Happy Lyme Disease Awareness month to all!
For Lyme Disease Awareness Month I created a quiz which you can take & share that tests general knowledge about Lyme Disease. It's both interactive & informative, so put your smarts to the test and take it below!
If you want to take the quiz in a separate window, or have the ability to share a direct link to the quiz, you can find that HERE
Happy Lyme Disease Awareness month to all!
I'm going to do things a bit differently for this post. I really want to highlight just how long it takes in this medical system to get an issue/new symptom resolved. With turn around time, wait times, and appointments to discuss next steps, it can (and usually does) take months to resolve a new issue. So, for this purpose my post will be an update, however it will be done in Chronological order. I will breeze through Dec/Jan/Feb because I have a whole detailed post on that here, but for the rest I will be more specific.
December: Mid December I begin to get a new pain in my stomach. At first it comes and goes, and often my entire stomach hurts. I brush this off as a transient symptom, and try to trudge through.
January: Things during this month only amplify. The pain becomes much more severe and much more difficult to predict or control. It's all complicated because I find I am fighting C.Diff, so a lot of the pain gets pawned off as being placed under the column of "probably from C. Diff." I knew however that there had to be more to it. Often it was hard to point to just one area of pain, because so many things hurt in so many different ways. I have had C.Diff in the past, and it's never hurt quite like this before. This felt like a very new thing to me.
February: Around this time I have blood testing done & it seems to look like some of the pain is due to Sphincter of Oddi dysfunction. This again is something I had dealt with in the past on a few occasions since I no longer have a gallbladder. In a way it felt familiar but, this time it was SO much more severe, and the location of the pain epi-center moved. I began to eat a liquid diet, and then a low fat diet which wouldn't trigger the attacks. This however did not seem to be the smoking gun. At the end of February I had an ultrasound done. The ultrasound was inconclusive. The only thing it showed was a more dilated common bile duct. This can be larger when you have Sphincter of Oddi, or have a removed gallbladder, so while it answered some suspicions it did not really give a solid answer. I did not quite fit into the box of this being primarily SOD, or just SOD.
March: I know how absurd this can sound to an outsider reading this post. How hard is it for me to point to a source of pain and figure it out? I ask myself the same thing all the time, but it simply is not that easy. I had (have) pain absolutely everywhere (remember C.Diff). Then I had an epicenter of pain which covered a quadrant, and it was large enough that I could not tell where it was coming from: my pancreas, my large intestine (transverse), my small intestine, or my stomach. I have a very tiny frame, and it is all packed in there. Often times it felt like multiple things were spasming or hurting at once. On any given day my "guess" of what was hurting would change. I absolutely did not know, and guessing was just driving me mad.
So, finally, around the edge of March I was approved for an abdominal X-Ray. However, after the X-Ray it took some time to get the proper radiologist to read it and give his report. I would say there was about 10 days while I was waiting to get some answers. This was probably the most helpful scan of them all, because it visibly showed three issues in the area where I had my most pain. The most notable takeaways were that a portion of my transverse colon was tightly spasming, not only causing pain but also not allowing things to move through that area properly. A little bit below that was an area in my small intestine which looked to show some bowel wall thickening. So, what the heck is going on? I mean, I got some answers, but the X-Ray can only show so much, and a more detailed scan was needed to find the cause and link
April: It's now April. I am still in a lot of pain, my large intestine feels inflamed and raw almost 24/7, and with each passing week/month I can eat less and less food. Eating too much solid food too many days in a row will bring pain, because once it reaches that tight portion of my large intestine it has difficulty passing through. So I begin to alternate liquid diets in between actual food. Because of this I often feel like I am starving. Also, not only has solid food become problematic, but a lot of my usual safe foods are causing me extreme pain. I would eat what should be an okay food, only to have about 2 days of stomach pain in so severe I can hardly move. It's getting more important than ever to get answers to rule out something more sinister. At this point I am not against exploratory surgery because the pain is that unpredictable and that bad.
Finally, we move on to the next step, which is a CT scan. Due to my MCS I am allergic to the contrast solution, so I received an abdominal CT without contrast. We were aware that this might prove to be less than ideal without contrast, but the plan was to start here and repeat with contrast (and steroids) if necessary. I got the CT scan done, and surprise surprise, it was inconclusive. The lack of contrast not being able to highlight certain areas made a set diagnosis impossible.
