I had my 3 month check up today. It was very busy so I had to wait almost 45 minutes to be seen and I forgot to bring a book which left me having to stare at things/people in the waiting room the whole time. I like to get in and out of there as quickly as possible because to be honest the place depresses me. I'm always the youngest person there, occasionally there is someone in their 30s or 40s but it's mostly middle aged or elderly ladies. I know they must have young patients too but in the 10 or so times I've been to the clinic I've never seen one! A lot of people shuffle about or use walking sticks and some have visible deformities.
I don't like going there because it scares me.
I also don't like going there because they weigh me every time and today they informed me that I have put on 3kg since october!! Stupid Christmas weight. I resolved to sort that out but then I was so depressed from being in the hospital that I had to buy some chocolate to cheer myself up. It's a vicous circle, I tell you!
Anyway, I didn't get to see Dr A, I guess because it was so busy. I had a young, pretty registrar instead which was nice! She said the same thing as Dr A, that it's not too clear if I need methotrexate or not. I am in a good prognostic category and I dont have any swelling just now but there is intermittent activity (like the mad pointer finger in dec) so obviously it's not all under control. What they're gonna do is send me for new x-rays since it's been a year since the last ones. If there's any change at all they'll stick me on mtx. If there's nothing and my symptoms continue as they are then we'll probably just wait...and see.
So I have to go back and get an xray at some point before my next check up in May. I'd be quite surprised if there was any change in my xrays since I havent had a great deal of pain/swelling but I know it is possible for that to happen.
So yeah.. long rambling post. But in summary - hospital waiting rooms are evil, I need to lose 3kg, I can still drink until at least May and I have to get zapped by the radioactive machine again. Overall...alright I suppose.
Monday, 31 January 2011
Saturday, 29 January 2011
weird
This is the weirdest illness in the world. One day you can't walk half an hour without pain then the next you're out dancing all night and walking home 2 miles. How can you ever get used to that? The way I try to deal is just try and do everything and if I can't then go home. But then there are the amazing days like today that I feel like a normal 25 year old and it makes me feel humble and grateful. I can't believe people take this for granted. I did too. It's such a sobering thought. I can't believe I did this tonight. Sorry to go on about it but i've been having foot troubles since october so this is quite incredible. Yay.
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Sunday, 23 January 2011
My weekend in photos
What a lovely weekend. I couldn't feel happier going into the week.
Started on Friday night with a lovely dinner at a Kurdish restaurant in Edinburgh for a friend's birthday:
Catching up with a lot of people I don't get to see often anymore, great silly banter and perhaps a little bit too much of this:
Saturday was spent shopping around my neighbourhood for bits and bobs and tidying my house, as well as watching a few interesting documentaries. In the evening, I headed out for a few drinks for another friend's birthday and then to a friend's house to watch French films, in anticipation for our trip to Paris next month:
A lovely bottle of champagne (all in the aid of researching french culture) was also consumed:
Today we slept in late and grabbed a late lunch in a bistro in the West End of Glasgow where I had a delightful veggie full breakfast and an even more delightful cupcake for dessert:
We also spotted a celebrity, in the form of very famous Scottish comedian Frankie Boyle:
We then had a stroll around a vintage market which takes place in this bar/restaurant every Sunday where I purchased a lovely necklace:
And to round up the weekend I went to see the King's Speech at the cinema which was very enjoyable:
Just a wee reminder to myself for when I'm down in the dumps that my life can be and often is really good. :)
Started on Friday night with a lovely dinner at a Kurdish restaurant in Edinburgh for a friend's birthday:
Catching up with a lot of people I don't get to see often anymore, great silly banter and perhaps a little bit too much of this:
Saturday was spent shopping around my neighbourhood for bits and bobs and tidying my house, as well as watching a few interesting documentaries. In the evening, I headed out for a few drinks for another friend's birthday and then to a friend's house to watch French films, in anticipation for our trip to Paris next month:
A lovely bottle of champagne (all in the aid of researching french culture) was also consumed:
Today we slept in late and grabbed a late lunch in a bistro in the West End of Glasgow where I had a delightful veggie full breakfast and an even more delightful cupcake for dessert:
We also spotted a celebrity, in the form of very famous Scottish comedian Frankie Boyle:
We then had a stroll around a vintage market which takes place in this bar/restaurant every Sunday where I purchased a lovely necklace:
And to round up the weekend I went to see the King's Speech at the cinema which was very enjoyable:
Just a wee reminder to myself for when I'm down in the dumps that my life can be and often is really good. :)
Monday, 17 January 2011
Something different
I've been posting a lot about negative things lately. I'm boring myself. Tonight, I thought I'd share with you a painting by an artist I love, Vladimir Kush. This painting makes me feel light and dreamy. Shame I cant find a bigger resolution image.
