my new "job". The first few weeks are always a little crazy and this is no different. I am signing a contract with myself outlining everything this will entail. The basic premise is I can work as much or as little I want. My pay is based on how much I work. I am kind of on call 24/7 but my schedule is really up to me. I have a a fairly good idea of what my daily assignments will be and what special projects I might be tasked with. I definitely have lots of meetings to attend (i.e. doctors appts). In fact I have had a few of those meetings this week. I saw the acupuncturist yesterday and had an ultrasound of my thyroid to day. I will be seeing the endocrinologist on the 25th to go talk about all of the hormone issues, adrenal fatigue, and thyroid problems I may be facing. I am hoping to hear my ultrasound results before then because I am relatively sure I will be told I have a least one if not multiple tumors growing and they need to do biopsy. If that is the case, it will be the third time I am facing the possibility of thyroid cancer. I guess I will know if a couple of weeks for sure. </div>
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My first real assignment is to nail down a treatment protocol and schedule. As I have said many times, with this disease there is no one treatment protocol that works for everybody. Each persons case is unique, each doctor out there has a little bit of a different approach, and you really need to listen to your body and your heart to determine what is right for you. Although I don't know 100% what my treatment will hold I can tell you some basics. I am really leaning to toward options that focus on restoring my bodies balance and ability to heal itself. Things like what Hansa offers, bowenwork therapy, acupuncture, zyto, and Synchronicity Wave System to name a few. Diet, exercise, enough rest, detox and a positive attitude are also a must. I am on antibiotics right now but I am not sure for how long. I have a lot to sort our and get straight before I make any big decisions. Organization in this job will be key. </div>
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I have a lot more to share with you and in a few days I hope to have an updated current treatment protocol, some starting point statistics, maybe even pics, etc...I definitely need to share what I learned at acupuncture a few days ago and the challenge he gave me for the week. Although this post is kind of all over the place and not what I had planned for it to be, I knew I could not ignore that voice that said you need to share your story. I'm praying that what I said may be a blessing to someone. I look forward to getting back on track and sharing some more with you in a few days. God Bless.</div>
Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-26140712688532224712012-09-07T18:48:00.001-07:002012-09-07T18:49:20.686-07:00New Job<div style="text-align: justify;">
I've got some very exciting news to share. You can probably guess from the title, I have a new job. It has great benefits and I start tomorrow. I'll be working at Mind, Body, Spirit and the biggest part of my job will be working on me. Okay, let me explain. I have decided to treat taking care of myself as a real job. If I do good at it the pay and benefits will be better than any job I have ever had. Let me share how this whole thing came about. </div>
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For the past 2 and 1/2 yrs of my life, I have been trying to regain my health that really I had spent almost a lifetime slowly losing. I have tried traditional medicine, alternative medicine, and all sorts of things in between. I have had ups and downs, twists and turns, that I never could have expected. I have tried to come to terms with the fact that I will always be fighting this. Even the thought of a lifetime fight against illness, makes me tired. Because of this whole ordeal I have begun to learn a lot about health, fitness, alternative medicine, etc...especially over the past year. The more I learn the more I am amazed by the human body and how it was designed. I truly believe that no doctor, medication, or procedure can cure me. All of those things can only aid in restoring my bodies balance and function allowing it to take care of itself. Our body truly is a miracle, and God designed it to heal itself. </div>
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A couple of weeks ago I decided to join some friends on a mission to eat clean for 30 days. Eating clean is kind of a "buzz" phrase right now and means a little something different to everyone. In any case, having someone to be accountable to besides my husband has been a good thing for me. Although my family still has a long way to go, we have definitely made some steps in the right direction. Shortly after we began this mission I started back on antibiotics. I am currently on 2 out of the 3 that my doctor wants me to take and I have felt horrible. I knew I needed to really focus on detoxing and have made an extra effort to use the sauna, drink water, eat good. I even did some electro lymphatic therapy and got to see my acupuncturist after a long break over the summer. While I was hoping these things would make me feel great they didn't. It has been a rough week. In fact my excitement and motivation over starting this new job this morning was interrupted by left sided chest pain and shortness of the breath that was all too familiar. I prayed that I would know if and when I needed to call 911 but deep down I had been here before and knew there was nothing they would find or be able to do for me. That however has not deterred from my goal and in fact has made me realize even more just how much I need it. </div>
