Dammit, George RR Martin

Image via WikipediaI finished A Dance with Dragons two nights ago.  Mr. Martin needs to cut it the hell out with the cliff hanger endings, especially if he is going to take brazillions of years between installments.  This is not good for my patience.

Otherwise, um, we're fiddling with my thyroid dose again trying to find the sweet spot.  I'll have to get the lab work done after we've moved to see if we got it right or need to fiddle more.
I have had another round of Botox shots for migraine.  Took a bit longer to feel (or not feel?) the numbness and paralysis in my forehead.  Still getting migraines, but not quite so many.
I am in an ongoing odyssey of trying to get replacement CPAP supplies and possibly repair before we move.  I have been trying for a month actually, but referrals keep getting lost or not sent and it is seriously starting to piss me off.  I am sensitive enough to stress and extra activity even with the CPAP but sleeping without it (or without it operating properly) will make everything WAAAAYYYYY worse.  And increase the time for my recovery to baseline functionality.  So, weeks or months to recover from the move, etc., instead of days or weeks.

I am still tired and shaky and hurty and having sleep problems after overdoing the packing last week.  Grumble.  The whole moderation and pacing thing with CFS is a pain in the ass sometimes all the time.

Still packing.  I have a lot of yarn.  Way more than I thought.  Mostly single skeins of acrylic or acrylic blend intended for amigurumi.  So I should, like, make more amigurumi and stuff.  Derp.

I have set aside my emergency travel projects and stash and a pile of actual paper books in addition to my Kindle.  I may have done that even before setting aside the important papers that should be easily available.

Oreo has had a bath and is grumpily curled up on my lap in a blanket to keep warm.  He finds the packing deeply confusing and a bit frightening and so has been even more of my furry shadow than usual.

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.

Truce?

Image via Wikipedia

Apparently this is a "smooth Oreo"

I believe the monster and I may have managed a truce.  I feel a bit better today mood-wise, though I do have a migraine.  :P  At least I'm back to my usual cynical grousing and bitching rather than the weepy mush I was the past few days.  Waaaay better, right?
I've stayed in bed with my new pink jammies from my Nana and shared powdered donuts with Oreo and goofed off on the internets.
The monster has stayed away today.  Hopefully will remain away.

Don't Feed the Monster

Image by kevindooley via Flickr

If I turn green and line-y, someone get me some better drugs, stat.

Late last night we got back from visiting my family in Nevada for about 10 days.  More about that in other posts.
Part of the trip was just to visit family I haven't seen in years.  Another part of it was to see my Nana, who has esophageal cancer.  She has chosen, with the approval of her doctors, to forgo treatment and so it is just a matter of time before she'll leave us.  It was wonderful to see her.  Her hearing and eyesight are not so wonderful and she tires more easily, but otherwise I think she's doing fairly well, all things considered.
Unfortunately, we didn't take the opportunity for a side trip to visit one of my uncles.  He was admitted to the hospital the day after we went back to Las Vegas from Reno.  He's in his 80s, his heart is apparently working at only 30% capacity.  I haven't seen him or my aunt since I was married 7 years ago.  My aunt has lost her hearing in the past few years, so communication is a bit challenging.
I had to watch my dad try to make the agonizing decision of whether to try to drive up there (and dad is disabled from arthritis in knees, hip, and back) to see his only remaining brother and possibly only contribute to the fuss and stress or wait and possibly not have a chance to say goodbye.  Fortunately, my uncle seems to be doing a bit better and dad managed to talk to him briefly on the phone - he's mostly just tired and wants to rest.
Last night, from the time we got off the plane in Chicago and all the way home I was fighting back tears.    I'm not entirely sure why - there are the obvious reasons, of course, but I don't usually do that sort of thing.  I sobbed for quite a while when we finally got home.  I've been doing the same thing on and off all day today.
I hate it.
I'm terrified it's the depression monster making a return.  I've had only a few brief episodes of non-situational depression in the past 2 years - they were fairly minor and passed quickly.
This is awful.  I can't point to a reason why I'm crying, I can't really point to a cluster of reasons.  It was hard to come back to Chicago and the rigamarole of PT and therapy and doctors and work and bad weather and being shut in.
But mostly I'm just unspeakably, inexplicably sad and fragile and convinced everyone is upset or angry at me or about me and flitting about the edges, taunting me is that faint thread of "it would be easier if I were gone."  It's not constant, it's not a plan, it is not yet to the emergency stage (and I give you all my word that we can judge when it does become an emergency and what to do and steps will be taken), but it is awful.  It's not *me,* dammit.

I sway back and forth between wanting to talk and be with people and wanting the world to go away.  I don't want for people to see me like this.  And it's nearly impossible for me to really communicate sometimes when the monster is here.  And I get so over-sensitive that it sometimes feels like everything anyone says is hurtful or angry or exasperated.
And then I have a few minutes of normal.
And then I'm overwhelmed again and even deciding to get up and have water is an agonizing decision.
And what else to do is a difficult or impossible to decide - what do I do to starve the monster instead of feeding it?
If I go and rest and try to sleep and cancel PT tomorrow to give myself another day to simply *be* at home is that good or is it chunking a juicy steak right at that bastard?
Should I keep aimlessly surfing the web or pick up a book or watch TV?  And if I can't keep focused on any of those will it feed the monster more?
Should I force myself to do things or take a bit of rest?  Is resting feeding the damn thing?  Can I trust my natural inclinations or fight against them?
Am I just overwhelmed from travel and grief and pushing harder than usual and trying to hide symptoms and residual thyroid ick?  Or is the monster coming to stay for a while?

Image via Wikipedia

Wut?  Does that mean that anxiety makes me sneeze?

I'm hoping I'll feel better soon.  I'd rather not make this blog into Emo Central.

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.

Just What Is Progress, Anyway?

Image by brianjmatis via FlickrI had a follow-up appointment with my neurologist this afternoon.  She is blown away by how much better my walking is now than in was a few months ago.  And it dawned on me - she's right.  And that's good.
Now let me try to explain why that's a bit of an epiphany for me.
For so long, I was trying so hard to convince doctors and myself and other people that something was wrong that hearing "that's better" or "well, that doesn't seem to be happening now" or "that's not too bad" was infuriating. Intended or not those reactions were often tinged with more than a hint of "and you're wasting my time" or "there's nothing wrong." And so I've been resistant to "you're looking better" because I had started just automatically assuming the stubborn mindset of "no, jackass, there is something wrong and just because I happen to be having a good day today does not mean that every day is like this one.
I've also started to realize that while some of my problems are interrelated or come as a set, others don't. I think it's taken me a little by surprise that my walking has improved because other things haven't. I don't have a lot more energy or strength or stamina. I still need my cane. But I can walk fairly well without the cane without weaving all over or tripping over my own feet or starting/stopping or having my lower back and pelvis moving all over the place.
And I do feel better between my daily Wii Fit and weekly PT. Not "cured" not "100%" but better. Baby steps. And so I still balance between frustration and acceptance on a daily basis. The fatigue and weakness and general ick are things that I'm increasingly thinking I'll just have to live with. I need to not lose sight of the progress I make on the things I can actually make progress on like walking and basic fitness and (hopefully) migraines.
Today's appointment also wound up with me getting novacaine injections into some trigger points in my neck and shoulders in the hope that will help my migraines.
According to my PT, because my shoulders are usually rounded and I carry my head too far forward, I'm overstraining the muscles in my neck and shoulders, which is not helping me in general, but can definitely be contributing to my migraines.  So, we're going to continue working on that.  Suggestions are welcome - I would be thrilled to get rid of the permanent aching knots in my neck and shoulders, especially the ones that make it feel like my shoulder is going to wind up in my ear during the worst of my migraines.
We're also upping the does of my preventative med to see if we can get it to work. I'll be very happy if I can quit with the 4 or 5 migraines a week. They're bad enough when they suck up two or three days a month but most of a week is just too much.

