Two unrelated but awesome things

Image by Stephen Rees via Flickr
Edit: Formatting on the quotes got super weird. Trying to fix that:

The first is this amazing article by Toni Bernhard, author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers (also amazing, by the way). Toni has a gift for explaining the common lived experience of people with chronic illness and their caretakers in a way that is clear, empathetic, and elegant without drifting too far into the "oh woe is me" or the "I will tough everything out and pretend everything is just fine." Definitely worth the read.
A few quotes in particular resonated with me:

Yes, it's okay to get sick or be in acute pain due to an injury or a surgical procedure, but then we're supposed to get better. Everyone expected that of me and I expected that of myself. For years, I felt embarrassed that I wasn't living up to the cultural norm

And:

Many of us believe that we've let our family and friends down.

And:

The dilemma of how to "present" to the world. Should we spruce ourselves up and risk people erroneously thinking we can participate fully in whatever they're doing?  

Also:

We're often misjudged by others if they see us looking nice or being active in any way. Healthy people tend to assume it's all or nothing: we're either sick or we're not; we're either in pain or we're not. And so, if they see us doing anything "normal," they assume we're 100% well. This has happened to me many times. Someone will see me at an espresso place with a friend and assume I've recovered, unaware that I came from the bed and will collapse on it after the visit. People aren't deliberately being insensitive. They just don't know.

And:

Caregivers face their own set of stressors. They must live with the frustration of not being able to make their loved ones better. They're suddenly thrown into the role of patient advocate in the medical system, a role for which they have no training or expertise. They often have to take over the running of the household. Caregivers see us at our worst, as we put on a good show for others (for me, this means running on adrenaline), only to collapse when we're in the privacy of our own homes or apartments.

On a lighter note, I enjoy watching jackasses get their comeuppance and boy has that happened with a vengeance with The Bloggess and a particularly clueless PR company (not the one that tried to recruit me to write for a "Mommy Blog" who had obviously not read much of anything here).
I sort of regret not being in Chicago anymore as I would have given serious consideration to dressing up like Beyonce the metal chicken and going to the PR company's offices downtown to tell them "Knock, knock, motherfuckers." Pretty sure that would have been the best bus ride EVAR.

Are You Wishing You Could?

roniAre You Wishing You Could?
I was going through my Google Reader backlog and found this from over a month ago. I liked the idea of a "wish I could" list. Especially since I wonder if actually vocalizing (typolyzing?) some of the wishes might help me find ways to make them happen.

So, I wish I could:
- Take long hikes
- Drive safely
- Bicycle
- Dance, especially take a class
- Go out in the sun without having to be covered in sun protection
- Dig professionally
- work full-time

The Joys of Bureacracy and Confusion

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

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

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

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

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

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

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

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

Reality, "Negativity," and Acceptance - A repost from 2009 in honor of Invisible Disability Awareness Week

This post originally appeared here in April of 2009.  Over a year later, I find I have a lot of the same feelings and experiences and wanted to share this for Invisible Illness Awareness Week