We are now almost to May, and we have to change directions a bit. All of these tests I have had ran (many which I did not even list) are very expensive. Insurance is not only slow, but also notorious for denying claims. Due to financial costs another CT is not in the cards. For now it is on the back burner as we start to pursue answers from a different avenue. Although still extremely costly, we began with a laundry list of blood work, specialized panels and cultures, as well as CSA's from a few different companies. A large portion of this is out of pocket, and just to give an example the CDSA 2.0 test is $700 out of pocket, the Geneva Labs CSA with Parasitology is $500 out of pocket, my MRT intolerance test was $700 out of pocket, and the Array 10 is $1,300. Out of pocket... all of it. I know I have said this before but it is legitimately survival of those who can afford it. And in my case I have had to choose wisely and also spread tests out, because its an impossible cost burden all at once. But, if I need answers, how else can I get them? How else can anyone get them? I also got a lot of blood-work done through insurance, which will have co-pays and deductibles, and I can hardly wait to receive that bill in the mail and promptly faint (ha).
Now: Waiting. Waiting for results, waiting for more test kits, and waiting to be able to order other tests I need. In the mean time I am fighting this pain which waxes and wanes in intensity on any given day. I am diligently keeping a food diary to find triggers, and I am hoping beyond hope that some conclusive answers come.. soon. In the mean time I only found one thing which takes the edge off and it's called Bentyl. My friend Hannah calls it "tummy valium" and I laugh because that is so spot on! The side effects of Bentyl however are not great, including feeling woozy, dizzy, sometimes nauseous etc. So, I reserve it for times of great need. It helps to calm that tense spasm in my large intestine, and any tiny bit of relief helps.
In the mean time I am really trying to enjoy my good moments, and my better days. When I have a chance to find some joy in my day I really focus on it. I don't want to let this sink me or take my spirit. It's almost May and I feel just as baffled today as I did back in December. The health care system moves so slow, and I am sometimes baffled as to how many months of my life can go by in a flash while desperately investigating. Keep in mind, I am actually a "lucky case" because my mother is a physician who can help fast track some things. Yes, THIS is what it looks like to have things fast tracked. I suspect, judging on what tests are still to come, their turn around time etc that I still have at least a month or two ahead of me before I will have more clarity. It is a waiting game, and a coping game. I try my best to put my attention elsewhere, especially on bad days. I know I have pretty much retreated from the people around me recently, but it feels impossible to connect sometimes through the pain. But, alas, I'm trying.
If you made it this far, thank you for reading! I hope this post provided a small amount of insight into navigating the medical system, the kinds of costs incurred, and why it takes so long to get answers. I hope to have a better grasp on this soon, and of course when I do I will absolutely share.
I know I might not hold the "popular" opinion on this topic, but I felt like this needed to be said. As more celebrities come out and speak of Lyme Disease it's really important to hold them accountable for how their words affect each and every patient globally.
Kelly Osbourne is releasing a memoir about her life. Yesterday, lot of media outlets got an advanced copy, and when they read her chapter on how she battled Lyme Disease they wrote up news pieces with titles such as "Kelly Osbourne Almost Died From Diagnosed Lyme Disease" and "Kelly Osbourne reveals stage 3 neurological Lyme Disease diagnosis in new memoir." Pretty shocking headlines! When I saw them I felt shock, then sadness for her. But as I waited on the article to load I also felt hopeful. I thought, "Wow, another celebrity will help advocate!" However, then I read the article and I was utterly disappointed. Her snippet goes as follows:
Trendy disease... that struck a nerve. So let's break it down, shall we? Yes, in Hollywood there are more and more celebrities coming out and sharing the hell they went through when they contracted Lyme Disease. It's not just Yolanda Foster; it's Avril Lavigne, it's Crystal Hefner, it's Kris Kristofferson, it's Debbie Gibson, it's Ally Hilfiger and so many more. They have lent their voices to the cause, they have advocated for the little people & they have given a face of legitimacy to this cause. This is so important and necessary right now, because for every one celebrity speaking out there are 10 other voices saying chronic Lyme disease isn't real. Patients are mocked by doctors telling them "it's all in your head" & have to fight tirelessly to be taken seriously.
