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.

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.

Memories...

Five years ago today I had been in Egypt working on a dig for about a month. One of my friends snapped this picture of me. It's one of my very favorites.  We had all decided at one point that this one have to be the author photo for my first book.

Things that have changed:

• I have more hair and more of it is gray
• I don't smoke anymore
• Those pants totally don't fit anymore.
• The friend who took the photo left the field and is now a nurse.
• I've left the field and need a nurse.
• I doubt I'll have a first book.

Things that are the same:

• I still own all three of the shirts I'm wearing and still wear them on occasion.
• I'm still snarky as hell.
• I still occasionally wear bandanas to cover up crazy hair.
• I still love Egypt and want to go back.

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.

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

I managed to sleep last night and get up...THIS MORNING!!!!! (Cheer!!!!) So, I have been busily pulling stuff together for another printing project. I'm afraid details have to wait as it's a gift that I don't want to spoil.

I also managed a few little chores today.

And I walked Oreo by myself. He was very, very sweet - he went slowly down the stairs and tried not to pull on me too hard. And he walked at a nice gentle pace in the parking lot. Very short walk - we stay in the parking lot and the little grassy area when it's just us as I don't want to risk him getting away from me on one of the major streets (just the thought gives me chills).

A friend came by to help me with some design tasks and Oreo was also extra sweet by distributing his cuddling he stretched from my lap in my chair over to put his chin on her knee. Silly, silly dog. He also helped me introduce her to the crack that is Etsy. Yay!

Tomorrow I have my first appointment with the endocrinologist. Should be moderately interesting. :P

My thumb/wrist are still being gimpy and I had to ice them again today after I washed out a rug in the bathtub. Humph.

Also, for some reason I've been having to use my reading glasses today. They barely have any prescription to them at all, but they do seem to be helping. In honor of the occasion, here is a goofy picture courtesy of Photo Booth:

Yet another slow day

I don't know if I wore myself out last week, if this is yet another permutation of whatever the hell is wrong with me, or if it's simply a bad flair of whatever is wrong with me and my thyroid meds haven't kicked in yet or what. Whatever it is, this has been a rough week. I had a migraine spanning Sunday to Tuesday with no more than a few hours pain-free between times. The remainder of the week I've been exhausted - part migraine hang-over, part something else. My pain levels have been up too, though I wasn't too terribly twitchy until today. And my hands are still swollen. Joy.

I've also started getting short of breath really easily again - no idea what that's about. Allergies, perhaps. Seriously, on occasion, just getting dressed has me panting. Anyway, definitely something to bring up the next time I see a medical-type person.

Tom kindly went to the library for me last night to get me some new reading material - First Man in Rome and I, Claudius. Yay! Now if I could just perfect knitting or crocheting while reading...

We've been making our way steadily through the new Doctor Who via Netflix and the Roku. Last night was the first episode of Series 2 - The Christmas Invasion. I giggled through the last part of it quite a lot - I totally want to save the world in my jim-jams. :P

I also played Wii Sports last night for the first time in well over a year. I was thinking maybe a bit of light exercise might make me feel better. While it was fun and I may try to start doing it more regularly, my arm is killing me today. And my age was calculated at 70. Thanks, Wii - I needed that. I would look into Wii Fit, but me + ataxia + balance board = trip to emergency room. Suck.

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.

Ferret van Winkle

I slept for a good 20 hours straight, so probably no posts of great substance today. Well, I did wake up for a few brief moments, but not long enough for actual function.  My hips and knees are killing me, probably because I sleep on my side(s).  So much for re-setting my sleep schedule. Oreo was overjoyed to see me.  I suspect Tom was torturing him again.

Well, at least I didn't stuffocate*

I have an ongoing battle with my CPAP.  It has a built-in humidifier, which is awesome. My problem is getting the setting on the humidifier just right - too little and my nose dries out and I get a headache, too much and water settles in the hose and makes this horrific thunking noise when I breathe, which usually wakes me up.