Enjoy!
Enjoy!
Saturday, 15 January 2011
Crazy lady?
Ok, I know that RA makes us all feel a little crazy sometimes.
Tonight is one of those times.
Before I tell you my story, I want to state that I know 100% that my disease is real and that my symptoms aren't in my head. But sometimes, like tonight, the thought does cross my mind.
Ok so, I was out with friends for a birthday night out. We went to dinner, then a bar, then a club. I was fine until about an hour and a half into the club (where there were no seats) and I could start to feel my right foot toes tingling, which for me means...uh oh..swollen toes are coming very soon. So I waited a bit, it was getting worse, so I made my excuses to leave.
Nothing strange so far..BUT..the reason I'm really confused is this. 2 days ago I was in London with work, on a fashion shoot. I spent all day in airports, then on my feet for about 6 hours filming, then airports again. And it was only in the airport queue for security on the way home that I noticed anything funny about my feet.
Where as tonight, all it took was an hour and a half. Yes, of course the disease varies from day to day, I know this. But what confuses me is this - I was REALLY bored tonight in the club. The music was crap, the chat was crap and I just didn't want to be there. On the shoot, I was having a blast and was really busy working and not really thinking about anything else.
So....even though I KNOW it's silly and it's not in my head.. is it any wonder that sometimes I question myself?? I can't help but notice a pattern...if I really want to do something and I'm enjoying myself I get through it better. If I'm bored and want to go home anyway, my foot seems to swell more.
I don't know what to make of it. Am I unconsciously using my RA as an excuse to leave things I don't want to do? Or is it just a coincidence that my flares happen during dull nights out? I'm definitely not imagining the flares. But I wonder if somehow I pay attention to them more when I'm not having fun. I think I'm going mad. Oh well! Stupid disease.
Tonight is one of those times.
Before I tell you my story, I want to state that I know 100% that my disease is real and that my symptoms aren't in my head. But sometimes, like tonight, the thought does cross my mind.
Ok so, I was out with friends for a birthday night out. We went to dinner, then a bar, then a club. I was fine until about an hour and a half into the club (where there were no seats) and I could start to feel my right foot toes tingling, which for me means...uh oh..swollen toes are coming very soon. So I waited a bit, it was getting worse, so I made my excuses to leave.
Nothing strange so far..BUT..the reason I'm really confused is this. 2 days ago I was in London with work, on a fashion shoot. I spent all day in airports, then on my feet for about 6 hours filming, then airports again. And it was only in the airport queue for security on the way home that I noticed anything funny about my feet.
Where as tonight, all it took was an hour and a half. Yes, of course the disease varies from day to day, I know this. But what confuses me is this - I was REALLY bored tonight in the club. The music was crap, the chat was crap and I just didn't want to be there. On the shoot, I was having a blast and was really busy working and not really thinking about anything else.
So....even though I KNOW it's silly and it's not in my head.. is it any wonder that sometimes I question myself?? I can't help but notice a pattern...if I really want to do something and I'm enjoying myself I get through it better. If I'm bored and want to go home anyway, my foot seems to swell more.
I don't know what to make of it. Am I unconsciously using my RA as an excuse to leave things I don't want to do? Or is it just a coincidence that my flares happen during dull nights out? I'm definitely not imagining the flares. But I wonder if somehow I pay attention to them more when I'm not having fun. I think I'm going mad. Oh well! Stupid disease.
Friday, 7 January 2011
2011
It's that time of year when we think about the months ahead, and if you're anything like me you'll be feeling a mixture of hope and apprehension.
