Erosions or WTF!

Erosions.

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!!!

Anyhow...my 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.

COLDASS ICICLEHEART!!!

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

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.

Getting Back Into Shape

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

Yay!

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!!!!!

2010 in Review

2010.

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!

The Pain Is Getting Better (?)

Wanted to report in. Had another shoulder injection last Tuesday, this time into the side of my shoulder. My rheumatologist decided on that approach, which is called a subacromial bursa injection, since the last injection didn't seem to do anything. She also used a different corticosteroid this time, Kenalog (Triamcinolone Acetonide), for the same reason.

She warned me this injection would hurt more, and that she'd be giving me a shot first to freeze the area. I was like, whatever, bring it on! I mean, I'd been having quite a bit of pain anyway, and the whole point of the injection was to help.

I won't kid you, though, it did hurt to a certain extent. Did it kill? Of course not. Whenever people talk about those pain scales of 1 to 10, I think of someone on train tracks getting their legs run over. I think that would pretty much be a 10. Kind of puts things in perspective, don't you think?

So the shot? Well, compared to that, I couldn't even really say a 1-2, but, yeah, it hurt.

Although, as I said to my doctor, compared to the pain I've been feeling, particularly for 1 two-week period I suffered through, it didn't in any way compare, so, again, whatever!

My very nice doctor gave me painkiller samples to get me through the next few days, since the last time I'd had a 3-day flare from the steroid.

I'd taken the day off, to rest my shoulder and ice it. I'd took the painkillers, but only for two days, because while taking them, I couldn't take sleeping pills, and I couldn't sleep because my shoulder hurt too much at night. Can you say Catch-22?

So almost a week later, I was pretty much convinced that, once again, steroid shots had failed me.

Until last night.

What changed my mind?

When I went to bed, it was the first night in pretty much three months that I haven't hurt to the extent that I couldn't sleep. I lay down, and waited for the pain to kick in. It's been hurting throughout the day, every day, but at night, it's unrelenting. No matter what position I lie in – on the shoulder, on my back, on the other side – it hurts.

Last night, not so much! It ached very slightly, but practically nothing!

I almost couldn't believe it!

And on Friday, I'd even started up my physiotherapy exercises again: heat the shoulder thoroughly with heat pack, do exercises, then ice shoulder, at least 3 times per day.

I'm thinking this might work!!

Yippee!

:) L

P.S. No, that's not my hairy back in the picture!
P.P.S. I'd like to know why my computer always insists I'm spelling the word "rheumatologist" wrong...

1st Anniversary

It was a year ago this week that my world changed.

I was planning a Christmas party for the coming weekend and had taken the week off work. Everything was fine, until my hands got sore, and the aching in my body wouldn't go away, even though I hadn't gone to the gym in a few days. I had no clue what was going on, but wasn't that worried. Just vaguely thought I must be coming down with something.

Vaguely because I was too busy getting ready for my party! Christmas cookie party! Friends! Fun! Christmas music! Glowing candles! The smells of clementines and coffee and cinnamon and yummy cookies! Who had time to worry about getting sick???

Besides, I hardly ever got sick. I seriously have had maybe 4 colds in the last 10 years. No kidding! The last real illness was the flu and that was some 13 years ago. I have a very healthy immune system.

Little did I know that that healthy, healthy immune system was about to run rampant and turn on me.

The party was Sunday afternoon. I was so thankful toward the end, when just my sisters and their families remained, that my youngest niece played helper and cleaned up. I was wiped and sore. But happy. Still not thinking.

The next morning, I couldn't move when I woke up. I mean, literally couldn't move.

It had been a week since the first symptoms of something wrong had begun to set in.

I finally managed to get out of bed and called my doctor to make an appointment. The next day was even worse. I wouldn't say I was paralyzed in the medical sense of the word (obviously not!), but close: so stiff and sore I can't even begin to describe it. The thought of experiencing that again scares me, especially since now I've had pain with the symptoms and know it would be much worse. I called the doctor's office in a panic at 6 in the morning, then drove there without an appointment, even though I was scheduled to go in the next day.

Welcome to the world of rheumatoid arthritis, you!

I had no clue what I was in for.

The drugs are a miracle. I thank god, the stars, the world, the ground I walk on, and scientists, most of all scientists, every day for the drugs. Without them I wouldn't be able to get out of bed. I don't exaggerate. I can't imagine how people with RA years ago survived without them.

It's been a tough year because of RA and for other reasons, but I surprise myself with my resilience, strength and character. I honestly didn't know I had it in me!

These past few weeks have been particularly tough: on top of everything else, I've developed frozen shoulder in my left shoulder. Who knows why? For the enjoyment of the universe? Because life isn't fair? Because somebody had to? Just cause? Really doesn't matter. It just is, like so much else in life. So, hard as it is, and freakin' painful as it was (and it was!!!! – but luckily the pain is dying down), I keep going.

It isn't courage. I don't really know why people say that. Courage is jumping into a lake to save someone when you have the choice not to. What is my choice? To lie in bed all day and moan? Not really. I'm not that badly off. Not compared to some people. So I would never say it's courage. Character, yes. Fortitude, sure, OK. You just keep going. One step after the other, just the way you always have. Sure, it's a little more challenging, and, sure, I feel a little more cranky at times, and have way less patience with those who are self-indulgent. So you have a cold and your nose is dripping? Get a Kleenex! I am also, paradoxically, more patient and understanding in many ways.

Do I wish I was here? No.

No.

And once again, no.

But I am. And so I go on. As do we all.

Happy Anniversary to me.

In Which a Number of Things Are History

The Arava's history, as is my shoulder apparently, mwahahaha!

All joking aside, I'm feeling about as gray as the day outside.

The Arava upset my stomach to no end. At first I thought it was something I ate. Then it went on and on and it occurred to me that, no, it wasn't any food, it was the freakin' drug! Not so good.

And today I went to my rheumatologist re my shoulder and confirmed that, so, Enbrel it is.

And speaking of the shoulder, she doesn't really know what's up. Yes, it is stiff and she thinks, a frozen shoulder now. How exciting. Rotator cuff tear? Possibly. Even more exciting.

She thinks its odd, though, that I have had pain even at rest, not just upon movement. Things don't add up in her opinion. Me, I'm just tired.

So she did up an ultrasound recquisition, then I walked down the hall to the X-ray place and submitted myself to torture. Yes, torture. It's all in the name of science and figuring out what's wrong, so it's all good, but definitely not a happy place.

Holding my hand on my lap? Done! Bending my elbow and moving my hand to the side? Not so done. Placing my hand behind my back? You have got to be seriously kidding me! By that point, my eyes were welling up.

The pictures looked cool, though. Kind of like the surface of the moon...

We should have the results in 2-3 days.

I just want my body back.