Monday, February 28, 2011

Inhale. Exhale. Repeat.

These days, I must remind myself to breathe. To inhale and exhale.

I inhale well. I am excellent at taking in the chilly almost-spring air deep into my lungs, which seems to clarify so much more than I expect it to. I can stand still and almost feel human when I am out in the snow with just my little pup. It makes me feel as if maybe, just maybe, getting lost in the woods and never returning would be unfortunate, or at least inconvenient. I am so great at inhaling that sometimes I inhale quite rapidly, and repeatedly, but it seems to lack the intended effect, for I feel dizzier than ever.

I'm not very good at exhaling. I hold my breath during times of exertion, physical or otherwise. When I feel ohso out of control, I try my best to control my breathing. I don't always execute it well, though, for impeding exhalation goes against everything that my brain is built for - everything, except for what I am conscious of. It always seems like a smart idea to stop everything, if only for a second. Except it's never only for a second. I wait with bated breath for something to change. Without oxygen, though, a second feels like an eternity. It is difficult to be observant to change when one is trying desperately to stop one's body from doing what it is meant to do.

I should be taking slow, deep breaths.

Inhale. Exhale. Repeat.

But as my body is repeating, so is my mind. It is repeating all of the things that I am trying to hold back. All of the thoughts that are incorrect and unhealthy and disordered. Apparently, taking over subconscious acts such as breathing actually makes my subconscious grouchy and less willing to help me out with this whole keep calm and carry on thing. Sigh.

Sighing is one type of exhale that I am really good at. It is a sign of defeat. It emotes sadness and disappointment or, on a good day, simply exhaustion. I cannot remember the last time I sighed from relief. That would require being relieved. I wish I could be relieved of all of.. this ..just for a little while. Body, mind, and spirit.

I used to be spirited. That's another thing that I have to retrieve from the depths of these illnesses.

As soon as I catch my breath.
Friday, February 25, 2011

Reading your own X-Rays? Yup. There's an app for that.

It's time for another show-and-tell. This time, it's about my progress on slowing the progression of my possible Hyper Mobility Syndrome/Ehlers Danlos Syndrome. Yes, progress on slowing progress. That's right.

In English: putting, and keeping, my joints in their places in order to:
  • immediately - decrease my clumsiness & help me sleep better
  • near future - decrease my pain & fatigue
  • far future - decrease my chances of early arthritis & need for braces and other aids to help me do everyday things
I'm not sure whether these goals are achievable or not, but they seem reasonable to me, and I do have to start somewhere.  I'm enlisting professional help, while I have some health insurance, in order to see if these goals can be reached.

Here are a few of my recent x-rays, which show that this isn't all in my head.

Ohai, fused vertebrae!

Ohai, misaligned ribs!
 I'm going to the chiropractor twice a week for 5 or 6 weeks, and then I'll decrease the frequency of the sessions. The chiropractor is one of those new-fangled ones with all sorts of devices and ways to make adjustments as relaxing and as simple as possible for me. That's good news, because these newer methods make for a gentler visit and keeps my joints happy. So far, my body is adjusting really easily (probably due to the extra elasticity, ha!) and my neck is holding in place fairly well. My ribs and hips don't like to stay in place, but they feel fantastic for the first hour or so after the adjustment. Once they go back into their normal routine, I can feel that it's more difficult to walk and that I'm clumsier and not as strong.

I'm also have a physio appointment booked for two weeks from now. I'm going to get an assessment and see what they recommend. For now, though, it seems odd: they only work on one joint or problem at a time. Um.. sure.. that's one way to do it.. I explained that every joint in my body is hypermobile and that most partially dislocate every day, which causes me pain, stiffness, blah blah, but they asked me to pick one joint to work on. So.. left shoulder it is. They'll have fun with that one. I partially dislocate it whenever I move it, so it'll be a good test of the physio's chops to see if she can make sense of it.

In an attempt to prove that this isn't all in my head, I asked my chiro for temporary solutions for shoulder instability. He suggested seeing if a physio recommended taping my shoulder into place, like athletes do to prevent injuries.  I jumped the gun, found a good physio website, and followed the instructions to tape my shoulder into a stable position with sports tape.

The taping looks awful, because it's remarkably difficult to tape your own shoulder, I've discovered, even if your other arm is super bendy and can extend in odd angles. I got my partner to retape my shoulder the next day, and his tape job was much neater than mine.

During those two days, my left shoulder felt fantastic! My neck wasn't as tight or sore, and my left shoulder didn't feel anywhere near as stiff and tired as my right shoulder did. It improved my posture a bit, and I don't think it limited my range of motion much more than is the normal range for people. I couldn't reach in ways that I usually do, but I was able to sit in a chair for much longer without becoming uncomfortable, and I knit for hours longer than I'm usually able to. (I was listening to an audio book for school while knitting. It wasn't a completely frivolous use of my time!) I also slept really well, and was actually very comfortable in bed - which is rare for me. I usually toss and turn, changing my position every half hour or so. Therefore, I was a quick convert to sports taping, and was eager to see a physiotherapist to learn taping techniques and to get official medical approval.

