I guess the end of the year is as good a time as any for this big, nay enormous, long overdue health (and life) update - how appropriate that this is (in Drupal-speak) "node 1000", aka. the 1000th post on this site! December just had some surprises in store for us, and I got a bit sidetracked and wanted to get this one done first.
You may not have noticed but over the past couple years, even though I've continued to write posts about health and chronic illness, most of them haven't been particularly specific to what's actually been going on with me. I've written a few posts about my throat issues and adrenal fatigue, but otherwise I've been sticking to more general conversations about the ins and outs of living with chronic illness. I wish I could tell you that this was simply because of my commitment to speaking out about chronic illness, but that would be leaving out a significant portion of the truth. The truth is harder to talk about and more complex.
My desire to keep personal details hush hush has unfortunately really cramped my ability to write about many topics that I have a deep desire to write about. Specific health issues, work plans, personal/family relationship stuff... I've been thinking long and hard about this, and have waffled back and forth several times about it, and have finally decided that it's time I just have out with it all so I can get back to really talking about all the things I want to here.
Now, where to begin... Maybe a recap.
Where the time has gone
It's nearing the three year mark since I stopped working in early 2012, and my already precarious health crashed hard. I thought I'd take a few weeks off to give myself some time to recover. Then a few weeks turned into few months, and... well, now 2015 is here. Time sure flies when you're laid out in a haze of feeling like shit, between dragging your ass to various medical tests and appointments. Of course, I've also done some major life re-evaluation and emotional work in this time, not to mention honing my art and sewing skills, so it was not all struggle. But it was also nowhere near what I thought these past few years were going to look like. The early 30's are supposed to be big career buildling years, and the time when we late-bloomers have kids! But illness doesn't care what is supposed to be happening.
2012 is a blur to me now. I spent most of it pretending things weren't as bad as they were, and as a result, in a haze of anxiety and self-flagellation over my inability to get better. I tried various medical practitioners, did some tests, etc. but nothing really panned out. In December 2012, I discovered an integrative medicine clinic in Vancouver, and started working with a doctor there, who I've now been working with for two full years (more on that in a bit). Christmas 2012 was a low point - I've mentioned this date before, but I've been extremely reluctant to talk about what actually happened publicly. I still am. I was very sick when Bruno and I went to Saskatoon to spend Christmas with my parents, and though we had planned for a very relaxing and festive visit, that was not to be. Long standing family issues resurfaced, and without getting into details, I found myself extremely ill, having what surely qualifies as an emotional breakdown (there may have been some catatonic rocking in a ball), and having my proverbial rock bottom moment. The week ended with Bruno and I hastily packing our belongings and fleeing to a nearby motel before flying back to Vancouver.
That week changed me. I plummeted at a terrifying speed from looking forward to an idyllic week to finding myself overwhelmed by a deep sense of terror and probably some manner of PTSD. It took me about three months to recover physically from that trip. Since then, I've been doing the "real" work of trying to figure out how to regain as much of my health and my life as possible. It's been hard, frustrating, expensive, and scary, but also rewarding, transformative, and full of unexpected bright points. The only hitch is, I'm not really any "better" as far as my physical health goes. Turns out trying to get better doesn't actually equal getting better - sometimes no matter how many doctors you see, and how much emotional healing you do, there is significant illness, physical damage, and dysfunction, and no matter what the self-help gurus say, you cannot just will it away.
I've also had to make a difficult decision in order to make the progress I have on the emotional healing side, and that is around my relationship with my parents. It's hard to say this, but I don't really have one anymore. I've kept this a secret for two years now because... I guess I want to protect them somehow? Or maybe I'm embarassed? I don't want to publicly shame or blame anyone, it's not going to help the situation, but it is what it is: I'm estranged from my parents. As an only child whose life was formerly strongly intertwined with theirs, this has been a huge change and a really hard one, especially at a time when I've been the sickest ever, and needed their support. But when there has been contact, it's led to increased conflict and stress and been really destructive for me, so I haven't been in much contact at all - sometimes for months at a time.
It's not that I don't love them or wish things were different, but I've had to accept that sometimes you have to love people from a distance for your own wellbeing. It's not easy. It's not simple. I feel guilty all the time, and sometimes really sad. But now I can tell myself it's okay to feel guilty or miss them sometimes, and also not to let that feeling suck me back into an unhealthy relationship.
