I am alive! I write to you from the infusion room as I receive IV saline, nector of the gods.
I have all sorts of things to talk about, including more cheerful parts of my life, but for this post, I am going to focus on my health. Spoiler alert: I have spent most of my absence from blogging managing my medical issues, and taking panoramas of waiting and exam rooms.
Not having miraculously healed means continuing to argue with my insurance company about IVIG. That’s right – 18 months from when I mistakenly (pharmacy error) received IVIG, the IVIG saga continues on! There were many bumps in the road that have lead to me still not having it, one being the prescribing doctor breaking up with me. She used the good ol’ cliché of “It’s not you, it’s me.”
In all honesty, it was an incredibly frustrating turn of events, however I also understand how overwhelming my case is. My issues do not fall squarely in one medical specialty; therefore no one particular doctor is equipped to fully handle my care. What the break up meant for me (besides the need to seek out therapy since I now have trust issues… 😀), was I needed to entirely restart my IVIG case with a different doctor. This was overwhelming news, especially since I was still recovering from a different IVIG related bump in the road… The one where a particular IVIG company mistakenly told me in writing, and in 6 different phone call interactions, they had gotten insurance authorization, and mailed me all of the IVIG supplies, complete with IV pump and pole, 10 grand worth of medication.
YES. Seriously. Two separate specialty pharmacies, two totally different insurance companies, 6 months apart – same exact issue: they claimed (several times, I might add) they had obtained insurance prior authorization when, in fact, they had not! Fortunately, I wisened up the first time around and, by calling my insurance company myself, caught the lie error before anything was infused. Having to return the medicine I am trying so hard to get approved was not a joyful experience. In its entirety, the IVIG saga could be a short book, but suffice to say, it all has ended up consuming much of my available energy.
The doctor who took over prescribing me IVIG did a peer to peer appeal about a month ago. This entails my doctor talking to an insurance doctor and explaining why he feels IVIG should be considered medically necessary in my situation. Typically, I get a rejection letter from my insurance within days of a peer to peer, however this time around, they seemed to be taking their sweet time. This made me hopeful they were carefully considering all of the evidence we provided, because right now, the IVIG policy doesn’t include my condition at all. It isn’t listed as not considered medically necessary, sometimes medically necessary, nor medically necessary, and none of their IVIG policy citations include paper reviewing my condition; it simply isn’t listed anywhere in the entire policy. Deep down, I suspected if they were considering the evidence, it was in order to write a new medical policy, which would include my condition in the IVIG policy, but for the purpose of stating IVIG is not considered medically necessary. Then, I thought of an even more likely explanation…. they forgot to send me a denial letter. I called four days ago, and after a month of eagerly checking my mail everyday, it was confirmed; IVIG was denied. I need to talk with my doctor, however the next step would be a written appeal.
Quality of Life
My health related quality life is incredibly low. I spend hours every single day managing my illness enough to simply to exist, and experience chronic pain. The minimum amount of time it takes me to fall asleep at night is 2 hours, the longest is 5 hours – good thing I enjoy reading! Some days, all I can do is eat a meal or two, basic hygiene, and a few stretches… and even those are a struggle. Some days, I can do the aforementioned activities, then a few other tasks, such as loading the dishwasher, cooking, or going for a drive with Jake.
Spontaneity is out the window, but with medication and planning, I can still do “big” days once a month or so without my illness slipping out of my control. Tomorrow is a big day for me. We are going to my family’s cabin for Father’s Day. I have structured my entire week accordingly. I have rested the past few days, and expect to be on bed rest for a few days after tomorrow. I am looking forward to tomorrow, and plan to enjoy myself. Just because I cannot do things I enjoy as often as I used to, it doesn’t mean I do not enjoy them when I am able to participate.
While my health related quality of life is horrendous for a 27 year old woman, I do not view my overall quality of life as horrible. I think this is because of my wonderful support system, and my semi dark sense of humor. I am grateful for my ability to genuinely laugh at the fact my doctor “broke up” with me by saying it isn’t me, it’s her. If I were this sick without a good support system, it would be much more difficult to endure. I have noticed stress plays a huge role in how sick I am, particularly interpersonal type stressors. I admire those of you who stay strong despite a lack of support and/or despite mental health conditions.
My old symptoms continue. Sometimes I am able to make them less intrusive by meticulously planning my days. For example, I manage my symptoms by not eating. If I eat more than a minuscule amount then don’t rest, I faint and throw up pretty easily. This is because when I force my autonomic nervous system to choose between digestion or consciousness, it is going to choose consciousness (this is simplified, but you get the idea). Therefore, I try and look at my calories on a weekly basis versus daily. If I want to spend time with my family or have an appointment, I don’t eat much, if anything beforehand. I eat as much as I can the day before and after. If I eat whenever I want, then go on my merry way in the world, I will become more symptomatic. The symptoms are my body’s way of asking me, “What do you think you’re doing!? Do you not see how hard I am working??” It sort of reminds me of a parent, who just mopped the floor, scolding muddy shoed children as they run through the kitchen.
