Tuesday, 28 December 2010

Finger fun

Hope you all had a lovely Christmas! Mine was wonderful, I ate waaaay too much and drank waaaaay too much and just chilled out with the family.

Just wanted to do an update on my hand. I went to get my injection on Thursday morning, and I was pretty nervous but a close friend came with me so that kept the mood lighthearted. The visit was also made more exciting by the fact that a quite famous Scottish celebrity was in the rheumatology clinic at the same time as me. I can't really say who because that would be disrespectful to the person's privacy, but it was quite a random thing to happen. I tried to question my doc about it but she wouldnt tell me the gossip (of course!) and just said that the doctors at my clinic are very well respected so we get a lot of people choosing to go there. Well..that's a relief then! I can't find anything on the internet about this person in relation to arthritis, so I'm not sure if it was maybe an initial visit for a diagnosis or maybe their symptoms are very well controlled and not much is known publicly.

Aaaaaanyway... the injection was fine, I flapped about lots stressing out but the doc put some numbing cream on it (which looked a lot like mayo) and after about 40 minutes the finger was ready to be injected. She didn't need to drain anything, just shove the steroid in. I was really surprised at how little it hurt, maybe because of the cream or she just got the exact spot. It felt a bit strange when the steroid went in and that was it.

They said it takes about 24-48 hours to work. The next day I wasn't noticing any improvement, and I felt a bit depressed on Christmas morning because it still wasn't better (perhaps it was even a bit worse) but then about 50 hours after the injection.... A CHRISTMAS MIRACLE happened. About 7pm it just started shrinking. By the time I went to bed i had about 80% bend back.

So now we're on..day 5 since the injection and I had 95% bend on it this morning and almost 100% by this evening. So happy!

I don't know how long it'll last but I'm hoping that by the time it wears off I'll be over the flare... I have a check up at the end of January so we'll see what happens by then before discussing if I need a change in meds. My feet are still misbehaving on a regular basis. But for now...yaayy the finger's sorted!

Sorry this has been a big post about not much, but since it was my first injection and first experience with a steroid I felt I had to write about it.

Here are some pics of its progress:

This was it in all its beauty at some point last week before the injection


This was it on Friday, a day after the injection looking worse.. and the middle finger joining in a bit for a laugh.


And this is it today....yaaaay


Just as a comparison this is my left hand, which has never swelled so yeah.. the right hand is *almost* back to normal.


Strange, the joy you can feel at such a small thing that you know is probabaly a temporary improvement.. but it still makes me so happy!

Happy New Year to you all!

Wednesday, 22 December 2010

Injection

Ok. This finger flare is getting out of control - can barely move at the DIP and PIP joints at all and all the tendons are massively inflamed. It looks like a german sausage. Strangely not that painful, but completely useless and almost stuck in a half bent position.

I have an appointment tomorrow with my rheumatologst and I highly suspect she'll inject steroids into it.

I am pretty terrified, never had this done but can't imagine it's pleasant. Will let you know how it goes. Merry Christmas to me!

Sunday, 19 December 2010

Positivity

I've been posting a lot lately but I guess with this flare RA is really on my mind.

Lately I've been thinking about positivity and my own attitude towards life. I am not a positive person and never have been. I seem to always worry about things and assume the worst will happen, even though most of the time things tend to work out ok and my life is pretty amazing apart from the RA.

So I guess it's a mystery why I am so fortunate in many ways, yet I remain a pessimist. I try hard to overcome this as I feel it's causing me endless hours of misery which are self inflicted and unnecessary. I also project a very strong, happy image of myself and unless you know me well you would think I was a very outgoing, cheerful person. In reality I spend a lot of my 'alone' time stewing over things and generally being a grumpy git.

To be fair, in the last year I know I've changed in the way that I dont tend to worry or stew over the 'little' things as much. That is one positive change. But instead I spend my days worrying about my disease. I feel this is especially true in the winter where I have less motivation to go out and do things to distract myself. The last couple of months I've really felt myself sinking back into a bit of a depression although not nearly as bad as when I was diagnosed.

I think with RA in my life, I really need to work on this and find a way to change. So much easier said than done. I need to stop seeing things in black and white. I also need to stop throwing myself pity parties and think less about myself. When I start thinking these types of 'negative' thoughts I need to somehow be able to cut myself off and do something else.

Has anyone else struggled with this? I know everyone with RA struggles with worries about the future, how could we not? But some are just positive people naturaly and perhaps others have life experience which has taught them how to be positive. I hope I can become the latter. Any ideas how??

Friday, 17 December 2010

ihatepeople

Boss at work today walks up to my desk and notices my pen that I use for editing in Photoshop.

Boss: "Whoa! Look at the way you hold that pen!"
(note, I currently hold my pen between my pointer and middle fingers, which I started doing a few months ago after a flare in my thumb. And now my pointer finger is a big swollen mess so I can't lean the pen on it so this is the only way to work. anyway...)
Me: "Yes."
Boss: "Ha, it looks like a CLAW the way you're gripping that!!"
Me: "(Silence)"
Boss: "Ha..you don't seem to like that.." *walks away pleased with his little joke.*

Ugh. Yes. A claw. Great choice of words. Because it's not like I've spent countless restless nights having nightmares about ending up an old woman with twisted claw-like hands. Thanks, boss. He knows I have arthritis too, but it seems he has forgotten. Ignorant ass.

Thursday, 16 December 2010

Letter to myself

Dear RA,

Ok, we had a lovely summer, peacefully ignoring each other's paths. I've also tolerated your relatively feeble yet persistant attack on my foot for the past 2 months. I'm a patient woman and I thought we could keep our peace treaty. But now that you've decided to again overstep your bounds and attack my pointer finger (which I need, quite a lot, thank you very much!) I am officially at war with you again.

I don't know what you're playing at, doing this just before Christmas, but if you don't back off by Monday I will be calling Dr A and then you'll be sorry.

BYE.

no kind regards,
A very angry and slightly upset Squirrel

Monday, 13 December 2010

Anti inflamms

Ok, so after a stubborn 2 month wait for this sort of mini flare in my foot to go away, I'm finally giving in. I'm going to give the anti inflammatories my rheumy gave me last time a go.

It's Etodolac (Lodine). The reason Im not keen on taking them is, first of all, I like a wee drink and I dont think those mix well with alcohol in the stomach. Second of all, the flares dont happen every day so I wonder if there's any point taking the pills every day.

