Mor Aduial: Dark Evening

It’s been some time since I’ve felt the energy to make a post here.  I’d say I’m sorry for being missing all this time, but — it’s been entirely out of my control, so I’m not really anxious to take the blame for medical reasons.

I’m also writing this with a [most likely] broken elbow, so… there may be typos and stuff you normally wouldn’t see here.  Such is life, apparently.  also, a protip: if your hand’s turning purple, your splint is WAY way too tight.

Life has been interesting.  I’m in between therapists right now because my previous, awesome one finished his internship and is leaving [v. sad] and I’m waiting to make an appointment with my new one.  This, of course, would have to happen right as things blow up, medically, mentally, and emotionally.  There’s something going on with my personal life that I’m having a very hard time coming to grips with — and I’m not comfortable posting about it until I talk to a couple very specific people first.

I’ve been dealing, on and off, with back pain for a long, long time.  Like, thirteen-fourteen years “a long time.”  At the beginning of the month, however, it got severely worse, to the point where I could barely make myself breakfast [when said breakfast consisted of toasting a bun and slicing some cheese up].  My doctor, however, told me that I didn’t need imaging, that the dowager’s hump I have is “just fat!”, and that I just need to [here it comes, folks!] LOSE WEIGHT AND EXERCISE.  Right, because I can totally run or lift weights or use the elliptical if I can’t stand, y’know?

Two visits to the emergency room, one myelogram, and some unusual meds later, I find out what’s going on.  No herniated discs [thank fuck for that, I’m not exactly excited over the prospect of spine surgery right now], BUT: I have degeneration in both of my sacroiliac joints [where your spine connects to your pelvis AKA rather fucking important] as well as what amounts to an extra joint in my lumbar spine.  And yes, both of them are extremely painful.

What this means to me?  I have no “hope” of ever “losing the weight by being active” again.  It’s taken a long, long time for me to admit it, but here it is: I am disabled.  I’m not in that “able with issues” group any longer, I’m fully in that “yep, I’m fucked!” stage.  And while this, again, is only my view and take on it, it’s … shocking.  Even though I had a niggling feeling for so, so very long that there was Something Wrong with me, I’d not only refused to admit it, but I wouldn’t have accepted it if a doctor told me, flat-out, that my spine was fucked.

I guess that’s the danger of a slow, slow crawl from “fully able and active” [I did gymnastics, soccer, flag football, and seven very successful years of softball when younger] to “disabled.”  It’s harder to accept, because you can’t see the changes.  You’re too close to the problem, something like “not seeing the forest for the trees.”  And while I can’t say that a car accident would’ve been preferable [oh hell no], I still wonder how my thought processes would have wandered if it had been something sudden.

And here is where I gripe, yet again, over the state of health care in this country.  Because I look “just fine!” other than the terrible, terrible sin of daring to be fat, nobody believes me when I say that I have spine, hip, and other problems that preclude things like, oh, I dunno… walking across the [very large] college campus in one go.  The looks I got last week while doing a visit for ~daring~ to sit down and rest after walking some distance were … extremely hurtful.  The alternative, of course, would have been to keep walking and collapse in a fit of pain-induced vomiting fifteen steps later.  I’m not joking, it’s really really fucking painful and there comes a time during the day when I have to sit/lay down and rest or I will be making a trip to the ER.

And sadly, a number of the people giving me the nastygram looks were people with other disabilities.  Canes, wheelchairs, walkers… whatever.  And — at this point in time, I take my cane with me almost everywhere.  It’s not worth the risk of not having it when needed anymore, so it’s not like people can’t tell I’m having problems.  It’s an “invisible disability,” but I’m not without visual cues that shit’s fucked in Kaieville.

Well, now that I’ve rambled for some time, gonna try to get back on track.

The thing is, it’s not easy for me to accept this.  And I know that certain of my ~medical care team~ will do everything they can to shame me and bully me into thinking that I did this by *omg* being fat.

Except — lumbarization is not something you can control.  You can’t sit there and say, “hey, spine, don’t fully fuse at the sacrum/lumbar intersection!” — it’s automated, and you can’t fuck it up by doing… whatever.  And the degeneration?  Yeah, family history there.  Hips?  Injuries and sciatica… blah blah blah.

I’m not really looking forward to my next appointment.  And while yeah, I could technically switch doctors, that’s not as easy as it sounds.  Because, you see, Medicaid is a jackass and limited me to one PCP, one controlled substances provider, one pharmacy, and one hospital [for non-emergency purposes].  And so all referrals need to go through my PCP… which… means I can’t vet or change doctors without him approving it.

Can you see it?  “Yeah, doc, I want to stop seeing you and check out other doctors because you’re not doing what I need you to do; can you give me a referral?”  In a perfect world, this wouldn’t be an issue.  Hell, in a fucking perfect world, I wouldn’t be needing to switch doctors.  But, in this fucked-up system and fucked-up world, you take what you get.

And besides, how do you successfully change a doctor’s worldview from “your fat olololol CALORIES IN CALORIES OUT” to “yeah, being thin isn’t the end-all-be-all, just focus on being healthy for now”?  Especially if he thinks that your spinal problems will go away if you just… oh, forget it all.

I’m having a rough time, honestly.  I’m withdrawing into myself again, because I can’t get outside often, and when I do, it’s either to the doctor’s office, the pharmacy, or the grocery store.  That’s it.  I haven’t been “out” for fun in… since my birthday, actually.  Two and a half months.

It’s hard being alone.

And it’s even harder when none of your providers can accept that shit needs to happen BEFORE you’ll be able to ~lose weight~, especially if you can’t be “active” at all.

That’s gonna be a helluva appointment.

And with that, I bid you adieu for today.  I hope to post more often, but — I won’t guarantee anything.  Just keep checking back as you can.