What's going on with my health
Part of the reason I've been keeping details to a minimum is because I wanted to maintain some sense of privacy about what's been going on with my health (particularly due to the aforementioned family strife). But it's been two years, and I think I've finally come to terms with the fact that I just need to do what's right for me and get on with my life, regardless of what happens with my parents. For me, that includes writing and sharing about my experiences - pseudonyms and anonymous blogs just aren't my bag (at least not since circa 2003). There is a lot to catch up on, and I won't even try to cover it all here, but I'll try and hit on the main points and leave them to be elaborated upon later.
People sometimes ask me, "So what have you been doing about your health?" It's a hard question to answer without getting into a lot of detail. Here's some idea though:
- Every 2-4 weeks I have a 30-60 minute appointment with my doctor, an MD who specializes in integrative medicine. I keep him up to date on symptom changes and flare ups, anything interesting I've come across doing research, etc. and we discuss my treatment plan, tests that are needed, and any course corrections that are required.
- I've had a ton of medical testing done. Blood tests, hormone tests, x-rays, stool tests, etc. Some of them publicly funded, some of them privately paid for (read: ridiculously expensive).
- I've done counselling off and on.
- I do a crapton (yes, a metric one) of reading and research online - many chronic conditions are not adequately covered in medical school, so it's not uncommon to go to a doctor and have them not actually know about some or many of my symptoms or conditions. Even great doctors with specialized training don't know it all, because they simply don't have the time to keep up on all the latest information. I on the other hand have a lot of time, so I read and learn as much as I can. My doctor and I frequently send each other academic journal articles, and other information that we discover. You might think, "Oh you're so lucky to have a doctor like that!" Yes and no. It's great, but it's not luck. I put a lot of effort into finding this kind of doctor, and I pay a substantial fee out of pocket to get this kind of care. Yes me, the proponent of publicly funded healthcare! Why? Because the care I was receiving previously was disgustingly inadequate. (I will leave that rant for another day, or you can also order Issue 2 of Chronically Yours for more stories...) I do this research to try and be able to make educated decisions about my health and treatment, and to attempt to get closer to more concrete diagnoses. People with issues like mine often go years, if not decades before getting properly diagnosed, and I'm at 27 years of inadequately diagnosed/treated illness and counting.
- I eat a ridiculously strict and limited diet to help control my symptoms. I can't eat out, and I can't eat food that anyone else (aside from Bruno, who knows all my restrictions) has cooked. It's too difficult, and just not worth the risk. I check in with a dietician a couple times a year for help guiding my dietary planning, though sometimes it seems like there's not much to work with.
- I rest a lot - there have been periods of time where fatigue rendered me pretty well incapacitated, and I was unable to leave the house for weeks on end. Even when I'm doing "well" (ie. stable), I rest a lot and I sleep a lot. Sleep is the glue that holds everything together.
- I exercise as much as I'm able to. Mostly yoga and walking, and in good spells riding my e-bike and rebounding a little. I'll be starting a yoga for chronic pain class in a couple weeks too, so that will be an interesting experiment - in person classes have usually been far too strenuous for me, but I am hopeful about this one.
- I rest my hands and my throat - communicating too much by typing or talking inevitably causes me physical pain. I have to be selective or else I end up not being able to communicate at all if both my throat and hands become too irritated and painful.
- I occasionally go to an RMT for massage therapy, and I'll be starting to do some physiotherapy in the near future as well. These are barely covered by our extended health plan (which we pay out of pocket), so I don't go as much as I should or would like to.
- And then I do all the other things I need to on daily basis to manage my various symptoms, from not eating after 8pm and sleeping on an incline, to taking various supplements and medications, to meditating, to eating on a regular schedule, to minimizing stress.
- I continue build a support system and community of people who, like me, are living in this parallel universe.
- And then around that, I do my best to actually have a "life" outside of being a chronically ill person. I write, I make art, I sew, I garden. I nurture my relationships and try my best to be a good and supportive friend and family member. I take photos, I admire nature, I read books.
Now, if you happen to be someone without any major health issues, and you are still reading at this point - hifive! You might be wondering how I can possibly have a life when I spend so much time on my health, or you might even thinking that I sound obsessed with being chronically ill. I read this great article recently that might help shed some perspective in this area:
One of the hardest things about being chronically ill is that most people find what you’re going through incomprehensible—if they believe you are going through it. In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can’t be. “Pain is always new to the sufferer, but loses its originality for those around him,” the nineteenth-century French writer Alphonse Daudet observes in his account of living with syphilis, “In the Land of Pain.” “Everyone will get used to it except me.”