I Fail at Blogging!

Still alive.  Totally forgotten to post.  Probably just as well as I haven't been up to terribly much.  Well, I have, but it's gifts for people who might read this so I can't exactly go on at length.   Health has been being varying between okay and stupid and annoying lately.  This is to be expected with both Chronic Fatigue Syndrome and Functional Movement Disorder, but it doesn't make it any less frustrating at times.  While there may be noticeable waves and troughs over time, the general trend should be toward improvement.

The Wii Fit Plus is still a huge success as far as I'm concerned.  I use it nearly every day (I usually take one day off a week).  I started out at about 5 minutes, moved up to around 7, then up to 10, and last week up to 15.  I have seen some improvement in my stability and balance and coordination.  My neurologist was impressed.  Unfortunately, it seems 15 minutes was too much, so I've dropped back down to 10 for another week and will try ramping up again, maybe in 2-3 minute increments. 
I've been trying to get in a daily walk of at least 10 minutes but have slacked off on that lately - it's been insanely hot.

I've been experimenting with taking butterbur root extract supplements to help prevent migraines (it works as a calcium channel blocker, which may help).  I'm not sure that it's doing much, as I'm still having at least one migraine every 10 days.  The weather has been dreadful, with lots of thunderstorms recently, so that may also be contributing in a big way.  I'll keep up with the butterbur as it doesn't seem to have any ill effects to see how I do long-term.

My sleep schedule, which was doing so well for a few months there, is now royally screwed again.  I stopped using my SAD-lamp thing once spring/summer was well underway, but I am beginning to suspect that I should go ahead and keep turning it on when I first get up anyway, even if it seems fairly bright in the living room to help reinforce the message to my brain about when morning and night actually are.  Being overtired and in pain also contributes to insomnia, so all that together probably explains the suck.  Still annoying as hell.  It saps a great deal out of my already tiny amount of productivity to be awake(ish) at night and sleep all day. 

The latest crap is that my acne has gone nuts and the occasional weird insanely itchy rashes I get on my ankles have gone full on wacked.  I have a dermatologist appointment this week.  I wouldn't care so much about the acne, but it hurts like hell and is spreading down my back and chest.  There's another annoyances too that I can no longer handle with OTC stuff, so off to the doctor.  Possibly related to the Plaquenil I've been taking (which was supposed to *help* with some of the rashes).

Plaquenil is driving me nuts in other ways too - my GI tract is not a fan.  Still planning to stick it out the full 6 month trial (that will end in September), but I'm not seeing a huge improvement.  I think I might be better off with a daily OTC anti-inflammatory and treating the arthritis and rashes on their own as needed.  It certainly doesn't seem to have helped with fatigue.


I am planning on meditating daily now to put my zafu to good use.  I've found a ton of guided meditation podcasts through iTunes to work with, so that should be fun.  Oreo likes to come be near me, but not bothersome, when I meditate, which I think is adorable. 
I've also found sitting on the zafu to knit or crochet for brief periods is surprisingly comfortable. 

In other news, I love PaperBackSwap.com.  I now have a huge pile of to-be-read books and have sent many of my own no-longer-wanted books off to happy new homes.  Awesomesauce.

Frustration and Fortitude

Friday I had my first follow-up with my regular neurologist after having seen the fancy-pants guy at Rush and having gotten the Functional Movement Disorder diagnosis.
It was, um, interesting.
I'm not sure exactly what the note from Rush said, but it seemed from the way the conversation proceeded that my neuro is looking at FMD from the icky, old-fashioned "conversion disorder" perspective.  Joy.  Fortunately, she is willing to learn and wants to continue following up with me and isn't just telling me to get my crazy ass off to the psych department.

And, even more fortunately, my therapist specializes in neuropsych and is all over researching FMD and working with me and the rest of my docs on treatment options.  Hopefully after my therapist and neuro talk we'll get closer to the same page. 

I fell like I should clarify, before I go further, my issues with "Conversion Disorder" as a label. 
1.  There is still no adequate scientific model explaining how one develops conversion.  What there is seems to be mostly the old Freudian model with a few tweaks.
2.  Most of the information available and most of what regular MDs (as opposed to some/most psychiatrists and psychologists) are taught or have access to tends to be the older Freudian model.
3.  The Freudian model essentially boils down to "the patience has some subconscious problem or conflict that manifests as a physical symptom."  While that may seem fine on the surface, it still has a hell of a lot of baggage in the area of blaming the patient.
4.  A lot of the descriptions of Conversion tend to incorporate broader mental health problems as part of the definition.  And remember, before it was called "Conversion" it was called "hysteria."  Again, more baggage about relative "weakness" and "character."  Some of these descriptions are actually sort of offensive and not exactly "objective" either.  Again, this leads to further issues in the doctor-patient relationship.
5.  There is no distinction made between psychosocial and medical stress.
6.  There is no allowance made for patients who are basically psychologically healthy but experiencing functional (physical) symptoms.
7.  There is no acknowledgment of the recent research showing clear and evident changes visible in SPECT and PET scans of the brains of people suffering FMD (or Conversion) demonstrating that their nervous systems are doing *something* weird.

In a lot of ways, it all boils down to the old mind-body dichotomy problem that I cursed at Descartes for a few weeks ago.
Clearly, more research is needed, but I think the way MDs are taught and taught to think about "psychological" issues needs to change in a big way.

Anyway, back to the neurology appointment.  After we established that I am already on antidepressants and have been for several years and that they have had no noticeable effect on my FMD (sigh) aside from one point when we thought Zoloft may have been causing the damn movements as they started about a month after I started it, we moved on to "um, do you have a therapist you see regularly who you trust?"  Bear in mind, I've been telling neurologists for the past 2 years that I am being seen regularly by psych, but that seems to be easily forgotten.  I guess if I had to see people in only 15 minute spans every 6 weeks or more I wouldn't be able to remember jack shit either.
So, I gave her my therapist's number.  She wandered off to try to get in touch with her, but couldn't.  So, she came back.  We need to work closely with your therapist and maybe your psychiatrist (who I rarely see and then only for med reviews).  Yes, okay, good.  I'm all over this one.
Then I brought up physical therapy.  Yes, good.  Excellent.  Got that squared away.
And then I asked about disability. 

