Feeling much better. Feeling good.

As much as I hate prednisone, and did not want to be on more, I have to admitt that I feel so much better since I've been taking more. I can stand and walk around and play Rock Band 2 for more than 3 songs. I like being able to move.

Another person I went to high school with is pregnant. Maybe it's just a test of somesort... so that it will be all the much better when it actually happens.

Speaking of tests... I have a weird feeling that something huge is about to happen in my life... spiritually, I mean. I have never been religious. I went to church when I was little, but my family wasn't very into it. And as a young child and teen I didn't believe in a god.

There were periods where I desperatley wanted to. But I didn't.

I like the idea of religion. I like that these people have so much support and family and love around them. That they have a belief that someone is there, with their best interests at heart all the time. And I can't imagine how comforting that must be for them.

I still think parts are crazy. I've been reading a bible from a specific religious group of which I have a crush on (what can I say, I am amazed by some of the things they do).

Part of me worries that Tim will respect me less if I believe in God.

Merry Christmas to you, too...

I had my latest check-up with the all knowing all important Dr.Sheriff. And that wasn't meant to be sarcastic. He really does know alot. I always feel reassured when i leave his office, even when my hopes for the future are dashed away. (Is that phrase right?)

Anyhow, I was determined to mention to him that since I've gotten engaged I've been thinking more and more of babies. Adorable squirmy squishy little versions of Tim and I. (And oh man, do I wish I still had that face-melding software Brianna and I used to see what those babies would look like!!)

Has anyone else noticed that Christmas is an especially baby-filled time of year? And I wasn't even in a weird place for this sort of cross-section of the general public. I was in the mall! Not the Gynecologists office. The mall! And there were so many babies.

Back on topic: I asked the good doctor what would be our options for me having kids down the road, say, by 2012 ish.

All joking aside here - he laughed. Not a big laugh. Not a mean laugh. But sort of a "you-have-to-be-joking-but-oh-wait-you're-not-you're-serious" kind of laugh.

He said it would be hard. Obviously I'd be off all my medications which could very well leave me worse off than pre-meds. I may not be able to walk. It would be the 9 month pregnancy PLUS a 6 month pre-trying period of cleansing my body of the meds.

70% of women with RA experience a sort of remission, where the arthritis gets better during pregnancy.

30% of women get worse. With my luck, this is me!

He said that I'd need lots of support. But it could be done.

I've been feeling sad and angry and just confused as to why things like this happen.

But it always could be worse. He could have said that my uterus was damaged and this would kill me, he could have been cruel about it, he could have refused to even discuss options.

So I'll be happy. I smile every time the light catches my ring (which is often) and for now that is enough.

previous pessimissim

I was reading an old journal post from last year at this time, and I was shocked to see how depressed I sounded. I know that it was an awful event, and I had every right to be sad, but I couldn't believe some of the comments I had written.

I'm still sad about it. Tim always tells me that it wasn't my fault. But whose fault is it then? If it isn't mine?

I guess it's easier now that we're getting married. Because now I can plan when I am going to have my baby. And I will plan for it. And make sure it is healthy.

Sometimes I forget. And I almost mention it to Tim's parents. Sometimes I want to pretend I forget, and mention it to them on purpose.

I look around at all the women I know, and all the women I've only read about who are pregnant, and I get jealous. And sad.

Not sure where I'm going with this.

Bride-zilla! ROAR!

I had my latest infusion on Wednesday. I had to take the day off work to do it, and I felt guilty. But I need this.

I was surprised how much it actually helps. How much better I feel after I have it. Last month there were lots of days when it was difficult to do things, and I feel into kind of a slump around the house. I wasn't tidying up, I wasn't helping contribute. Tim would come home from working all day and I wouldn't have moved off of the couch.

He never complained. He's not like that. But I felt awful about it. So it's better now.

I had the good nurse for my infusion. She got the IV in after the first try, and it was a very relaxed, calm 2 hours.

I found out that they are moving the infusion clinic. To a bigger room! Yay! And we get cable. They really try hard to make the experience a pleasant one.

I spent my last infusion reading bridal magazines. You may call me bridezilla, but I refuse to have a crappy, awful, stressful wedding. I refuse.

All I can say is.... ROAR!

:)

I'm engaged!!!!


(yay)

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.

Joint Update

I had the drug infusion five days ago (almost exactly, actually) and I figured it was time for another update.

My joints have been kind of sore lately. My right ankle (which never bothers me) has been hurting, and my hands and elbows have been feeling especially stiff today. I was talking it over with Tim and I said how I'm unsure as to if the soreness is because the new meds. don't work as well as the old ones, or if it's because there's a switchover time period between when I had my last drugs and when the new ones work properly.

Plus, with RA there's always the possibility of having a bad day. For no reason other than it's a bad day for my joints. They just happen.

Things I had trouble with today:

• turning the taps on and off completely
• washing my hair
• using cutlery
• getting up off of the couch (from a sitting position)

Overall? I don't feel nearly as bad as I did the Christmas of 2006 when I was first diagnosed. That is what I always compare myself to when I have a bad day. I tell myself, "Hey. At least you can walk. At least you can open your mouth wide enough to properly brush your teeth. Buck up."

Drug Infusion

On Wednesday at 1pm I had my first remicade infusion at the clinic. I have to say, I was terrified. I had no idea what to really expect. The only thing I knew for sure was that they were sticking me with a needle and pumping me full of drugs for 4 hours. Not a great way to spend an afternoon in my opinion.

Anyhow, we got there and met the nurse. She did not seem very impressed that Tim was there with me, but that was too bad for her because I needed him there. I sat down in a chair and she got me ready for the infusion.

The insertion of the IV into my hand was the worst part out of all of it. I cried like a baby. I think that was more because I was scared and nervous though. After that, it was fine. I told Tim he could go home, and I watched a movie.

At one point another patient came in for his infusion, too. We watched the movie together.

After about 2.5 hours my drug infusion was finished. Because it was my first infusion I had to stay for an hour afterwards to make sure I was fine. Which I was.

After everything was done, I felt fine. I didn't feel dizzy, or sick, or anything at all like that.

Today my ankle is a bit sore, and my fingers feel a bit swollen. But it's hrad to tell if that was because of the drug switch, or because of me being broken. Who knows!

I have my second drug infusion on April 23rd.

To excercise...

I decided today to start exercising. No, that was a lie. I decided last night to start exercising, but couldn't implement said plan until this morning.

Tim and I woke up, got dressed and headed over to Bowen Park to do some running. I didn't run very far, or very fast. But I felt good about it.

I admit that I wasn't in the best shape before I was diagnosed, but if i was in bad shape then, I'm in dismal shape now. So I feel good about this decision.

Pain: After running I had some stiffness in my knees, around the joints but not in them. It went away. My ankles (which constantly are bothersome) were sore for a greater period of time, but nothing too painful, and I wasn't even limping.

So +1 for me!

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.