It may seem from the outside like, "I get it, you're sick, get on with life!" But the thing is, there is no getting "on with" or "used to" feeling like shit and/or being incapacitated most days. It's not something that can be set aside once it's gone on for long enough. Most people I know have always known me to be sickly, and to them it's just part of me, to the point where they don't even really notice it anymore. (And then ironically because they don't notice it, they expect me to be able to do stuff.) But the fact that this has been going on for years in no way relieves me of the daily reality that I have to cope with: pain, discomfort, restrictions. No matter how tired or blasé anyone may get of my being sick, it doesn't actually make me less sick.
I guess I'll get into the nitty gritty. As author Robyn Michele Levy put it, my ever expanding "disease portfolio". All the testing from the past couple years has revealed a lot of new information, though it hasn't exactly led to many major treatment breakthroughs at this point. But as much as I'm nervous about putting this out there for all to see, and as much as it may seem an incomprehensible or even exaggerated list to some, again, this is my reality - what a lifetime of poorly treated chronic illness and emotional damage can end up looking like.
What exactly is wrong with me?
Some of these are long-standing and some are newer or have gotten worse in recent years, some are symptoms and some are conditions or diseases (the diagnoses are with varying degrees of certainty, as doctors often guess around conditions there are no tests for, and sometimes doctors even disagree over the diagnoses). I wish it was just one or two simple diagnoses, but that isn't the case, so bear with me:
- Major digestive dysfunction, currently diagnosed as the umbrella diagnosis of "IBS" (irritable bowel syndrome)
- Slow digestion
- Flares of diarrhea
- Flares of extremely severe pain
- Chronic widespread pain, currently diagnosed as Fibromyalgia
- Chronic fatigue syndrome (ranging from moderate to severe on any given day)
- Food intolerances and allergies
- Shellfish and dairy
- All fruits and vegetables (likely due to intolerance to fiber and FODMAPs)
- Anything acidic (because of my throat sensitivity)
- Asthma and hayfever
- Chronic candida/yeast/fungal infections
- Hand and finger pain (currently diagnosed as Osteoarthritis, though initially suspected to be Rheumatoid Arthritis)
- Throat pain, voice problems, and LPR (laryngopharyngeal reflux)
- Anxiety (thankfully something that's actually improved in the past couple years!)
- Heat intolerance, cold sensitivity (possibly mild Raynaud's syndrome)
- Severe adrenal fatigue
- Chronic low blood pressure, vasovagal syncope, mild circulatory issues
- Histamine intolerance and possibly mast cell dysfunction, especially in digestive and respiratory tract
- Nervous system hypersensitivity (to light, sound, overstimulation), sometimes called "Central Sensitivity Syndrome"
- Various hormonal irregularities
- Various vitamin and mineral deficiencies (likely partly from malabsorption)
- Some mildly abnormal immune system markers
- Severe dry mouth, particularly at night (possibly autoimmune/Sjogrens?)
- Vulvodynia/pelvic pain
- A gene allele that gives the highest predisposition to both celiac disease and a variety of other autoimmune diseases (ie. if I don't have celiac or autoimmune disease yet, I'm far more likely to get it than the average person)
- Latent/low-grade antibodies to Cytomegalovirus and Epstein-Barr Virus (possible explanations for the chronic fatigue)
- Mild scoliosis and a wacky pseudoarthrosed vertebrae/sacroiliac pseudo-joint thingy in my hip that explains why my hip is constantly stiff and painful
- And if that all wasn't enough, a couple months ago I was diagnosed with full blown Osteoporosis (I'll have to write a separate post about that)
There are also some things that I'm still in the process of being tested and evaluated on:
- SIBO (small intestinal bacterial overgrowth) - I'm planning on doing a test for this soon, as it could be an explanation for all my digestive issues, since so far they are not believed by any doctors to be IBD (Crohn's/colitis), though neither would surprise me at this point.
- Lyme disease - I just had some horrendously expensive testing done and am waiting for results.
- Mastocytosis - I had a genetic test done for this recently no results yet, and I've been encouraged to do a bone marrow biopsy to get more information, but am putting that off until I see my Immunologist (who I've been waiting 10 months to see) in February...because yikes.
- Gastroenterology and proctology (re)evaluation - I've been trying to get a GI referral since March 2014, and have so far been rejected by 4 different specialists in the past 9 months. Frustrating as fuck. Another story for another day.
