She persisted

This was the mural on the ceiling of a clinic I went to a couple weeks ago. Check out the gnarly scene with someone getting their leg amputated! // In other news, please forgive any typos or incoherence - writing has become more physically and mentally difficult for me, so I'm trying to just let myself off the hook rather than letting perfectionism stop me!

Medical ceiling mural

A week and a half ago, when I put up my first blog post in ages, talking about getting back out there in the (virtual) world, I had no idea that I was about to have a potentially life altering breakthrough with my medical care situation. I'd essentially stopped talking about the frustrations of trying to get better healthcare publicly because it just felt so utterly futile. The lack of progress had consistently resulted in people - some well meaning, some not - making their own judgments (accusations?) about my illness and how I should be handling it. I get a lot of positive things out of putting my writing in the public eye, and being honest and vulnerable, but I also open myself up to the negative side of telling my story to both friends and strangers.

Every type of person from doctors, to family members and friends (you sure learn who your real friends are when you're sick for years), to acquaintances, strangers, and your garden variety anonymous creeps, have all felt perfectly comfortable saying things to me like:

  • "If the next test doesn't provide answers, you should go talk to a psychiatrist." (Because osteoporosis is caused by mental illness? I think not.)
  • "There's nothing to find, they're not going to give you anymore tests." (As if I wouldn't prefer doing anything rather than more medical tests, they're not exactly fun!)
  • "Why are you here, you've already seen a lot of doctors?" (Uhm, I'm getting sicker every month and don't even know what from!)
  • "Your illness doesn't need treatment, your symptoms are all somatic." (This particular one I've heard far too many times at this point.)
  • "You don't want to [come out / have a life / get off the couch / come visit / socialize]." (As if being sick is a choice.)
  • "Just get up and stop laying around." (That's what anyone who feels like they concurrently have the flu, jet lag, food poisoning, and just ran an ultramarathon wants to hear - thanks, very helpful.)
  • Worst of all, *crickets*. The sound of the absence of everyone who just faded away. 

It's a common way to react when someone has known you as a (relatively) functional, albeit struggling more than they let on, person and then you stop being functional and there's no explanation. Sadly a lot of people put the blame on everything but the possibility that you're actually, really, terribly sick.

That has truly been the story of my life - save for a few dear, sweet, loyal people who have not only stuck by me, but believed me. I've been sick since childhood, and had very minimal medical investigations early on - really just a couple of consults and a barium swallow x-ray. Far from thorough. When nothing was immediately found, I was "diagnosed" with IBS and was basically told to just get on with life. I was pressured to excel in comparison to my peers, despite having much fewer physical resources. My entire life, I have been the runt of the litter. Weaker, more tired, more sick...but never really accommodated in any of those areas. My illness was treated as a nuisance, but not serious. Even though I had other symptoms I can look back as an adult and see as abnormal. I slept a lot more and tired a lot easier than other kids. I was always pale and borderline anemic. I had bone pain from an early age, which only abated in my early 30's when I began high dose Vitamin D supplementation - a sign that my bone density was compromised very early on.

Becoming a chronically ill adult

I started trying to get more medical help after moving out and going to university at 17, but my "diagnosis" of IBS from childhood followed me. I was having trouble physically keeping up in school, even with a reduced courseload. Managing studies and taking care of my basic needs was always a challenge. But I'm resourceful, and well organized, so I did manage - it was stressful, but I stayed afloat. While I continued to try and get more help, as every year ticked by and I felt a little bit worse. More diagnoses of exclusion (i.e. what they call it when they can't find any cause) like Fibromyalgia and Chronic Fatigue Syndrome were thrown around, and eventually put into my medical charts, and I continued to do my best to cope and keep excelling like I was supposed to. I wasn't aware there was an alternative, so it's what I did...to my own slow detriment.

This continued through 8 years of university, until I left with a Master's degree and so much built up exhaustion that I wasn't exactly upset it took me about 10 months (during which I had all my wisdom teeth out, and worked some part time jobs) before I found a permanent job. 9am to 5pm, 4 days a week. I guess I shouldn't have been too surprised that my body was not capable of maintaining even a 4 day a week standard workday situation. After a year and a half, and 8 months of chronic bronchitis from hell (looking back it may have been what's known as "walking pneunomnia") which I never truly recovered from, I finally had to call it and leave that job. There were other factors at play, but one of the biggest was there was no option to work from home, and I was never going to make up all the sick time I'd taken, I couldn't hack it and had to cut my losses.

After 6 weeks off, I started another job that was roughly 30 hrs/week (over five days, so shorter days), this time where I was supposed to work from home so I could take care of my needs better while still earning a living. I was extremely relieved. Except after a couple months, the company moved into an office space, and from then on I had to push myself to show up at least a couple times a week in human form. It was more manageable working at least part time from home, and having more flexibility, and I did love my coworkers, but I was still constantly exhausted, and constantly stressed from trying to fulfill the expectations of a regular adult. My health slowly degraded more and more over the next few years, with the extra smackdown of a bad virus here or there, which I would never completely bounce back from... I asked to take a large chunk of time off to try and sort things out, but that request didn't really fly. By the time I finally left, I was struggling to do 25 hours a week, and was what I still thought was "not hacking it" or "really burnt out", or maybe just "not sure what I wanted to do with my life". I was miserable, and felt like utter crap.

