morgan_dhu | Entries tagged with disability issues

So, I’m thinking of trying to post more here and build up my participation so that when I am slammed by FB’s new content restrictions, I still have a social network to ease my isolation.

Things are not good, for those of you who are not on FB, which is where I’ve been posting updates on my health and wellbeing. In fact, they are completely awful. I did finally get the kidney surgery I was waiting for, and sll the tubes and stents are out of me, but I have now fallen victim to a particularly severe case of restless limb syndrome (rls) plus none-stop pruritus, plus massive edema, and I am exhausted, unable to sit comfortably or lie down at all because of the extent of the swelling in my lower body and legs. The rls leaves me going crazy with massive crawling sensations in my legs, arms, and as can happen in severe cases, abdomen. Doctor is unable to pinpoint a cause. I am fucked.

Not reading much because of all of this. Not doing much of anything, in fact. Very depressed. Exhausted. Half insane from constant crawling and itching all over my body, plus pain where all my swollen parts are jammed together so I can sit and type this.

Not a happy camper,

I am thinking of mirroring some of the posts I make on FB here, and perhaps creating more original content here as well. That is assuming I don’t lose the battle with my body completely and just bugger off the mortal coil.

My medical issues over the past year (yeah, i'll soon be a year since I was diagnosed with hypercalcemia and my life turned into one medical nightmare after another) have severely interfered with my new identity as a Hugo voter. Over the course of last year, I didn't read nearly as many well-recommended works as I'd wanted to. So when January rolled around and nomination season was gearing up, I made lists of the books and short fiction I hadn't read but that sounded really interesting, and tried to push my way through those lists. A few years ago I could have done it easily. This year, I barely read a handful of what I wanted to, though I did read enough, I felt, to make some good nominations in most categories.

And now the finalists have been released and there are many I haven't read yet. I'm working on them, of course, but it's so hard to just focus and read these days.

It's disorienting, like losing one of the core parts of my identity - which I suppose it is, I have no memory of a tine when I did not read, and read extensively and quickly at that. I'm told that no one knows when I learned to read. Like many kids, I would often look at my books even when I wasn't being read to from a very early age, but it was assumed that I was looking at the pictures or making up stories, as kids do. It wasn't until my mother started listening to me muttering things when we were out driving that she realised that - at not yet three years of age - I was reading billboards and window signs. And that at some point, I had actually begun reading for myself, not just following along as she read to me.

So it feels very strange not to be reading very much. As though I'm not myself. I keep expecting the real me, who focuses easily on her chosen reading material and moves through it like a fish in water, to resurface. Maybe she's just taking a time-out, getting used to operating while in constant pain and without much sleep. But I fear more and more that she's gone, and won't be coming back.

I miss her very much.

I've mostly been reporting on the state of my health on Facebook, but seeing that I haven't posted here for a while, I figured I ought to try to bring the saga of my deteriorating state of health up to date.

So... Back in late May I was diagnosed with primary hypercalcemia, which means that something had gone haywire with my parathyroid glands and they were producing too much of a hormone that leaches calcium out of the bones at a rate that is not only very bad for your bones, but cannot be properly excreted. As calcium builds up in the blood, you get increasingly sick, and can end up having seizures and nasty life-threatening shit like that.

They did various kinds of imaging on my throat and while the pictures were a bit inconclusive, they figured it was provably due to one or more adenomas, non-malignant growths on the parathyroid. So they put me on the list for a surgery slot to have the adenomas excused from my parathyroids, and monitored my blood calcium closely.

While waiting for surgery, I fell and broke my foot. Back to the hospital. My foot was placed in this rigid boot that has a heel and unbalanced me to the point that even after I was ok'd for weight-bearing exercise, I couldn't balance on my uneven feet well enough to stand.

After about three weeks in the hospital, during which I developed a nasty UTI that would ultimately stay with me for the next four months, still unable to stand, I was transferred to a rehab hospital where I would receive regular physiotherapy. which would be of very little use because I'm still wearing this big-ass boot that destroys my balance. In the meantime, i get shuttled back to the hospital a few times, to have my calcium levels lowered (intravenous drugs plus massive IV fluids to make me pee out the calcium) and to have my foot monitored.

Once the boot finally comes off in late September, I start to make real progress with the physio - I'm shaky, but walking. Then.... Remember that UTI? They've been giving me courses of various antibiotics to try to kill the bugs in my bladder, and it's been coming back every time. They try a new drug, to which I have a seriously bad reaction. For about a week, I'm so weak I can hardly move, plus nausea and a bunch of nasty stuff. Can't manage the physio - haven't enough strength to stand.

