Turns out I'm more twisted than anyone realized

Image via WikipediaI think I've mentioned before that I have scoliosis.  I've never really thought much of it - it was diagnosed at my college student health center when I was 18 or 19 and went in because I was having pretty horrific sciatica-type pain.  They told me it wasn't anything to really worry about and sent me on my way with some PT exercises that I did for a while and then promptly forgot about.
I've had trouble sitting up without a pillow or something for back support without pain in my lower back or burning pain in my side muscles for years and thought it was just because my muscles were weak.

It didn't really come up again until I had my first MRI and one of the douchetastic duo was all "whoa, you have scoliosis!"  and I sort of nodded and asked if it mattered.  Other than making my lumbar puncture a bit more challenging, it didn't seem to.

Back at the beginning of November, I met my new PCP (my previous PCP has switched clinic locations to somewhere harder for me to get to, so I wound up switching).  I had been having a fair bit of sciatica-like pain for months and my physical therapist suggested I ask about having some imaging done.  As it turns out, the many MRIs I've had all focused on my brain and spine as far as my thoracic vertebrae, but not really lower.  So I went and had an x-ray of my ass.

My PCP called and let me know that the radiology report noted the scoliosis and some narrowing in the spinal canal.  For the time being, keeping up with my PT and using NSAIDS and heat or cold are the best thing for it.  Fine with me.


I mentioned it to my neurologist when I saw her last week, just to be sure she took a peek.  She suspects the scoliosis is contributing to some of the pain/tension in my neck that goes along with my migraines.  Again, were mostly just keeping an eye on it - if I start having really severe pain or other issues suggesting more impingement of nerves or something we'll take another look.  Fine with me.

I saw my rheumatologist today and also mentioned the x-ray to him.  I love my rheumatologist - he's crotchety and snarky, but not with his patients, just in general.  He looks at it muttering about "let's see what the radiologist said, not that I care what they said, but let's see if they actually caught anything they should have..."
Turns out some of the facet joints in my lumbar vertebrae are rubbing against each other because of the scoliosis.  And my sacroilliac is tilted a bit weird so on one side it's not quite lined up properly with the sacrum and on the other side, it's rubbing up against the sacrum.  Fun.  So, that's something to keep an eye on, as there is some degeneration of the osteoarthritis kind from the bone rubbing on bone.

My scoliosis is a bit more pronounced than I had realized too as I'd never gotten a really good look at my x-rays.  There's not only a curve around L2/L3, but it twists a bit as well.  All that tugging and junk on my muscles is of course going to give me back pain and muscle spasms.
That, of course, led me to ask if the muscle spasms could partially explain my involuntary movements.  My rheumy thinks it's a possibility.  Shame no one thought to look into my reports of back pain and history of scoliosis 2 years ago. 

For the time being, I'm to keep up with my PT to keep my muscles strong, use moist heat on the back, and that's mostly it.  Which is fine.  I'm just glad there isn't any sign of inflammation or inflammatory arthritis through that area.

He also noticed that my hands and fingers are getting pretty puffy.  I've been having more hand pain lately.  So that's to be kept an eye on too.  We're checking my ANA and thyroid stuff again to be sure my thyroid levels are still behaving after that weird fluctuation in October.  And I go back in February to see how the arthritis-y stuff is doing in depths of winter.  I've had a sore throat non-stop since October and the itchy rash of doom on/above my elbows, so maybe the blood work will show why.


I've been having good fun playing with the interactive spinal anatomy things on the University of Toronto website and making Tom help me figure out what parts we talked about.  It is super geeky fun.  I do worry a bit that I'm preoccupied with medical stuff, but I tend to look stuff up and read more out of curiosity and a "whoa, why/how does that happen?" than because I think I'll find *the answer* to my health issues. 

I also had a psych follow-up today.  It went well, as usual.  We're upping my med doses hoping to prevent migraines and to hopefully prevent a repeat of my mini-breakdown with suicidal ideation a few weeks ago.  That would be nice.  I'm hoping it will help my memory too, which has gone to total crap lately.  I recently started the sequel to a book I read in October and have been pretty lost.  Derp.  They've also said they totally support my application for disability and will help however they can.  It's really, really great to get that support and not feel as though I'm lazy or a leech or something.

