What can I tell you - I know by now it seems like this should all be figured out, but life isn't a movie, and I've only gotten sicker and ridden round and round on the healthcare rollercoaster... I've procrastinated posting an update because of that and also because my hand/finger joint pain has been severely restricting my ability to type. It hurts like crazy all the time and only gets worse the more I type, which has been really difficult for me to deal with since I still have throat/vocal problems, meaning both means of communicating are restricted. I really like talking and writing, so it sucks!
I've tried to keep distracted and focused on the future by working a little on Textillia (tldr; Bruno and I are trying to build the Ravelry of sewing) when I have a bit of energy and my arthritis isn't too out of control. But really, the last many months have continued to be a blur, and I've mostly been in survival mode, trying to avoid days like this one about a month ago where I got sent to the hospital for heart attack symptoms... The concern that was just a hypothetical last summer - that I'd eventually start having more severe problems if I didn't get proper help soon - has become a reality. I've started having cardiac issues, no doubt thanks to the ongoing malnutrition and stress on my body, plus some combo of inflammation and likely autoimmune disease...
But let me back-track and recap since it's been a long time since I've written a proper update...
About 4 years ago in early 2012, I stopped working and crashed hard - after pushing hard to work part time while dealing with fatigue, chronic pain, and the digestive issues I'd had since childhood, I couldn't do it anymore and became extremely fatigued and burnt out. As it'd been assumed for years to be a combo of IBS, Fibromyalgia, and Chronic Fatigue Syndrome (all diagnoses of "exclusion" despite never having had a lot of "exclusion" work-ups from any doctors specializing in these conditions, aside from a colonoscopy around 2008), I didn't have much luck getting medical care, as I was constantly told "these are chronic illnesses, learn to manage them better". I rested, and waited and waited to bounce back but didn't, and then I had a seriously traumatic event at Christmas 2012 that I think contributed to triggering all these worsening autoimmune-like symptoms. By spring 2013 I'd started having unbearable GI flare-ups - they'd hit with no warning and came with the most unbearable pain I've ever felt. I started losing weight again and was extremely tired all the time, and it became hard to function especially anywhere out of quick range of washrooms I could occupy for at least an hour. I eventually realized that fiber was one of the big triggers, and ate less and less fruits and veggies, and eventually had to stop eating them altogether. I would still have flares, but instead of a few a week, they'd be every couple weeks or so. I started trying to get a referral for a new GI doctor to get a 2nd opinion on my old diagnosis of IBS... and over the coming months was rejected by 7 different doctors because they wouldn't take 2nd opinion patients.
That summer, as my hand pain and fatigue continued to worsen, I got a hand x-ray to look for arthritis which detected low bone density. I then had a DXA scan, which is what's used to assess bone density and screen for osteoporosis, and it confirmed the low density, showing that I had full-blown osteoporosis. This diagnosis was dismissed by the rheumatologist I was seeing at that point for the hand pain and some other chronic pain, and that led to it not getting really taken seriously until I saw an endocrinologist about my fatigue and bone density later on - he assured me that it was indeed serious and real. I was confused so I went to the osteoporosis clinic at the women's hospital and the specialist there agreed I have serious real-deal osteoporosis - very unusual for someone my age. Both endocrinologists felt it was caused by either by my rheumatological and/or gastrointestinal diseases, which needed to be properly assessed, diagnosed, and treated so that my bone density could be improved (if I was lucky, by natural means, otherwise with medication usually reserved for the elderly). I had 3 years to make all this happen before getting re-scanned summer
2016 2017 when, if my density worsens and no doubt it will have, things are going to get serious as far as medicating me for it.
Around this time I also developed what seemed like a chronic and untreatable yeast infection. I took loads of different anti-fungals to no avail, while none of the tests came positive for yeast. It was quite unpleasant, and one of the medications gave me a frightening reaction akin to some kind of transient meningitis... but eventually after many months it just subsided. It's come and gone since then, but mostly been dormant. I mention this because through 2014 I started to develop a mildly dry mouth, nose, and eyes - known as "Sicca" in medical terms, and in hindsight now suspect the yeast infection-like symptoms were actually caused by mucus membrane dryness (yet another issue usually only seen in menopausal women). It would also be a reason my throat/voice problems and reflux continue unabated. Sicca, when not caused by medications or a handful of other things that are not possible explanations for me, is typically the main symptom of a rheumatological condition (a type of arthritis/connective tissue disease) called Sjogren's Syndrome. It's a cousin to Lupus, but most often seen in older/menopausal women, and can cause things like joint pain, organ damage, and neurological symptoms... But because I don't have antibodies for it (which is quite common until the disease is advanced) the rheumatologist was completely dismissive of it being a possibility. And of course, it's worsened by stress - and at the end of 2014 there was a family emergency that really took its toll on me, most notably the Sicca became much worse and has remained that way ever since. My mantra now is NO STRESS since every high stress event has created new issues that have not gone away. Let's just say, you don't really appreciate your snot, tears, and spit until they aren't there. It's gnarly.