I recently went up a size in nasal pillows (I swear to Jebus, my nostrils got stretched by the smaller ones) to get a better seal.  So, I figured I would go up a setting on the humidifier because my nose had been dry the past few mornings.  About 5 AM the scary thunking started and woke me up.  So, I turned off the airflow (because it can be a bit loud and annoying if the mask isn't in place) and fumbled around to drain the little bit of water that causes the problem, dropped the humidifier setting back down, put the mask and headgear back on and went back to sleep.

Only I forgot to turn the airflow back on.  Which I didn't notice until several hours later when Tom was getting ready for work.  I only noticed because I said something to Oreo (probably to tell him to quit chewing on himself) and didn't have the weird gasping sound and choking sensation I usually get if I try to talk when the airflow is on.  

I'm guessing this has something to do with why I'm especially tired today.  

*Yes, "stuffocate" - I like made-up ,little-kid-like neologisms.

I have no idea how to feel AKA the neurology follow-up

Today was my neurology follow-up.  If you've been following along, you'll remember that at my last appointment they ordered genetic tests and that when I contacted them for the results, I was told that they were "held."  When I asked what "held" meant, I was told that we would discuss that at my appointment.  So, to summarize, I spent the better part of the past month freaking the hell out.

Turns out "held" actually meant "we decided to cancel the test for now."  After we pointed out that I had been, you know, FREAKING THE HELL OUT the past month wondering about this and how simple it would have been to say "oh, we decided to put that test on hold for now" we did get something resembling an apology.  

So, there are no genetic test results because there was no genetic test.  They decided they wanted to narrow things down a bit more and follow-up a few more leads before ordering an expensive test that could result in major problems for me in the future in relation to future medical insurers.  

Also, my doctors appear to have grown souls or something in the past 6 weeks.  I seriously almost asked if they were pod people.  We were treated like adults with semi-functional brains this time.  My questions were actually, gasp, answered.  There was a genuine dialogue - helped by my tossing medical jargon around.  (Why, yes, I do like words, I collect them.)  They asked both of us how we felt and were coping with this crap.  The resident who sees me promised me that he will do everything he can to get to the bottom of this and that he'll be consulting with his colleagues as much as possible.  He also told me he'll have more time starting in July to do a bit more research.  While I do wish they had been this on top of things months ago, it's nice that it's happening now.  

So, in summary, they get another chance.  As Tom commented - it seems as though they get a little better every time we go in.  Maybe by the end of all this they'll be super-awesome doctors.

On another front, the thyroid tests I had rheumatology run last week had come back.  My thyroid is acting up again.  My TSH levels are up - that means that my thyroid is getting a message to make more thyroid hormone because my body thinks I don't have enough.  I also appear to have some thyroid antibody action going on - which may well explain the elevated TSH - the antibodies could be eating my thyroid hormone thinking they're invaders.  (They're all like "pew pew pew" and then my thyroid hormones are all like "I can't shake him!  He's right on my tail! Arrrghgh!")

Thus, I will be seeing an endocrinologist.  I've wanted to see one for a year, but my GP didn't think it was really necessary.  Sigh.  All of the hypothyroid stuff could be causing or exacerbating my neurological and movement symptoms.  So, until that's clarified, we're waiting on doing a muscle biopsy to see why my thigh muscles are wasting or melting or whatever the hell it is they're doing.  My gut says something else is going on besides just the thyroid stuff, but we'll see.

Anyway, in summary - we don't really know jack.  Still.  I still can't work.  I still feel like crap.  I still seem to be getting worse.  

I do know that the next person who tells me "you're too young for disability" is going to get smacked with my cane.  I don't want to go on disability, but I also can't stay unemployed indefinitely.  I need the help that disability programs can provide to either start up a home business or get hooked up with home-based jobs and I need a bit of help in the meantime.  I worked from the age of 15 onward.  I paid my taxes.  I'm not asking for a free damn handout. Unfortunately, the process of applying is stalled for now as I don't think I'm likely to be approved without a better diagnosis then "hmm, dunno, that's weird."  Not to mention that Social Security has "lost" record of my employment history between 2004 and 2006, thus technically rendering me ineligible for benefits.  So I also have to find our tax returns for those years.  

Hopefully we're getting closer.