Being or becoming disabled requires a lot of adjustments. Some of these are obvious – changes in lifestyle, in jobs, in relationships, in daily activities. It requires a pretty major mental adjustment, too, one that often isn't obvious, or at least wasn't for me. My illness has been gradual in some ways – increasing fatigue and weakness over the span of years – and quite rapid in others – the onset of movement disorders, major increases in fatigue, etc. At first, I went into this with the idea that my doctors would figure out what the problem was, fix it, or at least figure out a way for me to compensate, and I would go on my merry way. Over the past year, it became pretty clear that that isn't going to happen. Realizing that not only is it extraordinarily unlikely that I'm going to wake up one day and be fine, but that my whole life now needed to change was, to put it mildly, intense. Accepting it was even harder.
Part of the issue is that I think we are taught to approach all sickness as something to be defeated or gotten over. This isn't necessarily a bad thing – there seems to evidence that mindset plays an enormous role in recovery from thing like cancer. A lot of us, and I definitely was (and to an extent, still am) one of these people, are also taught to “walk it off” or “push past it” and to hide or deny our symptoms. Again, this isn't necessarily a bad thing – fear of embarrassment, concern over keeping a job, avoiding making others uncomfortable, etc., are all good reasons to try to hide symptoms or deny that there is a problem. Unfortunately, it can also be very counterproductive.
I finally accepted that I am disabled, am likely to be so for the rest of my life, and that there is a chance my condition may decline a few months ago. I found it enormously liberating. Instead of feeling like my entire life was on hold until I was “well,” of being afraid to undertake new projects, of not knowing what I was going to do next, I could finally start looking ahead. I now plan based on how I feel now, not how I felt a year ago or 5 years ago, or how I wish I felt. That means that I have to set the bar quite a bit lower, but it also means that I have realistic goals and that I'm not constantly frustrated and depressed because I can't do x, y, or z. I've also come to see the silver-lining in getting sick – I've come to appreciate my family and friends, most especially my husband, even more, I'm under far less stress than I was as a graduate student, I'm less likely to feel guilty for spending time on things that I enjoy (I'm still working on this one), I'm more in touch with my creativity. In short, I'm much happier. I'd like to still be able to walk several miles without even breaking a sweat, or work full-out on a research paper for hours on end without getting utterly lost, but I realize that I can't and I've stopped feeling guilty and bad about it. Instead, I try for a few blocks a day and a few easy paragraphs on the blog. I won't go so far as to say the trade was worth it, but it could be much, much worse. The majority of my various doctors and specialists agree that my new mindset is much healthier and better for me and realistic. 
The downside to this can be in relationships with other people. Most of my family and friends also agree that accepting my disability and working forward from it as good things and they've been wonderful about helping me cope. Unfortunately, there are a few people who don't see it that way. Like I discussed a little bit above, I think many people view illness or disability as something to be overcome and/or denied. So, for these people, I think that my acceptance looks like defeat or negativity. Some people have been very direct about saying this and I prefer that, because it's easier to have a discussion and explain how I think acceptance is very different from negativity or defeat. With other people, it can be much harder as it tends to be clear only from their actions or implied in their words that they feel it's negativity. I suspect being unfamiliar with the details of my situation probably contributes as well – on a good day I look like a relatively attractive, healthy young woman who happens to have a cane. Pain doesn't advertise, I've learned to compensate for or hide my tremors unless I'm having a particularly bad day, and my balance problems are also fairly hard for others to notice.   My fairly direct manner may also contribute - if I'm having a bad day, I say so.  If my hands are shaking badly, I say so.  How is anyone going to know that I need help going down those stairs or opening that bottle if I don't say so?  And I tend to crack jokes about it too.  The "negativity reaction"  is something that still bothers me, however, even though I know I probably shouldn't let it.   I'm tempted at times to snap at people "I'm not freakin' negative, you jackass, I'm a realist, and that's different.  Stagger a mile in my shoes!"  Obviously that would be counterproductive.  Instead I fume a bit and then go find something distracting.
I'm sure I'm not the only one with this problem, but I wanted to put it out there for others to see, those with and without disabilities. Obviously, not everyone approaches their health in the same way and what has worked for me may not work for other people, but I think keeping these things in mind can be helpful in basic, everyday interactions for everyone. I hope anyone with any thoughts will feel free to post here if they'd like.