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I have been seeing lots of great pages on Facebook dedicated to health and fitness. Although many of them seek to motivate you, I have been allowing them to make me depressed. I see these amazingly fit women, talk about doing it all and I think back to when I was even a fraction of how in shape they are and I just get sad. My self confidence is in the trash, I weigh more than I ever have, I feel horrible. How nice for them to go run and lift weights and spin their butts off. They work hard for their fitness but that isn't even an option for me. It didn't take long for me to realize that this entire time, I have been standing in my own way. When it was hard to look at my acupuncturist yesterday and answer his questions honestly about what I had been doing I realized I had a problem. Who was I? I had become the queen of excuses. I certainly wasn't acting like the person I want to be. I began to think back to what I had accomplished in my life. Admitting that I had unknowingly been sick for so long yet I managed to: survive a full time college load while working, getting my EMT certification, working for the US Forest Service including passing their fire academy and going through fire school at Camp Pendleton, having two children while continue to work full time, doing so well in class that the CA State Fire Marshals office offered me a job, walking every step of the Breast Cancer 3 Day (about 60 miles)...I knew I had to not only take pride in my accomplishments but quit making excuses for why I couldn't achieve the health that I wanted.</div>
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As much as I considered trying to be one of those do it all women that had a Facebook page and website dedicated to health and fitness I decided that it was not the time. Believe me, going through this experience has made me consider a career in holistic type health or fitness of some sort but I know I just need to focus on the task of getting myself well. If that leads to something down the road that would be great. I have also come to realize that I do have gifts of compassion and encouragement and that I hope this "job" will allow me to use those to the best of my ability. I have decided to track this whole experience here in my blog. I found that being accountable to other people will help me stay on track and I am hoping someone, can benefit from what I share. My plan is to be honest, Including before and after pictures, my true weight, basically the good, the bad and the ugly. This isn't just about physical health though. I definitely am starting to see the mind body spirit connection. Negative thoughts can affect you physically and I plan on working on my total health. That is the only way to get better. </div>
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So here it goes. A new phase, a new challenge. No more excuses!</div>
Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com1tag:blogger.com,1999:blog-8418367038402725149.post-88483503219618314622012-08-16T22:01:00.000-07:002012-08-16T22:01:33.011-07:00MCIDS- Is that what they are calling it these days?<div style="text-align: justify;">
It looks like I inadvertently took the summer off from my blog. I certainly didn't mean to let things go so long but I guess after more than 2 yrs you try to think about other things in your life besides your illness. I say try and think about other things because the reality is, my brain is consumed by this illness a good part of everyday. It manages to creep in and interrupt what I am doing with every pain I feel, every commercial for flea and tick medicine, every Facebook post from a fellow brother or sister with this illness...No matter what I do I can't completely escape it. </div>
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I wish after two years I was also able to say that I have come to terms with my situation, that I am okay with it, and it doesn't bother me any more. To say that would be a total lie. Just today, I broke down and told God I was over it, I didn't understand why my family was having to endure this, I wasn't okay with it, and I wanted it to end. The good thing about my God is, He gets it and allows me to have my moments of frustration and anger. Then He gently reminds me, He has got it under control. I continue to work on trusting Him and having faith that something good is going to come from this. </div>