Yawn

I woke up early today and couldn't get back to sleep.  Lack of sleep = more pain, so I moved between couch and bed most of the day.  Then fell asleep without my CPAP which led to a killer headache. Ibuprofen is making my stomach hurt.  However, Tom is making me brownies.  Oreo is curled up next to me.  Hopefully brownie and milk will make my tummy feel better.

Trying to decide if watching TV will make me feel better or worse...

Slow Day

I had a rheumatology appointment today.  No news, really.  They tried to access my genetic test results (all part of the same medical center) and couldn't - there was simply a note saying it was "held" and "Dr. (name changed to protect the inconsiderate) will call."  We're not sure if that means he's supposed to call the lab or call me or what.  The rheumatologists think that's weird too.  

I'm so tired of this.  And I've had it so ingrained in me over a lifetime that I'm the one who is unreasonable (even when I'm not) that second-guessing myself is taking a lot out of me. Combine that with the authority society tends to vest in doctors and this is even less fun.

I also regret not having asserted myself from the start.  I thought if I was polite (meek) and quiet and tried not to be a "problem" or "bother" anyone that everything would be fine. Clearly, that isn't necessarily the case.

I hope these sorts of posts will at least help other people who are in situations similar to mine or help them avoid these sorts of situations all together.

Breakdown the First

As some of you may remember, we are currently awaiting results of the genetic testing ordered by my neurologists.  Specifically, an Ataxia panel, which covers various forms of spinocerebellar ataxia and other fun things.  Some of these things could kill me soon-ish, some could result it partial or total paralysis, restriction to a wheelchair, a long slow decline in which I am no longer able to breath on my own or swallow, possible dementia, and a host of other heart-warming symptoms.

The test results are in but are being "held" until I come in in person.  That was initially going to be in July, but after some mild prodding, it got moved up to June.  It's also probably worth mentioning that when I asked at my last appointment what the genetic tests were for, they refused to tell me, even when I asked, "So, what are you looking for with these tests?"  The response was, "oh, don't worry about it, if anything comes back positive, you'll have lots of interesting things to talk about at parties."  Seriously.  Not making this up.  This is not the first time this has happened.  I've let it pass before.  I don't intend to do so again.

Fortunately, I am both literate and not a complete fool and was capable of puzzling out, in a manner that would do Sherlock Holmes himself proud, what it was they were looking for.  In other words, I looked at the lab paperwork they handed to me.  I didn't even have to whip out my large vocabulary or write anything down to look up later.  It said, in plain English - Ataxia Panel.  Clearly, my deductive reasoning skills are to be feared and worshipped.

Also, as I am familiar with the use of both a computer and Google, and have devoted pretty much the last 10 years of my life to learning how to do research, I had already guessed by the range of questions I was being asked that they were getting interested in my cerebellum.  This was confirmed when I cornered the resident who also "cares" for me and asked what was up. Apparently the first MRI they did, when they re-examined it, showed some possible cerebellar atrophy.  Of course, they didn't notice that 10 months ago.  Why that is is something I best not speculate about...

Anyway, this is what I've been coping with since late April and more so the past few weeks since I found out that they won't tell me my results by phone or email.  I've been trying to stay calm and upbeat, and have been reasonably successful, but the toll is starting to tell.  I have more trouble sleeping, even though I'm exhausted.  I've had a few nightmares about being paralyzed and able only to move my eyes or being told I only have a few months to live (highly unlikely, but still...).  I have tried to be optimistic and hope that they simply don't have conclusive results to share or that someone just cocked up the test (if that is the case, I will be highly pissed that they couldn't just tell me that).  But I also catch myself at odd moments trying to make a deal with...I don't know - God, myself, Obi-Wan Kenobi - "just let it be my legs; please not my eyesight; please, don't make me loose my mind; please, as long as I can still read and craft and eat..."

