Frozen Woman: Life with Rheumatoid Arthritis

No More Daily Anti-Inflammatories!

noreply@blogger.com (Laurie Grassi) — Thu, 01 Mar 2012 21:40:00 +0000

Had to have a small procedure last week, which meant I had to stop taking anti-inflammatories the week before as they can increase the amount of bleeding and bruising, and guess what?? I felt really no different off them than on (other than my digestive system felt a whole lot more settled), so off them I will stay! My rheumatologist says that’s fine, as long as I’m feeling OK, and that I can always take them as needed, if necessary.

So yay re that!!!

And I’ve just cut my dose of Methotrexate down once again, this time to 15 mg. Soon, if all goes well, I’ll have to switch to the pill format, so I hope that doesn’t make me feel blech (I know that the pill form can do that, and the injections themselves already make me feel slightly nauseous — not the needle itself, per se, but the drug, I’m pretty sure).

But whatever I can do to take less meds, the better. Not to say I’m anti-drug, cause God only knows that’s not the case, it’s just I’d rather take the minimum necessary to feel optimal.

Make sense? I think it does, and I’m so thrilled that the Actemra is working well enough that I can cut back on other medications. Woohoo!

A Revised Migraine Plan

noreply@blogger.com (Laurie Grassi) — Tue, 24 Jan 2012 01:20:00 +0000

Soooooo. After three migraines in three days, I realize I need to rethink my plan to cut back totally on one of my migraine meds.

I'd originally been taking five 25 mg tablets of Topamax each day, and slowly, very slowly, over months, I've managed to cut that back to one 25 mg tablet each day. And all was going well. Surprisingly well. Supremely well. Happy-making well.

Until this past week, that is, when I cut out 3 days worth of those tablets (on Monday, Wednesday and Friday). That wasn't unusual per se; it's the sort of schedule I've used all along to get down to the one pill/day. But this time, my body said, "NOOOOOOOOO!" loudly and clearly, and the migraines started.

Needless to say, I'll start back on that one pill every day schedule again...

Sigh, but, hey, whatever really. It's better than five.

Feeling Normal

noreply@blogger.com (Laurie Grassi) — Sat, 21 Jan 2012 15:31:00 +0000

Went to see my rheumatologist last week. Not because there was a problem, but because I've been feeling so good!

She had mentioned before I went on Actemra (aka tocilizumab) last spring that we might be able to cut back the dose of Methotrexate I'm taking if everything went well. And it has been going well. For about the last 3 months, I've been feeling normal. That feels so odd to me after 2 years of not feeling normal, but there it is. My hands, my feet — normal. I can even walk to the subway, some 25 minutes, and my feet aren't aching by the time I get there. Woohoo! It's an amazing feeling. I still have the odd twinge here and there: Just the other day I walked home from the subway and when I got home, one of my toes all of a sudden decided it was time to freak out and hurt, but whatever! That is such a rare occurrence now, it's something I can just ignore.

So I made an appointment and said I wanted to cut back on the Methotrexate. She talked to me about how I was feeling and did a physical exam and agreed that it would be fine to try. She said we'd do it in 5 mg intervals, so I just cut back to 20 mg this week. If all goes well, we take it down to 15 and so on. And once it's below 15, if we get to that stage, we'll switch to the pill form of the drug, instead of the injection. She did make it clear to me, though, that while short-term studies show that Actemra is just as effective on its own as it is in combination with Methotrexate, there are no long-term studies yet. But I know we'll closely monitor how things are going, both with physical exams and X-rays, so I'm feeling good about cutting back.

Quite frankly, I'm thrilled to be cutting back on any of the multiple drugs I take! I've also, slowly, very slowly, been cutting back on my migraine meds and this week have finally started going some days without any. So far, so good! I'd love to cut a number of meds from my daily schedule permanently if I can, so fingers crossed!

Let's face it, the less drugs I have to take to maintain good health and mobility the better.

I'm Back!

noreply@blogger.com (Laurie Grassi) — Mon, 02 Jan 2012 00:44:00 +0000

I know, I know, it's been freakin' ages since I last posted anything here, and I'm sorry for my prolonged absence.

Things have just been rather odd in my life the last few months — non-RA related, I'm glad to say — and I've just, well, disengaged to be honest.

But enough of that.

Happy New Year's to you all! I have been silently following along with those of you who have blogs, really!