That entire time, I'd been unable to find a GP and had been cobbling together medical care via walk-in clinics, as the couple of specialists I'd seen (Rheumatology and Gastroenterology) had been pretty dismissive and unhelpful. I was brushed off with recommendations of probiotics, and comments like, "You're a fine specimen, go live your life." I'd been going to counseling to try and figure out how to handle everything better - but my physical abilities were never really part of the conversation - ableism, and the assumption that everyone should be able to function the same, is everywhere. Neither, I or any of the people around me really understood that, and because we didn't know better, we didn't do better.

Reality hit quickly after leaving that job and intending to take a short time off before starting to freelance and work on my own terms. I crashed hard - I really wasn't well, and no amount of resting got me better. That was spring 2012 - over 5 years ago - and from there, things only got worse and worse. I was never able to go back to work.

Officially disabled

During the years that followed, the slow decline of my health that had gone on over the previous 25 years or so picked up its pace. Spring 2013 (after an extremely stressful Christmas holiday where I was already pretty unwell), I started having strange new symptoms... I knew something wasn't right and I started trying harder to get help to figure out what was going on. My existing "diagnoses" (I use quotes, because they were all diagnoses of exclusion, without an adequate process of exclusion) made it almost impossible to get any doctors to take me seriously, even though I'd been having new symptoms and feeling a lot sicker.

I've now spent the last 4+ years, since I started developing all these new symptoms, trying desperately to get help. Advocating tirelessly for myself, seeking out help whatever ways I can, trying to find the right type of doctor who would see that it's not "just" a functional disorder. And then spending months waiting for referrals only to have a specialist mock me or yell at me, or just be flat out uninterested in even hearing what was going on. Every office I walked into, they already had my number, and my number spelled S-O-M-A-T-I-C. "Functional disorders". "Syndromes". "All in my head" or at least some equivalent to "not that serious she's obviously [a hypochondriac / exaggerating / a malingerer / one of those women]". 

There was no help to be found. In fact, I was discouraged time and time again from continuing my quest to get a proper diagnosis. I was told to give up. But I wouldn't listen, and instead I stubbornly forged ahead. I tried and tried, but there are doctor shortages here in BC, and they've made already difficult to get referrals and second opinions (which are all guarded by GPs/PCPs) even harder if not impossible to get. I've been blocked at critical junctions by egotistical and dismissive doctors, unwilling to consider for a moment that my condition has changed - that something was progressing or something new was going on.

Thanks to being in a position of financial privilege, which allowed me to work with a privately paid functional medicine doctor - who despite not knowing what was wrong, was open minded and took my illness seriously - I was finally able to slowly gather and leverage some hard evidence. He did some basic investigations into my hand pain, which consequently led to being diagnosed with osteoporosis in 2014. And he supported me in going back to my GI to push for a workup for a pancreatic condition, which while inconclusive led to another piece of evidence in the form of an unusual blood test marker. I finally had concrete evidence that I had more than a "functional" or somatic illness. But even with that evidence, and the help of this doctor who's been a true ally, I recently found myself at my first 3 year bone density follow up, sicker than ever, and for all intents and purposes not much closer to getting a proper diagnosis. I didn't have much left in me - ideas, motivation, energy... But as always I told myself nobody else is going to advocate for me the way that I will advocate for myself, so giving up is not an option. I racked my brain for any last options I hadn't yet exhausted, aside from the big step of calling up the Mayo Clinic or driving down to Seattle to get some better specialist consults, and decided on a few last resorts to try.

It is through the grace of my own stubborn insistence, my own incessant persistence, my loyalty to my deep down knowledge that something is not right, my probably thousands of hours of research, my ruthless self-advocacy, and my willingness to continue to expose myself to more and more abuse and trauma at the hands of the medical system (something which stops too many people from continuing to seek care), that well beyond a point where most people would have long given up, I've finally had a breakthrough.

If the doors don't open, break them down?

In the past two weeks, I've gone from being very stuck and nearly out of options, to being thrown a lifeline. Two actually. I suddenly have two fantastic new doctors on my team. A new internist and a new rheumatologist.

I was hooked up with the internist thanks to going a bit rogue again, and going out on a limb and essentially over the heads of my existing specialists. At my 3 year follow up, I asked my osteoporosis doctor (an endocrinologist who was always very kind and helpful, and I'd pegged as probably my smartest and kindest specialist) if he had any ideas of how to address my overall health issues. The follow up meant three years had passed since my osteoporosis diagnosis, and despite every attempt to get to the bottom of why I had such profound bone loss at my age - something I wanted for my own peace of mind before considering going on osteoporosis drugs - my gastro + rheum docs hadn't made any progress. Not only had they not made progress, but they'd barely tried and weren't actively trying anymore - I was just on routine 6 month rheum follow ups despite my worsening condition, and my gastro doc didn't even want me to come back, and wrote in his report letter that I was "feeling well" (WTF???) I asked if maybe he had any other ideas or knew a good internist? Turned out he did, and after a moment of consideration, he was actually excited at the prospect of potentially helping get my case solved. He was like, "You know what, let's do this!" and with that, a new door cracked open. 

