I had my 3 month check up with my rheumatologist yesterday. I was glad to see her, she's cool and very nice.
We talked about how I'd been feeling very well all summer with no inflammation, but the past couple of weeks I've had a couple of little flares in my right foot and also a bit of stiffness creeping back into some of the joints on my right hand.
We're going to see how this develops until my next appointment in January, if it gets worse I'm to give her a call and we'll consider our options. If I am not back in 'remission' or whatever by January I think she'll consider adding a small bit of methotrexate to my plaquenil. UGH. I hope it doesn't come to that, but I'll take whatever i have to in order to feel normal.
I don't know why but going to the hospital always makes me feel like crying afterwards. Even if nothing bad happened. I haven't cried about my RA since about april and I didn't cry yesterday but it was the closest I've got for months.
Why won't it just go away..sigh.
On the positive side, I'm going to Berlin tomorrow for 4 days to visit a friend. I'm super excited, everyone keeps telling me what a cool place it is. I hope my foot will behave. The doc gave me a perscription for lodine, an anti inflammatory. She said to take that for the next few days while I'm away cos I'll be doing a lot of walking.
I took naproxen for a month or two and didn't notice any difference but maybe i'll give this a go.
Anyway, au revoir, auf wiedersehen and goodbye! I'm leaving on a jetplane...
Tuesday, 26 October 2010
Saturday, 9 October 2010
Mini flare
Hmm so I'm 3 months into starting plaquenil. From what I've been told, if it works for me it's supposed to start kicking in about now, with the maximum effect being reached at 6 months.
I've got my 3 month check up at the hospital in 2 weeks and I know they'll ask me if I think it's helping. Trouble is, I have no idea.
As I've said before, I've had a pretty good 6 months with only minor complaints. This past week I've had the worst 'mini flare' I've had since april and it affected my foot and right hand but I thought it was going to get a lot worse and last weeks like it did last winter, instead it fizzled out after about 2-3 days. So I wonder whether that was the plaquenil helping?? Or maybe it was just a mini one anyway. I have no idea.. how do you know if a med is working or if it's just the natural ebb and flow of the disease??
I've got my 3 month check up at the hospital in 2 weeks and I know they'll ask me if I think it's helping. Trouble is, I have no idea.
As I've said before, I've had a pretty good 6 months with only minor complaints. This past week I've had the worst 'mini flare' I've had since april and it affected my foot and right hand but I thought it was going to get a lot worse and last weeks like it did last winter, instead it fizzled out after about 2-3 days. So I wonder whether that was the plaquenil helping?? Or maybe it was just a mini one anyway. I have no idea.. how do you know if a med is working or if it's just the natural ebb and flow of the disease??
Tuesday, 5 October 2010
Forgetting
I was hanging out with my flatmate the other night and for some reason we were talking about MS, and she mentioned that out of her mum's best friends from high school her mum was ok health-wise, one of the others had cancer, another had a series of heart problems and the last had MS. And then she said "Imagine, that could be us one day, scary!!" and I went...."Um, well.. I already have a disease, remember?" and then it got a bit awkward and quiet and we changed the subject.
I honestly believe she forgot. She was right there last year during my diagnosis and saw me crying my eyes out and going through the motions. And she read up on RA so it's not like she's ignorant about it. But I honestly think she meant no harm and just because I've been well and haven't mentioned my arthritis for months she just forgot. Or maybe she doesn't think it's as serious as cancer or MS? I don't know.
I wish I could forget too, unfortunately even though I'm well there is still something to remind me of it most days. I wonder what everyone that knows about my RA thinks. I was a MESS, seriously..for like 3 months I was an emotional wreck. And now I'm back to normal I guess. I wonder if they think I made a big deal out of nothing, just because I now don't mention my daily problems. And yes, those problems have decreased significantly and my mood has lifted as well. I hope they don't think I made it all up. I wish I had!!!
I honestly believe she forgot. She was right there last year during my diagnosis and saw me crying my eyes out and going through the motions. And she read up on RA so it's not like she's ignorant about it. But I honestly think she meant no harm and just because I've been well and haven't mentioned my arthritis for months she just forgot. Or maybe she doesn't think it's as serious as cancer or MS? I don't know.