On the RA front, I'm actually doing very well. I'm still doing the Actemra-infusion thing (aka tocilizumab), once a month. For the past couple of months, I've felt more or less normal. Yes, you heard me correctly: normal. It's kind of freakish actually. I've had the odd pain in my hands and twinge in my knees and feet, but really hardly at all.

In fact, I'm going to email my rheumatologist to make an appointment to talk to her about cutting back on my dose of Methotrexate. When I started taking the Actemra, she mentioned that that might be a possibility, depending on how things went. It would be good, because I have to say, taking it has now come to make me feel ill. Not ill because of the needle, I don't think, but because of the thought of the drug, which started, again I just think, because the drug itself makes me feel slightly nauseated. So, a combination of the physiological and psychosomatic, I'm pretty sure, but there you go.

In other drug news — walking pharmaceutical stew that I am — I've been cutting way back on my migraine medications slowly but surely, since I rarely get them anymore, and when I do, my acute medication takes care of them quickly. I'm down to just 25 mg of Topamax each day and hardly any Verapamil. Yay! Hoping to get that down to nothing in the next couple of months. The fewer drugs at this point, the better. Would that it could be nothing…

:) L

P.S. The pic is of my sister and me. Cute, no?

Second Actemra Infusion

noreply@blogger.com (Laurie Grassi) — Sun, 10 Apr 2011 15:37:00 +0000

So I had my second Actemra (tocilizumab) infusion, on Wednesday and NO BRUISE!

I took everyone's advice and really put pressure on the spot for like 5 minutes or more after the needle was removed and held my arm up in the air, and it worked!!!

At least, I'm assuming that's what did it, especially since the needle seemed to hurt even more going in this time. Go figure.

Will report back after the next round if it works again.

In the meantime, it seems my hips aren't aching the same way, so I think (said with caution), that the Actemra is starting to work!

And re side effects, I didn't have a headachy feeling quite to the same extent for the two days after the way I did the first time. Could be because this time out, I made sure to drink more during and after the infusion. Who knows?

:) L

Updates and Future Outlook

noreply@blogger.com (Laurie Grassi) — Mon, 28 Mar 2011 12:20:00 +0000

1. My CRP (C-Reactive Protein) levels are elevated.

My rheumatologist's receptionist called me a couple of weeks back on her orders to ask me a) am I flaring? b) am I sick?

Um, I would say flaring, because I stopped taking Enbrel and hadn't started Actemra till some 3 weeks later and was getting more and more sore. So, yes, I could have told pretty much anyone that my bloodwork would be screwed up.

I told the receptionist that (not exactly those words, that would be rude; I merely said, hey, gap in drug usage, equals sore feet and loose legs, blah, blah...).

A few days later, the receptionist called back to say, "Doctor says, 'Hang in there, and get your bloodwork done again just before your next infusion.'"

Will do! At this point I can't quite tell yet if the Actemra's taking effect. My hips are even aching at times, which is concerning, just because, hey, who wants to be in pain? And if aching gets worse that's pain. But I know it can take time for drugs to work, and there's still lots of time for that to happen.

2. New work is on the horizon.

I will be very busy soon. In addition to the work I'm doing as editor of special issues at House & Home, I'm also going to be the new book editor of Chatelaine magazine for the time being! I am beside myself with excitement – I get to work on something new and a subject matter that I absolutely adore! Unfortunately, that means I won't likely have the time to post very often at all, or even have a chance to visit blogs very often. I will check in as often as I can, but I just wanted to give you all a head's up and not let you think I just dropped off the face of the earth or didn't care any more! I'm still here and will pop by when and as often as I can!

:) L

P.S. Don't forget to look for the new Kitchens & Baths issue of House & Home on newsstands and digitally today, March 28!

All Clear on the Cholesterol Front

noreply@blogger.com (Laurie Grassi) — Tue, 22 Mar 2011 21:32:00 +0000

The cholesterol situation is NOT a crisis, according to my family doctor.

I was puzzled when she said that because my rheumatologist had referred me to her with the request that she send me to a specialist for my cholesterol since the Actemra (tocilizumab) infusions would likely increase my borderline levels.

But to quell my concerns, my family doctor showed my the handy-dandy chart she used to come to her quick conclusion.

Entitled the "10-Year Coronary Disease Risk Assessment," it took into account things like my age, bloodwork results, smoking, diabetic and blood pressure statuses, and added up all the corresponding points, charted a percentage and spat out (OK, not literally, but sounds fun!) a figure that clearly indicated I'm in the low-risk category.

