Whoops!

I hadn't really thought to update this, but while visiting with my mother she made the comment, "Why don't you ever update your blog?" So here it is. For you, Mom!

The last time I saw Dr.Sherriff he decided to change my infusion from every 8 weeks, to every 6 weeks. This was in order to stop me from noticing the stiffness before my infusion was due, and to prevent another episode like the one I had in July (couldn't walk!).

I had this infusion last month sometime. It went well... sort of. The nurse was really awful. Every time I have her, she messes up in some way. This time, she couldn't get the IV in my hand and had to switch to the other. Boo!

For the first time I was able to sign out and leave early. Up till now, I always had to wait one hour post infusion to make sure I was ok.

Since the weather has changed I've noticed more stiffness.

I'm also lowering my prednisone some more. I'm now at 3mg taken in the mornings (before 9am). My eventual goal is to be off it forever.

Update

I had sort of forgotten that I'd planned to keep a record of how my progress with my new medications was coming along. Whoops!

Some brief notes for you.

I'm still sore sometimes, and still on prednisone (but only 4mg/day!). BUT - Many days I forget that I have arthritis. We went to the PNE on Sunday, and were walking around for 6 hours, and by the end of the day I was wet, cold and tired, but not sore at all!

Work is interesting sometimes. The kids know that some days I'm sore, and some days they can't hang off my body. I think it's a good lesson for them, too. To learn that people have their own boundaries, and one can't exactly jump all over them.

Tim is, as always, awesome. Since we've bought our townhouse, he's been even more supportive. He reminds me not to work too hard, and fetches things for me when I have.

Speaking of townhouse, it does have stairs. I thought that it would be alright, but I have noticed my legs aren't such fans of the stairs. I try to balance it out by using them as little as possible.

I'm coming up due for my... 4th? 5th? infusion... I've lost count! But I'm used to them now, and actually enjoy an excuse to take the whole day off from any work :)

Second Infusion

I had my second Remicade infusion last wednesday. It went better than the first time. I think that's due to the fact that I knew what was coming! I just hung out and read my book.

Afterwards, however, was another story. When I had finished my first infusion, I felt fine. But after this second one my fingers and hands were extremely sore, and there was an enormous bruise on my hand from the IV. My mother pointed out that this was because of lack of skill at inserting the IV. Whatever the reason, I don'y enjoy looking at the large ugly spot on my hand.

In general, I'm doing good. I was dissapointed by my progress on this new drug untill it hit me - at the same time that I'm building up the new drug, I'm lowering my prednisone (an anti-inflammatory drug). Which means that I AM actually getting betetr! Hurrah!

I was talking with one of the other patients in the clinic on Wednesday... he mentioned that we need to have the methotrexate in order to make the remicade work. I'm not happy about that.

I get my next infusion in around 5 weeks. Then I see my doctor again on June 10th.

Intro.

I haven't blogged in years. I lost the taste for it. I found that I stopped writing in my paper-journal when I journaled online. But lately there's been so much Arthritis Related issues that i just wanted somewhere to get them all out.

To catch you up, I have Rheumatoid Arthritis, which is commonly referred to as RA.

"RA is an autoimmune disease. This means that your immune system attacks other parts of your body. RA causes redness, pain, swelling or a hot (or warm) feeling in the lining of a joint, the place where 2 or more bones come together. This redness, pain, swelling and heat around the joint is called inflammation. " - www.arthritis.ca

They don't know too much about RA. There's a whole lot of technical jargon that explains why there might be so much inflammation, and talks about a thing called "tumour necrosis factor alpha" which is associated with RA. Lots of jumbled up stuff.

Right now I'm on a shit load of medications:

- Methotrexate: Commonly used to treat RA. Also used to treat cancer. Works by stopping rapid cell growth. Fun side effects that upset me include being forbidden to become pregnant while on this drug, due to the high likelyhood of the fetus having severe birth defects.

- Prednisone: This is also another one they use alot. And not just for RA. It's a steroid which decreases inflammation. Side effects include weight gain, hair loss, thinning skin, and therefore stretch marks, as well as mood swings.

- Enbrel: This one is a once-weekly injection done at home by the boyfriend, Tim. It works to block that tumour necrosis factor alpha that I mentioned. I think. Side effects for this one include reactions at the injection site such as itching, swelling, and general uncomfortableness.

They are currently in the process of switching my drugs. I'll still take the first two, but instead of a weekly Enbrel injection, I'll get an infusion of the new drug, Remicade, every 8 weeks.

I start the new medication on Wednesday, April 9th. I am not excited for it.