So here's my question - how do these anti inflamms work? Are they like DMARDs which take a while to build up, or are they meant to be instant relief (within a couple of hours i mean)?

If they're meant to be instant relief, then there's no point me taking them because they dont make a difference. I tried naproxen before too and it didnt work.

But maybe I'm meant to take them for a long period of time??

Any advice would be greatly appreciated, I forgot to ask my doctor. :)

Friday, 10 December 2010

Perfect Day

Today was one of those wondeful days where I could almost forget I have RA. The only reason I was reminded of it was because I'm so thankful.

I mean, don't get me wrong. Compared with a LOT of people, my symptoms are nothing. I don't even really know what proper RA is like. But still, most days, I know there's something not quite right.

Today, however, was wonderful. My hands weren't stiff when I woke up, I had no aches and pains all day and I danced and stood on my feet for hours without any problem at all.

I am so thankful for this day.

That's all.

Wednesday, 8 December 2010

Snowed in



Well it's another 'snow day' off from work. The photo above is actually from central Scotland the past few days.

The weather's been crazy, we had 3 snow days last week and it looks like we won't be able to go back to the office until friday. The motorways are closed in parts and there's ice and deep snow everywhere.

Trying to work from home but it's difficult as my laptop is pretty slow and cant handle the photo and video editng software I use for work.

It's -14 C outside and it's almost lunchtime. Insane. It's never this cold here, never!

My poor feet are suffering a bit lately but I'm just thankful it's not my hands.

Oh well.. day in bed.. can't really complain!

Tuesday, 30 November 2010

Anniversary


Tomorrow is my 1 year RA anniversary. 1 year ago exactly, I was a totally normal healthy 23 year old.

How bloody depressing.

I remember waking up on the 1st december with these 2 strange swollen knuckles and thinking a big spider or something had bitten me during the night.

I remember the absolute terror and depression which gripped me for the next few months after discovering that I had a chronic uncurable disease.

It was horrible, just horrible. As I'm sure you all know yourselves.

Where am I at 1 year later? A lot calmer, for sure, even though the whole thing still really gets me down if I stop and think about it.
Most of the horrible fears I had last December haven't come true. I deal with some symptoms most days but I generally feel alright and my life is pretty much the same as it was last year.

I've had a good year, I've travelled to many new places and had a lot of fun with my friends and family.
I've met some incredible people through Arthritis Care who have helped me face my condition head on.
I set myself a physical challenge in doing the charity cycle, and I succeeded.

I'm looking forward to Christmas, knowing it will be a LOT better than the last. It can't possibly be any worse!!

Unfortunately I think the hydroxychloriquine is doing bugger all for me. My symptoms are mild and come and go but I think that's just my disease because nothing's changed since I started the drug 4 and a half months ago. No better, no worse. The sulfa didn't agree with me, so I'm starting to try and come to terms with the fact that I might have to try a low dose of methotrexate in the new year. This is something I have to mull over the next couple of months before my check up at the end of January and I need to come to a decision together with my doctors. I know that the decision will be to try it because I really want to continue living my life well. But I need a little while to get used to the idea.

This reality would've scared the hell out of me a year ago. And it still does, but I feel stronger now.

So, happy anniversary, RA. I will continue to fight you and hope you go to sleep for a very long time so that next year, I won't even remember it's our anniversary.

Friday, 12 November 2010

Mother

It's been raining every day since I got back from Berlin, it's ridiculous. I hate winter!!!

My mum came through to Glasgow to visit me the other night and we went out for a nice meal and got quite tipsy on lovely wine. It was nice to see her, as always, but interestingly we had a chat about my arthritis. Not a very in depth chat, but more than we have for about 6 months. She asked how 'my hands' are (she never says arthritis, it's always my 'hands'). I told her about my dodgy foot lately and how I think it's settling down a bit and then told her about my recent rheumatology appointment. She took it all in and said to me: 'Don't think I'm not worried if I don't talk about it, because I am. It's just I know there's nothing I can do to help apart from be there for you. I'm glad you have a good doctor.'

And then FINALLY, she said she had an appointment with her GP next week to ask her to run blood tests for RA. You see, for about 3 and a half years my mum's had problems with her legs. She had some swelling in her knee and ankle a while back and just general pain. She gets quite stiff as well and I'm totally convinced she has arthritis too. Only question is whether it's osteo or rheumatoid and since I have rheumatoid I'm guessing she might too. Her doctors have been quite useless so far, just giving her insoles for her shoes and what not. But I guess since she's 57 and it's her lower body they'd automatically assume osteo.

Thing about my mother is, she's horrifically stubborn. She never complains and she concentrates on other people. She runs about like a headless chicken doing a thousand things and I've been getting on at her for about a year to go to the doctor and ask about blood tests. I get so worried about her but she just shrugs it off. She's the opposite of me, I panic at the slightest health problem and need to go sort it right away. She prefers to ignore it. Both extremes are bad in their own way.

I don't know if I hope it's osteo or rheumatoid. At least with rheumatoid there are treatments she can try. But at the same time I wouldn't want to see my mum in the same horrible situation as me, taking lots of drugs and god knows what. But the point is, she definitely has something going on and it's not going away and in the past year I've become quite pragmatic about these things. No point hiding away, you gotta stand up for yourself and face your fear head on.

I think the thought of my ma having RA upsets me more than me having it. Even though she's not diagnosed with anything she has a lot more problems than I do with stiffness and pain and at least I'm an energetic young thing, I feel like I'm pretty fit and have more energy to battle it, you know? And I've faced it from day 1 and am doing all I can with my doctors to prevent damage. Who knows how much damage my ma's got in the past 4 years. But then I guess at least she had 53 years free from it where as I only had 23.

Ok this is getting to be a really long serious post. It's not all doom and gloom, to be honest I think her going to the doctor is a positive thing and hopefully she can get some relief in the next year or so. And we're both still active and relatively well and there's no point worrying about what might happen.

And it's the WEEKEND!! And I'm going to visit friends down south in Brighton and I have Monday off work. So..hooray!
Have a good one, folks.

Thursday, 4 November 2010

Berlin

Can I just say, what a cool place! Pubs are open all night, you can take your drink outside and no one looks at you like you're mad. The city, being basically built up from ruins after WW2, doesn't boast amazing architecture, but because of this every second building has become an art installation with amazing graffiti murals.