It's now mid-October. They decide to send me home from the rehab hospital because I'm no longer benefitting from treatment. Once I get home, and get over the drug reaction, we find a private physiotherapist and start working on walking again. i just start to get my strength back and I'm walking a bit, when I get the call that I have a surgery date. November 17. Back to the hospital. UTI is back, too.

The surgery ends up being much more complicated than expected, because once they have my throat slit and they can see the parathyroids, they discover there are no adenomas. While adenoma is by far the most common cause of primary hypercalcemia, if it's not adenomas, it's probably hyperplasia of the parathyroids, for which the surgical solution is to remove 3.5 of the four parathyroid glands, a sonewhat longer and more difficult operation.

I come out of surgery with unbearable pain in my abdomen and groin, for which they plug me full of fentanyl, which does nothing. Eventually, they try something in the same family as ibuprofen, but stronger, which works some. Recovery is slow and problematic. The fentanyl gives me very bad constipation for three days, the abdominal and groin pain lessens but does not go away, I'm weak as a kitten and.... My calcium levels are not falling as they should. They do the IV drip to lower my levels again and after a few days, they send me home to recuperate, ordering continued monitoring of my calcium.

Meanwhile, I'm developing painful bedsores on my butt - a new thing, even though I have been pretty much confined to bed fir years. And the UTI is still bothering me. And I'm having fevers and chills snd on-going abdominal pains and all sorts of stuff, and I just can't seem to get any strength back. My doctor prescribes a long course of yet another antibiotic, which seems to finally mostly clear the UTI. All the other symptoms continue, and despite doing all the right things, my bedsore do not heal.

Regular blood tests show my blood calcium is still rising - and now there's a new twist. I'm suddenly seriously anemic, my hemoglobin is way lower than it should be, which is probably the reason for my extreme weakness and the impairment in normal healing.

Which brings us to now. The last blood test showed a very small drop in calcium levrls, I'm on iron supplements which should bring up my hemoglobin over the course of 4-6 weeks and hopefully help me regain my strength snd heal the sores, and my doctor is working on getting me a consult for the hemoglobin issue.

Oh yes, during all of this I've lost about 20 kilos, which when added to the 50-odd kilos I've lost over the past few years has resulted in a lot of loose skin that tends to crease and fold in an extremely painful way. Add to that the pain from the bedsores and I'm having extreme trouble sleeping. I'm lucky if I get four or five hours of sleep in 24. So I'm now exhausted and almost braindead. I'm in great pain all the time, from half a dozen different things that are going wrong. I'm depressed and just plain tired of trying to keep going, to the point of wondering how I might go about persuading someone that I really am a good candidate for assisted suicide, which is now legal, though under very limited circumstances, in Canada.

As the title says, life is hell.

In the past year or two, I've become accustomed to posting on Facebook rather than here. It's easier - or at least, I perceive it as easier. On Facebook, all I need do is post a few lines, or a link to an article or picture I want to share. But there's something about a blog that seems to demand a greater degree of involvement with the text, and I often lack the energy for that. Maintaining my book journal seems to take everything I have.

And then there's the fact that really, not much happens to me except that things get more painful and more difficult to achieve. On Facebook, I mostly post articles dealing with current affairs - issues I feel strongly about. But I'm usually too tired to write extensively and coherently about those issues.

So perhaps I'll just blather on about my odd thoughts, as I'm doing now, and perhaps that will justify my keeping this journal active.

So, the last time I posted, I told y'all about how much my life sucked.

It still sucks. Only much more so.

My general state of health continued to deteriorate during the summer and fall, and between all the things that are wrong with me, like the joint pain and the increasingly intolerable edema and other stuff (which I will address in another post, because it's too complicated to put here), it was kind of getting obvious to both me and my employers that I really just was no longer able to perform my work in a satisfactory fashion. Not so much a quality dip, as not being able to spend enough time sitting up at a computer to actually do my work on time.

So we started taking about the company's Long-term disability plan (LTD) and how because my health conditions are not exactly the normal kind of stuff it's not certain I would qualify but my employers assured me they would to be as supportive as they could be once I reached the point where I simply could not longer work at all.

So that day has finally come. Friday was my last day of work. Now I'm on medical leave for four months until I've waited out the qualifying period for LTD, and then I get to apply and wait and see if they will pay me benefits. But of course, benefits don't come anywhere near covering household expenses. I can also apply for Canada Pension Plan Disability benefits (CPP-D) - which, again, I may not qualify for because my medical situation is so weird - but not before six months have passed.

