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.

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.

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.  

This entry is useless without pics

Despite having been fairly productive on the craft front the past week, I can't post pictures today.  It's been nasty and rainy and dark all day, so decent photos aren't happening.  Maybe tomorrow.  I will, however, tantalize you all by telling you that I painted a flower-pot in imitation of Predynastic Egyptian white cross-lined ware.  And I finished making a brain slug for a friend.  It's being presented this evening, and I hope to get a photo.  I also finished my gift for my mom for Mother's Day.  Yes, I know it was last week.  Still have to take a picture of it and get it in the mail.   So, with luck, there will be some photos posted this weekend.

I also have to decide which fiber project to start next: 

• Amigurumi for some friends (not saying what exactly as some of them read this and I'll be all grumpy if I ruin the surprise)
  
• Amigurumi of my parents for their 30th anniversary next month
• Amigurumi with Egyptian themes for some professors of mine
• My very first knitting project.  I have to actually decide WHAT to make.  I'm not that inclined to make a scarf, I know it's the typical thing, but it seems sort of...bleh.  Maybe a hat?  Suggestions are welcome.  My preference is for something that isn't a huge undertaking at the moment and, preferably, doesn't require a large quantity of yarn (I'm running out of storage space, despite concerted attempts to use up my stash)

And I have the following things I want/need to do:

• Design and carve some lino blocks for fabric printing/stamping
• Sew some tea towels and table linens
• Sew the pajamas and dress I have fabric and patterns for that have been hanging around since January
• Sew a (or possibly multiple) hook and needle cases
• Sew a bag or purse of some kind with the sweet fat quarters I have
• Start playing with watercolor painting, if only for the hilarity of how craptastic my paintings will be

And, I have some research to do in the next few weeks to see if I'm going to climb back into the academic saddle.  I suspect there will be chafing.

"Natural" is not a synonym for "Safer"

I love the Beauty Brains blog - they take a lot of the nonsense used in advertising for a variety of beauty products and explore the truth or falsehood behind it.  

The natural/organic/paraben free/etc. issue is one that particularly annoys me.  I will confess to having bought into it for a while.  Then I started really reading product labels and did a bit of my own research (in more than once place, I might add) and discovered that, for the most part, it's nonsense.  I have no problem with people choosing to purchase so-called "natural" products.  It's just the claim that they are intrinsically better that gets to me.  The fact is, the products often use nearly identical formulations to "non-natural" products, that the terms "natural" and "organic" don't have a real meaning or an official definition by law in the US, and that frequently the quantity of a particular ingredient or group of "natural" ingredients in a product is so small as to be virtually negligible.  Even claims about packaging and environmental impact or animal testing can be a bit...weasely.  These are also things that are unregulated or only loosely regulated.    

"Natural" ingredients can be every bit as dangerous, and sometimes more so, than "artificial" ingredients - people can be every bit as allergic to one as the other.  Certain essential oils can increase photosensitivity in skin.  As the Beauty Brains article linked to below mentions, a few studies have shown a potential link between tea tree and lavender oils and growth of breast tissue in boys.  

Does this mean you shouldn't use them?  Good lord, no!  It simply means that you should do a bit of digging, not buy into the hype of ANY product, and choose what works for you.

For example, I tend to have a mild to moderate allergic reaction to some artificial fragrance formulations, ranging from a migraine headache to hives.  Because of this, I usually often better luck with products labeled "natural" because they frequently seem to use a different fragrance base or formulation, but I also have very good luck with products labeled "sensitive" or "fragrance free".  It isn't always the case though and I have to be cautious.  

And, of course, things like mercury, arsenic, uranium, ragweed, poison ivy, venom, and poop are all "natural" but I don't think you want them in your personal care products.   

More Natural Cosmetic Nonsense | The Beauty Brains

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.

An Easter food musing

So, I'm lounging on the couch watching Good Eats on Food Network - I assume they're running Easter-associated food shows leading up to the weekend.  Tonight's episodes have been ham (I missed most of that one) and lamb (on as I type this).  Both very tasty things - lamb is really under-appreciated in the US in my opinion and pig is damn tasty.  :)

Something that usually occurs to me and then speedily flees my brain after the Easter season is why ham and lamb tend to be the traditional foods for Easter lunch or dinner (at least in the US, as far as I know).  

It seems strange to me that one option is something that Christ (not getting into historicity here, just going on basic "accepted" knowledge) wouldn't have eaten as a good Jew (pork) and the other is a creature associated with one of the many titles given to Christ ("Lamb of God").  I'm probably way over analyzing, but it just like either disrespecting the cultural origins of Christ or eating him (not going into Catholic theology here - I spent enough years being catechized in private school), which I would think would be creepy for at least some flavors of Christianity.  :)

I can guess at reasons why for lamb - the association with Passover, spring being lambing season, etc.

Pork I can postulate as having been historically easier to raise than, say, cattle, and ham as a traditional preserved food, thus providing a source of meat even in the early spring, probably even before lambing.

Anyway, I just find it anthropologically interesting - not enough to devote a large amount of research, but enough to comment on and make random postulations based on whatever is floating around in my head after 10 years of higher education.  :)

Any comments?  Similar musings?

Today's (and possibly the week's) theme

see more Lolcats and funny pictures

Yeah.  Don't know if it's the weather (there's a freakin' blizzard, never mind that it's April) or my body deciding to mess with me again/still/more.  Either way, I've been in gradually increasing pain and stiffness most of the day, including parts that haven't hurt in months.  And I haven't been particularly or unusually active, so that's not it.  I think I'll be slathering myself in BenGay before bed.  Oooh, the romance...  

On the bright side, I found a nice re-fillable day-planner thing today to use instead of my increasingly ratty and not very durable 5x7 spiral notebooks.  

I got some paint and sculpey to play with to make amigurumi accessories (I have yet to make said amigurumi, but we'll get to that).

And I ate an almost-pint of coffee ice-cream from the container.  

I wonder if I can turn menthol-scented crocheted items into a niche market?