Yeah it was great fun and really really cheap. I only spent about 120 euros in 4 days and man, those Berliners know how to party. They go out to clubs at 2am (normally when in Scotland you're about to go home) and when we left about 6am the club was still full.

Here's some pics:

The memorial for the murdered Jews of Europe







The tv tower in alexander platz


A part of the wall in Kreutzberg that's been kept preserved..the graffiti is not the original graffiti on the west of the wall but was comissioned after the fall


A cool building in Friedrichshain, former east berlin


Art outside an area full of clubs


View from the Friedrichshain/Kreutzberg area


Stuff


The obligatory bikes which everyone rides


It's also a fantastic place for a photographer. My friend who I was visiting is really not into photography so I couldn't really take my time and spend as long as I wanted taking pictures but I would love to go back on my own and explore more with my camera.

Arthritis wise, it was alright. My foot was playing up and swelling some of the time but I managed to do quite a lot of walking despite it. A few of the days we cycled about the city because it's what everyone does so that was a good rest for my foot. Had a lot of stiffness in my hands some mornings too but maybe that had something to do with the excessive drinking of extremely cheap German beer. Overall, not too bad. Can't complain too much about life just now, so I won't. Hope you like the pics and that you're all doing well.

Tuesday, 26 October 2010

Check up

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...

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??

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!!!

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.

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?

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.

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.

Monday, 13 September 2010

Bike ride

Well yesterday was my 51 mile bike ride from Glasgow to Edinburgh!

I can report that I survived and have raised about £300 for Arthritis Care. The weather was absolutely beautiful, 9000 people took part in the ride and we couldn't have asked for better. The route was a steady uphill for the first 15-20 miles and then it had long fast downhills and only little uphills (which was good because by the end I could barely pedal on the flat, let alone uphill!!).

I was actually fine and full of energy until about 40 miles in. We had a long stop at 30 miles in to get food and refreshments. The last 7-8 miles were a real struggle but it felt absolutely amazing to finish.

The past week my hip and right foot had been a bit grumpy and achy, nothing major but I was worried a big cycle wouldn't do them much good. I'd also been at a friend's wedding in England on Friday/Saturday and flew back Saturday night so I didn't feel very rested. However, not a peep from the hip or foot yesterday or today. This disease is so weird and unpredictable, sometimes in a good way!

The only casualty was one swollen finger joint, I think from gripping the gears, but that's better today. So, overall... not too bad!!! I've got the day off work today and I'm just going to sit in bed. My muscles are pretty sore but I feel great!

Here's some pics.. I look like a total idiot in that helmet/leggings combo but whatever ;)

The start of the race:


Stopping for a break:


View in Linlithgow:


Tired? Me?


The finish


Looking horrible and sweaty, but got our medals!!

Wednesday, 8 September 2010

Work

Ugh have I ever mentioned that I HATE one of my bosses? I know everyone has a boss that they hate, but this one is the epitome of the bad boss stereotype. He's a bully, immature, a show off, an attention seeker, has an uncontrollable temper, patronises people below him and at the same time hides a lot of these traits when more senior members are around.

It infuriates me and today he again spoke to me like I'm a naughty 5 year old, when I haven't actually done anything wrong. I try to ignore him most of the time but ocassionally our paths cross and every single time I come out of those meetings wanting to punch things. Like today.

Ok...calm...breathe. :)

Stress is not good for RA. I think I should tell my doctor to surgically remove my boss from my life, then I'll have a lot less stress!!!

Saturday, 4 September 2010

Weather

What's going on with the weather? It's been sunny and warm since like..Last Saturday. That's right, folks. Sunshine for 7 days in a row. I'm starting to get freaked out, but really really enjoying it.

This must be what it's like to live in a place with a normal summer.

Sunday, 29 August 2010

Bike update!

Phew... 23 miles biking today.

I feel beat. It was a beautiful sunny day and I went out to Loch Lomond which is a lake..well..23 miles north of Glasgow. Gotta say, the last 6 miles or so, the only thought that kept me going was the pint of beer I knew I'd reward myself with at the end.

My foot was sore in the morning but I went out anyway and it got better as the day went on. Now my thumb is complaining... but, hey ho. That's how it goes. I'm rather pleased with my effort. My bum will be super sore tomorrow, for sure!!

So that's like... almost half of what I need to do in 2 weeks time and I can't even train much next weekend because I have a friend coming over from America and he'll want to go sightseeing around castles and men in kilts playing bagpipes and all that stuff you americans go bonkers over!

Anyway here's some pics from today:

Me with a big statue of a bike that I randomly came across..


The map of the route I took today


Most of the journey was along rivers or canals like this


The final destination


...and, my reward


Right..a hot chocolate in bed is in order, I think!

Thursday, 26 August 2010

Guilt

I recently wrote a post about how I'm always on the go.

I've been thinking about that a lot, and this Tuesday I got a pretty bad head cold and couldn't sleep all night. Now, that I can usually deal with but as luck would have it the next day I had an important work trip to London that I just couldn't miss. This meant getting 2 flights in one day on no sleep (which were VERY painful due to the air pressure causing chaos in my blocked ears and sinuses) and the day itself was generally very busy and I was on my feet, carrying lots of film equipment with barely any breaks.

I got back home about 11pm last night, with ears and sinuses blocked and painful and I just felt beat. This morning I felt a bit better after some sleep, but still not 100%. Usually, I would just push past this and drag myself to work. But this time was different.

As it so happens, when arthritis hit me last year it was just after a work trip to London. I, again, hadn't slept much, been travelling and then gone back to work straight away. Then I'd spent the following few days stressed for a deadline, staying back late at work.

I don't know for sure if that week's exhaustion/stress helped bring on the arthritis, but I am certainly NOT going to take that chance again.

I'm doing very well arthritis-wise lately and I'm going to do all I can to keep it that way. I know that resting won't necessarily protect me from a flare, but it sure as hell can't hurt.

So yes. I took the day off. I slept for 10 hours and am now having breakfast in bed made by my flatmate.

And I feel better and will be back to work tomorrow, refreshed.

I haven't taken a sick day in the 18 months I've worked there, even during the arthritis diagnosis and initial flare. I think I made the right choice today, but why oh why do I still feel so guilty??