Other old symptoms giving me a hard time right now include sore lymph nodes in my armpits and throat, fatigue, gastroparesis…. however, I am not going to spend long on old symptoms. They’re there. If they disappear, you’ll definitely hear about it!
New Nerve Pain
One fun new symptom I am experiencing is a different type of nerve pain. Let’s talk about nerves and neuropathy for a minute before I continue. Neuropathy is nerve damage. It can be caused be a variety of diseases, some extremely common, some rare. In my case, the cause is an autoimmune disease called Sjogren’s Syndrome. You have different types of nerves, both large (also known as A & B fibers) and small (known as C fibers). Large nerve fiber types include motor and sensory, while small include autonomic and sensory. If you would like to learn more about the various types of nerves and/or symptoms of damage to them, here is a Wikipedia page, an article, and a technical slideshow. Now that you know what the various terms mean, you know when you put together the nerve fiber type + neuropathy (example: autonomic neuropathy), what is being said is: the nerve fiber type (autonomic) is damaged (neuropathy). Sometimes names are used interchangeably, which can be confusing. For example, some may refer to autonomic neuropathy as small fiber neuropathy. Technically, this is accurate since autonomic nerve fibers are a type of small nerve fiber, however autonomic neuropathy is more accurate and the preferred term.
Okay, back to my symptoms. I have had small fiber neuropathy for several years. Small fiber neuropathy can affect the sensory nerves, autonomic nerves, or both. I have autonomic neuropathy. It is the root cause of my autonomic dysfunction/POTS, but does not cause pain (at least not directly – I can’t say my stomach not digesting food, or my eyes failing to adjust to light, feels good). I also have small fiber sensory neuropathy, which in my case, results in a burning sensation. Do you know that feeling when you touch something hot, then let go before it actually burns you enough to leave a blister? It feels like that, and runs up my arms and legs. Some people experience small fiber neuropathy as pin prick sensations, numbness, or tingling. Something fortunate in my case, that isn’t true for all sufferers, is it is not constant. If you would like to learn more details about small fiber neuropathy and options for testing for it, here is a technical slideshow.
Now that you know all about my small fiber neuropathy, which is old news, I feel I can tell you about my new nerve pain, which seems to be large fiber related. I woke up one day with sharp pain along all 4 of my limbs, hip to toes, shoulders to finger tips. It felt nothing like the small fiber neuropathy burning sensation I am used to. It not only hurt when it first began, it also caused my pinkies and toes to involuntarily curl.
The reason I think the pain involves large fiber nerves is because the pain in my arms is my ulnar nerve, without a doubt. How can I be so sure? Well, your ulnar nerve is what causes pain when you hit your funny bone, which as I am sure you know, is a distinct pain, which follows a distinct path. One day while the pain was occurring, I hit my funny bone, and it didn’t even hurt (because my ulnar nerve already felt that way), rather I knew I had hit it because of the numb/tingly feeling.
Obviously, I wanted to know what in the world was going on! What I was told and have accepted for now, is it is either large nerve fiber issues, or small fiber neuropathy somehow aggravating the large nerve fibers. I am not clear on that, and my impression is my medical team is not either. The pain occurs daily, but is no longer 24/7, and there is not any curling. If it gets bad again, we will do large fiber nerve testing, which is what electromyograms (EMG) and nerve conduction velocity (NCV) studies look at.
Post-Meningitis Issues: Headaches and Blurred Vision
Ever since I experienced aseptic meningitis as a side effect of IVIG in January 2015, I have had two issues which I did not have before – blurry distance vision and a new type of headaches.
I have had about 15 days in the past 18 months where I did not have a headache. They leave me even more sound and light sensitive than I was before, and the pain encompasses my entire head, with there being a sense of pressure in the parietal and temporal areas. Nothing seems to help them. I have tried stress management techniques, dietary changes, caffeine, aspirin, Tylenol, Tramadol, Celebrex (NSAID), Vitamin B2, and Gabapentin. I have not tried Topamax or Butterbur. This is because prior to doing so, I will need to change the hormones I take to control my menstrual cycle, and…. Well, I am not doing that quite yet. A MR myelgram, which came back all clear, was performed 6 months ago to check for any signs of a spontaneous cerebral spinal fluid leak (CSF leak = when spinal cord pops a leak). An MRI was performed a few days ago to be sure there is nothing going on in my noggin we could find to blame. There is not. This news is both encouraging and frustrating all at the same time. Perhaps I simply have post-meningitis headaches, a known issue, for which researchers (of course!!) are not 100% clear on the source of or how to help.
