I was digging through some old boxes a few weeks ago in an effort to de-clutter my storage (read: junk) room and came across a small, brown paper bag that brought me to tears. It was from my first stay at Sick Kids Hospital in Toronto from 1991 - July 19th to be specific. And I read the label and I just sobbed. Has it really been that long? I wrote a post about how long - but somehow that little paper bag with a hospital label just knocked me flat - emotionally.
The other discovery was the contents of the bag. It was blessed oil that my grandfather had given to me when I was first diagnosed, and a hand-written prayer to go with it. My grandpa passed away 12 years ago, and I really only have memories of him - great memories. He had a rock-solid Catholic faith and I'm sure he prayed for me and my health. I miss him.
The grandpa memories combined with the totality of my RA hit me hard. Has it really been that long? I think I could write that question 100 times in this post with different inflections and never fully have the answer.
Has it been that long? Yes. Has is really been that long? No. Has it been that long? Really? Has it been that long? Seriously? Has it been that long? OMG. Has it been that long? @#!*. Has it been that long? Ouch. Has it been that long? (resigned sigh). Has it really been that long? (tears). And all those answers are followed by a sadness, emptiness, and a bit of defeat.
I can't help but reflect that the glass being a bit half empty - at least today it seems that way. I've had RA for more of my life than I haven't. I guess it really has been that long.
Monday, March 29, 2010
Sunday, March 21, 2010
Dinosaur Drugs
I was surfing a website which listed the arthritis medications which are currently in use and it listed a few that are no longer in use - in particular Gold Injections caught my eye. I was on Gold Injections back in the day - way back in 1991 - 1992. And now they discover they are not effective in the treatment of RA. Hmmm.
I went to my GP's office twice a week for over a year I would go to give a urine sample one day - they would rush it to the lab. The next day I showed up, and after a quick scan of my labs, I would get my shot. It was a pain in the butt (haha, it was an IM injection - typically in my glute). I was taking the injections in combination with another DMARD (can't remember which one, see extensive list below). Clearly the gold wasn't pulling its weight, as it is now found that Gold is ineffective in the treatment of RA.
Thinking back on all of my drugs over the past 18+ years, I seem to have been around the block once or twice. Sulphasalazine, Methotrexate, Arava (only a short time, the side effects and time I needed to be off it before conceiving scared me), Plaquenil (the most bitter tasting drug - ever), Imuran, Naproxen, Prednisone, Enbrel. Hmmm. Quite the list.
My current combo of Enbrel, Voltaren, Methotrexate and 1 mg of Prednisone seems to be ok for now. Writing this entry was like taking a trip down memory lane - revisiting old friends I met along my RA path. Whew, there are a lot of them...
I went to my GP's office twice a week for over a year I would go to give a urine sample one day - they would rush it to the lab. The next day I showed up, and after a quick scan of my labs, I would get my shot. It was a pain in the butt (haha, it was an IM injection - typically in my glute). I was taking the injections in combination with another DMARD (can't remember which one, see extensive list below). Clearly the gold wasn't pulling its weight, as it is now found that Gold is ineffective in the treatment of RA.
Thinking back on all of my drugs over the past 18+ years, I seem to have been around the block once or twice. Sulphasalazine, Methotrexate, Arava (only a short time, the side effects and time I needed to be off it before conceiving scared me), Plaquenil (the most bitter tasting drug - ever), Imuran, Naproxen, Prednisone, Enbrel. Hmmm. Quite the list.
My current combo of Enbrel, Voltaren, Methotrexate and 1 mg of Prednisone seems to be ok for now. Writing this entry was like taking a trip down memory lane - revisiting old friends I met along my RA path. Whew, there are a lot of them...
Thursday, March 11, 2010
How are you?
For most of my RA life, I was of the opinion that when people asked "how are you" they really just wanted to hear "good". Most people don't want to hear anything else, it's a rather superficial transaction - most of the time. Some people want actually hear how you are - but not that many. Really. So, I provided the requisite answer of "good" (insert bright, but fake smile here) and kept trucking along with my RA on the down-low.
For those who really wanted to know, I try for a bit of honesty mixed with some humour to make it not as big of a deal. Even with close friends, I don't really talk about my RA. It can get depressing for me, let alone anyone else.
I'm not so sure I employed the best strategy, but I didn't really see another option. People don't really want to hear about it, so I really didn't talk about it. For years. To anyone (almost). And to see my life from the outside, I would doubt that you would know. But I knew and bottled it all up. Now I'm sorting through all of my feelings, thoughts, ideas and emotions about RA.
But, in some ways, I would be better served in my life if I actually told a few more people when I was having a crappy day and asked for help. It turns out - people like to help. Really. All you have to do is ask.
I think through blogging, sending my blog link to friends and family, I have started a dialogue about where I'm at and what's on my "RA" mind. I can talk, they can listen if they want to. It's a rather passive method of communication, and I'm more comfortable with that. And since I haven't really talked about it for the first 18 years of my diagnosis - some of these posts are rather overdue.
For those who really wanted to know, I try for a bit of honesty mixed with some humour to make it not as big of a deal. Even with close friends, I don't really talk about my RA. It can get depressing for me, let alone anyone else.
I'm not so sure I employed the best strategy, but I didn't really see another option. People don't really want to hear about it, so I really didn't talk about it. For years. To anyone (almost). And to see my life from the outside, I would doubt that you would know. But I knew and bottled it all up. Now I'm sorting through all of my feelings, thoughts, ideas and emotions about RA.
But, in some ways, I would be better served in my life if I actually told a few more people when I was having a crappy day and asked for help. It turns out - people like to help. Really. All you have to do is ask.
I think through blogging, sending my blog link to friends and family, I have started a dialogue about where I'm at and what's on my "RA" mind. I can talk, they can listen if they want to. It's a rather passive method of communication, and I'm more comfortable with that. And since I haven't really talked about it for the first 18 years of my diagnosis - some of these posts are rather overdue.
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