You'd think I asked her to drill a hole in my head.
"Oh, no!  That would be a terrible idea, I just couldn't support that.  The whole idea is to get you functional and back in your program and back to work!"
Blink.  I let the subject change while I took a few deep breaths and came back to it and said, basically:
"Look, I've been out of work for 2 years.  No one can tell me how long it will be before this treatment improves my functionality or even if it definitely will, but the best guesses seem to be in the range of at least 6 months and probably longer.  I don't want disability so I can sit on my ass at home and get paid.  But there are financial concerns here that are becoming increasingly problematic.  And disability isn't just about whatever pittance my tax payments over the years will get me - it will get me access to occupational retraining programs, back to work programs, home business assistance, and a lot of other things."
She still wasn't convinced and told me to ask my psychiatrist.  Sigh.  My therapist things applying for disability, especially since it's not permanent is a perfectly reasonable idea. 
Also, no one seems realize that my goal is NOT to get back to my grad program.  If that is the doctor's measure of success, she's going to be really damn disappointed.  I thought I'd made that clear, but apparently I didn't.  So, I guess I should start blathering at length about teaching/crafting/homesteading as goals during appointments.   "I need to be able to ride a horse and herd alpaca, can you get me to that point, doc?"

This is not the first time I've had this reaction to asking about disability (which I HATE asking about, I might add).  My primary care doc did the same thing (but was perfectly willing to fill out paperwork saying almost exactly the same thing so I could put my loans in forbearance).  I'm starting to think there's some memo going around that says "Oh noes!  Disability will turn your patients into feckless zombies!!!!  Unless they're on the actual verge of death, it will make them worse!  They'll never get well if they get Social Security!!!!"
So, yeah.  We'll see what happens with that one.

Yesterday, I found out that physical therapy has an enormous backlog and not enough therapists.  They can't see me until August 20.  I'm still deciding what to do about that.  I should call my insurance company and see if I can go elsewhere and still have it covered, but I'm sick (heh) of dealing with this crap and doubt I'll do much about it until next week at the earliest.  My alternative plan, which is only half-joking, is to buy the Wii Fit Plus package and do my own damn PT.

In the meantime, I am doing slowly gradated exercise which is supposed to be good for both FMD and Chronic Fatigue Syndrome and won't hurt my arthritis.  Walking for ten minutes every day even if I feel like total, utter ass.  I'm only supposed to do the ten minutes but this being me, of course I did more.  And I am suffering for it.  Never said I wasn't stubborn to the point of stupidity.  So, I clearly need to step back down to the actual ten minutes if I don't want to have to take as many NSAIDs and muscle relaxants (which I don't) or need to sleep for 14 hours.
The idea is to slowly build up stamina and retrain my brain into accepting certain motions and sensations as normal and okay.  This also means that I have to push past certain levels of discomfort either by just sucking it up or if necessary with meds.  But I have to be careful not to overdo it or I'll exhaust myself which sort of defeats the whole purpose. 
Early on, I am not enjoying this so much.  The walks themselves have been fine until the very end, when I start to feel sick to my stomach and dizzy.  Then within about an hour my whole back goes stiff and hurty.  And I've been wanting/needing to sleep 14 or more hours.  But this will make me functional, right?  :P

Clarity and Confusion or Rene Descartes, You F-ing Bastard

I had my big fancy consulation with the big fancy movement disorder specialist at Rush today.  Everyone was very nice, etc. etc.
The verdict is that there is no sign of a neurological disease or damage.  Rather I have what is variously termed a Functional Movement Disorder, Psychogenic Movement Disorder, or Conversion Disorder.  I am choosing to use the term Functional Movement Disorder (FMD) for reasons that are probably clear to many of you or will become clear as I explain further.  (Incidentally, I have in the past few hours found the website linked to the most useful and informative of the available resources.)

According to the doctor at Rush and most other sources regardless of the name they use, this is a disorder triggered in part by stress in the sense of biological or physiological stress as well as psychosocial factors and probably other predisposing factors.  Patients may or may not have co-existing psychological problems like depression or anxiety.  It is not something we do to ourselves or that we can consciously control.  It is not a personal weakness or character flaw.  It's not something I could necessarily prevented or that is in any way my fault.  (If it sounds like I'm trying to convince myself as much as explain things, congratulations, you win a virtual cookie.)

As an explanation of what is going on, probably the best comes from the website I linked above.  If you think in terms of a computer malfunctioning you usually think of either hardware problems or software problems.  Hardware problems in a neurological sense would be things like MS or Parkinson's or head trauma.  You can see them and detect them with tests in the same way that you can often see computer hardware problems visually or detect them with diagnostics.  Software problems can be more tricky.  You can pop open a computer case and look all you like, but if the software is the problem, you aren't going to see jack shit.  My problem and the problem of others diagnosed with FMD is more of a software problem.  Somewhere my brain and nervous system are sending messed up signals that make me walk funny and my torso do weird things, etc.  To take the metaphor a bit further, I think someone tried to install Microsoft Vista in me.

This stuff is fairly straightforward.  Well, not really, but we'll pretend it is.  I'm willing to run with it as a working theory.  I accept that there are no clear signs of "organic" illness.  The abnormalities in my MRIs can be explained by age, smoking, and migraines.  My movement symptoms don't look like those seen with autoimmune disorders.  My cognitive and fatigue and pain issues can be explained via a combination of Chronic Fatigue Syndrome, Undifferentiated Connective Tissue Disease, Hashimoto's thyroiditis, sleep apnea, etc., or by the FMD itself, though given how long the fatigue has been an issue (at least a decade, probably longer) and the positive labs on the other stuff, I'm not inclined to attribute all the fatigue issues to FMD.

I know in the past, as longer term readers or people rummaging in the archives will recall, I have been vocal about having major issues with a diagnosis of somatoform or conversion disorders and variations thereof.  I will admit, I am still a bit skeptical.  Maybe that's not the proper term.  I'm frustrated by the lack of understanding about the disorder, the seeming inability for medicine as a discipline to get a handle on it even to the point of agreeing on terminology and definitions, let alone treatment.  There is ongoing debate, tied to deeper issues of philosophy and theory of mind, etc., about whether this is "psychological" or "neurological" or both and what that means.  Thus my anger at good old Rene and his stupid ass mind-body dichotomy baggage we're stuck with. 

The doctor at Rush feels that it is not merely or purely psychological.  My symptoms are no less real for not being caused by something like MS.  Recent imaging studies have shown abnormal patterns of brain activation in patients diagnosed with FMD.  Coming to accept that this may be the result of a combination of lower-level illness, undefined predisposing factors, and the immense psychosocial stress I was under in the months and years before and during the development of the various symptoms is not an instant cure.

