Thursday, November 2, 2017


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.

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.

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. 

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. 

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.

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. 

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. 

So here I am. Still fighting Lyme. Still being a control freak. Still growing in my faith. Still learning to be STILL. 

"Still" by Hillary Scott

I believe that You are God alone
But sometimes I still try to take control
Cause I get scared when I can't see the end
And all You want from me is to let go

You're parting waters
Making a way for me
You're moving mountains that I don't even see
You've answered my prayer before I even speak
All you need for me to be is still....

Monday, April 10, 2017

Stormy Seas

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.

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. 

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. 

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. 

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. 

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. 

Fatigue. Or should I say FATIGUE! 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. 

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. 

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.

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. 

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.

Wednesday, January 25, 2017

And So It Begins

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. 

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. 

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. 

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.

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.

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.

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.

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.

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.

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

Monday, January 16, 2017

New Year, New Direction

(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)

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. 

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. 

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. 

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.

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. 

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. 

Recommended reading: Finding Your Brave by Holly Wagner

Saturday, August 13, 2016

Surviving the Day (Finding My Brave)

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?

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. 

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 was endless. 

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. 

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. 

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)

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. 

Sunday, March 13, 2016

Beautiful Mess

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. 

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.

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. 

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. 

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. 

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, body actually craves emfs thinking it can use it for energy) and trace minerals.

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. 

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:
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. 

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!

Tuesday, January 12, 2016

New Hope

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.

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. 

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. 

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. 

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. 

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. 

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.