Getting Back Into Shape

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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.

My Freakin' Shoulder...

 
...is still killin' me.

Went to see the physiotherapist again today. He had done a reassessment again last week and doesn't think it's a rotator cuff tear. Today, he checked for a pinched nerve. Doesn't seem to be that, either.

Nonetheless, I'm feeling almost constant pain.

Yesterday, I was so beside myself I had to go for a walk because I was desperate to distract myself. I walked and walked and walked. I walked for almost an hour and a half, till I was getting quite tired and my arm was getting sore – this time from hanging at my side for god's sake! Although at least it felt a little more relaxed – I'd told the physiotherapist that my deltoid has been feeling all contracted for some time now, like when you go to a massage therapist and there's a knot, and they push and there's that crazy painlike feeling just before the knot releases? That's how my deltoid has been feeling. Only the last few days, that feeling has spread to my bicep. Then yesterday, the muscle in my forearm joined the fun. WTF???????????????

Yes, I cried.

Bloody freakin' shoulder.

I have an appointment with my rheumatologist next Monday to get her to check it out.

Course, watch: by next week, it'll be just fine!!!

Update

I know I haven't posted in ages.

It's been crazy at work and otherwise somehow. How is it possible to go into the office only 3 days a week and still be crazy busy? But there you go!

Here are some quick updates on what's up in my world:

Shoulder: killing me practically constantly + pain in deltoid and even bicep now at times. Going to go see family doctor in a week when she's back from vacation to see what the heck is going on.

Sleep: Went to sleep clinic. Doctor thought problem wasn't apnea or anything. Tried medication, which worked in terms of prolonging sleep till later. Excellent! Now sleep totally screwed up because of pain of shoulder. Meeting with sleep doctor again next week. Not so excellent. :(

Meds: Trying Leflunomide, aka Arava. Basically, when my benefits run out sometime next year, I'll have to apply for government benefits, and I'll need to have tried Arava. Really don't know the ins and outs of all this. Still need to research everything. I'm keen on it, cause it's way less expensive than Enbrel. Had to laugh at my pharmacist, though, cause when I went to pick it up along with refill of Methotrexate, he said something about it being expensive. I said, "Um, not compared to Enbrel!..." Let's hope it works as well as the Enbrel. Have to admit, I've been so busy, I haven't even researched how well it's supposed to work compared to Enbrel re joint damage, etc. Must find time this weekend to look into everything! And I mean everything!! Just started on it. Pills not injections, too – um, can you say bonus!

That's it, I think! Sorry for the rush!