The Rush doctor explained it as an alteration of brain patterns, one that could become permanent, but one that could also, hopefully, be re-patterned back to something approaching normal.  Apparently a primary, successful approach is therapy (already doing it) and relaxation techniques (also already doing it) and self-hypnosis (that could have highly entertaining potential - any bets on whether I can convince myself to cluck like a chicken on cue?)  According to him the best results in reversal tend to be in the first 5 years since onset.  If we date my onset to 2007/8, which is a reasonable assumption, then hopefully we have caught things in time.

Here is where things begin to get tricky, complicated by the confusion over terms, over diagnostic categories (neurology or psych?), the lack of research, the lack of clear understanding of causes, etc.  The Rush doctor sounded as though he were confident that treatment would be successful.  The sources I've been looking at (all reliable medical stuff, not just random blogs) suggest it isn't that simple.  It's a long, challenging process.  Many people have recurrences.  Some have symptoms that never resolve.

So, I find myself still in a bit of limbo in regard to what I can expect for the future.  Obviously, things won't change drastically in the immediate future.  The one thing that does seem clear is that treatment is a gradual process often with stops and starts and even the occasional regression.  I am hopeful though.  And it is an immense relief to have a name even if it does have a whole lot of baggage associated with how we as a society regard mind-body relations and mental or psychological illness, etc., etc.

I am also somewhat conflicted, though less so as the day has gone on.  For the past two years I have identified as chronically ill and disabled and for a while I thought that identity had just been pulled away.  I suppose this demonstrates just how preoccupied with the movement disorder stuff I have been in that I sort of forgot or discounted the other chronic problems I have going on, problems that are not likely to spontaneously resolve and that will continue to have a major impact on my life.

There is also the issue of psychosocial stress and it's role in all of this.  Some of you know the history there.  I was in a highly competitive, highly stressful graduate program.  On top of that, my first adviser left the university under less than fabulous circumstances just as I was getting ready to take comprehensive exams and propose a dissertation.  I wound up losing about a year of time with rescheduling and other fiddling.  I then got involved with another project.  The first season went wonderfully and I was prepared to work on the materials as part of a dissertation.  The second season was, simply put, an utter disaster from a personal standpoint. It's probably best I not go into details but the two months in the field and several months after our return were among the very worst in my life.  There is no doubt in my mind that this contributed greatly to the development of my FMD.  And so now I'm trying very hard not to get furious about how I was treated and the stupid nonsense that went on not just because it sucked but because, from a certain point of view, it robbed me of 2 years of my life, made me fear my sanity, had me wondering if I had only a few years to live, and well, yeah.  Obviously, there's nothing to be gained by apportioning blame. I do have a right to be angry, but it's something I'm going to have to get past.  I'm sure it will make things even more complicated, but that's how it is.


Now we're mostly looking toward the future.  I'm really hoping I'll be able to drive again or even ride a motorcycle.  I would like to be able to work outside the home if I want to.  I'd like think more about a teaching certificate or a library science degree.  It's highly unlikely I will complete a PhD, especially not at Chicago.  There is fairly good evidence that repeated exposure to stress can cause relapses or exacerbate FMD.  Even if it didn't, I think I've had enough.  I love Egyptology, but I love feeling good about myself and relatively healthy and sane a lot more.  If I could wind up teaching history and anthropology as an adjunct at some community college I'd be perfectly happy.  And the Etsy/Artfire shop is still a possibility if I can get my butt in gear with production.  :P

I still have questions about how long we can anticipate this taking and whether applying for Social Security benefits is something we should consider.  I haven't been able to work for 2 years.  This diagnosis doesn't mean I suddenly will be able to and treatment is likely to take some time.  And having at least some of the income the taxes I paid entitles me to would alleviate some of the psychosocial stress I'm under.  It would also make it easier for me to access things like occupational therapy and job re-training or placement.

This isn't the end of the journey by any means, but at least it's a new waypoint and we'll get some new scenery (hopefully).  I'm not exactly grateful for all that's happened in the past few years, but there have been some wonderful things that came of it.  I learned to appreciate simpler things a lot more.  How absolutely wonderful Tom is has been reinforced time and again.  I had the chance to learn to craft with crochet and knitting and now spinning and sewing and print-making.  I've made some wonderful, fabulous, funny, wise friends I would never have made otherwise.  And there's been lots of quality time with Oreo.

The especially good news in all of this is that we aren't tied to Chicago for my treatment.  That puts us a little bit closer to the dream of the homestead.  And that makes me so happy I get tears in my eyes.

Neuro News

I finally received in the mail today approval for a visit to the movement disorder specialist at Rush.  Yay!  I called to make the appointment and was told they needed a consultation request from my doctor.  Booo!

Fortunately, today was my follow-up with my neurologist.  So there is news:
There is a new spot on my brain.  Today was the first day I actually got to see the blasted report and images (the douchetastic duo weren't exactly good about that) without having to crane awkwardly or get pushy .  This new one is on the left toward the front.  Just a little dark spot.  There's a similar one on the right that's been there a while.  Could be from migraines, could be something else.
Cervical spine shows a bit of wear and tear, but nothing terribly out of the ordinary.
With this in mind, we may do a repeat spinal tap in a couple of months to check for signs of MS again.  I am absolutely thrilled by this prospect.
Actually, my current neurologist has a soul and basic human compassion and has already assured me she will give me meds as needed and be sure they use a very small diameter needle this time so hopefully we won't have a repeat of the 12-day long spinal headache, nausea, vomiting, insomnia, crying jags and nightmares.  You know, after I was told a spinal tap was "nothing.  You'll be back up and around the next day, no problem.  Just take some Tylenol and it will be fine."  And then, when we called and told them about spinal headache, etc., etc., "oh, well, just come by the clinic on Monday and we'll try to fit you in."  Because being upright and waiting in a waiting room is such a fun prospect when being prone is pretty much the only way to keep from puking from the spinal headache.  I was totally going to just toddle on over to the medical center.  No need to send me to the ER for a blood patch or meds for the excruciating pain or anything.  (Yeah, still ever so slightly bitter about that.  Jerks.)
In the meantime, she is going to get in touch with the guy at Rush and see what he has to say, try to get me in to see him and we'll all decide whether to do the spinal tap or not.

Also, I'm about ready to mutiny the next time they want me to do the heel-toe balance walk.  It sucks, I can't do it, I weave all over and almost fall and very nearly strain muscles trying to keep from falling.  Kind of tired of it.