If you watched the Real Housewives of Beverly Hills you saw Yolanda Foster fighting through 2 seasons of ruthless women saying she has Munchausen syndrome. They all speculated if her illness is real and gossiped about if she's even truly sick or not. She put up with a LOT, and sadly it's what so many people go through. In fact, Yolanda is releasing a book this year called "Believe Me: My Battle With The Invisible Disability of Lyme Disease" which is a memoir about her fight with Lyme. Even Yolanda, a well known figure, had to fight through getting made fun of & not being believed. It's hard out there for a patient! Therefore calling it a "trendy disease" is so hurtful to our cause. Because oh yes Kelly, everyone is just begging to be diagnosed with a life altering illness! People are lining up with the hopes of contracting Lyme disease so they can suffer through hell & lose pieces of their lives. Is she kidding?? Mind you this was in her book... it was proofread and edited MANY times. This went to print, with the full knowledge of what those words meant. This wasn't a slip of the tongue or an accidental comment. That's what makes it so much worse.
My next question would be, what does the fact that she believes it to be a "trendy disease" have to do with her not speaking out sooner? Is there some rule in Hollywood that only X amount of people can have a particular disease? I absolutely do not understand how that plays into a reason to not speak out. I could get her saying it was private & she felt like she wanted to keep it to herself. But that's not what she said. It's like, whoops too many celebrities beat her to the punch so she couldn't speak out about it? It's baffling to me. Because then I ask the question of, why now? Is now a good time to admit you had this "trendy Disease" because you had a book to write & it made for a chapter with drama? Lyme Disease is not a punch line, it is not a thing to be used for book sales or headlines. This disease takes people's lives. This disease is ruthless, and I do not take kindly to what feels like an insult to this community.
So what should she have said? If her point was that a lot of famous people have recently shared their diagnosis of Lyme disease then maybe let's look at WHY that's the case. Lyme disease is an epidemic, and its growing every single year by astronomical proportions. It is the fastest growing vector borne infectious disease in the United States. It's only natural that it would also affect celebrities, because no one is immune to it. Kelly had a great opportunity to parlay that sentiment into discussing how Lyme disease is a growing epidemic & how so many people (famous or not) are being diagnosed daily. But she chose not to. She had this great moment to convey that, but ultimately she chose poorly.
There are good advocates & there are bad advocates. Kelly is an example of a bad celebrity advocate. Do I believe she suffered? Of course I do. But I also believe she lives in a bubble most Lyme patients do not. She had the money, connections & resources to call up a personal Doctor, fly to Germany & get expensive specialized stem cell therapy and care. She is lucky and blessed enough to call herself cured and healed. For her it was a quick fix & an easy fix. Perhaps that bubble she lives in leaves her far removed from seeing the real suffering and horrors that every day normal patients go through. Perhaps she lives in a different world in Hollywood & that was her experience. Maybe in her mind it was a "trendy disease" that she felt embarrassed to be lumped in to. So she stayed quiet, got well & went on with her life. Good for her, but that is not reality. Lyme patients would do anything to get well in a snap. Unfortunately that isn't the case for the majority, yet in her memoir (which is making rounds nationally) it was portrayed as such. Like hey, no big deal, just a quick 2 week treatment and you'll be fine! This will only fuel the skeptics & the people who wonder why Lyme takes so many years & years to recover from.
What happens now is her choice. If she really cares she could use her celebrity status for good. She could lend her star power to raising money for advancements in research. She could team up with any of the organizations for awareness campaigns. The possibilities are endless. But I suspect that once this gets her book sales she will fade into the background and not speak up about it again. That is certainly her prerogative, and its certainly her decision how much of her personal life and health she shares with the world. But boy would I love to be surprised and be wrong about this. I hope she realizes her mistake and apologizes. I would LOVE to see that happen.
I really feel like she hurt the greater cause and only furthered her own cause by telling a quick jarring story as a snippet in her book, with no regard for how her words will hurt a community who has fought tirelessly for recognition.