I'd been working with a private functional medicine doctor since December 2012, until at the start of 2015 I got accepted to a community health clinic specializing in complex health issues, where for the first time in my adult life I finally had a GP. I stopped seeing the functional doctor save for one or two check-ins over the course of the year, as it was a relief financially to have government funded medical care again. It seemed promising initially, as they processed referrals quickly and had some free services I wouldn't have normally had access to. Unfortunately, the GP I was assigned to, an older woman, was extremely ill-suited to dealing with someone like me - someone with complex undiagnosed health issues. It was obvious from day one that she was really struggling to get up to speed on my case, and was very overwhelmed. It took probably 6 30-minute appointments to get "caught up" and by about the third one I could already tell she was tired of dealing with me. She constantly flapped her hands at me when I was telling her about symptoms or asking about tests, seemingly because she couldn't process the information (either due to speed or complexity). When I'd ask about follow-ups on abnormal tests, or new referrals, she'd say things like "let's not go there" or start talking about how I was stressed. She never had any suggestions on how to manage any of my symptoms, even ones that seemed pretty basic, and when new ones occurred all she would do was document them on my file, never looking for reasons they were happening or trying to figure out what to do about it. And when I had terrible treatment from specialists (like the horrid experience at the pelvic pain clinic), or the rheumatologist laughing in my face and yelling at me, she'd act like there was no way they'd done anything wrong - clearly it was me that was the problem. A really great attitude towards someone who grew up with a similar dynamic and finds this kind of blaming extremely traumatic. Every appointment left me feeling shell-shocked, but I tried to make it work because I didn't have other options (finding a GP in Vancouver is almost impossible).
I did my best to hold it together - figuring out what I could do or take to control symptoms, and pushing for the specialist referrals I felt would help the most. But I knew she was not only neglectful but also had started gaslighting me (telling me that my symptoms weren't as bad as I was making them out to be or that I was being overly emotional, frankly a load of BS since I know I was handling everything pretty damn well all things considered!) Along with the few horrible specialist situations I'd been in over the course of 2013-2014, I was building up some kind of PTSD when it came to doctors dismissing me and treating me like just another crazy female patient. I advocated for myself as best as I could, but things were speedily going downhill and I was starting to feel genuinely terrified about my health and my future. More and more new symptoms were cropping up - low potassium causing all kinds of strange and unpleasant (and dangerous) symptoms. Still no explanation for the osteoporosis. New pelvic issues, still undiagnosed. And the biggest and most pressing issue - a lack of GI care.
I advocated for myself and got a new rheumatologist, a younger woman doctor who's knowledgeable about Sjogren's. I still have no formal diagnosis, but more of a "working diagnosis" that it's likely to be why I'm having the dryness, a bunch of other autonomic nervous system issues, and this terrible debilitating joint pain in my hands. I finally got a second opinion GI workup with the super rude and dismissive GI doctor that it took me 2 years to get a referral to. I was dismissed with "it's just IBS, take some probiotics and eat a low-fodmap diet". (Ridiculous as I'd tried both extensively, and low-fodmap is laughable when you're already living on chicken and rice!) I asked my GP to refer me back to my old GI doctor since I still had worsening issues and no help - 20 lbs underweight, barely able to tolerate any food, no explanation for the osteoporosis, constantly sick and debilitated by fatigue and now low electrolytes, on disability with no hope of being in shape for gainful employment again... And my GP argued with me that she didn't feel I needed the referral! I can't even. She kept saying "they're not going to give you anymore tests". Like WTF is that supposed to mean??? I'd absolutely had it. And of course, I got upset about my GP being absolutely useless and continuing to gaslight me, and no surprise, I spun into a terrible GI flare (this was mid November 2015) which has not stopped since.