It was like stepping into a parallel universe, perhaps one where I no longer have to fight to be believed. You can't imagine what a change that is after a lifetime of dismissal. Both these specialists are the sort I'd only heard about but never encountered. Like Dr. House, but nice. After initially meeting the new internist (who I had already tried to keep my expectations low for, but who turned out to be fanastic), I thought the rheumatology consult was probably a waste of time (that's partly my healthcare burnout speaking, because holy hell am I burnt out on all of this) and didn't really expect much to come of it. Well, joke was on me because this rheumatologist was also amazing. 

And now he's my doctor too! My (now old) rheumatologist agreed to let me do a consult with him, despite her skepticism. He specialises in spondyloarthropathy - one of the conditions that was on my short list of possibilities of what my underlying illness could be, and it was supposed to be a one-off consult to see if he thought it was possible I had an atypical presentation of one of these types of arthritis. But by the end of the appointment, it was clear he had a lot more ideas than that, and I again went out on a limb and asked him to take over my care. He clearly had a ton more experience and was also incredibly kind. I've never felt less threatened by a doctor. I felt like I could maybe finally put my knives down. One of his colleagues at the same clinic (who I had a consult with a couple years back) works with a particular condition that I have this rare marker for, which could also be really helpful and he just seemed to be thinking in a much more "big picture" way about what could be wrong.

And then angels sang

I still can hardly believe it, but I now have two excellent, smart, kind specialists on my case! And both of them were on the same page - the page I've been on for ages but couldn't seem to make any headway with:

  • I'm actually really sick. (No shit!)
  • It's a systemic illness that is causing my myriad of weird symptoms - there's no way I just coincidentally have like 30 different chronic ailments/symptoms.
  • It's causing fairly severe malabsorption - why my digestive system is a wreck and I have the profound bone density loss.
  • My body is slowly wasting away - scary but true. I weight 87 lbs right now, a shocking 25 lbs less than I did at age 18.
  • I really do need medical care, and sooner than later.
  • I am worthy of help and effort and kindness.

It's all I've hoped for, for so long. To find doctors who could and wanted to help me. And they both check both those boxes. 

The internist works at a hospital and has the ability to order any and all wacky tests. And the rheumatologist is obviously very experienced and smart. Both of them seem very much willing and capable of helping figure out what the hell is wrong with me - if it is something figureoutable. There's a hefty dose of realism here, that it could be something hard to diagnose or that may not be evident until it progresses more. I sure hope not the latter as things are going to get gnarly if I get much sicker - and even if I get properly diagnosed there's no guarantee it'll be something treatable. But if it is treatable, they'll be capable of treating me.

After spending my entire (rememberable) life being told I was untreatable, and to just suck it up and give up on ever improving, then advocating for myself well past the point I thought was possible and then some, having two of the absolute best doctors I've ever encountered telling me that it's likely I have a potentially severe but treatable illness... It's incredibly validating.

This whole time, just like I knew, I was fucking right. And it's a reason to actually have some hope that maybe this downhill slide will actually stop. And maybe, just maybe, I will even get better - even if I lose the entirety of my 30's to this, I could have a better quality of life again. It's an emotional rollercoaster, and I'm trying to ride it with as much perspective and grace as possible. And I should say, so is Bruno, who has been with me every step of the way these last almost 7 years - he's my rock, and I won't lie, after being through the ringer with me, it's pretty fun to daydream about what we could do if I even get somewhat better. He's really only known me as a fairly sick person.

Oh, and get this: these doctors are actually going to talk to each other and with my other doctors. I'm telling you, parallel universe! Then they're going to confer on how to proceed with future tests, and narrowing down what could be going on. They gave me a short-list of conditions that they were considering, and there are some doozies. But I'm going to sit on that for now, since there's not much point in throwing around diagnoses unless you all want to start a betting pool. 

Another chapter, another well of patience

This isn't going to happen overnight. The tests will have waitlists, and the medical system moves like molasses. But at least it's finally happening. And just in the nick of time. While I haven't been talking as much about my specific illnesses and symptoms a lot, things aren't good here, and my biggest fear was that I might get so sick I can't advocate for myself anymore, before even finding doctors who were capable enough of helping.

I breathed an epic sigh of relief, knowing that now if things start going downhill really fast, I have some excellent people on my case who know what's going on and can step in to help. Now that I have smart, competent, helpful doctors on the bigger/overall case of what is wrong, I can finally stop - stop fighting so hard to be heard, stop spending my days and nights doing medical research, stop hunting for help and exposing myself to really cruel human beings who don't deserve to be in such positions of power...

I've never felt this calm about my medical care. It's a huge weight off my shoulders. Now I can just be a sick person and let the doctors do their jobs, while I focus on keeping myself as physically stable, and mentally strong as possible while I go through the coming months. 

There's finally, maybe, a tiny little light starting to shine at the end of this fucking brutally long tunnel, and not a moment too soon. 

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