The Cognitive Testing Results and Other Things

In short, there are some very mild deficits in functioning.  My attention fluctuates.  My semantic memory is not so great.  My cognition speed has slowed.  There are moderate to severe impairments in my fine motor skills and grip strength.  I suspect the motor skills would be worse if I hadn't taken up knitting and crochet.
I expected most of that.  The attention issue makes sense of what I was thinking of as memory problems - if my attention is not steady or as good as it should be on occasion, then obviously I won't encode memory properly at times. It also helps explain my sort of sensory overload in crowded conditions and why I can't really multi-task anymore.  The cognitive slowing also makes sense - it takes me longer to do things/comprehend things.  I get there in the end, it just takes a bit longer.
In most areas I was "average" which, for me, may indicate some deficits but, as we don't have a full testing range available from prior to my illness, we have to sort of guess.  I'm trying not to worry about it too much.
My verbal IQ is still quite high, which is reassuring.  It makes the semantic impairment a little more frustrating - constructing what I think to be a nicely flowing sentence with carefully chosen words only to then hit a word that I cannot think of/recall is irritating.  I dislike being reduced to saying "that thingie over there" on a regular basis.  :P

Regarding the somatoform stuff:
I do test very high for anxiety related to somatic concerns.  Very high.  Higher than I expected, but I suppose maybe we shouldn't be surprised.  Even though I know that what's going on isn't deadly or all that dangerous (at least not in the immediate sense) it is scary.  But, the neuropsych people think that this isn't uncomplicated somatoform or conversion disorder.  It's far more complicated than that.  Instead, it's clear that stress and anxiety play a role in my symptoms and that, in turn, my symptoms play a role in my stress and anxiety.  (Take that, Descartes)  I already knew this and, in fact, had pointed it out.  I feel worse physically when I feel bad emotionally.  So, stuff is not "all in my head" nor am I "crazy."  Nor can my symptoms be entirely explained by psychological issues.  I now feel comfortable in telling anyone who says otherwise that they can suck it.  It's also probably worth noting that I took all these tests just a few days before I was due to find out the results of my Huntington's Disease test, so, yeah, I would guess that unless I had been in a coma I would have had some high anxiety levels.

Overall, they feel that some of the attention and cognitive slowing may be due to my anxiety, but they feel that it's more due to a combination of autoimmune disorders, the minor white matter lesions evident in my MRIs, anxiety, and sleep disorders.

So, the plan is to work more on managing stress and anxiety in therapy, which is something we've already been working on.  I have already been compensating for the attention issues and cognitive slowing by trying to plan out tasks and have everything for a task together in one place before I get started.  Sometimes easier said than done.

As a broader plan, we'll see what the new neurologist has to say when I see her again in January.  If she's seeming to take a view of somatoform disorder and the test results as "it's a purely psychological issue" she will be fired.
If she has a more nuanced view after seeing the full report, then we'll see where we go from there.  I think I want to be re-evaluated for multiple sclerosis.  Even if it means another spinal tap.  (Sob.)
I also want to see if we can find someone who specializes in autoimmune related neurological problems.
We are also going to look into a referral to an occupational therapist so that I can be evaluated for driving ability.  This is based on the recommendation of the neuropsych people - the cognitive slowing, motor control, and attention issues make me want more data before I attempt to drive again.

With my psych team, we may re-consider trying one of the medications for ADD/ADHD.  I've been very hesitant to do this because I've become extremely sensitive to caffeine in the past few years with it increasing tremors and involuntary movements, my heart rate is typically very high, and I had a bad experience with Provigil.  So, trying another stimulant is something I'm a bit wary about.  However, if I can try it in a  carefully controlled situation I think it might be worth it.

In other news, my rheumatology appointment went fairly well.  My pulmonary functions tests show borderline mild neuromuscular weakness.  Yet another "minor" test oddity to add to the group.  They are starting me on Plaquenil to see if it helps with some of my symptoms.  It's also a malaria drug.  After the OMG teh malarias scare in 2005 it seems like we've come full circle.  I have high hopes for this one helping with my fatigue and pain.

The latest news

I saw my neurologist yesterday.  My mom is also in town.  These things are actually related.
Though I chose not to publicize it via the blog at the time, they ran a genetic test for Huntington's Disease.  Though there is absolutely no family history of anything even vaguely resembling it, it was something that needed to be eliminated as a possibility.
I was, understandably, terrified at first.  So, I yelled for my mommy.  And she came running.  Yay for good mommies.
Over the course of the 3 weeks we had to wait for results, after the initial shock wore off, I was fairly calm - the possibility of HD was scary, but is was also incredibly, incredibly remote.
As I expected, the test came back negative.  I will not be turning into a hot bisexual doctor on House or turning into a really awesome folk singer.

The other news, however, is that the very, very preliminary results of my cognitive testing suggest the possibility of a somatoform disorder because I am "concerned about my body and health."  I immediately pointed out that I would think it would be natural for me to be concerned about my body and health given that it doesn't freakin' work properly at the moment.  Anyway, they want me to seriously consider the possibility.  I am less than pleased by this.
One, I considered the possibility 18 months ago when I first started having the major movement issues - I was depressed, I was freaked out over horribleness at work and school, I didn't want to return to that situation.  I wondered if my brain was trying to find a way out for me that didn't require me to throw up my hands and say "I quit."  While I suppose it is still possible that that is precisely what happened, it doesn't explain why I've had major, increasing issues with fatigue over the course of a decade or why I was having balance problems starting in 2006.
Two, I have been being seen in psych for over a year, partly because of my concerns about a somatoform disorder.  I came right out and asked about it and stated my fear that I was, in some way, doing this to myself, however unconsciously.  They didn't seem to think so.  I've been seen there regularly by a therapist and semi-regularly by a psychiatrist.
Three, I would think that having removed myself from the incredibly stressful situation and improved my mental health would have helped the situation.  If anything, while my mental health is remarkably improved, my physical health is the same or slightly worse.  Unfortunately, there is very little evidence based medicine to demonstrate what causes somatoform disorders or how to effectively treat them.  And, frankly, the minute someone brings up Freud I mostly want to slap them.  Or say "he also thought Akhenaten was Moses, so I don't think I'm going to take him seriously, thanks..."

The limited reading I've done about somatoform disorders also suggests that patients diagnosed with it are often really, really freaked out about their health.  I'm not so much freaked out.  I was when the movement stuff first started happening.  Once I figured out that it was just uncomfortable as hell but didn't herald a full seizure or something else that qualified as an emergency, I just find them really damn annoying.  Until they're under control I have trouble walking places and doing things with my hands and there is no way I'll get behind the wheel of a car but I really don't think those things count as "panic" but rather as "common sense."
I am vigilant, but who wouldn't be in my situation?  I don't think I'm hyper vigilant.  I take note of symptoms daily to try to track patterns.  I rarely even call my doctors between appointments  - if something new/weird happens, I tend to adopt a wait and see approach.
I will be totally honest, too - I'm not comfortable with a somatoform disorder diagnosis because I am afraid of the stigma often associated with it.  While some doctors and ordinary people are very understanding and recognize that this isn't a deliberate thing done by the patient to themselves, many, many others are not.  I don't want to be written off as having a purely psychological issue.  I really don't want that to become a major issue as I go through life if other medical problems occur - I don't want to have to convince people to run tests or actually *believe* me because they see "somatoform disorder" in my notes and immediately decide that it's "all in my head."