Bruno went to Belgium for the holidays to see his family and friends, and my mom and then a friend stayed with me for parts of it, all the while I proceeded to get sicker and sicker... By January, I was really not digesting food at all. But I had hope because I'd landed a private consult with one of the top GI doctors in the city through one of these weird private "clinics" we have in Vancouver. I'd spent a lot of time trying to understand why my GI problems got so much worse around the same time the Sicca/Sjogren's kicked in, and it seemed like they must be related. If it wasn't Celiac, and it wasn't IBD (both of which I'd been screened for in October), then what else was there??? There are other organs involved in digestion, so someone had to know other possibilities. I started to pull together the things I knew: Osteoporosis, digestive problems, Sicca/Sjogren's, low potassium, and the rest of the long list, and there was a ton of flashing arrows pointing back to Sjogren's and autoimmune disease complications affecting organs like the liver, pancreas, and kidneys... I knew I was onto something, but I wasn't sure what. Unfortunately the GI doctor who I had the private consult with was very fixated on what he'd deduced from the files he'd put together on me (which I later realized really misled him in some areas), and because he wasn't terribly interested in listening to me explain the worsening symptoms I'd had the past couple years, he eventually ushered me out the door with the same "probiotics, low-fodmap diet, IBS, etc." spiel I'd had from the previous guy. I really think that this is actually a very competent doctor, but that he had already made his mind up before the appointment, and was not interested in listening and considering other possibilities beyond IBS, IBD, and Celiac. I was so disappointed and disheartened, as I kind of felt that he was my last chance... But after a day of feeling defeated, I brushed myself off and kept going. As I always tell myself, nobody is going to figure this out unless I make it happen.
I made it official, and with no real plan aside from going back to the functional doctor I'd been working with before, I left my GP and the resources at the community health clinic. I'd tried to get switched to another doctor at the clinic, going as far as contacting the clinic manager, and then the health authority's patient care quality rep (who said he could help but then didn't), but they wouldn't let me switch. They wanted me to have a mediated meeting with my GP (who I'd asked them not to inform about my request since I wasn't sure if they'd let me leave her), and I was not in any shape to go through that, never mind that it would be totally useless. So I gave up all the extra services the clinic had and went rogue. They kept saying things about "continuity of care", but what is that worth when the care is not only useless, but damaging? I decided I couldn't be any worse off going to walk-in clinics and the nurse practitioner clinic, and it'd be less stressful, so I just kind of took a leap of faith. The dismissal letter I got a few weeks later from my GP was one of the most hilarious (in a terrible way) and sad things I've seen yet. They didn't keep my complaint/request confidential as I'd asked, and she seemed to have taken it very personally. She explained in great detail how I'd broken the doctor patient relationship and trust, and so she would no longer see me. LOL. REALLY. I could not make this shit up. Good riddance.
During this time I also had an in-home assessment that my GP set up, that was supposed to be an occupational therapy assessment to get me a mobility device so I could try and go out more again (with the crushing fatigue and low blood pressure dizziness, standing or walking for any amount of time has been impossible for a while now, and I've been mostly housebound for over a year). But instead they sent a physiotherapist to assess...me and how I behave? I don't even know, I had no sense of what her job was or what kind of power she had over me and my care. She was extremely disrespectful and degrading to me, ordering me around, cutting me off when I spoke, and generally treating me like a child, and said some HORRIBLE things such as suggesting that Bruno was the cause of my worsened illness. Talk about kicking someone when they're down. Can you believe!!!??? She decided I didn't need help anyway (???) and closed my file shortly after, and I let her because I never want anyone like that in my home again. I'll go the private route finding a mobility aid even though it will take longer and be more difficult and expensive. Every experience I had with the "special" services through the health authority, for people with disabilities and complex health issues, was absolutely horrible and degrading. I feel terrible for the people who rely 100% on their care and don't have the means to seek alternatives.
Doesn't it make you feel tired and like your head might explode??? It sure did for me.
I brushed myself off and went to the nurse practitioner clinic I used to use, and then to my functional doctor (who's really great but has been stumped by me so far!), thinking somehow I'd manage between the two since what other option did I have? But the sad and scary thing is that every time I think I can't get sicker I do... The GI issues kept getting worse and my fatigue kept getting worse... My old awesome nurse practitioner had left, and the one I saw was already giving me the "you're just stressed" brush off. Things weren't looking good.
But then a miracle happened. I heard through the grapevine that there was a new clinic and new doctor not far from our home. She was taking patients, and apparently she was good with complex chronic illness patients! It seemed too good to be true, but I immediately booked an appointment, and it's like the heavens opened up and said to me, "You've been through enough, here is a magical unicorn."
She's really good. Like, REALLY good. And SUPER nice! I hoped for it, but never actually thought I'd have a GP like this! And not only that, but there's an internist that works a couple days a month at the clinic, and he is also REALLY good and freaking smart. He knew everything that I mentioned and more - things that even the specialists didn't seem to know about in their own areas! And being an internist, he looked at my problems as a whole rather than piecemeal, which is what made all the difference.