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Things have been a little bit "confusing", (I guess is the best way to put it) over the last few months. After coming back from Hansa the second time, I was dealing with the news of the girls and focusing on them plus dealing with the fact that I didn't feel much better and was a little frustrated. I was actually feeling somewhat worse. After a phone consultation we decided that I should try taking some colloidal silver and that we would try another remedy for Brooke as her stomach aches had not cleared up. I knew I needed to follow up with my doctor here and that kind of threw a wrench into everything. Although my CD-57 number had increased a good chunk, a lot of other numbers still were not good. My vitamin D levels are still low and now I came back positive for Kawasaki Virus in addition to the two forms of pneumonia, Epstein Barr, and HHV6 that I had already tested positive for. Although these are not acute infections where I am contagious, they are constantly in my system and can reactivate at any time. My system is taxed to say the least. My doctor agreed that I should do the silver because that would be my best bet against the viruses but based on everything I should go back on 3 different antibiotics. Dealing with all of this information in combination with a super busy All Star softball schedule for my daughter my treatment got off track and I ended up on a break from treatment. The reality of that decision has set in and I seem to be failing fast. </div>
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Part of the frustration and confusion in this is that there is no clear cut treatment. With other diseases and illnesses there is usually a standard course of treatment. It is widely recognized, accepted and agreed upon by most medical professionals. With this, not so much. As I may have mentioned in an earlier post my husband and I went a seminar on Lyme by one of the top Lyme doctors I think in April. The information that came out of the few hours with this man was overwhelming to say the least. My poor husband was so lost because he had not thrown himself into the hours of research like I had and a lot of the terminology was foreign to him. Heck, a lot of it was even over my head. Couple that with the amount of information crammed into these few hours and your head was spinning. One of the things that stuck out to me was the push to change the name from Chronic Lyme to MCIDS- Multi Chronic Infectious Disease Syndrome. The reality is that a large majority of people with Lyme have other on going chronic issues, such as viruses, co infections, pain, yeast problems, heart problems, fibromyalgia, neurological issues...the list seems to go on forever. Changing the name in and of it self doesn't change much but I guess it is a better description for the totality of what we are dealing with. Next came the fact that there are about 15 different things that need to be dealt with when treating MCIDS and they needed to all be dealt with at the same time. That was a new approach to the way I had been doing things. It made sense but also left me wondering where I even begin. My head has been spinning ever since with what my next step would be and where to go...am I going natural, traditional, a combination of both? Do I go broke going to Hansa or try something new that is local? Where do I go next with my kids?</div>
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Here I sit a few months later just as confused and still unsure of what we are going to do. The only thing I do know is I can not sit here and do nothing. That little break is catching up with me at a rapid pace. I am filled anxiety every night at bed time and can't fall asleep. I wake up tired, weak and in crushing bone and joint pain. I have seizures almost weekly. I am short of breath and have heart palpitations. My short temper, anger, rage and depression is ramping up again and I feel like an awful person. I would rather feel like I am physically dying 24 hrs a day then feel for 1 second the way I do after losing my cool with someone, especially those I love most. The bottom line is, I am once again afraid for my life and wonder just how much longer I can keep this up. My brain function seems to be decreasing everyday. I can't remember simple things, I can't spell to save my life, I am getting confused, and in all honesty there are times where I questions my ability to take care of my kids. As school, sports, and life seem to ramp back up to a frantic pace we have got to find a way to deal with this all. Ask for help, say no, cut down on the clutter anything to make things as simple as possible. </div>
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We also realize the need to go back to some basics. Summertime bbq's, birthday parties, etc...have contributed to a slide in our diet. So this Sunday our family, along with another dear family, and maybe some others are embarking on 30 days of clean eating. I am hoping being accountable to someone other than my husband may help my to stay on track. Drinking plenty of water, using the sauna daily, getting plenty of rest, some exercise and taking my supplements and meds are also on the list. I am hoping that over the next 30 days we may gain some insight, clarity, and direction for where to go next. </div>
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I am almost ready to pay someone to take over my health care. Someone that can do the research objectively, look at the all the options and advise us where to go and what to do. In the end I know these are decisions that we have to make for ourselves. You just begin to get so lost...how long do you try something for before you decide it isn't working? When does a medicine become more detrimental to your health than doing you good. Once again, the reality has been made very clear, by top medical professionals in this field, I will be dealing with this for the rest of my life. For my kids, this will truly have been a life long battle. I know our situation could be a lot worse. We are blessed and still have the ability to bless others for which I am so thankful. I just need to know that we are making progress and getting somewhere. Thanks for "listening" and please keep us in your prayers. Will check in soon.</div>
Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-50384958682933536382012-05-31T22:35:00.000-07:002012-05-31T22:35:04.160-07:00Living Life In Spite Of...<div style="text-align: justify;">
I stole this title and kind of the basis for this post from a friend of mine. I didn't realize it had been so long since I had written an update about whats been going on. It's my same excuse as always, things have been crazy. I long for the day when things are no longer crazy. Until then, I guess I am learning, as so many others are to live my life in spite of Lyme, in spite of the pain, in spite of being tired, in spite of having no job, in spite of being a financial wreck...The past two months or so have been really rough on me physically. My"symptoms", if that's what you want to call them have been really bad. I think I am approaching a week with out a seizure which is kind of big deal. I got to the point where I was having them daily, sometimes multiple times a day. I had my worst seizure ever just recently. I have had the most awful acne problem I have ever had in my life. I am almost 35 years old and feel like a junior high girl again. I am in need of nap almost daily but I can't seem to find the time. My brain function is starting to go again and I struggle to spell simple words or remember something for even 5 minutes. Then there is the pain. Pain of all types, in all places, daily, hourly, almost every moment. This has all been taking a toll on my emotionally. I have had some dark days and really had to fight to pull myself out of them. </div>
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My kids are still struggling as well. The drastic improvement I was hoping for has not happened yet. Still we go on. Then just the other day, I found out that my dad had been bit by a tick while staying in Illinois. The tick was engorged and the bite was a little red. I sent my parents to the doctor right away. Of course the doctor told them they had nothing to worry about but they got him to give them two weeks of doxycycline anyways. Two weeks is not enough, but at least its a start. Three days later, the area around the bite was a swollen, red, and warm to the touch. Looks like one of the many Lyme rashes out there. Could we really be going through this again? At least we caught it early and I am praying my dad develops no symptoms from this. In the meantime another mom I know, in the same area in Illinois, daughter was just bit. It breaks my heart to think of someone having to go through this nightmare. I can't help but be extra concerned about my families trip back there next week. If any of us get bit, I am not sure I could it handle it.</div>
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With that all being said, some recent blood did show a significant improvement in my Cd-57. That leads me to believe Hansa was right, and my biggest issue currently may be more of the viruses or maybe the co-infections instead of the Lyme itself. I am definitely grateful for the improvement even if I don't feel better yet. </div>
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I have come to realize through all I have been facing and what a friend has been going through that we are doing are best to live our lives in spite of Lyme. Everyday when I get up and take my kids to school, when I do team mom things for my daughters All Star team, when I wash dishes, go shopping, pretty much go any where or do anything I am choosing to live my life in spite of my disease. If I did what I physically and emotionally felt like doing everyday...I would not get out of bed, I wouldn't smile and tell people I was okay, I wouldn't give my life much effort at all. But I realized I am making a choice on a regular basis to push through the pain, to push through the tired, to push through all of the negative things and live my life to best of my ability. For once I am realizing that I need to give myself a little credit. The house is not always clean, I don't always remember to show up and help in my daughters class, I don't get to work out like I want but I am not allowing myself to give up. Though this may not be the life I dreamed of as a little girl, it is MY life and I am lucky to be living it. I have been blessed in more ways than I can say. I still struggle with the thought that this may be as good as it gets. Will I ever be functioning at close to 100% ? I don't know. Instead of waiting for that time to come, if it ever does, I will choose to live my life in spite of...</div>