In any case, I have a meeting to discuss the full results of the cognitive testing in about 10 days.  Hopefully by that time they will have had a more extensive review of the test and my records, and we will have more clarity.
I also managed to talk my way into more diagnostic tests from neurology, including an EMG later today, so we'll see if that shows anything.

Monday's Great Medical Adventure

So.  Monday.  I had a pulmonary function test.  And a neurology appointment with the new doctor.
Had trouble sleeping Sunday night and couldn't manage to sleep in Monday morning so I felt like crap.  Then my stomach decided to get in on the act and I spent most of the morning running back and forth to the bathroom and trying every method I know to get my stomach to quit being queasy.  Seriously.  Sipped water.  Took some Pepto.  Ate a ginger chew.  Ate something else, just in case it was because I was really hungry but didn't realize it.  Took more Pepto.  More water.  Finally gave in and went for the big gun - a single diphenhydramine (Benadryl) since it works as an anti-emetic in addition to its various other properties and is closely related to the active ingredient in a lot of motion-sickness meds.

Perhaps not surprisingly, mid-way through the pulmonary testing I barfed.  It was awesome.  Courtesy of the PeptoBismal tablets I'd taken and the anti-nausea liquid (essentially a syrup) I had also taken it was bright freakin' pink.  I made it to the trashcan in the room, thank goodness.  I still shudder to think how awful it would have been if I'd ralphed all over the mouthpiece.  I also managed to nail the edges of my pants, my shoes and my hair.
Yeah.
Anyway, I had, up to the point I projectile vomited Barbie's Malibu Dream Corvette paint, felt increasingly like I was having a panic attack.  Shaky, broke out in a sweat, got really dizzy, thought I might pass out, etc.    I'm guessing a combination of fatigue, existing stomach ick, anxiety about the upcoming neurology appointment (gee, why on earth would I be anxious about neurologists?) and hyperventilating on command is what did it.  Fortunately Tom was there to help clean me up and make me feel better and not make too much fun of me for barfing on my shoes.
I get to finish it next week (the pulmonary test, hopefully not the barfing).  Yay.

So.  On to the new neurologist.  She's awesome.  She talked to us.  Like we were human and have mostly functional brains.  She believed me when I told her about my symptoms.  There was no uncomfortable cross-examination.  There was no "well, but you're not doing that now" as though that somehow means that I never do that.  She paid attention when we talked.  She asked sensible questions and explained what she was doing. She noted that I've had to quit school and can't work or drive.  She immediately went and got a colleague to consult with regarding my symptoms and to have a look at me.  I didn't have to prompt her.   It was amazing.  So much of the stress of being sick has been caught up in that my previous neurologists (aka the Douchetastic Duo) behaved as though they either thought I was lying or that what I was saying just didn't matter.

I don't know if people realize how insidiously devastating it can be to have the people who are supposed to be helping you seem (and I say seem because, to be as fair as possible, I don't know for certain that the Douchetastic Duo didn't believe me, though that certainly seemed to be the case early on and I think it colored every later appointment) to doubt you, especially if you already have an unfortunate past history of being treated as though you were "malingering" or simply weak.  You start to doubt everything.  You doubt if your symptoms are really real, if you are as sick as you think you are.  You wonder if you're just lazy or cowardly.  You wonder if it's all in your head.  You treat every appointment as a battle to be geared up for.  You look at your symptoms and try to track them and document them as best as possible, to martial evidence, to anticipate questions and doubts so that you can answer them and then second guess yourself and worry that if you seem too prepared, too knowledgeable then that will itself give them more evidence that you're simply a "hypochondriac" or  "a hysterical woman" or  simply"crazy." And after you repeat to yourself over and over that this is real, this is how things are, then you have to deal with the doubt and the fear that the doctors you are supposed to trust, the people who are supposed to be taking care of you aren't to be trusted.   Aren't really looking for answers.  Don't really care.  And then you have to worry that eventually everyone around you will decide "oh, the experts didn't find anything.  You can't really be sick, then.  Suck it up and get on with life."  It's awful.  It's one of the most horrible things in the world.

But, things are looking up, I think.  I have a lot of hope invested in this new doctor, that she will be someone we can work with, who will be of help and some comfort.  Things are still unclear and frightening and uncertain.  But I think that at least more of that insidious doubt will leave me and make it easier to cope with daily life.

We are running some more tests and we will see her again next month.

In the meantime, I seem to be in another cycle of intestinal distress along with a return of genuine insomnia as opposed to simple (hah!) delayed sleep phase disorder.  Joy.  This may mean some upcoming appointments get rescheduled because, strangely, I'm not at my best when I've only had a few hours of sleep and constantly feel as though one or both ends is going to explode.

Despite all of that, though, I remain immensely grateful to have Tom with me to help bear all this nonsense.  And our friends to help us.  And Oreo to be, well, Oreo.

Progress?

So, today's neurology appointment was rather anticlimactic.  They were running behind (as usual) and I saw the senior attending doctor first.  As per usual he asked, as he has numerous times during EVERY FREAKIN' VISIT if there is anyone else in my family with similar symptoms.  And I answered as I have EVERY TIME "no."
If I ever see him again and he asks again I'm going to invent a sadly departed Great Aunt Matilda who had the exact same symptoms as me.  And when they ask me how she died I'm going to tell them:  "She strangled her neurologists with her IV tube.  Unfortunately, that also cut off her life-saving medicine, but she died with a smile on her face."
Anyway, I said I wanted to see one of their colleagues, preferable someone who specializes in movement disorders.  Shockingly, I did not get the "but why!?!?!" response but instead got an "oh, okay, that's fine."  (Insert image of me doing an Oreo head-tilt here)

At some point there was also a question as to why there weren't cognitive test results and I explained that despite my nagging about it via multiple emails, the examining doctor hadn't gotten around to arranging the appointment.  So they're supposed to be setting that up.  Again.  We'll see.

Then we discussed my freezing episode from a few weeks ago.  Apparently, "I was standing up trying to walk and my legs refused to work for 1-2 minutes" was insufficient description.  So, Tom kindly stood up and demonstrated my shorter freezing episodes.  I had no idea that I wave my forearms around like a spastic T-Rex when this happens.  I am also no longer laboring under the misperception that I am at all graceful.

Then doctor #1 wandered off.  For like an hour.  We finally caught him in the hallway to ask if we were supposed to have left.  Apparently no, the examining doctor still needed to, you know, examine me.  So he finally wandered in.  And totally blew my mind by saying, that, yeah, we should see the movement disorder doctor because they hadn't been able to figure anything out and that really wasn't good.  Then he asked if I was really sure I couldn't go back to school.  And I, as calmly as possible, said:
"Well, no.  There is absolutely no way, physically, I could at all manage to participate in or run a dig.  Not happening.  Nor, really, am I up to researching and writing a dissertation right now.  I can't focus for long periods of time and I have trouble pulling things together.  I think that I might be able to manage pulling together lectures for a course, but I really don't think I'm up to original research.  And there is no way I can hold down a job outside the house right now."
So, he said that that just wasn't okay and wasn't acceptable.  And I said I wasn't exactly thrilled about it either, but that's the way things are and I've come to accept it.
Anyway, he's going to consult with the movement disorder doctor to bring her up to date and we'll see what happens from there.