Interesting story from the Trib

Disabled and out of work -- chicagotribune.com

While I'm not as disabled as many of the people featured in the story, I share some of the same issues.  I would like to be able to work.  Unfortunately finding an appropriate job that is also willing to make accommodations seems really challenging.  At the moment, finding a job at all is sufficiently challenging.  Not to mention the fact that I don't know if I can take advantages of some of the social services for the disabled as some are limited only to people eligible for or receiving Social Security disability payments, others require a separate sort of certification and, on top of it all, some of my doctors are hesitant to label me "disabled" as they seem to think that I am "too young" or that doing so will somehow adversely affect my prognosis.
It's immensely frustrating.  Young or not, the fact remains that I have been unable to work for over 18 months.  I have been trying to find a job that I can do from home or that requires little or no travel.  I don't want a handout.  I do want to work but I also don't want to sacrifice my health in order to bring in a paycheck.  Grrrr.
I really, really hope that in the coming years there is more focus on publicizing social and human services for the disabled, educating the public at large about the realities of disability, and educating employers about the actual cost/benefit results of accommodations for disabled workers.
Failing that, if someone would give me a grant for blogging, reading, playing with Oreo, and knitting, that would be awesome. :P

Spreading Love and Awareness

In honor of Invisible Illness Awareness Week The Sick Chick has started a roundup of all us chronically ill peeps who also craft.  Very nice.

I've talked here about how difficult it can be to cope with disability and not just the physical aspects but the social aspects as well.  So I encourage everyone who reads this to take a moment to think about what it's like to live with chronic illness and try to gain some empathy for others.

This Is My Blog: The Gorilla In Your House

This Is My Blog: The Gorilla In Your House

Fabulous analogy for dealing with chronic illness.

Oldest Known Paralyzed Human Discovered : Discovery News

Oldest Known Paralyzed Human Discovered : Discovery News

A very interesting story that demonstrates the vast amount of information that can be obtained just from human remains about not only the individual but also the society they lived in in a broader sense. *If* you know what you're doing, that is. ;)

Long Day

I had a rather long day today, but not much to report really. I'm on day 3 of "Elvis-pelvis" which made walking the mile to visit my husband a bit more of a challenge than usual.
I broke down and rode one of the electric cart/scooter things for the first time ever at Target this evening. It really helped today - very handy little things.

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.

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.

The Cane Bow - DIY cane decoration

As I mentioned yesterday, I have also decided to make a bow to dress up my cane for the event this week.  I considered, and shopped for, a new cane altogether but decided against it for now.  My cane, while not a thing of beauty, is perfectly serviceable, lightweight, and has been improved dramatically by the removal of the branding stickers that were on it when I first received it.  Spending the money on a new cane just didn't seem wise, especially since I would have to order one rather than being able to test it out before buying.

Yesterday evening I picked up three rolls of wired ribbon from Michael's.  This evening, with my husband's help, I sat down to work on creating the bows.  Then I realized neither of us had the faintest clue what we were doing, so I did a quick Google search.  This was particularly helpful, though we didn't follow it very closely, so if you think the final result sucks, don't blame the tutorial authors.  

Making bows was a lot harder than I thought it would be.  My hands are less than happy right now, but I finally got it done.  It's held together with pipe-cleaners and attached to my cane using electrical tape.

Here is the bow prior to attachment, displayed in my stylishly craft-gloved hand:

And here it is after attachment to my cane, with a lovely view of our cluttered living-room and the Roku screen-saver playing on the TV.

Pretty pimpin', eh?

I intend to be the most stylin' cripple around.  :P

Slow Day 2

So, resetting the sleep schedule was a big fat fail.  I set an alarm, I woke up, I got up to take meds.  Then, like an idiot, I got back in bed to read for a while and promptly fell back asleep.  For the rest of the day.  And woke up feeling awful.  Thanks weather.

I also realized that Mother's Day is way closer than I thought, so I've been crocheting a gift for my mommy while watching the US version of The Office on the Roku. (Some really frightening parallels to people I know in that show.  Plus, watching the Pam/Jim romance unfold from the beginning makes me all girly-happy.) I took a break when my hand started to ache to look into different types of therapeutic gloves.  I have some, but they don't really support my fingers and my pinky and ring finger are not happy.  I also have to wear them inside out to keep the seams from rubbing funny.  And my hands get fairly sweaty in them.  Also, they're ugly, which isn't a huge deal, but it would be cool to remedy that.