Even if I do manage to qualify for both, I will still be almost $1,000 a month short of what's needed to pay all the bills (mortgage, taxes, utilities, insurance, food) each month. But... I can't give up the house, because no rental situation is going to give me an environment that is free of toxic stuff and thus safe for me to live in. Any apartment we rent would share walls with other people and their perfumes and stuff would seep in and leave me in a situation that I'm not sure I could tolerate for the full length of time it would take for all that crap to kill me. I mean, we bought this house in the first place because I was getting so very sick from breathing other people's laundry exhaust, soap, perfume, air-fresheners, and so on.

So that sucks. Assuming all goes well and I do qualify for the LTD and the CPP-D, where do I get another grand a month? We have no debt except for the mortgage, so I can't reduce expenses by consolidating debt. We may be able to switch to a variable mortgage, which might lower the interest a bit. Not only am I pretty much not able to work, but the few things I could do - if I tried to do any of them, I would immediately become ineligible for both the LTD and the CPP-D. My partner is my full-time caregiver, he can't work either because he can't leave me alone.

So I really don't know at all how we're going to survive this. There are no relatives who would be realistically able to help (I have no relatives, period, and my partner's relatives are few and in difficult circumstances themselves, for the most part).

So... We're basically fucked. There's enough in savings and inheritance to carry us through the qualifying period (when I am not getting any money from anywhere), and what's left over will carry us through several more years (four or five, depending on various possibilities) IF I qualify for both LTD and CPP-D, and maybe one year if I don't. After that... things look bleak. Really, really bleak.

If anyone has some bright and original ideas, they would be welcome. Just...

Budgeting is not a solution. All we spend money on now, aside from the aforesaid mortgage, taxes, utilities and insurance, is food (which, because one of us has major food sensitivities and neither of us can tolerate chemicals, dyes, preservatives, etc, in our food, pretty much has to be what it is), household necessities (toilet paper, washing soda...) and books. Clothes when the old ones wear out. Replacing things that are broken or dead (we just bought a new TV because the old one is losing its ability to show images that are decipherable in any way whatsoever). We never go out, not even to see a movie. So please don't talk about cutting out non-essentials. We are by nature non-consumers. We don't buy shit we can do without anyway.

But anything else? I would love to hear any creative ideas or sources of funding that might apply to someone living in Toronto, Canada. Because any thought you have might just save my life.

For those interested in the short version of what's been happening for the past couple of years, it find of goes like this:

I got sick, which involved a bed-rest of several months, during which I discovered an addictive MMO called Travian, which I played intensively, being sick and bored and in great need of diversion. I got better but my mobility didn't, so I kept playing, when I wasn't working. I started running out of spoons for anything except basic living and holding onto my job. This lasted a year or so.

Fast forward to the beginning of this year. My father-in-law was diagnosed with inoperable lung cancer. Then I developed a very bad case of shingles which still has not wholly cleared up. Then my niece developed a severe form of auto-immune anemia which did not respond to standard treatment and she almost died, but managed to pull through but only with chemotherapy and immunosuppressants, which have kind of put a wrench in her ability to conduct a normal life. Then my father-in-law died. Then my mother died - intestate, and in another province. I, as sole heir, have a whole lot of bureaucracy to deal with which is made ten times more difficult by the fact that my mobility issues are now such that I cannot travel to where she was living to handle any of the estate settlement issues in person.

I am not really bothering to comment on my emotional response to any of this, nor on my current emotional state. Y'all can probably make accurate guesses anyway.

So that's where things are right now.

Having broken the ice, I will probably continue posting now and again. But don't expect too much. It's hard to find free spoons around here these days.

Ok, if you're out there, I know you're starting to think I overanalyse things, and you know, you're damned right.

But I had this notion, while answering a comment by

jenwrites to my first meta-journalling post, and I wanna write about it, so there.

I wonder if I'm placing more importance on the aspect of being able to see a more multi-dimensional image of people in LJ than in other cyberfora because I'm disabled. (Note, while I have a number of medical issues, it's really only in the past two-three years that I have become severely limited in terms of mobility, so I'm still getting used to not being able to hop on a bus and go wherever I want to go.) A lot of the people I know on the internet are members of various fandoms. They meet at conventions. They know each other in a way that I probably never will.

At the same time, my own social interactions IRL have become more limited. Yes, I have lots of IRL friends with whom I carry on viable relationships, but they are kind of one-sided. I never go to their homes, because most of them live in places that I can't go to, because of one or more of my disabilities. I can't go out and do things with them. Hell, one of my best friends is an actor, and I haven't been able to get out to see her in a play for eight years now. All the physical, real-time experience of my relationships with these is centred in my apartment.

Maybe I'm struck by finding more depth in the context of my relationships with my friends in cyberspace because I feel I'm losing depth in the context of my IRL friendships.

Something to contemplate.