The thing is, the junior doctor (the second one) is a very nice guy.  He just seems sort of clueless and lost.  And his supervisor (the attending/first guy) is kind of a jerk.  He's patronizing, he avoids or outright refuses to answer questions, and he really seems to have no empathy.  Hopefully, I won't have to deal with either of them extensively again and the new doctor will be an improvement.  And maybe we'll make some progress toward figuring out what the problem is.

At this point, my expectations and desires are not exactly sky high.  I'm sure some people will regard this as overly pessimistic or negative, but they can, quite frankly, suck my metaphorical balls, as they haven't lived my life or dealt with this crap like I have.  The truth is I don’t think it likely I’ll regain my health entirely. If they can get me back to a point where I have the energy work as an adjunct part time or hold some other sort of part-time job, especially if they can get me back to a point being comfortable driving  or with enough energy to manage public transit in Chicago 2-3 days a week, I will be overjoyed (and slightly surprised). Hell, even if I can get the energy to get a successful Etsy shop up and running I'd be happy. Or, failing that, I need to know if I can or should apply for disability, preferably with at least a chance that they won't laugh themselves sick before denying me at every appeal.  Life is expensive.  Mostly, I just want to know what’s wrong and see if we can stop it or slow it down. I want to know if I can have kids or adopt or if I need to start getting my affairs in order (whatever the hell that means) or if I’m likely to be a crotchety old woman with a wheelchair with a shotgun rack on it. That’s what I want.  (Also, I'd like a pony, but I don't think neurology can really help me with that)

Today was also a reminder of how real this is.  I was awake at 5 AM because my damn CPAP was gurgling because condensation had built up in the tube.  I got up at 5:30.  I showered and ate and got dressed and left the apartment a little after 10 to walk barely half a block to catch the bus to the hospital.  I went to my first appointment.  I walked to lunch across campus - maybe 3 blocks.  Walked back for my neurology appointment.  Walked 2 blocks back across campus to camp out in Tom's office waiting for him to get off work so we could ride the bus home together.  Walked a block or so to catch the bus and then the half block home.  By 1 PM I was in an annoying amount of pain and more than ready for a nap, by 3 I was actively complaining, by 5 I was squirming and now I'm ready to take an extra dose of ibuprofen and rub myself down with as much BenGay as I can stand.  My vision is blurry.  My hands are slightly numb, my toes tingle.  My ass hurts (seriously, and I already applied BenGay there). My shoulders hurt, my upper arms hurt.  For some damn reason my armpits hurt! I feel like I have about five tightly kinked knots in each thigh.  And, of course, as usual I walk like a drunken sailor with two termite infested peg-legs.  And walking takes effort now.  It's not a simple, mindless thing anymore - I have to think about it, plan my route, make sure my legs are doing what they're supposed to be doing.  It's taken an effort to write this and I have the sinking sensation tomorrow is going to be an especially bad day for brain fog.  I'm missing or forgetting more words than usual and started stammering a bit starting about mid-afternoon.  The only reason I haven't gone to bed already is that I know at the moment I'm in too much pain to fall asleep easily and that the first few minutes of lying down while my back unkinks or whatever the hell it does is going to be excruciating.
I can manage that once or twice a week every 6 weeks.  I would be a quivering mass of sobbing menthol-scented jelly after 2 or 3 days in a row, let alone 5, all the time.
The thing is though, much as it sucks, and I'll be damned if I'll pretend that it doesn't suck, I'm not that unhappy.  I have a husband who loves me and takes care of me and does chicken dances for neurologists and rubs BenGay on my butt and friends who laugh at my good humored (really, it is intended to be good humored) bitching, and a little dog who comes and cuddles on my lap and dances for joy when I can get up and play with him.  And I have books and yarn (not enough, though, there's never enough yarn) and fabric to play with when I can.  But I would like to not have to wonder and worry quite so much anymore.

Progress of some variety

Today was medical appointment day again. I managed to catch the bus to get to the appointment (yay, me!).

I love my rheumatologist - she's nice, she's smart, she answers questions and is thorough. Her new attending guy is awesome too. So, today's appointment was long, but good. They are trying everything they can to follow up on and test because neurology has so patently dropped the ball. And it's also very clear that I have some autoimmune ick going on - that's what's wrong with my thyroid. I have Hashimoto's thyroiditis. Unfortunately, it does not come with cool ninja powers or a samurai sword or anything awesome like that. It just means my immune system has decided attacking my thyroid hormones is a good idea.

Also, apparently it's not normal for most people's skin to get a weird sort of mottled purple-red appearance when sort of cool. Didn't know that. :P And apparently it's weird that my finger tips flex inward slightly instead of being straight.

It also seems like the bright spots on my brain in the MRIs are probably related to whatever the autoimmune disorder is. At the moment, we aren't really certain and it may be some time before we're sure. They are fairly certain that there is an autoimmune problem beyond/in addition to the Hashimoto's.

Anyway, more blood tests, a chest x-ray, and I have a pulmonary exam in December. Whee.

No treatment at the moment because a) we're still not sure what's going on; b) the rheumatologists don't like random treatment just to see; c) the treatment of choice would be steroids which they'd rather not do unless it's really necessary. I agree completely with this.

On the neurology front: their strep theory seems highly unlikely given the test results (which they haven't bothered to tell me, but rheumatology did). They still haven't arranged my cognitive testing, despite regular prodding from me. I see them again in October. I'm asking to be referred to someone else. I'm just tired of dealing with them. They don't answer questions, are rather frightening clueless at times, utterly fail at communication, have made no progress, and seem to have no idea how to proceed. Hopefully that will go smoothly and not turn into a butt-hurt drama fest.

A final note: I formally withdrew from my PhD candidacy today. This marks the first time in 24 years I have not been enrolled in some fashion, somewhere as a student. After everything else that's happened in the past 18 months or so, it was rather anticlimactic. Or possibly it hasn't really hit me yet. Mostly I'm pissed about not getting the cool floppy velvet hat and not getting to smuggle Oreo into the ceremony (he started grad school with me). And thinking that, in retrospect, maybe I should have bothered walking for my MA instead of just having a week of celebratory sleep.

I think I have a cold

My throat has been sore for two days, my nose is a bit stuffy, I have a slight cough, and I feel like crap. Well, more like crap than usual. However, it is also raining, which also makes me feel more like crap usually, even though I like to watch the rain. It could also be allergies. Or just my usual crap. I think I'll say crap again. Crap. I actually had Saturday evening and most of Sunday free of super bad spasms, but I think that might have been because I was so tired. Things are back to "normal" in that regard - I walk like a duck at the best of times and randomly bow or hip-check.