So, I'm looking into the following:

IMAK  - these have the advantage of being cotton-blend for breathability and they have good finger coverage.  They are a bit pricey, but they seem to get good reviews

"Miracle Gloves"  - Inexpensive, recommended in a Ravelry thread I checked out (still looking in to other suggestions there), adjustable wrists.  They do look a bit thick though, which could be a problem for summer-time.

Handeze - Also a bit pricey, seams might be a problem...

Wii Boxing Gloves - What?  How are these not appropriate?

Isotoner Arthritis Gloves - Seams are on the outside, flesh toned...

Thermoskin - Adjustable wrists, good reviews, grippy exterior fabric, plus they're all space-age looking.  A bit pricey.

Anyone have experience with these?  Other suggestions?  

I hope to make my own eventually, at least for fun fashion accessories.  I especially want to try some cotton fingerless gloves for longer walks in the summer because sweaty hand + cane = suck.

Looking for options here has also reminded me how hard it is to find this sort of thing for some people.  If you think of who most people regard as "typical" arthritis sufferers you probably think of older/elderly people.  While there are notable exceptions, these are also people who may not have computer access and/or who may not be comfortable with finding or ordering products online.  It's horrible that it can be hard (at least in my experience) to find these sorts of products in stores or at least find a selection to choose from.  I got lucky finding mine in a Hobby Lobby.  I've looked elsewhere - in other craft stores, in drugstores, in Target and Walmart and have rarely, if ever, seen similar products.  I can't help but wonder how many people have given up on hobbies that they love because of hand pain who might have found relief using these sorts of gloves but who have no idea that they exist or who simply cannot find them.  If you or friends or relatives have this problem PLEASE consider getting them a pair as a gift, just to try out.  This isn't limited to hands either - there are similar items for other major joints.  

Go away, Elvis!

The past few days have been especially bad on the myoclonus/spasm front, especially today.  I probably overdid some walking/standing, which is sometimes the culprit.  Other times it just happens.

Anyway, the most dramatic of the movement problems, the ones that really sort of scared us when they first started but are now sort of old hat are concentrated around my hips and lower back.  Essentially my body just starts jerking strongly forward and to the left.  This reminds me vaguely of the early days of Elvis and his "dance" or whatever that made adults all over the country fear for the very souls of their children after their exposure to the evil of rock'n'roll.  So, we now call refer to this with some mention of Elvis.  Usually that I'm either possessed by Elvis or that I'm a really crappy Elvis impersonator.  

As I said, today is being especially bad and my hands have been getting more twitchy lately too - making typing a problem.  I'm super achy too - not all that surprising given the movement stuff.  I can sometimes stop it briefly - usually by tightening my abdominal muscles - but it's difficult to keep that up for a long time and sometimes even that doesn't quite work.  Anyway, I spent most of the day curled up in bed with Oreo reading and dozing - thankfully the spasms seem to stop when I'm asleep or nearly so.  I've since relocated to the couch so I can have the heating pad on my ass and lower back (those muscles get quite a workout with the spasms).  

I'm not sure if new stuff is going to get posted today - I figure this post meets my daily goal of posting at least a paragraph.  We'll see.  

Anyway, everybody send good vibes to exorcise Elvis!!!!

The latest health news

I didn't have a chance to go through my RSS feeds today, so I haven't got around to posting any cool stuff yet because I had a neurology appointment today.

The good news is that they're finally taking me seriously after about a year of visits every few months.  

The bad news is that I appear (to them) to be getting a bit worse.  A friend asked if *I* thought I was getting worse, which put things a bit in perspective - I don't think I've gotten that much worse since about December.  We did discover new muscle weakness today though, and I've been particularly twitchy the past week.

Anyway, I gave a bunch of blood for testing today and I have neurophysiological tests and another MRI scheduled for the end of next week.  They're now looking at possible genetic disorders and taking a closer look at my cerebellum.  

