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.

Time flies and junk

Image via WikipediaI just realized it's been a week since my last post.
As expected, the NAMI walk did wear me out quite a bit. I spent most of Monday curled up in bed with Oreo and a book and even had a midday nap.
Tuesday was physical therapy which was harder than usual for me (still tired). And the trigger point injections were wearing off by then. My therapist was trying to do some range of motion and traction stuff with my neck and I just could not relax. The constant tension is a big issue for me in terms of posture and pain and migraine.
I forgot to mention last week that I had a chance to try out a recumbent tricycle last Saturday.  It was absolutely amazing.  I had a regular bicycle several years ago with the idea of using it to commute to campus.  I didn't want to admit it at the time, but I was afraid every time I rode it.  I didn't feel balanced or secure and I really wasn't comfortable turning and moving to look behind me.  So I quit riding for some time.  I thought maybe it was more the bike than me, so in 2008 Tom got a beautiful vintage Schwinn from a friend and we put rearview mirrors and wire panniers on it.  I rode it twice, terrified both times that I was falling/going to fall.  By the end of the second ride I was also in pain and exhausted.  We eventually sold it.  I occasionally look back on it with wistful regret - I love the sensation of riding, I was really hoping to get into touring (Dervla Murphy is a hero of mine) and riding used to be fun.
When I started physical therapy again, my therapist started having me warm up using their recumbent exercise bike. And it dawned on me that a recumbent bike or even better a trike might be something I could try to start riding again.
There was a sports fair nearby last weekend and a local bike store that sells adaptive bicycles had several bikes out. I tried an upright trike and it was okay, but not wonderful. I did feel much, much safer and more confident though. Then I tried the recumbent. It was amazing! Pedaling felt super efficient and wonderful and stretchy. My arms and hands were in a neutral position so there was no pain or tingling or numbness. I felt absolutely secure and far more confident of my ability to steer and be aware of things around me because I wasn't devoting so much attention to not falling or being afraid of falling. It felt a little like being in a go-cart. The only major problem was how low to the ground it was - which made it a challenge for me to get in and out of and made it a bit less visible. Nevertheless, I really fell in love with it. And there are models that are elevated a bit more to roughly the same eye level as a passenger car.
Unfortunately, they're fairly expensive, especially on our budget. But we're hoping to save up and maybe find something used or eventually squirrel away enough money. We're also hoping to go out to the bike shop one day to see if we can arrange a longer trail-ride for me to get a better idea of how I like it for longer than the 1/4 block or so I could ride at the sports fair.
I'm also planning on getting a pedal exerciser to work with while I'm on the couch or floor to build up some stamina in my legs and get some good stretching in.
In other news, the ArtFire opt-in drive got enough subscribers, including me, which means I will have an ArtFire Pro account for $5.95/month. I opt-ed in as a sort of "if it works, then I'll really buckle down and open shop." And it did. So, come November I hope to have at least a little something up and running. October is going to be entirely too busy for me to do it then - we're going to see my parents and my grandmother.
And, in less happy news, my Nana has esophageal cancer. She fortunately is not in any pain, but she is still having trouble eating despite having a stent put in to help expand the esophagus. Given her age and relative health she and her doctors have decided to forgo treatment and let nature take its course. I support her fully in this decision, and totally understand her desire to be as comfortable as possible in the time remaining rather than go through chemo or radiation and the side-effects related to them. It does mean, though, that it is just a matter of time until we say goodbye. I am, though, very grateful to have a bit of warning and the chance to prepare and say goodbye. I've been trying to talk to her at least once a week and she sounds fairly good. And, like I said, Tom and I are going to visit her mid-way through our trip out to see my parents.