I promise you that Lyme disease is not "trendy" by choice. Perhaps Kelly should take a gander at the Lyme Disease obituary page to see that. This is an epidemic on the rise, and as an advocate I will never stop fighting for the recognition of this disease globally. I hope her words don't undo any progress that was made, because we have all fought way too hard for every single ounce of advancement which was made to this cause.
Pain is as much of a mental game as it is a physical one. This is true on many levels, one being just the simple fact that in order to muscle through pain you have to stay in a good head space and remind yourself that it will pass. You have to keep the hope that you will get through it, or else it will consume you. This is something I've known for a long time, but it's only recently that I've become even more aware of another way in which pain is a mental game; the unknown.
When I began my very first treatment for Bartonella I had mentally prepared myself. I knew my symptoms would flare, I knew I would experience herxheimer reactions, and I knew that while on treatment things could be unpredictable. But the key here is that I knew why all of that was going to happen. Therefore when my symptoms did inevitably flare I understood that my pain was a direct cause and effect of treatment, and therefore I was prepared & educated. Somehow on a mental level that helped me get through it.
It's a little bit like getting your ear pierced. Let's say we have Person 1. While her ear is being prepped she is told that she will have a few moments of quick pain as the piercing gun goes through, and then afterwards there will be some soreness. Person 1 is prepared with all the info needed, and surprisingly the piercing isn't so bad. Then you have Person 2. She is blindfolded and can't hear, but she's just minding her own business kicked back on a couch relaxing. Then suddenly out of nowhere a sharp stab goes through her ear and it begins to throb and ache. Person 2 is frantically trying to figure out what just happened, how to make the pain stop, or what to do. The same exact thing happened to both people (their ears were pierced), but one was prepared & knew WHY the pain would come. Which person do you imagine would report the highest levels of pain for the same procedure? Yup.. Person 2!
Now that was a silly example, but it was the closest real world comparison which I was able to think of. Mentally, knowing that pain is coming, or even knowing WHY it's happening makes it more bearable. I've experienced this phenomenon time and time again. I've been up against some of the most brutal herxheimer's during my time in treatment, and my family can attest that I pushed through them like a boss. I was physically exhausted and going through the ringer, but I was mentally still swinging. I had a purpose & there was a cause for my pain. I understood that, and even if it just took an ounce of the edge off, it helped.
But then there's the other type of pain.. the pain which doesn't have answers. The pain which comes unannounced and doesn't respond to any of the usual methods of relief. The pain which you have to spend hours researching online to find the cause & try to stop it. The pain which is not tied to any kind of direct cause & effect which you can see. The pain which brings you to your knees mentally. This is the pain which exists without the WHY, and it exists in such a powerful way that you wonder if you will survive it. You wonder if you're slowly dying on the inside. You begin to wonder if you're going crazy or if something is seriously wrong and you're just missing it. Tears are shed; from frustration, from fear, from the unknown. Suddenly nothing feels like it makes sense, and your only purpose is working backwards to find the puzzle pieces which will stop this pain.
Sometimes I feel myself crack underneath my strong exterior. I feel the sadness levels rise as they pull me under the waves of helplessness. And those times are when I'm living in the world of "Pain without the WHY." My mind starts to lose steam when it doesn't have any concrete answers to fuel it. Pain feels much tougher to bear when it doesn't come with an expiration date. When will it end? Why did it start? How can I ease it? What triggers it? Living in a world without the WHY is like living in a snow globe where the same song is playing over and over but you can't escape. You're simply trapped with the unidentified pain searing your body on repeat.
I have yet to find a good way to cope when I'm stuck in the land of "Pain without the WHY." I wish I could say some prayer or meditation get me through the long months between answers. I wish I could say anything actually does it for me, but truly the only way I keep going is by never giving up investigating. I put my detective cap on & I start to hunt down the clues my body gives me. I pair that with test results & gut instincts until somehow it starts to translate into real world results. I've learned that no one else is going to fight for you if you don't do it. No one else is going to solve your worries, your pains, your fears. Mentally it's just you. And ironically the very thing which breaks you (the pain), is the very thing which won't stop until you put the work in to make it stop. Living in the "Pain without the WHY" is a lonely locale. Table for 1 please. It's isolating to be on a deserted island fishing for answers, and sometimes it wears on the soul.