Saturday, 21 August 2010

Time

Do you ever think... you're in a race against time? More than most people. Like everything speeds up when you have a progressive disease. I can't stop. I don't remember the last time I took some time out, I'm so afraid to stay still. I don't know if that's a bad thing. Maybe it's a blessing, knowing that everything is so fragile. Or maybe it's just Saturday night and I'm just drunk and rambling...

Thursday, 19 August 2010

Bike Ride Update

I wrote about my upcoming challenge a wee while ago, and so the weeks roll by and September 12th looms closer and closer. Panic? Me?

I had been doing well with my training, I was doing 10 mile rides at the weekends but 3 weeks ago some dooshe stole my bike. That's what I get for living in the ghetto of Glasgow. Well, not really, but there are some dodgy types about. It's Scotland, after all.

So I've only just got a new bike yesterday, which means I am very very behind on training and whatever muscle I had built up is now probably gone. I am a bit comforted by the fact that hardly any of my team-mates from work have done any training either, so at least we'll all embarrass ourselves horribly together.

Anyway the reason I'm posting about this is some folks asked when I'd have my sponsor page up and I finally do now!

Squirrel's Crazy Cycle

I can't back out now...eek. Sorry, legs.

Award?!

What is this I see?! After being a bit behind on reading the blogs over the last few days, I sat down to catch up on what's been going on - and lo and behold! I've been nominated for the One Lovely Blog Award, TWICE!!! That seriously made my evening, thank you so much Pony (Bionic Pony) and Laurie (Frozen Woman: Life with RA)! Glad someone enjoys my rantings...



Can I give it right back? I love those ladies, both are Canadian and I love Canada. And Canadians. And Canadians with RA. But seriously if you haven't read their blogs, go check them out, they're two awesome, funny, strong women who don't let RA stop them.

I'd also like to give it to Rheuma Girl (There's Always Rheum for Improvement). She's a fellow UK lass, the same age as me, who's had a lot on her plate the past few years. Her blog's awesome and she's really getting her life together and kicking RA's butt. It was also her birthday the other day.

Then there's Cathy (The Life and Adventures of Caterpoo) whose lovely heartwarming posts about her family always make me smile. She's been doing a lot better with RA lately and that also makes me happy ^_^

I'd also like to give it to Jenn (Project Jennifer) who is one cool chick who's been dealing with RA for a long time. She always entertains and inspires me with her funny and thoughtful musings. And she has an awesome fashion sense and lives in LA - so jealous.

Last but not least I'd like to award Terry (Dual Sport Life) because I don't want to forget the boys and men out there. Terry is such an inspiration and makes me want to keep pushing past my limits. He's not having too great a time lately but I know things will turn around soon. Oh and he rides motorbikes - so cool!

Is that too many?! Oh oh and I can't not award Amanda (All Flared Up). The first blog I started to read and oh my god that girl is funny. She's having a rough time too just now but she's always in my thoughts because when I was first diagnosed her blog gave me hope that you can be young and fun AND have RA. So yeah. Go Amanda.

Phew!

Sunday, 15 August 2010

Camp

I'm just back from Arthritis Camp!

Basically there's this brilliant course for people aged 17 - 25 with arthritis and it's all free and you get to meet up a few times a year and go on residential weekends. Sometimes it's more about discussing personal growth and feelings and what not and sometimes it's a bit more about fun. This weekend it was an activities weekend up in the north of Scotland in the middle of the mountains.

We did lots of stuff like climbing up rocks in the river and swimming against the current in the FREEZING cold water, skiing (on dry slopes as it would be pretty hard to find snow in august), archery, rock climbing and mountain biking.

Yes.. people with arthritis CAN do all these things, healthy people!! That was the best part of the weekend, seeing everyone achieve so much and push past their limits.

I was totally scared of doing the river stuff because I generally hate being cold and wet. But it was actually great fun, even though swimming against the current was such hard work and I now totally understand how easy it is to drown in a river.

The hard part of the weekend was seeing some of my friends in pain. My best friend is mid flare but came along for the banter anyway, but after a particularly energetic game of baseball he was in quite a bad state. It really upset me seeing others feeling so bad, even though I know it's all part of the process. Still hard to watch though.

But seeing people proud of themselves and clambering up rocks and what not was awesome. Plus the weather was beautiful, which is very unusual for Scotland.

Monday, 2 August 2010

Boredom

I haven't posted for a while, but I've been in a bit of a weird place.

Nothing new going on with the arthritis, taking my pills and feeling generally fine and not seeing the rheumatologist until October.

So why is it that I'm feeling oh-so-blue?

For the first 6 months after diagnosis I think arthritis is all I thought about. I still think about it a couple of times a day, and some days more than others but it's often not the most overwhelming thought in my head. So that's good.

However, now that I've had a good few months and I've been feeling more 'normal', I've kinda realised how terribly bored I am of the way my life has been going.

When I'm not dealing with hospital appointments, or aching joints or whatever else RA decides to throw at me, all I think about is work. I work all the time and I do love my job but I'm starting to get sick of just work/arthritis, work/arthritis.

I don't mean to say I stay home every night, in fact quite the opposite. I'm a very outgoing person with a large circle of friends and I have lots of hobbies. However, it's been the same hobbies, the same friends, the same bars, for about two years.

I've also been single for two years which is really getting to me lately. I stopped dating when the RA started and recently began again, so I've just been reminded of how much more there is to life. I am 24 and I feel about 40, settled in a routine and all medicated up. I feel like I shouldn't be wasting time just working away or worrying about my health. I want some fun and excitement, something out of the ordinary to distract me from dull every day thoughts.

I guess everyone feels like that at some point, but I think because arthritis had taken up so much of my headspace lately I didn't quite realise it until now. The question is.. what am I going to do about it?

Saturday, 24 July 2010

Dating

I know lots of bloggers cover this, but it is quite a vital topic - the dos and don'ts of dating with arthritis.

So, I went on a date last night for the first time since my diagnosis. It was a blind date, which weirdly I would never have done before RA. The last few months since I stopped wallowing in depression I've gone the opposite way by doing EVERYTHING I want, ALL THE TIME. I'm just afraid that the clock is ticking and I won't be able to do things soon, so I've gone a bit mad basically. I spend lots of money because I don't care about 'planning for the future' anymore, I've been on about 3 holidays already this year and now apparently I go on blind dates with strangers. I wonder what's next?! Must be some weird stage of grief I'm going through..but it is better than crying every day which I used to do. Anyway, I digress.

