The more things change...

Note: I wrote this up a couple weeks ago, and was going to post it at the end of last week, but then some things happened and I got side tracked, and well - I'm going to post it after the fact and backdate it because why not.


...the more they feel like Groundhog Day. I thought I should do an update, as apparently some people do still read my blog for my health updates??? Keeping a personal blog in this day and age is a minefield, and half the time I think I should just take it offline, but I guess that day is not today.

It's already been nine months since I found the two much more promising specialists who I thought might be able to finally figure out what's wrong with me. If I was a healthy person, I could have gestated a new human in that time. Alas, nope. The subsequent appointment in September with the amazing internist was VERY deflating. He'd talked to some of the other doctors I'd seen, and decided not to pursue any of the investigations or possible empirical treatment (i.e. trying a treatment without a diagnosis to help manage symptoms, or see if it does anything, as that could help lead to a diagnosis) options he discussed in my intake. Out of all the doctors I've seen, he was the one I most felt might actually have the knowledge, skills, and resources to get to the bottom of this, so it was more than a little discouraging, but onwards I went.

I was handed back off to the senior rheumatologist who had taken over my case, and I just spent the last six months going through a more extensive evaluation with him. He's more thoroughly ruled out inflammatory arthritis, and found that while it's still the closest fit symptom wise, at this point I don't meet the official diagnostic criteria for Sjogren's Syndrome. Cue: sad trombone, especially because this came after going through a minor salivary gland biopsy, which was difficult to recover from and has left me with some likely permanent nerve damage in my lip (something I should write about another day).

Also, after 4 years, I still don't have a cause diagnosed for my osteoporosis much to my and my endocrinologist's dismay. After 3 years of essentially living on chicken and rice, I still don't know for certain why I can no longer process fats or tolerate much food (or why now my digestive system motility is starting to fail). I still haven't had the nephrology workup my endocrinologist first referred me to over a year ago because the first referral was never responded to, and I had to ask him to put a second one in to a different doctor a year later. I still haven't had a pulmonology workup a year and a half after I started having breathing problems, because similarly my referral was lost - so frustrating after it took me 6 months of advocating to get it in the first place. I've been working on getting all of this sorted recently and some of it is now in place.

Over the winter, I've developed a myriad of more distressing health issues. More difficulty breathing (with abnormal pulmonary function tests to match). More problems with my GI system (including a brand new set of problems different from the ones I've been dealing with). Difficulty swallowing food. Horrible uncontrollable nighttime reflux, that may or may not be the cause of the respiratory issues. Increasing fatigue, and also now muscle weakness in my limbs whenever I exert myself for too long. And the cherry on top, progressively worsening vestibular issues (dizziness + vertigo, tinnitus, hearing issues, and intermittent loss of sensation in my right ear), which take my existing motion sickness to epic levels, making it even harder to go places than it already was.

I finally saw a proper dizziness specialist for after struggling with this for a decade, and wish I had found her years ago as she said it'll be more difficult to manage now that this has gotten so bad. Alas, the ENT's I'd seen previously told me it was "nothing". I'll try not to spend this whole post ranting about how I've been repeatedly told various symptoms are "nothing", only to have them prove to be VERY SOMETHING years later. (Looking at you, childhood bone pain that turned out to be osteoporosis.)

The vestibular/dizziness specialist, an "otoneurologist" (i.e. nerves/neurology of the ear), was actually one of the most interesting and empathetic specialists I've seen - of course, since I probably never have to go back to her. She made some really interesting comments about my overarching health issues and the difficulty in diagnosing slowly progressing connective tissue diseases and more obscure autoimmune diseases. Her words were both comforting and also a bit exasperating, as she was quite realistic about how long it could take for the disease to be diagnosed, and also to fully develop. Let's just say I didn't want to hear how much more of this I might have to endure, before even getting a diagnosis - what even is patience anymore? The fact that she validated how frustrating and never-ending it can be was big for me. She couldn't do much for my vestibular issues, which she said are no doubt being caused by the overall illness, but did give me some management options, which I'm glad to have. Even if there was no cure and this will probably get worse over time, her more general advice and honesty meant a lot to me and I wish other doctors would be more forthcoming about the reality of these sorts of illnesses!

In any case, the more senior rheumatologist has now concluded his testing (which focused on screening for inflammatory arthritis, Sjogren's, and IgG4 Related Disease). He felt he couldn't offer me any further help since I don't meet the very strict official diagnostic criteria for anything he screened me for, so I've been sent back out into the un(der)diagnosis abyss. This is very common for people with developing connective tissue diseases (CTDs), as it is a bit of a "watch and wait" game, no matter how debilitated you are. Especially with Sjogren's which they don't usually treat unless you're having what's considered severe complications (like it's threatening your kidneys or lungs). But I have several issues that go well beyond the scope of early CTD, like the swallowing and respiratory issues, and my bone density and GI issues, so I don't think this is just a simple, watch and wait case - no rest for the weary here!