But I know that the one thing I'm not alone in is this feeling. If you've experienced pain then you know the difference between pain with a purpose vs pain without answers. They live on different scales, and it feels like they exist in different realms. It's a mental game through & through, and only the strongest survive. So here's to strength... strength in the darkest hours, strength in the longest months, and finding enough strength to keep the boat afloat until it lands back on the shore of certainty.
Having a chronic illness like Lyme Disease is expensive, and the financial burden often leaves patients making tough decisions about their education. That's why I am so excited to share this Chronic Lyme Disease Scholarship! This scholarship is open to both high school and college students and was created by Nate Preston, an attorney who has a personal connection to Lyme Disease. Nate has several close family members who struggle with the illness, and after seeing the physical, emotional, and financial damage of the disease he wanted to give back. This is such a selfless act, and one which will truly help a student in need.
Who is eligible?
One winner will be chosen for this scholarship. Candidates must be a student who has suffered from chronic Lyme disease. Applications are open to current college students as well as high school seniors, who are accepted to or currently enrolled in a college or university within the United States.
How much is the Scholarship?
$1,000. This $1,000 scholarship is designed to ease the financial burdens of one student each year who has spent a great deal of money in medical expenses for the treatment of chronic Lyme disease.
How is the winner chosen?
The award will be based upon academic achievement, school & community activities, and an essay of 500-1000 words describing how Lyme disease has affected the student’s life, especially in regards to their values and educational and career goals.
Where can I enter?
Visit this link HERE.
The best news? This scholarship will be offered yearly!
This years application deadline closes April 30th, and the winner will be selected by mid-May.
Good luck to all who enter!
What's that saying? "Man plans, God laughs." Ahh yes, this could not be more true, and how often I forget it. In my last blog post I had wrote about staring a vigorous visual therapy program. I began this program & completed about 3+ weeks before having to stop due to other health issues which arose and became a priority. I was burning the candle at both ends & something had to give, so the visual therapy was put on pause. It was a tough decision, one not made in jest, but ultimately the right thing to do.
What happened? Oh boy, where do I start! Around the middle of December I started to have some pretty tough stomach aches. They were in my mid-line stomach area & would wax & wane in severity. Because so many of my symptoms cycle through I tried to tough it out thinking it was going to leave soon.. it didn't. Things got worse & by early/mid January we discovered I was fighting C. Diff. The area of my colon most affected was the transverse & descending, but honestly the pain wasn't the same as when I had C. Diff in the past, which is why I missed it for so long. In some ways it was, but in other ways it was another kind of ache I couldn't quite put my finger on. Therefore it really eluded me for a long time to check for it. But alas I had an answer & could get started on treatment for it asap. I believed this would be the answer to all my stomach woes. In fact I soldiered through visual therapy this entire time, which if you've ever had C.Diff you will understand what an accomplishment that actually was. However the C. Diff, I would find out, was just the tip of the iceberg.
As January lumbered on the pain did not get better, and in fact it just got worse. The mid-line pain radiated to my back and my shoulders & would come on in strong uncontrollable attacks. I no longer have a gallbladder, but the pain was reminiscent of when I struggled with that except much more severe. So we started investigating in that direction and realized the pain was coming from my pancreas. And the reason it hurt much like my old gallbladder pain (often affecting my liver too), was due to the Sphincter of Oddi. I hope to write up a comprehensive post all about SOD soon, because it's a fascinating little valve which is small but mighty. When the SOD spasms it wreaks absolute havoc on the pancreas and liver. More so, it wreaks enormous pain.
Both your bile and your pancreatic juices flow to your small intestine through a common duct that is opened and closed by a round valve. The valve is a muscle called the sphincter of Oddi. Sometimes the sphincter of Oddi goes into spasm; It clamps shut and cannot relax. This is called sphincter of Oddi dysfunction (SOD). The condition causes intense belly pain. Your digestive juices back up into your pancreas and into the bile ducts of your liver. This can causes inflammation of the liver and pancreas, and in some cases pancreatitis. It is most common in individuals without a gallbladder.