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As always, thank you to my friends and family for all of your support. Thank you especially to Caity and Joni for the inspiration. Caity you are a shining example of living your life in spite of Lyme. I love you both and am so thankful that if I have to go down this road, that I can down it with you. </div>Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com2tag:blogger.com,1999:blog-8418367038402725149.post-53230719026014331382012-04-17T22:13:00.000-07:002012-04-17T22:13:36.862-07:00Do A Little DancePeople that know me the best know that I like to dance. Well actually I love to dance. It is almost torture to be some where, especially with a dance floor, when a good song comes on. I can't sit still. I have a constant need to move to the beat of the music, in church, in the car, at home...Anyways I think you get the point. So the other day I made up a new dance. I decided to call it the Trader Joe Twitch. It is so easy to do I figured I would share it with you just in case you wanted to try it. All you have to do is grab a shopping cart, walk into your local Trader Joe's, and then begin having a seizure as you push your cart around the store.<br />
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That's right, after almost 3 months of no seizures I had one the other day when I was grocery shopping. I felt like one was coming on for about 3 days. I tried so hard to make it go away but with no such luck. I needed to get my shopping done so I just carefully maneuvered my cart through the store trying to not accidentally hit someone or give them my almost famous seizure thumbs up. I tried to keep my vocalizations quiet enough as to not draw attention and I fumbled my way through a conversation with the checker, stuttering as I went. I had a few choice words running through my head as I let my frustration get the best of me. What the heck is going on? Why do I feel so bad again? I don't understand.<br />
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For close to a month now I feel like I have been starting to regress a little bit. I assumed that the transient pain that was starting to reappear had to do with stopping my remedies to early by mistake. However when I went back to Kansas last month, the remedies I thought would be responsible my body didn't want anymore. To make it even more frustrating, it looked as if my Lyme was under much better control but my viruses were really a problem. Any progress I had the second go around is gone and the last week, especially the last few days have been hell. I am beyond tired, my brain is pretty much worthless, the seizure, and the PAIN! Muscle pain, nerve pain, joint pain, bone pain. The joint and the bone pain are at getting fairly high up on my pain scale and it has been this intense for three days now. That has never happened. Time to e-mail the doc and see what his thoughts are. I have been trying to detox more than normal and don't feel like I am getting any relief.<br />
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I am so bummed out right now. I guess I just thought things were really moving in the right direction (which they may be) and that I was reaching a stopping point so I feel like I am so moving backwards. I have been reminded recently though that my treatment is almost for sure going to be long, really long, term. I have been sick for over 26 yrs and I can't expect to get better in a year or even 2 years. I feel like I am at some sort of cross roads though on what I do for treatment. Frankly weather I go back to antibiotics or stay on the natural road with Hansa or someone else we are out of money. So unless I win the lottery the best treatment for me at this point is probably not going to be an option I have. I just feel lost at this point. I don't feel like I am even able to make the best treatment choice anymore. I need a third person to come in and hear what all the doctors have to say, and do some research and help me sort all of this out. It is just to much.<br />
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To make things more complicated, we of course I dealing with the fact the our 8 yr old has Lyme. I found out this week she has been suffering from the ringing in the ears and her intermittent dizzy spells are happening almost daily. She also broke out in the worst case of hives she has had in years. I don't know if this is a healing crisis, if the remedies have stirred up the Lyme and the bacteria is changing form, or what is going on. Her pediatrician doesn't even know about the diagnosis yet and frankly can't treat her as she knows nothing about it. I so wanted to go the natural route with my kids but am not sure if that is going to work. Both of my natural options are probably out of the question financially. Switching the kids to my doc would work for a little bit but again the natural therapies would cost more than we can afford. If I stop all treatment I will go backwards and could end up not able to care for my family at all. Yet at the same time, I won't let my daughter suffer. This is really something only God can handle. I have to remember to just give it up to him.<br />
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I'll let you know what the doctors say and how things go over the next week. Prayers and positive energy are always appreciated. Oh and I finally have a website for my new business. Please check it out and let me know if you could use my services. www.surfchaserphoto.comJessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com1tag:blogger.com,1999:blog-8418367038402725149.post-89943751638108035332012-04-10T16:36:00.000-07:002012-04-10T16:36:11.158-07:00Frustrated but still fightingAs you can probably guess by the title of this post things are not exactly amazing right now. Let me say that I am blessed and my life is good. I have so much to be thankful for. I have been trying to increase my positiveness and stay positive and for the most part I think I have done a fair job. But as you may have learned by now I do vent when things aren't going so well. I have gotten much better at not posting negative things everyday but there are times when it is necessary and this is one of them. I am trying to walk the line of being positive without making this disease look like its no big deal. There are days when this disease seems like it is the only thing you have going on in your life. The last week or so I am being reminded that this battle will be a life long one. <div><br />
