Feats of reality and patient endurance

Mini Iris

It's been a really bizarre few months here, not just because of the freakishly early spring we're experiencing in Vancouver, while the rest of the country is under a snowbank. They've kind of passed in a blur. The family emergency in December and January was really stressful and made me brutally sick, but I'm finally starting to get back to closer to whatever passes for stable these days. It also led to me reconnecting with some family members I hadn't been in touch with in a long time, including one of my parents. Some positive things have come out of it all, but it's been kind of up and down and overwhelming. It's a lot to get used to right now, and I don't really want to get ahead of myself because it's too easy to assume things will keep going in one direction or another, when it's all totally unpredictable. My feelings about so much of it are totally all over the place and far from clear...and I don't even really care to work them out at the moment.

I haven't had a lot of time or energy to give to the whole thing, as I've had to yet again completely shelve everything aside from the bare necessities so I could focus on trying to get back on my feet again. I'm behind on so many things - but they have to wait. Emails being put off, my supposedly monthly newsletter that I've had a ton of signups for but haven't sent out since before the holidays, sewing projects that have been sitting in a pile untouched, the web project/business Bruno and I have been talking about and wanting to develop, even less-essential health appointments... I'm pacing myself heavily, and they all have to wait - maybe for a long time to come.

About a month ago I got accepted into the local "community health center" clinic that is in my neighbourhood. They hadn't been taking new patients for a long time, but re-opened to patients with complex health conditions. I was pretty thrilled to get accepted but didn't want to get my hopes up until I met the doctor I'd been assigned to - luckily she has been pretty great so far, and I'm feeling pretty positive about it working out long term! It's been a slow and tiring process trying to get up to speed on everything that's going on... I have been going for a 30 minute appointment once a week since the start of the month, and I feel like we've only kind of gotten through some of the most critical things. But she seems like a really "get shit done" kind of doctor, and has been working on getting the rest of my pending referrals taken care of, and starting to figure out a longer term plan while also looking at the more acute issues that have come up during the last few months.

It's frustrating having so many health issues at one time. Between the time constraints of even the extended 30 minute appointments (which are horribly insufficient for someone like me, and yet so much better than the 5 minutes I used to get at the walk in clinic), and trying not to completely overwhelm the doctor with the vast array of symptoms, conditions, specialists, tests, and history I've accumulated, I have to pick and choose what I ask for help with on any given day. Between the long standing chronic issues that still haven't had proper work-ups and that I still don't have proper management plans in place for, and the newer or acute issues that might even be more bothersome and potentially quicker to deal with, it's a never ending negotiation.

Overall, I've been extremely happy with the care at the clinic so far - and best of all, it's actually free! I found this elusive adequate free healthcare that we supposedly have in Canada! Well, apparently it does exist - that is if you're lucky enough to live in the right catchment area, and get accepted into the clinic when they finally have openings. This is the kind of medical care I certainly should have had years ago - and if I think about it too long I get angry that I had to scrape by so long with inadequate care - but better late than never. And hopefully this means that as long as I'm in this neighbourhood, I'll continue to be able to access the care I need, and maybe even get some kind of long term health management plan in place. 

You might be wondering, what happened to my fancy semi-private integrative doctor/clinic? Well, I'd been planning to explore other options when the end of my annual contract with them came up at the end of January - I'd given it a solid try there over the past two years but I could no longer reconcile the lack of improvement with the financial cost. And luckily the community health center acceptance came through just in the nick of time. As much as there were some positives that came out of trying out that kind of healthcare, there were also some major drawbacks.

Financially, it set me back a huge amount - it felt worth it at the time because I was desperate for better care, but I also really hoped that it was more of an investment and that it would result in some major improvements. As much as I wish it had, that didn't happen. For all the information that was gathered, and all the time and money spent being extremely proactive about trying to figure out what was going on and what to do about it, I feel there were some huge drawbacks (not just financial) to the two years spent giving the integrative/functional medicine approach a try. Hopefully I'll be able to pull my thoughts about that together and write more about it in the future.

In any case, the mainstream healthcare system has kind of been kicking butt for me this past month. As much as I'm totally exhausted by having to go to 2-3 medical appointments or tests every week and have zero energy leftover for anything else, I'm trying to just "patiently endure" it, as Toni would say. I'm trying to let myself off the hook for all the many other things I should, or wish I could, be doing. Right now, my focus has to be on going through the slow as molasses intake(s) with my new doctor, going to all the specialist appointments and tests I have scheduled, doing my best to do all the other basic things I'm supposed to - food wise, activity wise, medication wise... And do my best to nurture my core relationships with Bruno and a few other dear ones. That's about all I have space for right now, and I'm pretty okay with it for the moment.

Last but not least, I've had one other task come up - working on...ack, it feels weird even writing it in a public place...applying for disability. *wince* I feel so totally strange about this whole thing. It was one of the first things my doctor asked about when she got the gist of what'd been going on with me the last few years. She actually seemed kind of gobsmacked I hadn't applied yet, and practically insisted I do it immediately. I probably should have done it a couple years ago, as I'll actually be considered a late applicant now... But as much as the reality is that yes, I've been far too sick and incapacitated by my various health issues to work for a long time now, I still have a big problem with thinking of myself as "disabled". And by problem, maybe I do mean that I'm in denial - because the facts don't lie. Writing down all the things that are wrong with my body and all the ways they restrict my activities, seeing it all in one place like this... there's just no arguing with it. Despite the trickery of invisible illness, and despite the minimizing mindset of "keep pushing, don't be lazy" that still screws with my brain on a daily basis, I've had to stop doing so many things that I love that I just can't deny it anymore.

I've spent every day since I left my last job in spring 2012 thinking, "Surely, in a few weeks (or months) it'll all improve and I'll be back at it!" But, suddenly almost three years have passed, and not only has my health not improved, but it's gotten worse. I have been diagnosed with more illnesses, my day-to-day energy and pain levels and overall functioning are worse, my digestive issues are worse, I have developed several new symptoms that are either painful or uncomfortable or further limit my activities... It's long past time I accept things for what they are and stop bending to the pressure to be optimistic (aka. delusional?) about where this is all headed. Sure, somehow if things get better, I'll be thrilled. But I can't plan for it. At this point, that's irresponsible and it doesn't help me get the care or long term plans in place that I will need to keep living my life. 

On that note, I'd better wrap this up while I still have a bit of hand pain "spoons" left today to work on my disability forms. Chipping away at them an hour a day until my hands are claws is just one more exercise in patient endurance... I'm channeling my inner tortoise though, I'll get there eventually.

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