Still

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....

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.

Lyme Times 3

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.

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.

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.

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.

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.

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. 

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. 

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. 

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