I wish I could forget too, unfortunately even though I'm well there is still something to remind me of it most days. I wonder what everyone that knows about my RA thinks. I was a MESS, seriously..for like 3 months I was an emotional wreck. And now I'm back to normal I guess. I wonder if they think I made a big deal out of nothing, just because I now don't mention my daily problems. And yes, those problems have decreased significantly and my mood has lifted as well. I hope they don't think I made it all up. I wish I had!!!
Friday, 1 October 2010
Strange discovery
I was at a dinner party a few days ago and it was a friendly bunch of us that have known each other for quite a few years. The wine and conversation were flowing and everyone was having a great time. I was expecting the good company, food and banter, but what I definitely wasn't expecting was to discover that one of my good friends also has arthritis.
This friend had been in hospital recently with a really bad case of..something to do with inflammation of the stomach. I asked what they thought it was, and she said, 'They're not sure. I just hope it's not my arthritis coming back.' This friend did not know about my diagnosis as I've only told about 10 close friends. When she said that I of course questioned her and said I had arthritis too. It was all a bit strange since I've known this girl for about 4 years and she is THE most energetic/busy/sociable person I know. She works as a sales executive for a magazine so she's out schmoozing and partying with prospective clients every night.
Basically her story was, she got JRA when she was about 11, had it pretty damn bad until she was 18 and then it went away. She's now about 29-30. She was on methotrexate when it was still being trialed, but hasn't been on meds for a long time now. She says she's not sure if the stomach thing is to do with the arthritis but she's been getting a lot of pain in her knees and hands so she thinks it's coming back. She's going for tests etc in the next few weeks.
I was really stunned! First of all I can't possibly imagine her, the life and soul of the party, being ill or tired or unwell in any shape or form. Second of all, I dread to think how horrific she must feel just now and how scared she must be that it could all be starting up again after such a long remission.
I said to her that she can come talk to me anytime, even though she probably has a lot more experience of arthritis than I do. Still, it must be different as an adult.
How very very unexpected.
This friend had been in hospital recently with a really bad case of..something to do with inflammation of the stomach. I asked what they thought it was, and she said, 'They're not sure. I just hope it's not my arthritis coming back.' This friend did not know about my diagnosis as I've only told about 10 close friends. When she said that I of course questioned her and said I had arthritis too. It was all a bit strange since I've known this girl for about 4 years and she is THE most energetic/busy/sociable person I know. She works as a sales executive for a magazine so she's out schmoozing and partying with prospective clients every night.
Basically her story was, she got JRA when she was about 11, had it pretty damn bad until she was 18 and then it went away. She's now about 29-30. She was on methotrexate when it was still being trialed, but hasn't been on meds for a long time now. She says she's not sure if the stomach thing is to do with the arthritis but she's been getting a lot of pain in her knees and hands so she thinks it's coming back. She's going for tests etc in the next few weeks.
I was really stunned! First of all I can't possibly imagine her, the life and soul of the party, being ill or tired or unwell in any shape or form. Second of all, I dread to think how horrific she must feel just now and how scared she must be that it could all be starting up again after such a long remission.
I said to her that she can come talk to me anytime, even though she probably has a lot more experience of arthritis than I do. Still, it must be different as an adult.
How very very unexpected.
Monday, 27 September 2010
Diary 2
On a lighter note, here's something else I found in my diary from 2009. I think I'd just broken up with my ex and had a series of bad dates.
The entry is titled "Upon reflection of recent disasters, here is what I am looking for..is it too much to ask for?!:"
1. NOT insane (insanity covering: strange mood swings, long periods of not talking, playing mind games, asking strange questions, self harming, depression, self obsession, clingy behaviour, paranoia, inability to commit)
2. Funny
3. Fairy attractive and a good dresser
4. Smart but not too 'i think i know everything and i love to talk about boring shit' smart
5. Book lover
6. Likes to travel
7. Likes to have a laugh and not pretend to be someone they're not
8. Good cook
9. Has some sort of ambition
10. Actually likes me and finds me attractive but doesnt obsess. Likes me just the right amount.
11. Likes cats
That's all I can think of just now.
