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....

And Then...

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. 

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.  

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. 

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. 

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.

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. 

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.

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. 

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. 

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. 

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. 

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. 

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.

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. 

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. 

Going Backwards

What a first "week" back to work. I say "week" because I am only working three days but that is all I can handle right now. Actually, I am not even sure I can handle that. I guess it is not fair to judge how I am doing off of only 4 days but it was a lot tougher than I thought. First off, my Lyme cycle seems to have shown up early and has decided to stay late. I thought I was going to escape my first few days with no real problems. Wrong! The joint and bone pain that started back in over a week ago has managed to stick around. That is so frustrating. I was so excited to think that the Vitamin C was going to help eliminate it. Maybe it's the cyst buster I  started taking causing a herx. Who knows for sure but I was just excited to think it was gone. I was definitely more tired than I thought I was going to be. When I get off I am ready to skip dinner and go straight to bed. Problem is it's only 3:30. I was just tired and in pain. I have also had a sore throat off and on. This morning I woke up with the sore throat and a headache. By noon I was feeling horrible. I just wanted to be in bed. I took some Advil and went to take a nap in my car. How sad it that? I have to go into the parking garage and take a nap in my car at lunch. I did make it through my day but I honestly didn't expect to be awake right now. The headache is gone for the most part but my back hurts, the bone pain is starting in, my muscles hurt...on and on the list goes. Other than having a major heart freak out today, so far I have had almost every symptom I have ever had. My face started to go numb for a few seconds, I had occasional burning nerve pain, ringing in the ears, burning sore eyes, brain fog, a twitch now and then. It was just a rough day. Unfortunately it wears me down mentally and emotionally. I am expecting the rest of this week to be rough. Maybe some of this has to do with my chelation for heavy metals as well. Regardless of the reason I get a two week break from my Tindamax (cyst buster) and hopefully my Lyme cycle will be done hear in the next few days so next week I can get an idea of how I do when I am feeling somewhat decent. It has just been a rough start. I have labs I have to do that I keep forgetting to do this week and I am hoping to hear a little something from the doctor on Thursday.
One good thing has been that my coworkers make me laugh. I have missed the joking around and it feels good to laugh a lot. On the flip side, just as I thought, things are changing at work. Roles, responsibilities, projects- a lot of it has yet to be revealed but I know for a fact things are changing. I also know that I was only approved to work this schedule for 60 days, calendar days. So basically by July 7th I am either going back to work full time, asking for more time to work a modified schedule, or well lets not go there. Right now it is really just going to be a lot of prayer and taking it one day at a time.
I don't want to go to bankrupt. I don't want to keep asking for money or help. I would like to move my family back into our own house. I can't sacrifice my health though, for any of that. The money or credit score or even having our own house again isn't going to mean anything if I am truly unable to function because my health has gone down the toilet because I was trying to do to much when I wasn't ready. This is a really tough position for me to be in. I could really use your prayers right now. Although I could always use prayers for healing or symptom relief and for finances, what I really need are prayers for guidance, direction, discernment. I need to know what God wants me to do. I need the right doors to open and the other doors to close so I can just know I am following God, not myself, my husband, the world.  I am trying to keep a positive attitude. I am not sharing all of my negative thoughts on Facebook and am putting on a happy face as much as possible. This is my one place to just let it out. Thanks for keeping up on this crazy journey of mine. You have all been amazing. I am blessed by your kind words, your prayers, and your support with my treatment.  Be back soon I'm sure.