</div><div>Unfortunately this second round at Hansa has not produced the results that I saw the first time. I do believe that has a lot to do with how toxic I may have let myself get. I think because I was feeling so much better than I had in at least a year I was overdoing it and not taking care of my self the way that I should be. I know I have mentioned it in early posts but one of the things that is so frustrating about this disease is never knowing for sure why you feeling like you do. Is it a herx, is it a flare, is it just part of the disease? Even with tracking symptoms sometimes you still can not tell. Over the past couple of weeks I have had an increase in my brain issues. I am having a harder time concentrating and am more forgetful. I also feel more easily overwhelmed. Some of my heart and breathing issues have also increased a little. The biggest thing is some of my pain is back. After two months of being almost 100% pain free my joint and bone pain is back. It is fairly wide spread and random as was normal. My hips and knees get really sore when I am sitting or laying. My arms and legs are falling asleep really quickly and I have burning nerve pain. What the heck? This is obviously where my frustration comes in. I guess I had kind of convinced myself I could only go up. So this is my reminder that I guess I can go back down too.</div><div><br />
</div><div>My girls are still doing okay and I feel like Brooke (5) has had some improvements in mood and attitude. My family is plugging along with are better eating habits. I am beginning to believe we can do largely organic without breaking the pocket book. It comes down to my planning a little better but we will get there. I just have to remind myself to take this one day at a time and when we slip, we just need to get back up and move forward. There is no sense beating ourselves up over our mistakes. The girls are getting better at taking their remedies everyday. In about a week or so they will be all done. I'm hoping we continue to see some improvements with them both.</div><div><br />
</div><div>Our next issue is how we continue with my treatment. I wish I could be done but it is obvious I am not ready to stop everything. Hansa really wants me back in about another month or so. I still need to meet with my doctor here and see what he would like to do which I am sure will be to continue with the light therapy I had started at the end of last year. I am thinking I will be putting both girls through that as well just to try and help make sure we have done everything we can. I also have this CCSVI issue to address. It is a very complicated thing. The biggest road block comes back to finances. I hate that this is even an issue but it is. I am trusting God though that he knows what needs to happen and it will be taken care of. For right now I will continue the fight one day at a time.</div><div><br />
</div><div>I always like to end on a good note so I have a couple of things to share. An amazing person (and her family) who has become such an important part of my life have had a breakthrough in her fight against Lyme. She is lacking a major gene that is responsible for her bodies ability to detox. She is the second young person with Lyme I know personally who is facing this issue. I am so excited to see how this affects their treatment and how they feel. They have had little improvement much to the doctors frustration and this may be the answer. So I am beyond excited to see them start to get well. </div><div><br />
</div><div>Last thing I want to share is some exciting news for the whole Lyme community. This Friday, the 13th, Dr. Phil is taking on Lyme Disease. Please watch it, DVR it, whatever you can do even if you don't like Dr. Phil. He has a LLMD and news reporter/Lyme fighter Brooke Landau in addition to some "bad guys" from the IDSA. The IDSA</div><div><br />
</div><div>Lots of prayers continue to be needed and appreciated not only for my family but for all of the families fighting this disease. Thanks for following along on this crazy journey. Sorry this update may be all over the place. My brain has just not been working lately. </div>Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com2tag:blogger.com,1999:blog-8418367038402725149.post-27051634767577730182012-03-26T10:49:00.000-07:002012-03-26T10:49:16.538-07:00Return to Hansa: It's working<div style="text-align: justify;">Sorry I took so long to write about my our last day at Hansa. The benefit is I can see things that we did are already working. Our last day was really good and sad at the same time. It has become almost a home away from home. The hardest part was leaving our friends. We have gained a life long friendship though and even though it was hard to leave I wouldn't trade it for the world. We love you Body family!</div><div><div style="text-align: justify;"><br />