I've managed, for the most part, not to have a crying jag, until last night.  Right after a shower, I just lost it and started blubbering.  Fortunately, Tom seems to have a 6th sense for imminent ferret-crises and he came to comfort me (because he is awesome).  And Oreo overcame his deep-seated fear of the bathroom to join us (because he was lonely in the living room).  The truth is, hard as I'm trying to be brave and not to whine or be morbid or be an attention whore, I'm terrified.  I'm furious - no one should have to sit and wonder about things like this for weeks on end or be treated like an idiotic child by their doctors. What is going to happen? There aren't a hell of a lot of treatment options for ataxia - care is primarily supportive.  I'm afraid of what they're going to tell me and I'm afraid of the inevitable confrontation when I finally tell them how inappropriate I find their behavior.  Smack-talking to the contrary, I usually try to avoid such things.  And partly it's because I am so very angry that I'm worried, because I know that the more "overwrought" I seem, the less seriously I'll be taken (if that's possible).  

I am at least happy to have found, in my research, that there are specialists here who deal with Ataxia and they are very highly regarded by their patients.  And I do have a wonderful support system.  I just have to get through one more week.

Shopping IS Therapy, Dammit

Today I slept most of the day due to the exhaustion of the most recent skirmish in the mouse wars.  I had actually set an alarm for 11 AM, figuring that would give me more than enough sleep.  I woke up, was still really stiff and hurty, and so decided to read and stretch a bit in bed before getting up.  The next thing I knew, Oreo was barking and wagging his tail in my face because Tom was home from work.  Sigh...

Anyway, I had been wanting some fusible interfacing for some projects I want to work on and Tom had wanted to go to a Home Depot to poke around, so we set off.

I scored my fusible interfacing (at a discount, because the instruction sheet had left marks on the interfacing) drooled over fabric, grabbed some canvas tape, and a bias tape maker.  Serious fabric drooling.  I should just get over my cheapness in not being willing to pay $8/yard for pretty quilting cottons, but then again, if I did that, we'd be even more poor than we are and be buried in fat quarters or single yards fabric useful only for making bags and pillows and stuff. Mmm, bags...

Ahem.

Anyway, we also dropped by a Best Buy, because the stupid vermin had chewed through the cord on the motion sensor for the Wii.  Shows you how much Wii we've been playing.  We also (after much wandering and annoyance) discovered that Lego Indiana Jones has finally dropped in price.  Sweet!!!!  As it seems to also be good for my motor skills, all the better!

Then we went to Home Depot and wandered around the nurseries.  We now have baby sweet basil, mint, rosemary, lavender, and Italian parsley nestled happily in a trough planter and smelling delicious.  The aloe has been replanted in the pseudo-Predynastic pot.  And our seedlings of oregano, curly parsley, and lavender seem to be doing well despite early depredations by the vermin.  The papyrus plant seems to be doing okay as well.

I am very excited by our little garden - I've never done much with plants before, so I'm having fun pestering Tom with questions.  I'm also looking for either  some better options or tricks in iCal for reminders so I will remember watering and other household chores (this has become a major problem for me).  And I'm looking forward to cooking with fresh herbs, figuring out good drying methods, and making sachets.  

Therefore, I am in an extra good mood this evening, despite the lateness of this post. Tomorrow I get to go for a haircut, which will make life even better as I'm currently getting uncomfortably close to a mullet in the back (I cannot stand hair on my neck anymore).   Better, a friend is taking me, thus sparing Tom from having to hang around a girly salon for an hour. He gets to stay home and play Wii.  :P

Fog

The past week seems to have been especially "foggy" for me - I've been needing/wanting to sleep much more than usual, my brains aren't working quite as well - lots more forgetting, total attention lapses, loss of focus, and general duhhhh-ness.  My pain levels have been a bit higher too.  And I've been disinclined to do much besides stretch out in bed or on the couch and read.  I'm not really depressed, though a bit disgusted with my inertia, just, I guess exhausted.  I certainly am finding it harder to motivate myself to do much.  Hopefully I'll snap out of it soon.  

Interestingly, Oreo has been far cuddlier with me lately as well.  I don't know if he feels a bit ick, if he senses that I don't feel too hot, or if it's just coincidence.  