Surprisingly (or maybe not), I'm not really freaking out that much.  As I've noted here before, I've pretty much accepted that I'm disabled and likely to be so permanently.  And I've been prepared for the possibility of gradual decline (please let it be REALLY gradual).  The only thing I've been really impatient/worried/frustrated about was figuring out what the problem is.  I'm hoping that we're getting closer to an answer now.  So, everybody keep your fingers crossed!

Mmmm, pain relief (aka NSB from theferriswheels review)

Mmmm, pain relief
Originally uploaded by shoveling_ferret

So, I promised a review of this wonder product once it arrived.
Sally from theferriswheels was wonderful to work with - if she was weirded out by my gushing in happiness over finding this thing, she hid it very well. :) She was wonderful about communication and let me know as soon as she got it in the mail. It arrived on Saturday, but I didn't get around to picking it up until Sunday. That's super fast!
No mess of packaging to waste or have to dispose of - very good! Very nice directions included!
So, I popped it in the microwave and...ahhhhhhhh! Yay! It fits as far up my neck as I want it to, drapes my shoulders nicely, and hits the tense parts very well too! It doesn't stay heated quite as long as I would like, but I suspect that's more to do with our craptastic tiny microwave than with the actual pack. (Also, if you're like me and never clean your microwave, put it on a plate or something when you heat it - you don't want popcorn-butter residue on your happy.)  I love that it stays in place really well too - I can get up and putter around a bit without having to untangle myself from cords or make sure things are unplugged AND I still get my warm relief while I do it.

Overall, I'm very pleased, as I hope you can tell from the photo (I'm also rocking some great camo jammies my Nana bought me last Xmas and having a particularly achy/icky day, so I probably look a bit more sickly than usual). I will definitely be recommending these to friends and family!

(I also love that there's yarn, an amigurumi book, and the upper part of my old-fashioned electric heating pad visible in the photo...)