I can only describe a Sphincter of Oddi attack as a gallbladder attack on steroids. In January/February I was having them almost daily because I kept eating and not realizing I was triggering it over and over. That might sound silly but the effects aren't instant. So, the eating brings on the attack much later .. often many many hours later. It's not uncommon for me to have an attack 8 hours post meal, and then deal with mini attacks and painful pancreas inflammation for days following. Before I understood what was happening I was at a complete loss. I also struggle with a LOT of stomach issues, and having this pancreas/liver pain on TOP of C. Difficile was kind of my personal nightmare. The two together felt like someone chewed me up and spit me out. Everything hurt, and pinpointing what exactly hurt was hard to say. Once we realized what was happening I immediately went on a liquid diet. I lived on shakes & occasional crackers for 3 weeks while trying to allow my digestive system & organs to get a break. I was so weak, so exhausted, and battling a lot of pain. Every inch of my body hurt and was depleted. I laid in a ball and drank shakes and just tried to survive this period of time, because it was a lot.. mentally, physically, you name it.
How do I feel now? On the mend, but not quite there. Managing SOD isn't easy. I've struggled with it in years past, and it always came on just as mysteriously as it went away. As far as this occasion, I really can't say for sure what the trigger was. Why it flared up now out of the blue is eluding me, but I have a theory which I'm working to confirm now. All I do know is that in this process I discovered castor oil packs, and I LOVE them. They are the only thing which offer some soothing relief since any kind of pain medicine is a big no-no with SOD. Pain medicine actually makes SOD worse, so that makes the condition trickier to manage.
For now I'm still fighting the C Diff & juggling the anti-microbials which make me herx, but are necessary. It's a fine balance to find a mix which will kill the pathogen but spare my body/liver (especially with mine being in a more fragile state). I'm also playing an up and down game with my SOD pain & digestive difficulties. So it's a little like two steps forward, one step back. I'm making progress, slowly but surely. Some periods thing's get worse (like high stress situations), and then I feel like I get thrown down into the trenches again, living on a liquid diet and getting IV fluids until my pancreas calms down. I have good stretches and tougher stretches, but I am determined to find a lasting solution. When I'm back on my feet and more stable I will have to start from the beginning with visual therapy, which is a little disheartening. However, I've come to peace with it. Sometimes life throws a wrench in your plans, and although I don't know why it occurred I'm just trusting in the process. I can only take one day at a time & adjust as needed. So for now, I'm adjusting to this & will keep taking steps. Thank you to everyone who takes a genuine interest in how I am progressing, and how things are going. The prayers and the support are deeply felt.
I want to sincerely thank everyone who purchased items from the Christmas Shop! Although this is long overdue, here is the confirmation that the funds were received, and I wanted to share with everyone that we raised over $500 for Global Lyme Alliance! This is a victory and accomplishment for everyone who helped by purchasing items, sharing the link, or wearing a shirt in support! I'm very grateful, and I hope to do more fun things for awareness in the future.
2017: What's To Come? Visual & Vestibular Therapy + How Brain Damage From Lyme Disease Has Affected Me
Over the course of the years I have dealt with a lot of symptoms. However, out of all the issues I have dealt with, the most frustrating and life limiting have been my neurological visual issues. I have spoke about this on my blog in the past, but not so much recently. The reason for this was a feeling of uncertainty. No doctor could tell me exactly why this was all happening to me. I knew I had some internal brain damage, but there was no solution presented to me short of: treat the infections and hope it resolves. I did have an incredible visual therapist & optometrist who found two visuals isues I struggled with: Convergence Insufficiency & Binocular Fusion Disorder. I did visual therapy for both, and it improved on the tests, but did not translate a whole lot into my every day life. In some ways it did, but the results did not last. I attributed this to the fact that I still had infections which were affecting my brain. I just kept hoping and praying that as I rid my body of infections that everything else would just fall into place, and the visual issues would improve as well.
So what do I mean by visual issues? Well, I have quite a list of issues and symptoms, and I wanted to begin by listing them all...At least all which I can recall. Granted, a lot of the things listed below are problematic for more reasons than just visual things; I have other health issues which prevent me from doing them, but for the purpose of this I am just listing how it affects me from a visual perspective. I have had these issues for years (progressing with time), so this is a comprehensive list of ways I am affected.