So, last night: I had been wearing the tape for about 8 hours, and my shoulder had felt a little itchy during the day, but it wasn't enough to concern me, and certainly wasn't enough to outweigh the benefits that the tape afforded me. That was, until I took off the tape off and was greeted with this:

Eek! I was super itchy, but instead of scratching it, I put some lovely moisturizer on it. The moisturizer I use is also used for hospital patients with sensitive skin - like those undergoing chemo. So, it's good stuff and didn't cause the irritation. I still wasn't too concerned because, well, I had just removed the tape and I figured that a certain amount of itching was normal. I'd let it breathe for the night and retape it in the morning, even though I knew that sleeping without it taped up would mean that I would have a tricky time getting comfy in bed. But, I had to follow the cautions and not keep the tape on for an extended period of time (the tape packaging suggested 12h as a max).

Regardless, I woke up this morning to this:

So, no more sports taping for me, I guess. At least not unless the physio suggests kinesio tape, which a friend recommends as the least likely to give EDSers a tape rash, or, perhaps, just a minimal rash if your other EDS symptoms are mild, like mine are.

Good thing I only bought four rolls of the tape. Sigh.
Tuesday, February 22, 2011

I got eggs today, as well as a job.

Actually, I got the job first, and then I picked up eggs on the way home, as I told myself that I could afford such a frivolous purchase now that I am gainfully employed.

I have worked at the establishment before, but in a different capacity. I've been a library assistant in their library, and I also worked for three years as the library coordinator for a different organization under the same green roof.

I will get as many hours as I'm able to handle, (more, even, perhaps) until the end of April, thanks to a grant through the provincial government. They've gotta use the money or they lose it, and I fit the very specific criteria to fulfill the requirements for the funding. Hurrah!

I am going to be a house warden. I will do regular cleaning and set up rooms in the house for events, take money and give receipts for events that are booked, and make sure that nobody is setting anything on fire or scratching the hardwood floors. In my downtime, I can do homework or pet my dog because the pup is allowed to come to work with me! And she can walk to work with me because it's only a 15 minute walk from my house (or one stop on the bus route).
It is pretty much the best job ever. Yep.

I have a rather comfortable level of general unease about it. I am feeling as if the world has slowed down, and that I am walking in pace with it. Perhaps this odd feeling is peace, or contentment, or some twisted form of accomplishment. I am uncertain. I just know that it rocks, and that it is infinitely better than the panic I felt earlier -- I was sure that this was some elaborate scheme to make me look foolish and to prey on my sympathies.

Silly, I know.

So, lesson learned. I should do stuff even if it scares me, because it may enable me to purchase eggs.

Oh - and I didn't know that convenience stores in Ontario regularly carry eggs. Where have I been for the last decade? I have been in a hole where one does not purchase eggs from a convenience store, it would seem. Eggs are purchased, and they are neither cracked nor rotten. Good work, convenience store! Good work, Cara. Good work all around.
Sunday, February 20, 2011

Better late than never..?

Hey, interwebs,

Sorry to leave you hanging there. I've been busy with the same ol' stuff, and I dont' feel much like talking right now. I spent my evening at the radio station, and last night I was over to a friend's place for dinner, so I'm pretty talked out.

I'll make up for it soon, I promise. I'll have x-rays up and a debriefing of my appointments with my chiropractor.

Thrilling, I know.

Stay tuned.
Sunday, February 6, 2011

Down and Out

Why didn't I post this week?

Because Depression got the better of me. I skipped some classes (some were canceled, though!) because I reasoned that the class would be better off without me, or because I would not have anything intelligent to say and would start crying. Those things sound silly now, but they made perfect sense at the time. Sigh.

Yes, I was taking my meds. I even picked up some more vitamins and added a few supplements. Here's a list, because I'm in the process of making lists for an assignment, and I'm all listy and whatnot. Yep.

  • Prozac for depression
  • Wellbutrin for depression
  • Calcium, Magnesium, and Vitamin D for healthy bones and tissues
  • B12 because I'm not getting enough in my diet
  • (I should also take Iron, but I'm gonna see if I need it on my next doc visit)
  • Buspar for anxiety
  • Levothyroxine for my under active thyroid
  • Septra for chronic UTIs
  • Valerian root, catnip, and lemon balm as sleep aids
  • St John's wort for depression (need to check with doc about this too)
So, I was taking my meds, even though they make me feel like I'm old and falling apart, and also that I am not doing a good enough job on my own. I also dislike having a pharmacy in my nightstand, but it's gotta be done.

Despite these chemical assistants, I was really down this week. I noticed more of my joints partially dislocating, and I've been feeling sore due to a nasty fall on the ice. I sprained my right wrist, and possibly my right ankle. They're not too bad, probably because they're used to hyperextending, but they're not very happy either.

I also had to take my pets to the vet. They even had a sleepover, since the weather report called for a snowstorm and my vet's office is in the rural outskirts of town. I spent money that I don't have to get them all polished up and given their vaccines and have some minor day surgery to improve their quality of life -- and I was a mess being at home without them. I was even a mess without Kitten, who, although presently snuggling me in my bed, which is forbidden, is usually largely ignored by me and loved from a distance due to my annoying feline allergy. Prrrow.

I'm seeing the meds doc this week, so I will ask him about a few things and mention that I'm still clinging to my bed rather than even venturing out into the living room, or, higher power forbid, outside! I bet it's just general malaise from trying to use my muscles and joints as they were designed to be used, rather than how my bendy body has decided to use them.

I'll try to be more cheerful this week. I get to talk to a loan agent at the bank, which will aid in the money situation, and I also am studying topics that I enjoy in my classes. Maybe it'll even warm up enough to take the pup on a walk, or a frolic in the park! I'd enjoy that.

Here's to a better week, readers, and I hope that your spirits are lifted as well.

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