Reality, "Negativity", and Acceptance

Being or becoming disabled requires a lot of adjustments. Some of these are obvious – changes in lifestyle, in jobs, in relationships, in daily activities. It requires a pretty major mental adjustment, too, one that often isn't obvious, or at least wasn't for me. My illness has been gradual in some ways – increasing fatigue and weakness over the span of years – and quite rapid in others – the onset of movement disorders, major increases in fatigue, etc. At first, I went into this with the idea that my doctors would figure out what the problem was, fix it, or at least figure out a way for me to compensate, and I would go on my merry way. Over the past year, it became pretty clear that that isn't going to happen. Realizing that not only is it extraordinarily unlikely that I'm going to wake up one day and be fine, but that my whole life now needed to change was, to put it mildly, intense. Accepting it was even harder.
Part of the issue is that I think we are taught to approach all sickness as something to be defeated or gotten over. This isn't necessarily a bad thing – there seems to evidence that mindset plays an enormous role in recovery from thing like cancer. A lot of us, and I definitely was (and to an extent, still am) one of these people, are also taught to “walk it off” or “push past it” and to hide or deny our symptoms. Again, this isn't necessarily a bad thing – fear of embarrassment, concern over keeping a job, avoiding making others uncomfortable, etc., are all good reasons to try to hide symptoms or deny that there is a problem. Unfortunately, it can also be very counterproductive.
I finally accepted that I am disabled, am likely to be so for the rest of my life, and that there is a chance my condition may decline a few months ago. I found it enormously liberating. Instead of feeling like my entire life was on hold until I was “well,” of being afraid to undertake new projects, of not knowing what I was going to do next, I could finally start looking ahead. I now plan based on how I feel now, not how I felt a year ago or 5 years ago, or how I wish I felt. That means that I have to set the bar quite a bit lower, but it also means that I have realistic goals and that I'm not constantly frustrated and depressed because I can't do x, y, or z. I've also come to see the silver-lining in getting sick – I've come to appreciate my family and friends, most especially my husband, even more, I'm under far less stress than I was as a graduate student, I'm less likely to feel guilty for spending time on things that I enjoy (I'm still working on this one), I'm more in touch with my creativity. In short, I'm much happier. I'd like to still be able to walk several miles without even breaking a sweat, or work full-out on a research paper for hours on end without getting utterly lost, but I realize that I can't and I've stopped feeling guilty and bad about it. Instead, I try for a few blocks a day and a few easy paragraphs on the blog. I won't go so far as to say the trade was worth it, but it could be much, much worse. The majority of my various doctors and specialists agree that my new mindset is much healthier and better for me and realistic.
The downside to this can be in relationships with other people. Most of my family and friends also agree that accepting my disability and working forward from it as good things and they've been wonderful about helping me cope. Unfortunately, there are a few people who don't see it that way. Like I discussed a little bit above, I think many people view illness or disability as something to be overcome and/or denied. So, for these people, I think that my acceptance looks like defeat or negativity. Some people have been very direct about saying this and I prefer that, because it's easier to have a discussion and explain how I think acceptance is very different from negativity or defeat. With other people, it can be much harder as it tends to be clear only from their actions or implied in their words that they feel it's negativity. I suspect being unfamiliar with the details of my situation probably contributes as well – on a good day I look like a relatively attractive, healthy young woman who happens to have a cane. Pain doesn't advertise, I've learned to compensate for or hide my tremors unless I'm having a particularly bad day, and my balance problems are also fairly hard for others to notice.   My fairly direct manner may also contribute - if I'm having a bad day, I say so.  If my hands are shaking badly, I say so.  How is anyone going to know that I need help going down those stairs or opening that bottle if I don't say so?  And I tend to crack jokes about it too.  The "negativity reaction"  is something that still bothers me, however, even though I know I probably shouldn't let it.   I'm tempted at times to snap at people "I'm not freakin' negative, you jackass, I'm a realist, and that's different.  Stagger a mile in my shoes!"  Obviously that would be counterproductive.  Instead I fume a bit and then go find something distracting.
I'm sure I'm not the only one with this problem, but I wanted to put it out there for others to see, those with and without disabilities. Obviously, not everyone approaches their health in the same way and what has worked for me may not work for other people, but I think keeping these things in mind can be helpful in basic, everyday interactions for everyone. I hope anyone with any thoughts will feel free to post here if they'd like.

Stupid Hands

Today is being an especially bad day for my hands.  My joints are aching pretty badly and I'm getting random shooting pains.  The last 2 fingers on my right hands are twitching randomly (typing is way  exciting).  And both hands are faintly numb/tingly - the best comparison I can come up with is how your hands might feel after driving an older diesel vehicle for an extended time.  My husband says motorcycle handlebars will do the same thing sometimes.  This is annoying as crap, but not really a big deal.

One of the issues I frequently have these days is figuring out whether I should not do something when I'm in pain.  Ordinarily I take pain as a message from my body saying "Hey, stupid, that's bad, quit it." or "Hey, stupid, you've done that too much, take a break."  Now, though, it seems that my brain randomly decides that something hurts like I did way too many lunges, pulled a moderately heavy person to safety over a cliff, dangled from a tall building using only my hands, participated in a hula-hooping marathon, or tried to crash a door open using only my head, even when my activity for the day has consisted of getting out of bed, brushing my teeth,  coaxing Oreo out of bed, and eating some yogurt.  So, I now have to question whether this is really a stop/break situation or a brain-being-a-punk situation.  I tend toward the stop/break more frequently because even if undertaking or continuing a certain activity probably isn't causing damage, it does still HURT.  Unfortunately, that also means that I don't do a lot of things I'd like to do.  I'm slowly learning when to push and when not to, but it's very much trial-and-error.

Anyway, I think I'm going to try (operative word being try) to keep typing to a minimum today to see if that helps (and because I'm sick of fixing typos because my fingers won't go where I want them to). So, I'll probably be light on content again today. I'm debating whether to pick up some crocheting.   I'm sorely tempted to just relax on the couch and read.