</div></div><div><div style="text-align: justify;">The day started our with me seeing the doctor. I was scheduled for an hour. He needed 15 minutes. That was it. I still have a lot of work left to do but we had made some progress and he got kind of as a far as he could go this time. So we moved right on to the kids. We did some work with the myasms which are those diseases, illnesses, and conditions in your family history that are passed down energetically. They don't always activate, and just because you have a myasm doesn't mean you will get that illness but you could. You just want to clear all of that out. The big one that stands out for me is cancer. I have it and so does Brooke but it has skipped Jenna so far. Hopefully getting these issues addressed in the kids means they won't pass them down anymore. Again doesn't mean that we would definitely get cancer but that energy is there and could activate at any time unless you get it taken care of.</div></div><div><div style="text-align: justify;"><br />
</div></div><div><div style="text-align: justify;">We didn't really have any big revelations. Dr. J did say that Brooke's ear looked night and day better. She still had some pain at about 5 am in the morning so I was really nervous about our flight. He gave us a herbal remedy to take for the pain. Just to be safe I did give her some advil and found the ear plugs designed for flying that are open on the end to help regulate pressure. The kids did amazing on the flight and Brooke has had no complaints since.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Since we have been home things have been crazy as is usual around here. We have just been busy and I started not feeling good. I realized right away what my mistake was. When I was at Hansa I didn't really do any detox this time so I really should have come straight home and got in the sauna. Having the energetic treatments got things moving in my body and I wasn't doing anything to get the junk out. Then I started to have my usual sore throat that I get a day or two after flying. Weather it activates my Ebstein Barr or what I don't know but it happens I think every time I fly. This time I woke up with my eyes stuck shut and a bad headache. I kind of started to panic. Please not pink eye and no antibiotics. Well 24 hours later I am feeling much improved. I jumped all over detoxing and it seems to have worked. I did the sauna once Saturday, twice yesterday, plus took detox bath, and started taking my EmergenC. I also went to the health food store to try and find a remedy for my eyes. The lady suggested Rue Fennel drops mixed with purified water as an eye wash. 3 doses of that during the day yesterday and no problems with my eyes this morning. I will definitely be continuing this protocol for the next day or two to make sure I really knock it out. I also made Asian Ginger Chicken soup for dinner. It is has spinach and mushrooms and I threw in some chicken for my husband. It is supposed to be healing and was perfect way to end my day. </div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Back to the girls. They both have a few remedies to take for the next 30 days. I was excited to hear it was only 30 days. Jenna is taking the same ones for Lyme and neurotoxins I originally took. I couldn't be more proud of my girls. These remedies don't exactly taste great and they do it 3 times a day without a fight. Already we have seen an improvement with Jenna's stomach issues. She has suffered with horrible gas since she was little. I don't think she has had any since we got back. It's the little things sometimes. It is just more confirmation that we are doing the right thing. I can't wait to see what happens over the next few weeks for both girls. I am expecting big things. I got our our paperwork and test results and took some time to look them over on the flight home. The one thing that really stuck out to me was Jenna's vitality. Her little body is only functioning at about 50%. We didn't talk about that specific number so I am going to email the doc and get some more information. Hopefully her numbers will increase rapidly now that we are on the right path. If she has done this will functioning at only about half of what she should I would say she is in for big things in her future. </div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Our biggest challenge at the moment is this possible CCSVI issue for me. It is all so new and there are of course no guarantees that the "angioplasty" to open up your veins will work. There is just a lot of unknowns right now. I am still feeling okay with going to get the scans done if we can come up with money. Then we can go from there. Lots of research and prayers ahead. I am feel beyond blessed though that we found Hansa. We are on our way to better health and I couldn't be more excited.