In other news, I got my rejection from Social Security before I even finished my initial application.  According to them, I don't have enough credits.  I've gotten in touch with a lawyer.  There is some inexplicable weirdness for 2 years where it appears my employer failed to deduct or pay Social Security.  The loss of those 2 years means I don't have enough credits for SSDI.  I started the correction process in early November, but it apparently hasn't gone through all the way.  Anyway, the lawyer is looking into it.  I'm really, really hoping  the stupid mistake doesn't cost me my SSDI benefits.  The lawyer thinks I have a pretty good case otherwise, between my list of diagnoses, my functional symptoms, etc.  And as he told me - even if someone wants to say your symptoms are "in your head" it doesn't make them less real or lessen their impact on your life and ability to maintain gainful employment.  And my little part-time job shouldn't create a problem as my earnings are well under the allowed amount per month. 
I'm really hoping the earnings record crap can be resolved easily.  All the paperwork and figuring things out and blah wears me out a lot.  A *whole* lot.

The Joys of Bureacracy and Confusion

So after agonizing over it and talking about it and thinking about it and, and, and...  I've finally started the application process for Social Security Disability (hereafter SSDI). 
Some of you may be wondering why the hell I've done this now as I got a job in August.  While the job is nice, it is also exhausting to me.  I cannot work it full time.  I can't even work two days in a row without serious repercussions like needing to spend most of the next day or two in bed.  And this is not a difficult job.  At all.  My mental health has taken a distinct turn for the worse (not to crisis levels yet, but treading uncomfortably close) and I think it not unreasonable to suppose that some of it is because I can't quite cope with the "stress" of working.  While I can, and possibly will, adjust meds to see if there's an improvement, I have noticed that the weeks when I'm not scheduled so frequently I seem  to be less inclined to anxiety/depression crap.

Thus, I've had another wake-up call in terms of my limits.  I am not, by the Social Security Administration's guidelines "gainfully employed."  I'm not sure how much longer I can remain even sub-gainfully employed.  I've already had to ask to be excused filling-in for certain shifts because they are seriously detrimental to my health.  Anyway, I hope to keep working at least a shift or two a week for as long as possible.  But I also recognize that I don't know how long that will be. And as I've said before, I have to plan based on how I feel *now* not how I *might* feel in the future.  The way I feel now is that working just 16 hours a week at a sedentary, uncomplicated, quiet job is nearly overwhelming.  Ideally, in the future, I might be able to take advantage of the Ticket to Work program or successfully work from home in some way, or be healthy enough to work a 40 hour week.  Or hit the lottery.  Or something.  But now, not so much.

The initial step in the process was calling up Social Security and trying to fix my income statements for a few years when, for some reason, they have me as having received no income.  While I was never making a hell of a lot of money (because I had been in school full-time between the ages of 5 and 27), I *was* making some.  And paying taxes on it.  Dammit.  Anyway, they were very nice and helpful and hopefully that's fixed.

SSDI is in part based on work credits.  For every x amount of $ you make you get a credit.  I cannot, despite valiant effort, figure out if I have enough credits.  Some calculators say yes, others say no, there are weird exceptions to the rules based on age.  Buhhh.  Also, I resent the term "work credits" - I was "working" my ass off, I just wasn't getting paid for a lot of it.

So, I started my application.  Teh confused.  I haz it.  I think that may be the first test of disability.  If you are capable of filling everything out on your own correctly you clearly are not disabled.  So, I've let it sit for the past few days and started looking for assistance. 

The first agency (Allsup) would not take my case because I'm working, even though it's usually under 20 hours per week and my monthly income is well under the SSA cut-off.  If I quit my job they would review my case.  So, hell with that.

An old friend who happens to be a lawyer saw me moaning about the above on Twitter or Facebook or somewhere and sent me some helpful links.  So, I've been researching law firms.  I already have one scheduled to call me (tomorrow, hopefully) to discuss details, etc.
Here's the things I plan to ask about.  If anyone has helpful suggestions, they'll be well appreciated.

• Fees - by law they're supposed to only be able to claim a certain % of the back-pay or a set $ amount and only if they win.  No win, no money.  I want to be sure they know this or else I will run away.
• What about the work credit situation?
• Should I continue the application I started on-line?  If so, precisely what information should I include and how?
• How much and what am I expected to do?
• What is their success rate?
• If they won't take my case can they refer me to someone who might be able to?
• If they won't take my case is it because they know it won't succeed or is it just because it will be too challenging?