After a brief pity party, I've already put my next backup plans into place, and have an appointment to go back to good Dr. Internist later this spring. I was incredibly relieved that he accepted my re-referral, as he has very limited hours for the outpatient clinic, and it means he has at least some willingness to give my case another look. I also have an appointment next week with a very interesting sounding dysautonomia + neuromuscular disease specialist, who's worked with Sjogren's patients and focuses in some areas that could apply to me. She may have some insights that other doctors weren't specialized enough to really look into. I'm trying not to get my hopes too high, as usual it's unlikely to have a big breakthrough, but I'm keen to see what she has to contribute.

As I hit the limits of each doctor's expertise, they typically leave off with some form of, "You're clearly sick - I just don't know what with. Mayo Clinic might not be a bad idea at this point." While it's better than, "It's all in your head", it's still frustrating as my condition keeps progressing so quickly and I'm still nowhere near knowing if there are even treatment options, or what the big picture prognosis may be. We'll see what the next couple months hold - it's easy to say, "Ok, go to Mayo", but it's not so easy to actually carry out, so I'm waiting until I'm through this round of appointments to make any decisions. The planning, the cost, and then the actual physical ordeal of doing something like that are overwhelming and feel impossible right now. I want and need to explore every last option locally, before taking steps towards going to the US, but as each fallback plan falls through, it seems to be coming closer and closer.

I can't believe how long I've been at this. The years of my life have been ticking by way too quickly as I lose more function and independence. While other people had kids and traveled and got promotions at work, I got mobility aids, more doctors, and more prescriptions, and managed fewer functional minutes each day. It's really hard when I step back and see how far downhill I've gone... I think a lot of people who knew me when I was more well still don't REALLY believe that I'm this sick. I don't know why - I guess because superficially I "look fine" (if you forget the 20 lb weight loss on my tiny frame) or the fact that I have to use a mobility aid to leave the house now, something that even with it I can no longer do on my own. I guess it's really hard for someone to understand when you haven't been there... I wish more people wanted to at least try to understand.

I know sickness scares people, so it's more comfortable to minimize it, or decide that a sick person just isn't trying hard enough - as if doing the right things will allow those who are well to avoid this fate themselves. I understand this, and yet it sucks to continue to have to deal with the disbelief and invalidation that people with diseases like the big C never have to face. I mean, there's no run for a cure for undiagnosed illness. Nobody rallies and brings you casseroles. I'm kind of at peace with it, or at least familiar with being in diagnosis purgatory now, but it still sucks how much judgment and misunderstanding it results in. And how much less support there is - in everything from social circles, to insurance, to medical care. It's something I'm trying to be okay with - knowing people doubt me or blame me somehow, doctors included - but it's a challenge to be okay with something like that, when I've done nothing to deserve that kind of skepticism.

I got unlucky developing a hard to diagnose disease. And it didn't help not having anyone advocate for my healthcare when I was a sick kid. It's quite possible this is a progression of the illness I've had my entire life rather than a secondary illness that started in my early 30's, or it could be two separate conditions, but not having been screened for genetic diseases when I first got sick makes things even harder now (it's much more difficult to access that kind of care as an adult). So many hurdles to jump. So many things to rule in and out. And I'm so. Effing. Tired. The good doctors I've found have been very forthcoming about how challenging it is to diagnose someone with this kind of complex disease, especially in what they consider early-ish stages. It doesn't freaking feel early to me, but I guess it's relative...

I'm basically living in 3 month blocks right now, since that seems to be roughly how specialist appointments and tests get booked out. So, now that things are scheduled through the spring, I have to try and sit tight, and be prepared for each appointment so it can be as useful as possible. It's a real hurry up and wait game - and it's frankly pretty boring. My physical constraints have led to me having to give up the bulk of my remaining hobbies, and basically stop working on Textillia for the time being, hopefully temporarily. It took me several days to write this since I can only type in small chunks if I want to avoid my hands becoming pain balls on the ends of my arms. I'm reading books when I have the mental fortitude, and watching shows when I don't, but it gets really old after a while and I just want to DO SOMETHING.

Anyway... better wrap this up, for my hands sake and because I'm basically rambling and ranting now. We'll see how the next months go. If you want to send a little good juju or prayer to the universe for me, that would be much appreciated. Till then...


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