Bleh

I think anxiety on a few fronts is starting to take its toll on me - I'm pretty tired and weak again today and slept a good 12 hours last night. My brain is fairly foggy as well today.   I did enjoy a walk at Promontory Point with the husband and the Oreo.  The weather has finally warmed up and, true to form, I contrarily find it too warm.    Oreo totally failed yet another are you a dog or an alien creature test.  We saw a cottontail in a patch of clover.  Tried to point it out, Oreo was oblivious.  We got within 10 feet of the bunny, who seemed rather unimpressed with the potential threat Oreo presented, and then Oreo finally saw the bunny.  He made a half-hearted lunge at the rabbit.  The rabbit ran off to some rocks, but didn't even bother ducking into a burrow or otherwise hiding.  Oreo gave up after running about 3 feet.  Yeah.  Didn't even bother to bark.

He did, however, talk smack/attempt to murder to a larger spaniel of some type, a retriever mix, and a Bichon Friese.  And, once the Bichon's owner had taken her out of sight, he totally worked the Oreo-strut - the proud little pimp walk he pulls when he's "run off intruders."

I do finally have photos to post of my latest projects.  I'll get around to those later today or maybe tomorrow.  I'm mostly inclined to curl up on the couch and watch Waiting for God or the new Doctor Who or something similar.   (Yes, I am still loving Netflix + Roku)  Hurray for ambition!

The advantages of being mildly annoying

As I mentioned a few days ago, my neurologists are playing keep-away with my test results. They were also going to make me wait until July to even have a chance at catching the metaphorical ball.  Being rather displeased with this state of affairs, I started emailing my attending neurologist at least once every weekday asking about an expedited appointment.  It seems to have worked.  I have an appointment in about 3 weeks.  Still longer than I'd like, but I suppose it will do.  Three weeks of stewing, wondering what's wrong and why they couldn't tell me in an email is better than 8 weeks.  Hypothetically, it's nothing that's likely to kill me within either 3 or 8 weeks, right?

Some of my readers may be wondering why I didn't call instead of email.  Well, you see, he can't remember his voice-mail code.  So, he can't retrieve voice-mails.  I have no explanation for why he hasn't gotten in touch with IT or whoever to get a new code.  I have suspicions that he's already done that so many times that they've told him to get lost, but these are only suspicions. The only other numbers I have are the main clinic number, and I'd rather not antagonize the receptionists and clerks (yet), and his pager number which, no matter how pissed off I am, I'm not going to abuse with non-emergencies.

I suspect there are going to be regular entries from me psyching myself up for the "here are the many ways in which I have found your behavior to be unacceptable" conversation coming up in June.  

No pictures

And I failed to take photographs again today.  My back and legs are extra grumpy and I was extra tired and spent way more time in bed than usual today.  And then went grocery shopping.  My husband continued his record of always managing to inadvertently pick the worst possible cart.  I, yet again, refused the siren call of the riding cart things.  However, we stocked up on groceries, including the makings for a few new recipes to try - I will try to post how they turn out.  And I stocked up on Ben and Jerry's Cinnamon Buns ice cream which, I'm reasonably certain, contains cocaine or heroin as I inevitably eat the entire pint and still want more.  It has replaced Dublin Mudslide in my affections.  

I also totally forgot to get photos of the brain slug before it was given away.  However, the slug is GREATLY appreciated by its new owner and I have begged for in situ photos.  

Not Cool!!!!

So, last night I emailed about my test results and have pretty much gotten the run-around.  My doc told me about the myopathy, but I knew that already from the EMG doctor.  My genetic tests have been "held."  My neurologist told me to schedule a follow-up ASAP.  So, I did.  ASAP is July. I emailed him back and pointed out - dude, July.  And asked what "held" meant.  

"Held," for those of you wondering, means, "I'll tell you when you come in for your appointment."  He also said he'll try to expedite my appointment.  He damn well better.  I have to figure refusing to tell me unless I'm there in person is probably not happy, wonderful, you-have-rainbows-and-unicorns-coming-out-of-your-ass type news.  I am not sitting here for two months wondering what the hell is going on.  We played that game after the spinal tap last year and I AM NOT doing it again.

There was no mention of the MRI results.  Also, still no superpowers.