Things which bother me visually:
All of these listed things are difficult or impossible for me. They make me feel nauseated, dizzy, and fatigued. I get eye pain, clammy hands, hot flashes, pallor, lightheadedness, and feel seizurey. I often say I feel "flustered" and like I want to "jump out of my skin." My anxiety spikes and I liken it to being in a room with a million strobe lights flashing while desperately trying to get out of there. These symptoms are overwhelming and all consuming. I ball up and tremble while having paralyzing anxiety and nausea with a queasy stomach while fighting dizziness. Light, sound, smell.. it all becomes too much. It's like someone plugged my nervous system into an outlet. Every single thing feels overwhelming to a degree that I can't properly put into words. I often cry because it is the only release I have, or otherwise I feel like I might explode from how overwhelming it feels. All I can do to stop it is lie in a dark room and just ride it out. It eventually eases, but sometimes it takes hours, and other times I feel the effects for days.
My world feels really small right now. Getting out of bed and taking a walk outside is really intense. The wide open space, the scanning, and the light leave me feeling very overwhelmed by it all. In the house even things like baking or decorating a tree or other housework would cause me to get sick to get visually overwhelmed. I can't flip my head too fast, I can't get on exercise machines, and I live my life moving very carefully. Everything is done carefully so I don't get dizzy, so I don't move too fast, or scan too much. My world feels much too small, and much too constraining. I do very little and feel like I am instantly fatigued and sick from it. Everything I do is limited by these symptoms, and I have to stop and rest and regroup multiple times a day. I have spent years of my life searching for the answers. I primarily consulted online groups for people with Lyme Disease because I thought I might find a kindred spirit there. I didnt. I have always felt very alone in this. Even after seeing endless amounts of Doctors, not one has ever said to me, "Yes I understand this, here is what you have." The best I got was my current LLMD who suspected it was caused by infections and we had hoped it would resolve and other things resolved. That was the best I had. It was the only real hope I had.
This kind of visual sickness was not the typical motion sickness. It was not coming from the inner ear, and Dramamine did not help. Through my ocular-neurologist we discovered an area of brain damage which we suspect was caused internally (by the Borrelia). This Doctor told me that likely was the cause of my symptoms. He said my motion sickness came from a disconnect in my brain between the eye and ear. There was some kind of damage there, and the two did not connect and work properly, leaving me with these visual issues. Again, the hope was just all being held in it maybe just going away one day.
Well, here I stand in January 2017 and I am now embarking on a new visual & vestibular therapy which prayerfully will heal the problem areas of my brain. As with anything, there is no guarantee. There is just a well trained Doctor who heard my plight and really felt like my issues line up with other patients he has seen, and therefore there is hope. Much of what I have accomplished so far has been built on blind faith. This is much the same, because although I check pretty much every box for this condition, the one big factor which sets me apart is the brain damage happening from an internal cause. All the other patients either inherited it or had damage from something external such as an accident. For me it was something which occured suddenly (starting slowly in 2009 and progressing), with no family history, and no outer trauma. So I am a new kind of patient in that regard, and also a new test subject without that same level of guarantee attached to it.
Many patients who have this condition notice that after a while their body starts to compensate to help them. For example the brain will shut off one eye, or create tunnel vision, or other conditions such as that. It is a survival mechanism because motion is too difficult to bare. The body slowly closes the patients world down by reducing motion as much as possible on it's own. I believe this is why I also developed Convergence Insufficiency (which I was diagnosed with a couple years ago). Convergence Insufficiency is when the two eyes can't work together and the brain shuts down one eye to compensate. These patients have spacial issues, often bumping into objects or not understanding how close things are to them in the world. This was and is a huge problem for me, which I now strongly suspect developed as a defense mechanism. It is also why it improved a bit with CI specific visual therapy, but then worsened when I stopped. The root cause itself was not solved yet.
The most interesting part of all of this (at least for me), was how it affects the autonomic nervous system. This condition keeps the body in a constant flight or fight mode. The autonomic nervous sytem becomes revved up, and stays revved up, and it puts a huge strain on the body. If you have read my blog for a while you know how much trouble I have with my autonomic nervous system and how my body stays in overdrive and I am very overly sympathetic dominant. With therapy, this has improved for people, and I am prayerful and hopeful that will be the case here as well.