- Pelvic pain clinic at Women's hospital - waiting to hear back on a referral from 6 months ago.
- Possibly more extensive private genetic testing
- Possibly more advanced private gut microbiome testing
- And I need to do major follow up on the whole osteoporosis thing and how to manage that, so will probably be looking for a referral to the clinic at Women's hospital for that as well, since it's kind of terrifying and I don't feel like I understand fully what I should be doing about it.
So what is wrong with me? A lot of things. Though of course even though this list is daunting, I'm lucky that a lot of things are actually in good shape, like my liver and kidneys, and most of the time my cognitive function! But after all this time and money and testing, I don't have any "magic bullet" diagnosis to explain it all - that day may or may not come for me. Is it an autoimmune disease? Hard to say. Is it all rooted in my gut issues? Hard to say, but the Osteoporosis sure screams "It's not just IBS!!!!" since it's pretty clear I've had years of poor nutritional absorption. The thing is, once you get slapped with a couple umbrella diagnoses like IBS and Fibromyalgia, most doctors write you off and stop looking for the root causes or explanations of what's going on, no matter how sick you get. Hence my having to shell out for some "special" testing and medical care.
I've been told for years that there is "nothing physiologically wrong with me" by various doctors and specialists who've barely taken the time to review my medical history or give me a proper examination. I can only attribute this to my blessing/curse of "looking fine". But over the past two years, with all of this testing, I now have concrete evidence I can hold up and say, "NO, there is not NOTHING wrong with me!" Finally, I have information to help me demand to be taken seriously, and not sent off with accusations of being melodramatic or lazy - which happens all the fucking time to people with chronic illness. So that is something.
Is anything going right?
Actually, yes! The aforementioned emotional work has made a huge difference in my life - you can read more on that in my recent "Quest for a calmer mind" posts if you're interested. So even though I'm still sick as ever, I'm happier and more at peace. Also, despite my digestive system being a real mess, I have just in the last couple months settled into a last resort fibre-free diet that allows me to have a bit more stability - which means less fatigue, less pain, and more being able to do stuff in and out of the house. That said it's not a nutritionally balanced diet, and I do still have flares, so it's more of a bandaid solution until (if???) I can finally get in to see a GI doctor. (Did I mention I've been trying to get a referral for 9 months and been rejected by 4 different doctors???? What the hell is going on in this country's healthcare system???)
Aside from my digestion, after recently discovering the function of my adrenals had gotten far worse over the last couple years (they weren't great to start with), I also gave hydrocortisone supplementation another try - I'd tried it last year, but it flared up my reflux too much. This time, my reflux is better controlled and my throat has become a little less hypersensitive, and I'm able to tolerate it. Within a week of starting on it last month, I suddenly got some energy back, at least on days where it's not zapped away by a digestive or stress-triggered flare (by nature, low adrenal function means that my body cannot accommodate stress, and no matter how much meditation I do, I can't avoid all of life's little rollercoaster rides). Between the diet changes, and the hydrocortisone, I feel like I've gotten at least a little bit of my life back these past couple months. This was a huge boost for me after an extremely difficult late summer and fall that saw me spiraling ever downward and cancelling everything I had planned, including going to Belgium and Iceland with Bruno. Big sadface.
What does the immediate future hold? My contract with the integrative medicine clinic comes up for renewal in February, and I'm not planning to renew this time, mainly because it's just too expensive. I'm hoping to keep pursuing some of the remaining loose ends (specialists, testing) through the regular healthcare system, and then check in as needed with my doctor in one-off appointments. I'm going to attempt to go back to getting primary care through my old nurse practitioner and a doctor at the nearby walk-in clinic. We'll see how that goes. In December 2012, I committed to seeing this whole integrative medicine thing through, and gave it a year...and then another year. But when I'm still not well enough to work, I can't keep bleeding money into healthcare that may be finding answers but isn't actually "curing" or "healing" me in a practical sense.
For a while now, I've been wanting to get back into "life" mode anyway, ie. just living my life as best as I can within the constraints I've been handed, and not spending all my energy and money being a professional patient. But I had to follow this whole thing through to the end first, since it feels like it was kind of my last avenue to explore. I'm sure there will be more to come, but I'm looking forward to ramping the answer-seeking back down at least for a while.
I think that about covers the bulk of it for now, and I'll plan to do a few follow ups on some of the things that were too big to cover here - if there's anything specific any of you want to hear more about, do let me know. On that note, here's to a new year, with as much happiness and healthiness as we can all muster!