Monday, May 4, 2009

Just Me (And No IV)

For the last week I have been dealing with a lot more pain than usual, and it has been getting increasingly worse. First just my toes hurt a little bit more; then my fingers. Now my everything hurts. My toes, my ankles, my shins, my knees, my wrists, my fingers, my elbows, my head, my lip, my EVERYTHING! Granted some of those things aren’t directly related to my RA, but it seems like a lot of them are.

I thought maybe it was just a “flare” and I waited about a week for the pain to go away, but it only seems to be getting worse. I started to get worried about the upcoming weekend where APL and I will be traveling to Alabama to go to a dear friend’s wedding. Obviously I would love to be able to dance at her wedding, but because of all the pain I am in I was starting to worry about making it through the airport on my feet or staying energetic enough to last through the whole reception. I really want to enjoy her happiness with her, but with all the pain I’ve been in lately I found myself willing to trade dancing for just staying upright, which doesn’t really seem like any nice way to live.

On Saturday night I felt particularly discouraged, so Austin and I decided to go out to dinner to see if we could get me to cheer up and snap out of it. We were sitting at a local Mexican restaurant, sipping margaritas while we waited for our table, and talking about how I shouldn’t feel bad that I am constantly calling the rheumatologist with my different problems. I was frustrated because it seems like as soon as I get one piece of my body under control (i.e. my shoulder, my rash) another piece goes out of whack (i.e. my EVERYTHING, see above). But, even if my body is a complete disaster, I guess it is the rheumatologist’s job to help me deal with my disaster. So we resolved that I would call him first thing on Monday morning.

It was then that I looked up to see an adorable little girl smiling over her daddy’s shoulder at me. Being me, I obviously started making faces at her to make her smile. She started giggling and her dad turned around to see what was going on. And who could it be? My rheumatologist! He asked me how I was feeling and I told him honestly not well, but he was out to dinner with his wife and daughter so I didn’t want to bug him. I told him I would call him on Monday and he was really supportive and said we would figure out how to deal with it and make me feel better.

The really great thing was that he remembered and called me first thing this morning to check to see if I was ok. We ended up playing phone tag most of the day but I did eventually get a chance to talk to him. We decided that it was time for a change, and that change means no more Remicade. I had my first Remicade treatment last October, so we’ve been trying that treatment for about seven months now and obviously it isn’t solving all of my problems since currently my everything hurts (again, see above.) So, instead of what would have been my sixth infusion of Remicade next Wednesday, I’ll be meeting with the rheumatologist to discuss my options for the next treatment we will try.

In some ways, giving up on the Remicade is sort of like going back to square one. Although I guess it’s really like square two since we can at least mark something off the list. Also, since the Remicade did seem to give me some improvement in energy and decrease in pain (at least for a few weeks after each infusion) apparently there are some other treatments in the same category that we can try that I might possibly get more benefit from. Of course, I might not get more benefit from them – I might even get less. Only time will tell. And apparently some of those treatments are “self-injectible” which I am not particularly thrilled about. Although I did get a good laugh when the rheumatologist suggested that maybe APL could do the injections for me – you never saw such a big man pass out at the sight of a needle as my APL!

In the meantime I’ve been put on a high dose of prednisone so that hopefully I can make it through the weekend in one piece and maybe even enjoy myself (I would cross my fingers about that only I can’t because it would hurt too much…) And, by next week, my rheumatologist and I should have figured out what Plan B is. Wish me luck on both fronts, please!

4 comments:

Itsy Bitsy Spider said...

You should talk to your doctor about Plaqunio. It may not be right for you, but it REALLY helped me.

Joanna said...

I know that A & K will be so happy to see you this weekend :-)
As will I. Is there anything you need that you can't travel with? Anything I can bring you? Let me know! I'm a hostess, and Lord knows after four years here I should have learned some southern hospitality :-P

Sarah said...

i will go to the doctor with you! and you won't have to drive at all! just hold pansy (eek)

~kelly marie~ said...

That is amazing that you ran into your doctor. I don't think giving up on remicade is back to square one. I think it's finding what the best treatment is for you. For now, my fingers are crossed that prednisone did the trick!