Whew! Ben & Jerry's, here I come! (Just kidding! Or at least somewhat kidding.) My doctor says we'll check my cholesterol again in six months just in case and go from there.

Okey-dokey. I am good with that.

IV Bruise, Part Deux

noreply@blogger.com (Laurie Grassi) — Fri, 18 Mar 2011 19:23:00 +0000

So the bruise is still there, still totally noticeable and, if anything, more sore now than before – how that is possible, god only knows.

So let's take a moment and do a little calculating.

We're coming up to the two-week mark. If I have a bruise like this each time I get an Actemra (tocilizumab) infusion, ie. once a month, each month, one half of each month, I will have a noticeable bruise on one of my arms.

Therefore, I will be essentially "walking around looking like a junkie*" most of the time.

Nice.

P.S. A note of thanks to Pony for the junkie* reference. :)

IV Bruise

noreply@blogger.com (Laurie Grassi) — Sun, 13 Mar 2011 14:55:00 +0000

Had my Actemra (tocilizumab) infusion on Tuesday, and this is what my arm looked like yesterday.

I'm hoping that it won't look this way every time. When I get my blood work done, sometimes I bruise a little, sometimes not.

I just wanted you all to see this and know that it's not like I was tortured or anything. And it's not like the very nice lady who put in the IV line couldn't find a vein or anything. She got it right off the bat, and there was just a pinch – it's not like she killed me or anything.

I just bruise easily. Always have, really. And now I think more so. My tender, tender skin obviously didn't react well to teeny, weeny, eensy, tiny drops of liquid being ever, ever so slowly infused into it and decided to freak out and get all bruisey as a result.

Sigh.

If this sort of thing keeps up, it's not going to look so pretty come summertime...

My First Actemra Infusion

noreply@blogger.com (Laurie Grassi) — Thu, 10 Mar 2011 01:53:00 +0000

Sorry for not posting sooner, and commenting and everything. I've been finalizing my first special issue of House & Home – Kitchens & Baths, on sale on newsstands March 28! – and have been crazy busy!

I had my first Actemra (tocilizumab) infusion yesterday. (By the way, I have no clue how to even begin to say the generic name of this drug, only the brand name. If you're curious, check out this blog post to find out how drugs get their often freakishly unpronounceable names.)

Leotard kindly offered to come along with me to keep me company. Personally I think she just likes to see me suffer. Lol! Or she has a fascination with medical matters – which, I confess, I also do. Or she's a genuinely good, caring friend. Whatever the case may be, I was happy to have her along. She keeps me laughing and distracted from the matters at hand. Like getting a needle in my wrist and being infused with a drug that was just approved last January and that, as everyone has been warned, has caused one death. Yes, one death.

And....

I knew that going in.

I do my research. I read the obligatory side-effects warnings, and I know what I'm getting into. All the drugs I'm on, for rheumatoid arthritis and migraines, have scary-sounding side effects, and bad things happen. But I'm more likely to get hit by a car crossing the street. Or smack my head falling down in the tub, or slip on ice and also smack my head during the interminable winter we've been having here, quite frankly. And I kinda like to be able to move, you know? So getting the drug was the plan.

I hadn't been at all sure what to expect from the infusion clinic, but it was super comfy. There were about 11 La-Z-Boy–type recliners, each with a pillow on it and curtains that you could draw for privacy. There was even a big-screen TV. Kind of like first class in a plane – or what I imagine first class in a plane would be like, since I've never actually experienced first class!

Leotard and I went to the back of the room, so she could sit beside me, and we made ourselves comfortable.

Then the very kind infusion lady came around and set to work. She weighed me (I have lost yet more weight!!!) and took my blood pressure and temperature. Then she inserted the IV line; aside from a momentary pinch, it wasn't too bad. She set up a saline solution line first, explaining that once the Actemra came over from the pharmacy, she'd hook that up. So there Leotard and I sat, chatting, until the Actemra was hooked up. Then I curled up and closed my eyes, while Leotard played games on her cell phone and read magazines (what a good friend! sticking around even though I was ignoring her!!). In between, my blood pressure and temperature were taken a few times. An hour later, the infusion was done. After that, I had to stick around for another half an hour to make sure I was OK, my blood pressure was taken again, and then I could go.

Done and done!