The date actually went really well, we went to a few pubs and got VERY drunk. I was actually drunk before I even got there because I was really nervous, I couldn't finish my dinner and drank half a bottle of wine.

I think we might see each other again, so here come the problems. When do I drop the RA bomb? "Yes, I might be the fun lovin gal you're looking for, but how do you feel about my fun disability?"

I know that if the person is decent, they won't care about things like that. But it's still kind of a weird issue, if you mention it too early it might be a bit too 'serious' but if you leave it too late then it's like you're hiding it? I guess I'll just wait and see, leave it a few dates, see if it's actually going anywhere and then drop it in casually.

My date: "I have two cats."
Me: "How interesting. I have a chronic progressive wasting disease."

Wednesday, 21 July 2010

Dum dee dum

I don't have anything in particular to post about today so here's some random reflections:

* I spent the weekend down south at a Theme Park with 3 friends. It was aaaawesome!

* I have a crush on someone at my yoga class. Wondering whether if I ask them out and they say no it'll mean I'll have to stop going to the class out of pure embarassment?!

* I had a STUPID day today. I had to drive through to Edinburgh super early and film something, half of which went fine and then my microphone went crazy and conked out. Really frustrating. Then a part of the photography equipment conked out! Then I got stuck in a traffic jam on the way home. I should feel annoyed but the older I get the more I find this stuff funny.

* My feet are suspicious. They feel a bit dodgy but not dodgy enough to say they're flaring. I walked about all weekend and it was fine but I can just feel a tiny bit of that jabby 'something' in the balls and it's been there about 2 weeks. Go away, please. You're annoying me, I have NO TIME FOR SORE FEET or anything else for that matter! So that's you told, feet - NO FLARING OR ELSE.

* I need a large glass of vino, thankfully my friend is making me dinner tonight. Woo hoo.

* Apparently I love typing in capitals today.

That's all. Bring on the weekend already!!

Thursday, 15 July 2010

Focus Group

I attended an NHS organised focus group tonight led by a doctor, talking to arthritis patients and trying to find out their opinions on general practitioners and their care.

It was quite interesting, the group was for young people and there were 4 of us there, the other 3 had had their conditions since childhood so had a lot of experiences with the medical system, unlike myself. Initially the topic was meant to be GPs and their 'pain management' techniques, but what soon came out was that most people were more concerned about the GPs neglect of the psychological aspects of arthritis. Again and again, people made the point that doctors don't tend to discuss the further reprecussions of arthritis on the mind, relationships and the effect the disease has on day to day life. A point I made was that no one in primary care, or at the rheumatology clinic has offered me any sort of emotional guidance or counselling. I don't want to diss my doc here, I love my rheumy, and I know time/money is tight. But they didn't even point me towards Arthrits Care or any other charity. There's posters up on the wall, but no one encouraged me to call or even asked me how I'm coping emotionally with the diagnosis.

It was also quite sad to hear some people's stories, like one girl who was my age (24) and had been diagnosed with ankylosing spondylitis last year but she'd had it her whole life and no doctor would ever believe her. She'd spent her childhood in terrible pain, going from doctor to doctor and being told she was 'making it up', until an MRI finally showed so much damage in her spine that it's now irreversible.

Anyway.. it was very interesting and I hope that the piece of research doesn't just get buried under lots of papers on someone's desk.

I got a £15 shopping voucher too, thanks NHS! I do fund you, after all.

Tuesday, 13 July 2010

Hydroxy

One Tuesday - over.

Two pills of Hydroxychloroquine - swallowed and digested.

Numerous side effects so far - totally avoided.

This happened with the sulfa too (I mean aside from my WBC melting away I felt fab).. Surely my luck can't hold out much longer. I'm expecting to grow a few tentacles or possibly a tail by the weekend. I'll keep you posted...

Sunday, 11 July 2010

Spain!

Yayyy Spain won the World Cup!!!!!!!!!!!

I wish I was still in Barcelona, at the beach - what a party those guys must be having right now!

I'm quite in love with Casillas, the goalie.



Ughhh Monday tomorrow. Weekends are too short...

Friday, 9 July 2010

Meds change

Well it's official - I'm off the sulfa.

I had a 2 week break and my bloods went back to normal. Then Dr A put me on it again for 3 days and we did bloods yesterday. My white blood cell count's dropped by a point, so she's almost sure it's the meds.

I'm starting hydroxychloroquine next week. Woop dee doo. I've finally learnt how to pronounce it, so that's a start.



I'm pretty bummed out about my stupid bad luck. I'll try and snap out of it and focus on the fact that apart from one slightly dodgy thumb I feel really well so I shouldn't waste my 'feeling well' time being depressed about a treatment failure. And I know that worrying about the future is pointless...but why oh why do I still do it??

Maybe I'll go watch the new Twilight movie, that'll make me laugh. The whole thing is sooo bad but for some reason I've seen them all. And no, I don't secretly fancy teenage vampires. Or warewolves.

Saturday, 3 July 2010

Summer Read

I just finished reading Martin Millar's 'The Good Fairies of New York'. It was awesome and I thoroughly recommend it. It's about 2 mad Scottish fairies who are on the run from their fairy clan for destroying traditional Scottish fairy music and playing New York Dolls songs on their bagpipes. They somehow end up in New York and befriend two lonely young people living in the city. One's the fat rude slob Dinny and the other is the lovely pretty Kerry who suffers from Crohn's disease.

It is as mental as it sounds and definitely not a children's tale as it's about isolation, sex, drugs and the ghosts of the New York Dolls.

It also portrays Kerry's emotional struggle with her autoimmune disease very well and it really spoke to me.

Smart, funny and thoroughly addictive - read it now!

Wednesday, 30 June 2010

Cycling

Posting for the 3rd day in a row - can you tell I'm having a few quiet evenings in?!

A few months ago I, madly, decided to sign up for a charity bike ride which takes place in September. It's 60 miles, from Edinburgh to Glasgow. Wonderful, I hear everyone say! What a great way to raise some money AND get fit.

So here is the problem - I am NOT fit and never have been. When arthritis joined in the party I gave all exercise up for a while because I felt awfully sorry for myself, didn't have a clue what was going on with my body and it was the start of a very long and snowy winter. I replaced the bike with chocolate - hello 6 pound weight gain!!

However, as Spring sprung, the days got longer and my joints settled down I decided to get back on my bike. I also started going to yoga and swimming. I was feeling pretty good but the last few weeks I've been slacking off (read that as 'spending every weekend out socialising drunk as a skunk').