I mostly can't wait for winter to be over. It's NOT my season. I feel like since October I've been going downhill. I had a relationship break up, my arthritis has been more active and I've neglected my exercise and diet. In short, I feel like crap. Boo hoo! Oh and to top it off I'm choked up with a bad cold just now. *cue violins*
But at the same time I don't feel nearly as bad as I did this time last year. As much as I have to admit to having my down times, mentally I'm generally coping better. I'm looking forward to the year ahead and I'm sure that once the weather warms up and the days grow longer I will find myself rejuvinated. I love Spring, it brings me joy and hope. I can't wait to see the world wake up from the long dark of winter.
So here are some positive things which I can't wait for this year:
A trip to Paris with my friends in February.
A spa weekend with my mum.
Getting back on my bike once the snow clears and doing some long country rides.
Wearing sandals.
BBQs.
A girly holiday to somewhere sunny in June.
Working with my doctor to decide on the best treatment plan going foward.
Formulating some sort of plan about where my career is heading.
Yup, I think it's gonna be an alright year. You heard it here first!
I mostly can't wait for winter to be over. It's NOT my season. I feel like since October I've been going downhill. I had a relationship break up, my arthritis has been more active and I've neglected my exercise and diet. In short, I feel like crap. Boo hoo! Oh and to top it off I'm choked up with a bad cold just now. *cue violins*
But at the same time I don't feel nearly as bad as I did this time last year. As much as I have to admit to having my down times, mentally I'm generally coping better. I'm looking forward to the year ahead and I'm sure that once the weather warms up and the days grow longer I will find myself rejuvinated. I love Spring, it brings me joy and hope. I can't wait to see the world wake up from the long dark of winter.
So here are some positive things which I can't wait for this year:
A trip to Paris with my friends in February.
A spa weekend with my mum.
Getting back on my bike once the snow clears and doing some long country rides.
Wearing sandals.
BBQs.
A girly holiday to somewhere sunny in June.
Working with my doctor to decide on the best treatment plan going foward.
Formulating some sort of plan about where my career is heading.
Yup, I think it's gonna be an alright year. You heard it here first!
Tuesday, 4 January 2011
Arthritis Home Test
I was just reading through my daily 'rheumatoid arthritis' google alerts when an article popped up saying that this is now on the market:
http://www.arthritishometest.com
Yes, folks! A home test for arthritis. I was puzzled too. Basically it's a home antiCCP test that you can purchase for a mere £25.
I'm really not too sure what I think about this. I guess it's good to have something to show rubbish GPs who dismiss symptoms, but surely we shouldn't be responsible for doing our own DIY diagnostic tests when we pay taxes for our health service??
I'm also worried that even though it mentions it's not always accurate, people who don't really know the ins and outs of RA but have the symptoms will purchase the test, it'll be negative and then they'll go "oh it's ok, I dont need to go to the doctor because the test says I'm fine".
It's made by 'Euro-Diagnostica' who from their website appear to be a large legitimate company supplying diagnostic tools to hospitals, etc. It is quite strange they've marketed this, I'm not sure what its purpose is. I guess making money out of the paranoid hypochondriacs and the poor desperate people who are getting nowhere with their diagnosis.
Although I did have to wait about 3 weeks for my antiCCP to come back (negative)..for 25 quid I could've done it in 10 minutes. Way hey!!
What do you think of this?? Do you think a GP would take notice if a person with joint problems who they've previously sent on their way came back with a positive one of these?
http://www.arthritishometest.com
Yes, folks! A home test for arthritis. I was puzzled too. Basically it's a home antiCCP test that you can purchase for a mere £25.
I'm really not too sure what I think about this. I guess it's good to have something to show rubbish GPs who dismiss symptoms, but surely we shouldn't be responsible for doing our own DIY diagnostic tests when we pay taxes for our health service??
I'm also worried that even though it mentions it's not always accurate, people who don't really know the ins and outs of RA but have the symptoms will purchase the test, it'll be negative and then they'll go "oh it's ok, I dont need to go to the doctor because the test says I'm fine".
It's made by 'Euro-Diagnostica' who from their website appear to be a large legitimate company supplying diagnostic tools to hospitals, etc. It is quite strange they've marketed this, I'm not sure what its purpose is. I guess making money out of the paranoid hypochondriacs and the poor desperate people who are getting nowhere with their diagnosis.
Although I did have to wait about 3 weeks for my antiCCP to come back (negative)..for 25 quid I could've done it in 10 minutes. Way hey!!
What do you think of this?? Do you think a GP would take notice if a person with joint problems who they've previously sent on their way came back with a positive one of these?
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