Monday, January 31, 2011

Erosions or WTF!


Yes, I've gotten them during this past year.

I had none when I had my ENTIRE body Xrayed in Dec. 2009 when we were trying to figure out what was going on BECAUSE I COULDN'T MOVE IN THE MORNINGS AND GOT STIFF EVERYTIME I SAT STILL FOR MORE THAN A FEW SECONDS.

I got diagnosed super quickly, in Jan. 2010, and was put on a biologic and mass dose of methotrexate right away, but, as it turns out, THAT WASN'T ENOUGH TO STOP THE EROSIONS!!!!!

I'm more sad and disappointed than angry, despite the CAPITAL LETTERS SCREAMING AT YOU.

I think I'm too tired and resigned at this point to be angry and care to that extent, if that makes sense.

I just don't know what to do.

I met a friend and her mother after for coffee (turned into lunch) and was kind of upset, but fine.

Then I got home and started researching stuff online, got sick reading about side effects and lay down on my comfy couch, under my puffy down duvet when a friend I hadn't heard from in a while called. She started to say, "Hi, how are you, don't have much time, just calling about some work," and I promptly started crying.

Nice!!! rhuematologist, who was totally disappointed with the friggin' Xrays, is recommending Actemra.

Pros: an infusion every 4 weeks instead of giving myself a shot every week.
Cons: having to go for an infusion every month instead of being able to give myself a shot in the comfort of my own home.

There's more of course, but, hey, the side effects listed for every drug are scary freaky if you really read the fine print closely enough. (And, no, I'm not being stupid, or entirely facetious, I get the seriousness of things like gastrointestinal perforation just fine, thanks, but it seems to me it's six of one, half a dozen of the other when it comes down to it).

Now I just want to confront the parking dodo who gave me a ticket for parking on the residential city street for longer than an hour. Because I went to my doctor, got bad news, had to go for a chest Xray, then to another doctor to make an appointment for the now once-again-needed TB scratch test, then met a friend to get a hug and have lunch to cheer me up and, no, I didn't make it back to my car in the under 1-hour time frame, during which, apparently, you're supposed to be able to do all your necessary business, which, if I may say so, is practically impossible under the best of circumstances.


P.S. The picture? That's my body spinning out of control...

Monday, January 24, 2011

Dry Eyes

My eyes are dry.

They were dry last winter. Not so bad during the summer.

Dry again now.

I don't have forced air heating, and thank god for that, or it would be horrible. As it is, I take off my contacts as soon as I get home and use eye drops repeatedly throughout the evening and when I wake up in the night. I also use them at work during the day, particularly in the afternoon.

When I asked my rheumatologist about it last year, she said "sicca" something. Or something "sicca."

I know it's dry eyes related to the rheumatoid arthritis diagnosis because I didn't have dry eyes before and they're sooooooo dry. Is it actually Sjögren's Syndrome? Are my other mucous membranes drier than they were before? Could be. Not so dry as my eyes. And even those aren't so dry that I can't wear my contact lenses. Woohoo! I hate wearing my glasses. I have horrible eyesight and they're heavy and have really thick lenses and I can't just buy any old frames, and in winter glasses fog all up when it's cold out and you go inside and, well, I could just go on, but the long and the short of it is, I just hate wearing glasses. So there.

Dry eyes. That's what I have.

Add it to the list.

Sunday, January 16, 2011

Getting Back Into Shape

I've been feeling better over the last two weeks.


My shoulder isn't hurting as much as it has been, and that is such a relief.

It makes a huge difference not to be in so much pain.

And my arm is more mobile.

Also yay!

It occurred to me at some point that if surgeons will eventually anesthetize patients with frozen shoulders to manipulate the joint, I could, in essence, do the same thing myself. Not the anesthetization – obviously! – but the manipulation. So instead of just the Codman's exercises the physiotherapist has had me doing since the beginning of this whole crazy saga, I've been using the weight of my own body while lying down to put pressure on the joint to stretch the adhesions holding it in place.

Warning: not sure if this is medically advisable or not, but it's been working for me. I can now move the arm more than before, which is so fabulous and has made such a difference in my day-to-day life.

I walked up 4 flights of stairs yesterday and went to the gym today since I was feeling so chipper.

Sad, sad state of affairs. The gym that is – or rather my physical state of being.

I lost some 6 pounds during this stupid shoulder affair, I think simply because of the pain. I actually was eating quite a lot of comfort food, in my opinion, just to make myself feel better but must have been eating less overall, and I also lost muscle mass, too, which weighs more than other stuff, because I wasn't working out at all. Moving your body hurts when your shoulder hurts as much as mine did. It's amazing to realize how much your shoulder affects the way your whole body moves as a unit, everything from raising a spoon to your mouth to getting up out of a chair. So I had been moving, really, as little as possible. Not good for a body. Bodies are meant to move.

Which is why I say sad.

Overall, I look pathetic compared to a year ago. Yes, a year ago I was all stiff and sore and felt like crap because of the onset of RA, but my body was, muscle-wise, in much better shape.

So, now, like so many people at the start of a new year, it's back to the drawing board from a fitness perspective.

But at least I feel more up to it.

And that's super wonderful!

Yay, yay, yay!!!!!

Friday, January 7, 2011

2010 in Review


Yeah, not a good year.

24 medical appointments, all specifically related to RA, so that doesn't count any of the multitude for my shoulder, except the two specifically for the injections, since they were with my rheumatologist... :) And doesn't count the usual regular doctor, dentist, eye doctor visits. It's a good thing I'm only working part time right now. Cause this first year of RA has been a part-time job in and of itself.

$24,399.87 in drug costs, all related to RA alone, most of which were covered by insurance, for which I am sooooo grateful.

48 visits to the pharmacy to pick up those RA drugs. Now that I'm on what the insurance company has determined are "maintenance" doses, I won't have to go back so often because they'll let me get more at a time. Yay! Well, at least until my coverage runs out and the government starts picking up the tab. Who knows what their requirements are. I haven't looked into that yet. One step at a time.

On other fronts: a friend with cancer. Friends out of jobs. Not good.

The bright spots: a wonderful new client, with lovely new people and interesting new challenges that are stretching me in good ways and making me feel really positive about things and life in general! And true friends, people who ask me how I'm doing and actually mean it, people who check up on me, who take the time to see how I am and who just hang out. And especially the crazy friends and the nice friends – you know who you are!

So there you go: a year of mine, and some of what happened in it.

Some good, some bad. Which is pretty much what life is all about.

I have a feeling this coming year will be better. Partly because I think it will.

:) L

P.S. Sorry I haven't been posting regularly. To be honest, I've felt sick just thinking about being sick. So I've just tried not to think about it, and that's meant not posting. I hope that's changed now. New year, new leaf, onwards and upwards, and all that!