Now we'll see how the Actemra works for me (my hands and feet have been more "there," if that makes sense, since I stopped taking Enbrel three weeks ago, and my legs have gotten that loose feeling they haven't had in ages), and what my blood-work results are each month going forward.

Keep your fingers crossed!

Non-Disclosure and Feet

noreply@blogger.com (Laurie Grassi) — Wed, 16 Feb 2011 01:09:00 +0000

"My feet are sore."

The words just slipped out at work today.

I didn't mean to say them, but my feet were hurting me – not horribly, but hurting nonetheless – and I just blurted it out without thinking.

"Your feet are hurting?" asked my colleague.

"Oh, they're just bothering me for some reason," I said, or something to that effect, waving it off.

I totally hadn't meant to say anything, I just said it, then had to figure out what to say to cover for myself, so to speak.

Weird to have to do that, to feel you have to do that.

Don't you think?

High Cholesterol

noreply@blogger.com (Laurie Grassi) — Fri, 11 Feb 2011 17:06:00 +0000

Newly added to the list:

Borderline high cholesterol – so borderline, it might as well be high.

Who is this person I've become?

I do not know her.

Erosions or WTF!

noreply@blogger.com (Laurie Grassi) — Mon, 31 Jan 2011 21:15:00 +0000

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

noreply@blogger.com (Laurie Grassi) — Mon, 24 Jan 2011 23:31:00 +0000

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

noreply@blogger.com (Laurie Grassi) — Sun, 16 Jan 2011 22:13:00 +0000

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

noreply@blogger.com (Laurie Grassi) — Fri, 07 Jan 2011 23:00:00 +0000

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 (?)

noreply@blogger.com (Laurie Grassi) — Mon, 13 Dec 2010 15:01:00 +0000

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

noreply@blogger.com (Laurie Grassi) — Sat, 04 Dec 2010 22:29:00 +0000

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

noreply@blogger.com (Laurie Grassi) — Mon, 22 Nov 2010 16:04:00 +0000

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...

noreply@blogger.com (Laurie Grassi) — Mon, 15 Nov 2010 22:40:00 +0000

...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

noreply@blogger.com (Laurie Grassi) — Fri, 12 Nov 2010 19:35:00 +0000

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!

Injection Rejection

noreply@blogger.com (Laurie Grassi) — Sat, 30 Oct 2010 20:45:00 +0000

The shoulder pain continues. I have no clue why.

I had a corticosteroid shoulder injection Monday morning, which, one would think, would be working by this point.

I know the injections don't actually help with pain, they reduce inflammation. I also know that they can cause a flare, which indeed this one seemed to have.

By Thursday, there was a brief period of relief, and I though to myself, Yes, this is it, it's working!

Alas, it was not. I don't know ho to sit or lie. Or stand for that matter. Yesterday I went to watch my niece's riding lesson and it was bloody cold. Tried to put my left hand in my coat pocket, but that was a no go, BECAUSE IT HURT TOO MUCH!!! So then, on top of the pain, I ended up with white corpselike fingers because of Raynaud's, which in turn, is because of the rhuematoid arthritis. Perfect timing for Hallowe'en. Ah, it's a grand little world. (I did, by the way, have Thinsulate-lined gloves on.)

Again, I have no clue why the damned injection isn't working for me. They don't work for everyone, it's true, and, apparently, I'm one of those lucky few, as fate would have it.

Could I be one of those lucky few who win a lottery? Well, no! That would just be too much luck!

I had a systemic corticosteroid injection back in December of last year and that didn't work either. It did zip all. Nada. Zilch. Same for this. In fact, if anything my shoulder is worse off because I haven't done my physio exercises for a few days now.

Seriously irritated.

And getting a cold on top of things.

P.S. For those who are interested, the injection didn't hurt. It was my first joint injection and as far as I can figure, was a posterior glenohumeral injection, I believe. Since I'm not a doctor, don't quote me on that!! Piece of cake, though, especially if you've been injecting yourself and getting blood tests done left, right and centre...

Warning!

noreply@blogger.com (Laurie Grassi) — Mon, 25 Oct 2010 00:15:00 +0000

Here, girls and boys, is why you should never do an Enbrel injection without icing beforehand!

The other night I got home, took the Enbrel out of the fridge, set my timer, figured I could jump in the shower, do my Methotrexate injection, then get the Enbrel shot done, all before getting dinner. Why not? The shots are a breeze now!