</div></div>Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0tag:blogger.com,1999:blog-8418367038402725149.post-18774494860647774002012-03-20T22:13:00.000-07:002012-03-20T22:13:43.027-07:00Return to Hansa- This is where the healing begins<div style="text-align: justify;">Things have been quite interesting since my post last night. I have a big break in my day so I decided to write part of my update now so I'm not having to write so much later. We went to dinner with our amazing friends who have been such a big help watching the girls during some of my treatments. We had a great night and come up to our room at about 8:30. Then out of the blue Brooke started complaining about her ear hurting. I was trying to figure out what was going on since we had been off the plane for over 24 hours and she had no complaints at all during our flight. I got her to sleep a little but the pain was waking her up in tears. That led to borrowing my friends car in the middle of the night to go to Walmart. Not my idea of a good time but I had to help my little girl feel better. Long story short, I didn't get a lot of sleep last night and neither did Brooke but with a little Advil, warm compress, and cotton in the ear while she slept...she is pain free and bouncing off the walls this morning. So all is well at this present moment. </div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I was scheduled to see the doctor first thing this morning. I did forget to mention yesterday that besides seeing the doctor, I had a massage and did the LUX (the treatment that uses colored lights and gemstones aimed at different organs on the body). That is the same protocol today. They are trying to help me save money and do kind of the minimum but still get good results. I don't think the girls will do anything but see the doctor where you do get energetic treatments and some other stuff. I started my appointment, after discussing how I was feeling, with some basic alignment stuff. He did a little cranial release as well. We then went on to the neurophoton therapy with the glasses that show you the different colored lights. All of the standard stuff went really quickly with no issues so he brought out some homeopathics to test me with while wearing the glasses. We dealt with a couple of minor issues there. Then we moved on to colored glasses that are different then the colored lights. I flew through those as well with very little to deal with. So the doctor said I was going to challenge him today with what else to do. We finished up trying to address the ringing in my ears and I was done. I have a massage and LUX scheduled this afternoon and then the girls see the doctor. I'm hoping to learn lots this afternoon in their appointments and hope to start seeing some improvements.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">My girls are doing so good with all of this. Convincing your kids to take herbal remedies and stuff isn't easy. Some of things I take are just plain horrible to chew up or swallow so they are troopers. Both of them gagged last night taking their first doses. I crushed up the pills and put them in applesauce this morning. It was better but not great. We will get through it though and hopefully soon they won't even notice. I have a lot of research still to do on this whole CCSVI thing and just trying to make sure I make the most of this short trip. I knew as soon as I got here I wish were staying the whole week and could just do everything. I am still really blessed though to be here and glad we are doing something to get our health in order.<br />
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This afternoon the girls got their turn to see the doctor and really their first experience with energetic treatments. Brooke went first because her ear was really bothering her again so I wanted Dr. J to take a look at it. Looking at ears isn't really standard for them but he did it anyways and said she needs to get back to the ENT. He really didn't like what little he could see but she has so much wax in the way he couldn't get a clear view. This has always been a struggle for Brooke and her doctors have had to remove the wax before. He said both ears were very red and kind of inflamed looking and it just didn't look good. Through BRS testing he did pick up a virus in the ear that is bothering her. He suggested some natural drops to try. He also showed me how to massage the area in her neck that would help open up her ears for proper drainage. Unfortunately I had to do another round of Advil before I get the store for the drops because they pain was so bad. Hoping we really get some relief before getting on the plane tomorrow. Once that was out of the way, he did some alignment stuff using energetic chiropractics and the percussor. Most of her issues were all in her sacrum. Then he did her cranial fixations with the percussor as well. Fairly easy for Brooke with the exception of the ear. She did great though.<br />
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Jenna had the same type of energetic treatments and use of the percussor to fix alignment and cranial fixation issues. He did note that both girls have a ridge in their "hard palate<br />
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Overall a good day. Looking forward to tomorrow but I definitely wish we could stay longer. We are going to miss our friends so much and I would love to keep working on the getting better but it will good to be back home with daddy and the dogs. We can also see how well we do over the next few months and then analyze where to go from there. So one appointment with the doc and then we will be saying good bye to Kansas and hello California. Good night.</div>Jessicahttp://www.blogger.com/profile/01877642261925581148noreply@blogger.com0