Haha. Man, almost 2 years on and I am STILL single and STILL having terrible terrible dates. Maybe I have to shorten my list and settle for a fat slob who can at least cook and has a cat?
The entry is titled "Upon reflection of recent disasters, here is what I am looking for..is it too much to ask for?!:"
1. NOT insane (insanity covering: strange mood swings, long periods of not talking, playing mind games, asking strange questions, self harming, depression, self obsession, clingy behaviour, paranoia, inability to commit)
2. Funny
3. Fairy attractive and a good dresser
4. Smart but not too 'i think i know everything and i love to talk about boring shit' smart
5. Book lover
6. Likes to travel
7. Likes to have a laugh and not pretend to be someone they're not
8. Good cook
9. Has some sort of ambition
10. Actually likes me and finds me attractive but doesnt obsess. Likes me just the right amount.
11. Likes cats
That's all I can think of just now.
Haha. Man, almost 2 years on and I am STILL single and STILL having terrible terrible dates. Maybe I have to shorten my list and settle for a fat slob who can at least cook and has a cat?
Saturday, 25 September 2010
Diary
Today I happened to read through my diary which I kept when I was going through the months of diagnosis (december to march). I can't believe how depressed and scared I was. Well, I can. Because it's a scary and depressing thing to go through. But it almost seems I've blocked a lot of it out, so it's amazing to be able to read through a diary from that time. It's also really interesting to read about the development of my symptoms. I know that I am a lot better now, but reading through all that made me realise just how incredibly better I am.
There's a lot about waking up at night with fevers and muscle pains and pins and needles. No wonder I was freaked out. There was one particular entry which talks about how upset I got when I was coming home from work and decided to go to the supermarket and by the time I'd finished my shopping my feet were really sore and I got really frustrated and upset with myself. That must've been a 15 - 20 minute walk at the most. Wow. It's weird but it's almost like I've blocked all that out. When I read it back I do remember it, but it's a bit like it happened to another person, or a horrible nightmare.
I don't know if the plaquenil is helping (I'm now on week 11 so it should be starting to kick in..hmm), or if the past 6 months have just been a natural almost-remission but whatever it is, I'm grateful not to be in that state anymore. It's scary to think I might go back there one day, or that it actually could be much much worse. But for now I'm going to enjoy being fit and well and hopefully this winter will be much better than the last.
There's a lot about waking up at night with fevers and muscle pains and pins and needles. No wonder I was freaked out. There was one particular entry which talks about how upset I got when I was coming home from work and decided to go to the supermarket and by the time I'd finished my shopping my feet were really sore and I got really frustrated and upset with myself. That must've been a 15 - 20 minute walk at the most. Wow. It's weird but it's almost like I've blocked all that out. When I read it back I do remember it, but it's a bit like it happened to another person, or a horrible nightmare.
I don't know if the plaquenil is helping (I'm now on week 11 so it should be starting to kick in..hmm), or if the past 6 months have just been a natural almost-remission but whatever it is, I'm grateful not to be in that state anymore. It's scary to think I might go back there one day, or that it actually could be much much worse. But for now I'm going to enjoy being fit and well and hopefully this winter will be much better than the last.
Tuesday, 14 September 2010
Stupidity
Forgot to write about this!! It made me laugh.
At my friend's wedding on Saturday I was talking to this woman in her late 20s about my bike ride the next day. She asked who I was fundraising for and I replied that it was for Arthritis Care.
To which she said: "Awwww... that's sooo nice. I've always wanted to, like, help old people."
Ahahahaaaaaaa. I really wanted to tell her I AM one of those 'old people' with arthritis. But causing a scene at my friend's wedding didn't seem worth it just to see the horrified expression on her face.
At my friend's wedding on Saturday I was talking to this woman in her late 20s about my bike ride the next day. She asked who I was fundraising for and I replied that it was for Arthritis Care.
To which she said: "Awwww... that's sooo nice. I've always wanted to, like, help old people."
Ahahahaaaaaaa. I really wanted to tell her I AM one of those 'old people' with arthritis. But causing a scene at my friend's wedding didn't seem worth it just to see the horrified expression on her face.
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