I went cycling for the first time in ages last night and OH MY GOD. I didn't even go up any hills, just did a couple of laps around the park and I was exhausted. Did the same tonight and it was still pretty tough on my poor weak muscles.

As much as I am grateful for ANY day I am fit enough to go biking (and I am very very grateful), I need to step up my game. How will I be able to cycle 60 miles in 2 and a half months?! Just need to focus on my goal - half the money I raise is going to a cancer charity and half to Arthritis Care, so it'll be worth it in the end.

Tuesday, 29 June 2010

Shoes

I don't think I've mentioned before in my blog, but I work as a photographer/videographer for the website of a popular UK fashion footwear retailer. So I spend my days looking at, photographing, videoing and editing SHOES.

Awesome, some may say. It is, but it's also a bit of a bummer when your feet are a bit crap. I've never been into high heels because I'm 5'8 and have been since the age of about 12, but I do like nice shoes. I also have a generous discount which needs to be used.

Ok so today I bought these:



Toms - light, summery, on trend and totally awesome because for every pair bought, they give a pair to someone in a 3rd world country. And also they're flat and should be super comfy with a supportive sole. BUT... my stupid feet are different sizes. So the right foot is pretty tight on, and the right foot just happens to be the foot with the arthritis. I sense doom, but I bought them anyway!!

I also really really really want to get these:



Tried them on today and they fit really nicely on my different sized feet and the heel isn't high at all so no pressure on the ball of my foot. BUT... the stupid bit over the toe turns in too far and rubs the top of my big toe like crazy.

I just know they'll give me blisters or worse.. Ugh.. but I want them! Sick of wearing my oh-so-comfy 'Granny Sandals' and trainers.

What's a girl to do?!

Monday, 28 June 2010

Dr Who

I love Dr Who!!
So obsessed with it right now. I never watched it before but since Matt Smith became the new doctor I thought I'd try and get into it - after all it's a British institution! Season 5 just finished, can't wait for more.. Might have to go back and watch all the David Tennant ones now.

Bit of a pointless post.. but that's about the only excitement I've had today. I think I'm still trying to recover from a very very drunken night out dancing on saturday. When did I start to have 2 day hangovers? I remember being 18, staying out all night, having 4 hours sleep and feeling fit as a fiddle. Now I'm a 24 year old arthritic. Marvellous folks, just marvellous!

I'll go back to Dr Who now and leave you with this wonderful picture.. just remember - bow ties are cool!!

Thursday, 24 June 2010

I LOVE my doctor

I just have to say how amazing my doc is. I don't mean my consultant, as I've only met her once (she's lovely too). My other doctor is the one who did my ultrasound and has been taking all my bloods at the hospital. She's a bit weird, granted.. she's about 40 but has long hair speckled with grey, used to do charity medical work in Africa and I think she's generally a bit of a secret hippy. I've always liked her - she remembers everything I tell her about my life, always asks for details and when she did my ultrasound she spent about 2-3 hours with me which was awesome. But today she totally surprised me. We British like to moan about the 'crappy' NHS, so I thought I should share this. I had to go in for bloods this morning as my white cell count dropped a few points on sulfa and we had to stop it for 2 weeks and see if it went up again. She did my bloods and said she was going on holiday the next day and that she'd ask someone to call me or send me a letter next week telling me what the results were and what I should do with the meds.

So I went back to work and maybe 4-5 hours later my phone rings and it's my doctor saying that she really wanted to get my bloods through before she left for her holidays so she marked it urgent and she wanted to speak to me herself. Not because there was anything wrong, I just think she knows how upset and worried I get. I was so pleasantly surprised, as I know she probably had a million things to do today but she found the time to do this for me and ring me herself.

Dr A rocks!! I actually have had brilliant care at the hospital so far and I know not everyone's experience is the same as I read on message boards about doctors rushing them or being rude so I guess I've lucked out.

On the bloods side of things, white cell count's back to normal. We'll try the sulfa again for a few days before I get the next bloods in 2 weeks. If it drops again then it's definitely the sulfa and they want to try me on hydroxy. Stupid white blood cells, who needs them anyway? ;)

Thursday, 17 June 2010

Just another Monday..

Not a brillant start to the week so far. I had a fun weekend away, went up to the Highlands camping with a friend and the weather was gorgeous - blue skies all the way.

Alas it seems the good times can't just keep on rolling, the arthritis has piped up and my right hand pointer finger's swollen up. Tomorrow would've been 2 months without swelling - it's as if it knew! Oh well, I don't know how this one's gonna go.. hopefully it'll be a mini flare and not spread to too many other joints. So hard to explain to people how incredibly frustrating it is to even have one useless finger, let alone more.

I am seeing the doc on Thursday for bloods - 2 weeks since I stopped the sulfa. I don't know if this flare up's related to that or not.. I don't know anything anymore, my body makes up its own rules.

To keep my spirits up I'm going to watch Dr Who, chill out and think about a friend of mine who had a lot of health problems as a teen. She had to have open heart surgery to remove a gland which was affecting her facial nerves. This was when we were about 18 and I remember she was on steroids for over a year prior to the surgery and has a massive scar all the way down her chest. BUT.. she's been in the news this week for winning a Scottish fashion award for young talent, beating off competition from thousands of graduates. Such an amazing achievement. And ok, I know it was a different condition and I don't know the ins and outs of it and if it still affects her but I know she had a rough time. I also remember how positive and cool she was during that time and what a driven young woman she's obviously become. I'm very pleased for her and quite inspired! I need to remember that life might look brighter in the future and I could still achieve things that I want to do. Even on a crappy day like today.

Thursday, 10 June 2010

Bad news

Ugh well I spoke to my doctor this morning, the blood tests they did the other day have come back showing a change in my white blood count. She said not to worry but to stop taking the sulfasalazine for 2 weeks and then we'll repeat the blood test.

She said sometimes people's bloods are just weird and it might not be the drug but they have to be sure.

I'm quite gutted, I thought it was going so well. No external side effects that I could see, but I guess my insides are telling a different story.

I'm still feeling pretty well, although I'm very anxious today - I feel like I'm back to square one.

I really really really really don't want to have to take methotrexate. I know it's silly and part of my denial but the thought of such a serious drug just reminds me of how serious this disease can get. Too scary :(. Also I know it's silly and trivial but I love going out and having a drink, I don't want to feel even more different from my friends than I do already. I guess we'll cross that bridge once the second blood test comes back. UGH. I hate this game.