I will begin daily extensive visual therapy for this condition. It will be hard. It will be uncomfortable. I will likely be blogging on here much less, and be much less present so I can devote myself to it 100%. Some patients get worse before they get better. Most all patients feel terrible during the visual therapy, and I fully understand and accept that it will be tough, but I am determined. And I pray that this will help. All that I can do is try. I plan to live in the moment and take each phase step by step. I will be blogging all my experiences on a separate sub blog, which I will make public when I am further along/finished. I havent decided just yet when I will put it out there, mostly because I want to be sure of what I conclude before I make it public. It will be more of a tool for me to look back and see how things do or don't progress. I will also write more about this condition on that blog, but for now I don't want to invite too many questions (there is very little about it on the internet), by calling it by name. Mostly because I do not know if it will work, and I would hate for someone to find my blog by it's name and either 1. get unrealistic hope, or 2. get discouraged. I hope to be able to share more with you all on it's "official name" and diagnosis in the future.
For now I will sign off and wish everyone a very happy 2017. I will blog and be on social media as often as I can, but if I don't reply to your emails etc then this is why. I also ask for prayers in every which way. Prayer that its successful, prayer that it's tolerable, and prayer that this is what I have been so desperately searching for.
Much love to everyone
There is a newly launched option which I just added to the Christmas Shop, and I wanted to share about here. Do you love the design but wish that it were smaller/larger, or perhaps placed in a different location (such as a a pocket tee design etc)? Do you want the tee in another color, or wish you could tweak it to your preferences with extra text or additional graphics? Well, now you can! Some people prefer smaller designs, other people prefer them on the back instead of the front etc. Some might even want to add a monogram on the sleeve or somewhere else to make it their own. You can now edit it to your hearts desire in any which way!
How To Do It?
When you go to the shop you will now see at the top an area which says "Shop" and one that says "Create"
From there you would click on "Create," which them opens up the design element to let you tweak it to your liking. I am not sure if this can be done on your phone, but likely it is best done from a computer.
It's as easy as that! You choose your product, then you can edit the current design in any which way. You can size it, move it to the back, move it to the pocket area, add your own extra text, or even add your own graphic/image! If you want to make special family shirts you can put everyone's name on the back to personalize it. Or if you want to gift it with a special message you can also do that. The check out page offers gift options, including gift wrapping.
I hope this can help give it a personal touch to anyone who felt that might be nice!
Visit the shop HERE
I write a lot. I write when I feel; I write when I need to be able to feel. Words soothe me in a way that makes me feel understood, even if it's just to myself in the quiet darkness of the 2am night. I wrote this during a particularly difficult time not too long ago, and the words still strike me in a way that feels significant. I wanted to share. Perhaps it will be just what someone else out there needs.
Sadness can rob the world of color. It makes everything gray. The sky doesn't look quite so blue, and the stars don't twinkle much the same anymore. The air in the room feels heavier; like the invisible weight of all my worries are trickling through each breath. I breathe in the sorrow surrounding me, and it's almost as if it comes to life. This numbness feels familiar, like an old friend embracing me tightly until I'm stuck in its shackles. Ever so slowly the sadness spreads its reach and holds my heart hostage; weaving it's hooks through everything that used to bring me joy. Bit by bit melancholy becomes a part of every day life, and I look around to find I don't know exactly who I am anymore.
Amidst all the sadness which has attached itself to my soul, I push through it to reach a small glowing ball of what I call Hope. This Hope is small, but mighty. Although it's just a tiny flickering light, it shines through all the darkness and pain. This light breaks through the shadows of doubt, the weight on my shoulders, and the voice in my head telling me to give up. You see, Hope doesn't need to always be seen to be felt. That warmth in my heart, that tingle in my chest... It lets me know I'm alive. It let's me know that it won't let me go under. Like a lifeguard in treacherous waves, Hope saves me when I can't see a way out. It provides a buoy to float on just long enough to pick myself up and start feeling again.
Some days Hope might feel like it's in short supply, and almost obsolete. But it's there. All that matters is in that moment it's still there lighting it's flame in the darkness. Each flicker, no matter how small, signals to "keep going," "keep fighting." It tells you, "I will see you through. I will light your path through this long tunnel, just follow me. Stay with me. Don't give up on me now. We're almost there."