The day before meningitis, I had no blurry vision whatsoever. From that day forward, I did. It seems pretty clearly connected, however we are not sure how. I waited over a year and a half to get my eyes checked. The blurred vision was attributed to the headaches, which seemed to mean there may not be much point to an eye exam. Headache visual issues are not typically correctable with lenses. Therefore, it seemed as though the issue to focus on was the headaches, which if resolved, would also resolve the visual issues. Also, if I am being honest, I had so many other medical appointments, time on the phone with insurance, time spent managing symptoms, time spent researching, I did not feel like explaining the entire story to a new provider and getting them checked. When there is extra time, I want to do something fun! I also felt comfortable with not seeing an eye doctor because 6 months prior to meningitis, I had an extremely thorough workup from a neuro-opthalmologist (plus 2 of her residents), and my vision was absolutely pristine. (The sarcastic voice in my head says, “Yeah, and you don’t think having brain inflammation could make the exam you had 6 months prior irrelevant?) Anyways, I think I have given enough excuses. I certainly wouldn’t promote following my lead; I should have gotten my eyes checked.
What I found out when I went: I seem to be an odd duck and developed myopia (near nearsightedness) at age 26. At first, the optometrist (I know; optometrists are not medical doctors) thought the myopia may be from reading too much. Too much near work can trigger spasms of accommodation. We tried correcting this by me using reading glasses in order to relax the muscles, so perhaps when I looked in the distance, the muscles would relax and accommodate, however, I guess it wasn’t meant to be. Based on my research, there is a possibility Mestinon is the culprit since medication which increases parasympathetic activity can cause spasms of accommodation (seizure meds are a common culprit too). The good news is, it is correctable with lenses! I dislike these frames immensely. I had picked them out for reading glasses, but oh well. When I have the energy, I may inquire if my eyes are too dry for contacts.
My neurologist said it is typically the case that if a visual disturbance is correctable with glasses, it is less likely to be neurological in origin, however this isn’t always the case. Since the myopia is getting worse as time goes on, my neurologist suggested seeing an ophthalmologist for a second opinion. Here is yet another spot where I would not promote following my lead with my eye care. I purposefully chose an optometrist because I didn’t want another new doctor. I figured an optometrist would make me explain less of my medical history than an ophthalmologist, and I was feeling burnt out on explaining my medical history. All I wanted to know was if glasses would allow me to be able to see signs on the side of the road, and I figured if anything was obviously wrong, he would notice. Who knows why I knowingly went the route of a less informed provider? All I know is I am enjoying the world in high definition with my new glasses.
Another New Doctor
In addition to finding an ophthalmologist (which I am procrastinating on), I have to see another new doctor – an endocrinologist. Here is how I react to the thought of adding a new doctor:
In this case, I know an endocrinologist is required. When adding a new doctor to the team is an inevitabliy, I remind myself of the fact that nearly all of my current doctors were once a new doctor who I begged another doctor to not force me to go see.
Why do I need an endocrinologist? I am highly positive for an autoantibody seen in autoimmune adrenalitis. The autoantibody is called 21-hydroxylase. Based on precursory testing (morning ACTH and cortisol), it appears I do not have Addison’s Disease at this time, however I do need evaluated and followed by an endocrinologist. It is highly probable the positive is due to the ongoing systemic autoimmune issues (Sjogren’s Syndrome, and perhaps an autoimmune disease without a name yet) I have going on. When you have a systemic autoimmune disease, pretty much any organ in your entire body is fair game. Your body will make antibodies against itself, much like it makes antibodies against bacteria or viruses when you have an infection…. except instead of attacking pathogens, your body attacks itself. Poor confused body!
I decided (with the encouragement of my husband and mom – thank you) to retry physical therapy, with the goal being to reduce back pain. I hoped a reduction in back pain would lead to a reduction in headaches. While my pain isn’t much better, I am beginning to see an increase in muscle tone! This is encouraging because all of the exercises I have been given are done lying flat, and do not take too much energy. I am not going to write too much on this right now, because I am going to write a post specifically about physical therapy in the future.
It hasn’t been all doom and gloom. I continue to have supportive family and friends, my husband and I recently celebrated our one year wedding anniversary, my stepdaughter (6) continues to be the sweetest, sassiest little girl I know, and I continue to be capable of researching my conditions. I plan to provide proof of said positives in my life in an upcoming post. I continue to believe things will, at a minimum, get more stable.
If you made it through this entire thing, I am extremely impressed. This was a long post. You must either be my family and love me, or suffer from similar issues as I do! If there is any other explanation, please let me know what it is. 😀 I know I should break posts like this up into several smaller posts, however…. I wanted to update everyone in one go!
If you have e-mailed or messaged me and I have not responded, I apologize. I hope to respond to everyone soon.