Wednesday, 2 June 2010

Barcelona!

I got back on Sunday night but have been uber busy and not had time to sort through my pictures. Until today - yipieee!!

We had an amazing time, it's a cool place - a bit dodgy, gotta watch your bag for pickpockets and your purse strings in general as it's very expensive in the touristy areas.

Really gorgeous architecture, obviously, with Gaudi's magnificent and final work La Sagrada Familia towering over the heart of the city:





The city is also host to one of the world's finest and biggest examples of Gothic architecture in the Gothic Quarter, just off La Rambla:





I also loved the magical Park Guell, another of Gaudi's masterpieces. The odd tower-like structures almost look like fairy tale gingerbread houses and the wonderfully coloured broken tiles have become a symbol of Barcelona. The green space and sculptures in park Guell used to be the grounds of Gaudi's residence and are now a public park with gorgeous views over the city:



We also spent a lot of time wandering about, chilling out and drinking a few sangrias - on the beach and everywhere we could really!



We went to a music festival the last few days which was cool. We saw the Pixies, Broken Social Scene, the Pet Shop Boys (lol) and lots of good smaller bands.



The weather also stayed sunny and just the right amount of hot. Overall, excellent. If you are lucky enough to be in the position to travel I thoroughly recommend this city.

On the arthritis side of things, feeling really good. Had no problems on holiday at all even though I drank loads and was a bit worried about the sulfa. I'm not drinking this week though so hopefully my liver will forgive me, got my first meds blood test next tuesday - ugh. There was a wonderful moment maybe Wednesday night, where we got home and I realised I hadn't thought about arthritis for at least a few hours. That's a long time for me, it usually crosses my mind a couple of times an hour. I had a sore lower back the last couple of days which was a bit unpleasant but I don't know if that was the arthritis or just the aftermath of lots of walking and sleeping in a different bed. Who knows.. My yoga instructor focused on the thighs and back yesterday so I gave it a good stretch and it seems almost back to normal.

So, back to work now. Joy joy joy. No holidays for a while now as I'm BROKE!! But really really thankful that all went to plan, and long may it continue. (I've probably just jinxed myself by saying that...).

Oh on a side note - just been catching up on all the TV I missed and OH MY GOD. How awful was the Lost finale?? This whole season I've been losing interest in it but that was beyond terrible.

Ok, that's it. Sorry for the long post but hope you enjoyed the pics.

Saturday, 22 May 2010

I haven't had much time to write this week.

A friend was staying with me so that cut into my internet addiction time - probably a good thing, I really want to cut down the amount of hours I waste online. I could've probably learnt another language in the time I've spent on Facebook.

I started the sulfasalazine on Tuesday - so far so good. No side effects that I can see, but I am still on the lowest dose, need to work up to 4 pills in a few weeks time. No acid yellow pee yet either, slightly disappointed. Maybe on the higher dosage.. (Sorry was that too much information?). I am glad it seems to agree with me though. As much as I tried not to worry, it's still quite intimidating taking a new drug.

I'm also going to Barcelona on Monday for the week. Never been before, can't wait!!! I warn you, a long post with lots of fish eye lens pictures will be coming shortly. I'm such a snap happy tourist, it's quite embarassing.

Well, the sun is shining, it's above 20 degrees which is almost unheard of in Scotland, so I am going to bid you adieu, Internet, and go play outside.

Saturday, 15 May 2010

Ultrasound

I had my ultrasound appointment yesterday.

It was meant to be at 11.45 so I left work, ditched my car and rode my little bicycle to the hospital. First problem - finding bike racks in the damn place. Second problem - finding the ultrasound ward which had recently been moved so none of the signs pointed to the right place. Also every person I asked had a different idea where it was. Anyway, cue a lot of running down corridors and up and down stairs (I think this must be some sort of new way they're getting arthritis patients to exercise!) I find it, all sweaty and out of breath - nice.

I shouldn't have hurried or stressed out because I had to wait almost 2 hours to be seen, but I didn't mind, these things happen. When I actually saw the doctor (not my usual consultant) she was lovely and very thorough and spent about an hour and a half with me. She did both my hands, my right wrist and my right foot (right hand and foot are my biggest problems). There's almost nothing wrong with any of my joints, no erosions or fluid on them. She wasn't sure but she thought there was maybe a tiny bit of synovial thickening on one of my PIP joints on the right hand - the one that started all this trouble anyway so that doesn't surprise me.

Anyway she said it looked 99% well, and taking my clinical symptoms and blood tests and xrays in mind there's no need in her opinion to put me on methotrexate just yet.

She wrote me a perscription for sulphasalazine, starting on Tuesday (when my throat clears up properly - still not quite right!!) Here's a picture of my new best friend:



Hurray - yellow pee, here I come.

Monday, 10 May 2010

So, this is the band I saw last night:



Gogol Bordello - gypsy punks!!! Woo hoo. SO much fun. There's about a million of them, all playing loud mad instruments including bongos, an electric violin and an accordeon (sp?). They were supported by Mariachi El Bronx who used to be the Bronx (hardcore punk) but are now, obviously, a Mariachi band. Natural transition...

Anyway, great fun. I decided to crawl out my bed about 7pm and go to the gig cos I'd been looking forward to it for ages. Left a bit early as my various ailments were ganging up on me but a great night anyway.

Sunday, 9 May 2010

Sore throat, go away... don't come back another day..

So typical. The arthritis is behaving but for the past week I have had tonsilitis. I officially hate everything ending in 'itis'. I sound like a croaky frog when I try to speak and there is sexy white phleghm all down the back of my throat. What are the chances that when the tonsils sort themselves out, the arthritis will pipe up? *cue violins*

I did have a wonderful night in last night watching Buffy the Vampire Slayer and eating a massive curry all to myself. So there are upsides to being in bed on a Saturday night. :D

Friday, 7 May 2010

Onset Story

I thought I'd share my onset story. I remember when I first went on the internet searching for info on RA how interesting I found each individual explaination of what symptoms they got first - much more informative than the numerous dry medical sites and articles.

It's not been very long for me. Almost 6 months, although in a way it feels like forever. I said to a friend the other day that I felt like I was in a daze for the first 3 months.