Anyway, I haven't been doing much the past few days. Yesterday we got the last of the stuff out of the old apartment. I also reclaimed all of our "removable" hooks from the old place. Yeah - you know how the little video ad shows the dude pulling down on the tab and the hook coming right off the wall. Lies! I pulled on the tab. It snapped. I managed to pop those bastards off the walls anyway with the help of a screwdriver and a lot of swearing. Some paint came with it, but since the place is supposed to be torn down, I don't think it matters. Soon the surgeons will have their parking lot and not have to walk a block or take a shuttle like the rest of the unwashed masses who work for the hospital. Hurray. So glad to be of service by having to move. Jerks.

Oreo is still getting used to the new place. He tends to follow me around as if he's afraid he might get left behind. Though I think he's also keeping an eye on me - he sat on me Sunday night through a very bad migraine and coaxed me into sitting down and resting earlier that day by being super, extra, ultra sad and pitiful complete with unfurled tail (I thought something was wrong with him, so I quit unpacking and took him to cuddle on the couch, at which point he was fine). Tom gave him his first bath in the new place last night. And we've switched sides in the bed which makes Oreo and Tom much happier. Oreo is very attached to the right side (from the foot) of the bed, which is also where I slept in our first apartment in Chicago. Then we moved and wound up having to switch sides. Only Oreo didn't want to switch sides. And for two years there was a constant Oreo vs. Tom battle of furry wills as Oreo tried to occupy his spot and Tom kept getting in the way. And, as far as Oreo is concerned, he was here well before Tom, whom he tolerates only barely and with much difficulty. Humph. Anyway - things work out better - Tom doesn't constantly have a dog between his knees or ankles, Oreo isn't being smushed or knocked off the bed and I have a foot/leg warmer.

I've been doing a bit of knitting on a pot holder or dishcloth (haven't decided which yet). Not too bad looking for a beginner and fairly easy to do on autopilot. It's also helping me learn how to distinguish stitches. It's nicely portable too.

I have been sprawled on the couch most of today. Very tired, feeling ick. Unpacking can wait. :P

Mostly moved in

Yesterday our awesome, awesome friends helped Tom with the heavy lifting and got just about everything from the old apartment into the new apartment. I did what I could manage - packing and unpacking, some light moving. I also resealed the tile in the bathroom because I don't think it had so much been done before we moved in...

I slept late today, got up and puttered around a bit, but the longer I'm awake the more exhausted and sore I feel, so I'm mostly taking advantage of open wi-fi networks and goofing off. Things are still scattered all over, but I don't really mind.

I really like this new place - it's much bigger. The bedroom is big enough to handle our furniture with room to spare. There are plenty of closets. Even for being in the basement we get a nice amount of light.

Oreo is still a bit confused and gets a little lost. He's still working on figuring out whether to run to the back door or the front door when he hears someone coming in. We, of course, find this hilarious. He's also very intrigued by people walking past the windows.

The kitchen is going to require some creativity - there is a nice pantry with lots of shelves, but not much cabinet or counter space. I'll figure something out, I'm sure.

Now we're just looking for free furniture on craigslist, mostly for bookshelves to replace the built-ins from the old place, maybe some extra chairs and/or tables. I'm still in the early planning stages as far as curtains go - still leaning toward very light muslin (airy AND cheap!), but not sure exactly what to do with it - pretty trim, stamping, painting, or what...

Posting will probably be a bit intermittent as we get settled, but hopefully I'll get some good photos to show off, especially as we get things situated.

They (Not) Seein' Me Roll, I Hatin'

Neurologists again today. No rollator because "they (the insurance company) will want to know a diagnosis and I don't have one. I can't put down MS, because that will stay with you forever and you don't want that."

I also don't want my shoulders and arms to hurt all the time and I'd like it if my hips hurt less when I do things like, oh, WALK, but hey, whatever. So, I'm sticking with my trusty old cane for the time being.

Today they actually bothered to spin the "Random Possible Diagnosis" wheel, however and came up with....

(ding, ding, ding)

Rheumatic Fever

Yes, that's right ladies and gentlemen, despite other tests showing no evidence of a streptococcal infection, though I might have had strep throat in Sudan in January of 2008, they have decided to run a second, more sensitive test looking for strep.

They're mainly running at this from the pain and movement disorder angle - you might be able to call my movement stuff "chorea." Maybe. Most of the other symptoms for rheumatic fever are extremely non-specific and kind of subjective.

Anyway, we'll see what this round of blood work shows.

Anyway, rheumatic fever typically affects children and is fairly rare if the initial infection is treated with antibiotics. I had a metric butt-load of antibiotics shoved down my throat in Sudan, but I guess it's possible that I had strep. Or maybe I had strep at some point in the past and have either forgotten or never had it treated. Who knows?

It's not clear to me if treatment will solve my problems. Nor is it clear if an episode of rheumatic fever (it recurs) typically lasts this long.

Anyway, we'll see.

They're also sending me for neuropsychiatric cognitive testing. Not sure when exactly. Not sure exactly what it entails either. I will be interested to see if I show cognitive deficits. I also kind of wonder what having above normal intelligence to start with does to the cognitive tests. Should be moderately interesting.

Oh and for today's bonus round: The intake nurse asked me if I was listening to music because my trunk movement/jerks were so bad at some points today that I was pretty much constantly jerking almost to a beat while sitting in the chair. Let me remind you all that this was the NEUROLOGY intake nurse! Am I really the only one with this problem?

Anyway, I'd just like to say that I think I might hold the record for old-timey diseases I've almost been diagnosed with since I first started having major issues with fatigue and aches back in 2005:

- malaria

- tuberculosis (mmm, consumption)

- rheumatic fever

Old-Timey Diseases I still need for my "collection":

- female hysteria (ok, not really, someone would get stabbed for this BS)

- yellow fever (does it count that I've been vaccinated?)

- "a touch of river blindness" (long story...)

- leprosy

- plague

- scurvy

Busy, busy again

Lots of phone calls and emails today looking for an apartment and getting my cell phone number ported to new service. Bahhhh!

Recuperating

I'm recuperating after a long but enjoyable week-end with visitors. We had a lovely time at the Lincoln Park Zoo on Friday. My husband lovingly pushed me through the entire zoo and to Watertower Place on Michigan Avenue in a wheelchair so that I could join in on the outing. He swears it didn't tire him out and wasn't too much trouble. It certainly made the day far more possible for me, though I was still very tired and very sore by the end of it. The wheelchair does open up some more possibilities for extended outings.

Saturday I had to sleep in, fortunately this wasn't too much of a problem. We went to the beach in the afternoon which I enjoyed a great deal - the cool water and buoyancy are very soothing.

At some point on Thursday, knitting (at least stockinette) finally clicked for me and I have a nice start on some fingerless gloves.

I am, unfortunately, still very stiff and sore and achy from being out and about so much combined with rather stupid goofing off with wheeling myself in the wheelchair. However, I think a few days of rest will do me good.

I also have over 1000 items in my Google Reader to go through, so at least I won't be bored.