By the time I'd taken out my contacts and had my shower and gotten all the other stuff out for my shots, 22 minutes had elapsed. Hmm, 8 minutes for the Methotrexate injection? Sure! And, indeed, I did it – with 2 minutes to spare. Course that meant no time for icing my stomach. When I first started doing injections, I'd been icing my stomach for 20 minutes, but lately it's been 10, sometimes slightly less, so I figured, what the hell? So off I went with the Enbrel. I didn't even both with alcohol swabs for either injection, since I'd just had a shower, and I'd read somewhere (couldn't remember where, but I knew it was a reputable site) that soap and water were just as good as alcohol.

Bang! And it was done. There was a biggish blood drop, but that's happened before, and it didn't sting anymore than normal, so great!

Next day, huge bloody bruise!

I didn't make the connection at all until sometime later: no icing, big bloody bruise. Oh!!! No icing = big bloody bruise.

So, this week, back to icing for at least 10 minutes....

Fatigue Takes Its Toll

noreply@blogger.com (Laurie Grassi) — Sat, 16 Oct 2010 13:47:00 +0000

The other day I slept in almost an hour past my alarm clock. That never happens. And I'm not exaggerating. It's the truth.

There have been a handful of times in the last decade that my alarm woke me up. Other than that, I always, always, always wake up before my alarm goes off. I have an incredible internal alarm clock.

Until the other day! I use my iPhone as an alarm; I have no idea how long it keeps going, but I know it's for quite a long time. But I just slept right through it. Goes to show you how fatigued and tired I am. Fatigued as in feeling totally worn out all day long.

I've always been a sleepy kind of person who loves naps, I'll admit that. But this is different. I wake up after sleeping all night long and could take a nap after breakfast. If I'm at home during the day, I usually do take a nap in the afternoon, but it's not a treat and a pleasure the way it was in the past, it feels like a necessity.

I don't sleep all night long, so that could be a definite cause. I fall asleep right away at night, but usually wake up four or five hours later and am awake for at least an hour to two hours (!), so that certainly doesn't help. That was going on before RA hit, but now it's way more firmly established.

It could be medications I'm on, like Methotrexate, as fatigue is a known side effect.

It could just be the crap RA! Fatigue, yes, is also a result of this crap disease. (Ha! Just like saying that word "crap"!)

And, of course, this past week, it doesn't help that my shoulder is still sore because of the ongoing tendinitis issue, and sleeping isn't supercomfortable.

Whatever it is, I'd say I'm getting a minimum of 7 hours of actual sleep 3 nights a week and at least 9-10 hours the other nights. Add naps to that, and the fact that I am getting to the gym at least 3 times a week for cardio workouts and going for long walks on the other days, and there's no way I should be feeling as tired as I am.

Am meeting with my rheumatologist on Monday for a regular checkup. Will ask what's up with this and report back!

For now, it's almost 10 in the morning and it's clearly naptime!!!!!

The Conclusion: Shoulder Tendinitis

noreply@blogger.com (Laurie Grassi) — Sun, 03 Oct 2010 14:17:00 +0000

So went to see a physiotherapist last Wednesday and he did an assessment and thinks I have tendinitis in my left shoulder.

The assessment, which involved him asking lots of questions and having me move my arm about in all sorts of directions, killed! My shoulder was incredibly painful for the rest of the day and night, and I slept like crap. I actually took some acetaminophen, which I haven't taken in ages because I just couldn't take the pain (I'm already on so many freakin' drugs, I don't really want to take more, particularly any which might, might upset my stomach but there you go...). I also iced my shoulder on and off all evening as instructed.

Luckily I got in for a treatment appointment Thursday morning. I was given some ultrasound, then heat. Then the physio manipulated my shoulder a bunch, basically jiggling it up and down a lot in the socket, which, surprisingly, didn't hurt at all, and massaged it very lightly, then iced it. It felt a whole lot better after that.

This left shoulder has always been weaker. In fact, as I've mentioned before, my whole left side is weaker, since my right side is my dominant one. And the shoulder has caused me some very slight pain before, ironically enough, during the longer periods of time when I haven't done any strength training! But this amount of pain is very unusual and I have been doing strength training, so I can only suspect that RA has something to do with it. Call me suspicious, call me wrong, but there you go...

I've been icing the shoulder every couple of hours (when I remember!), as instructed, and I go back for another physio appointment tomorrow (Monday).

I hope we can nip this thing in the bud, so I can get back to normal life – and normal workouts!