Both these doctors immediately said: something is wrong. This is not normal. This is weird. Something has been missed. There's no way you mysteriously have like 20 different illnesses including osteoporosis, and in a matter of a few years have become so debilitated you can't function or work anymore. Something is causing all of this, and we need to figure it out. The GI issues, the joint pain, the osteoporosis, all of it - there is a cause and it's not just "stress". IBS doesn't cause these kinds of problems. (Cue: choir of angels singing.) And they even empathized with how frustrated I must be. It meant a lot, but they have no idea...
I could cry. It's been almost a couple months since I found my new GP, but I can still barely believe I have REAL help now. Finally. I don't know how it's taken this long, but better late than never... I hope. I think it's going to take me a while to fully decompress from all the terrible medical shit and trauma, and for me to truly start trusting them. Every appointment I am waiting to be dismissed and gaslighted - but it doesn't happen. They are what doctors SHOULD be. I'm already sleeping better, not laying awake for hours trying to figure out how I can say exactly the right thing so they'll finally help me. Not wondering why they yell and laugh and dismiss. I feel an immense sense of relief.
And while all that was going on, I've been health sleuthing with my functional doctor, and bringing him my research, which he then vets and weeds out the real possibilities from the unlikely tangents. And I found something, a tangent to something he'd been talking about for ages. Enzymes. I'd tried a type of them when I first started working with him, but they gave me weird itchiness, and so we left that and didn't come back to it. But specifically this time pancreatic enzyme insufficiency. Sjogren's and Crohn's are two common causes (I think my new internist is strongly suspecting Crohn's is at the root of everything, which would be hilarious/sad after all this time). Lack of pancreatic enzymes causes exactly the GI symptoms I've been having, and when it runs rampant for years, it causes osteoporosis and malnutrition and weight loss and fatigue... Hmm.
Suddenly I found myself on these bizarre little pills. I assumed like everything else I've tried, they'd do nothing other than cause side effects. But instead, they are like a miracle. Along with some more strict dietary changes, the constant and painful pooping has stopped. I can eat baby food - it's the first fruits and vegetables I've been able to tolerate in over a year. And the other many GI symptoms I've been having have calmed way down - I'm not in constant discomfort and carrying around diapers in my tote bag. (I wish I was joking.) I'm not terrified to leave the house and be more than 10 seconds from a bathroom. I have a teeny tiny bit more energy some days. I haven't gained any weight yet, but this is the first time things have improved in longer than I can remember.
I wish it was all good news, but as much as I'm thrilled the enzymes are helping, it means that this theory - exocrine pancreatic insufficiency (EPI) - is solid. And EPI can be idiopathic or caused by Crohn's or Sjogren's. It would be almost a best case scenario for it to be autoimmune pancreatitis or some weird genetic disease. But the most common cause is chronic pancreatitis (especially when it goes untreated for a long time) and that is really bad, like REALLY FUCKING BAD. It's progressive, it becomes terrible to live with, and it can and does kill a lot of people.
So now I'm in a holding pattern while my new awesome doctors, who showed up not a moment too soon, get to the bottom of things. I have a full abdominal CT scheduled later this month, and have been going through cardiac testing for my progressively worse bouts of tachycardia, laboured breathing, and as of last week angina - that was scary. I'm confident it's all a result of the underlying issues and my super low blood pressure (I think it's resulting in orthostatic intolerance, as I feel the worst of anything when I just have to stand still for more than a few minutes). I really, really, really fucking hope the CT shows something. And that the something is treatable. And that even if there's no curing me, that there are some treatment options and I can at least stop careening downhill in an uncontrolled manner.
It's really hard to be patient right now, when there are so many unknowns and there's so much on the line. I feel like I'm standing at the edge of a cliff and not sure whether someone's going to sneak up behind me and shove me off of it any second. I'm doing the bare minimum in all aspects of life because that's all I can handle right now, and yet I'm also trying to (re-)connect socially a bit, since I've been so isolated for so long. The enzymes are actually controlling my symptoms enough that I can try to come out of hiding a little for the first time in ages. It's all very precarious, but I'm trying to keep being brave and stubborn and optimistic. It's gotten me this far. That and Bruno. All the appointments and tests, all the emotional support, all the picking up my slack and taking care of me... I truly hope that it results in things getting better so we can take a deep breath and enjoy life a bit more, even though I know he won't hold it against me if they don't. Suffice to say, this has been hard for both of us.
I guess I don't ask for help, almost ever, I didn't feel like I deserved anyone's help... but that's been a bit of a mistake. If you want to help or support me (and Bruno), I'm going to think of some ways we could receive it. I should have a long time ago, but I've been in survival mode, and haven't reached out. Thank you to the few people who, I guess you could say, reached in. More to come...