So, November had been a super busy month for me - at the start I'd been abroad travelling, then work sent me on a business trip to London and I spent the last week of Nov staying back late and working on a deadline. Now, I don't blame the RA on being busy. I've been a lot busier and a hell of a lot more stressed in my life than I was that month. But maybe I was a bit more run down than usual, who knows? Anyway, I woke up on the 1st Dec with the middle joints of my ring and middle fingers on my right hand all swollen up. I remember thinking 'How utterly bizarre!'. Laughed it off for a couple of days - it wasn't painful, but my tendons were so swollen that I couldn't bend the fingers properly. I booked an appointment with my GP for the following Monday, fully thinking that they'd be gone by then. When they were still there by the weekend, I sat at home on Saturday afternoon, Googled my symptoms and had a nervous breakdown - I was convinced I had arthritis.

I freaked out, went into hysterics. A bit prematurely, perhaps. My friends and family thought I was over-reacting but I've never been a hypochondriac and I've always been super healthy - not an allergy, not a broken bone even. My foot and knee felt 'strange' and I knew something was really wrong with my body.
I went home for a few days and waited for the GP appointment. He took blood samples and that began the long arduous process of finding out what's wrong with me.

To cut a long story short, since then I've done a whole lot of waiting around for tests and to see a rheumatologist. I'm not a clear case, all my bloods and inflammatory markers have been negative (tested twice), all my xrays are normal and my symptoms are also quite vague and kind of come and go. I'm waiting for an ultrasound now and hopefully starting a DMARD next week - they're still deciding if I should get hydroxy, sulpha or mtx. My rheumy says I have mild sero-negative inflammatory arthritis.

I feel ok really, physically. I have no right to complain really, I am still able to function normally and take no painkillers so I am grateful, I know I'm lucky (well not as lucky as those other 24 year olds who don't have arthritis!) but I also fear that one day my luck might run out and everything can become full blown and really painful. Fear is my biggest enemy and trying to deal with the weight of the diagnosis. For me so far it's been more of a psychological journey rather than a physical one, although of course the two are linked and I do have aches every day that a 'normal' 24 year old shouldn't have and some limitations to my walking distances.

But even so, I am mentally much better than I was at first. I still worry a lot about the future - 60 more years in this body, yikes! - but I cry less. I'm learning a lot about a disease I had barely heard of, met some incredibly brave people and have made new friends through it. I'm trying to just live my life and appreciate every day that I'm still able to do the things I love. With a bit of luck, I hope to muddle through somehow.

Well that was a long bloody essay. If you're still reading, wow! Well done, you got to the end, you can go now :D

Thursday, 6 May 2010

Election Day!

Election Day is here!

I'm off to vote. I know David Cameron will probably get it, but I'll do my bit to try and stop that from happening. He might be trying to seem all trendy and down with the kids with his bicyle and hot fashionista of a wife, but at the end of the day it's all a bit like putting perfume on a pig.

:)

Tuesday, 4 May 2010

Fear

I've been thinking about fear a lot lately.

In general, I'm a worrier. Waiting and uncertainty are not my best friends. So, enter arthritis, stage left.

Safe to say I've done a fair share of panicking in the past 5 months. And some of it has been justified - it IS a very scary thing to come to terms with at my age (not that it's a picnic at any age!). The only certain thing with RA is that there are NO certainties. All I wanted to find out in the first couple of months was my 'prognosis'. I still terrify myself, every day, with thoughts of what might happen to me, my hands, by the time I'm 40.

But I've also noticed a different sort of fear which grips me daily. A fear of my own body and of 'doing too much'. Example: today I woke up with a bit of a throat infection. Nothing serious so far, a 'normal' person would just take some paracetamol, forget it and go about their day. My RA is behaving, I feel super duper apart from the throat, I should be happy.

Instead, I've been stressing all day: "Hmm is this a new RA symtom? Do inflamed throats have something to do with inflamed joints? Oh god, is my immune system going to go bonkers fighting the sore throat and will the arthritis flare up again? Am I growing an alien fungus inside my body, planted by green men from mars? Etc etc etc". RA makes me FEAR my body. I don't know what to do a lot of the time. There are too many 'should Is' and 'what ifs' - should I rest? Should I go to my yoga practice? If I go into work will I feel better or worse? Will travelling to a different climate flare me up? If I run will I regret it?

Even when nothing's inflamed (right now) I'm terrified of when it will happen again (after the sore throat?!) I didn't go to yoga today. I sat in with a friend, ate a massive pizza and watched Sex and the City. Hrmph. Did fear win, or was I being sensible? I don't even know. I just hate being afraid of living my life, the way I want to live it. Eleanor Roosevelt said that you:
"gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do."

Is this true for us RA-ers or is our fear often justified? I think I succumbed too easily to the RA fear today. Then again, maybe I just wanted an excuse to eat a huge pizza.

Monday, 3 May 2010

I'm back from my holiday! I'm pleased to say it was fabulous - lots of fun, sunshine and booze! Gran Canaria's a beautiful place - and suprisingly varied in its vegetation. I expected the beaches and volcanic soil.. but I didn't expect pine trees!!
This is the bungalow complex we stayed at, with its gorgeous pool which I made full use of:



The landscapes on the island ranged from arid canyons...



...to lush greenery...



..to tropical trees..



(And yes, I know I took way too many pictures with my new fish eye lens converter - I'm a typical snap happy type tourist!)
The week flew by as we relaxed by the pool, took a coach trip around the island, visited local villages, went to a wildlife park and even made fools of ourselves at a water-slide theme park. Well, only I made a fool of myself by zooming out of a waterslide very ungracefully, making a massive splash in the pool at the bottom and falling out of my bikini top for good measure and everyone's "pleasure"!
I drank a lot of sangria that night...

Thankfully all my worries about travel with the RA were mostly unfounded. The hand flare subsided on the second day there - I dont know if it was just coincidence, or the influence of the de-stressing, the sunshine and the change of scene.
The first day I had to walk about like a crazy lady with a bag of frozen peas permanenty attached to keep my hand cool and let me enjoy myself, but after that it calmed down. It's crazy how one day a finger can look like a giant hot sausage and the next it's pretty much normal.

My feet behaved also, and I did more walking than I've had the courage to do for MONTHS. Thank you, comfy sandals! I even painted my toenails..



Mmm..feet.. usually they kind of gross me out, but my own feet, sockless, with painted nails is a rare sight so I thought I'd share. I need to do more walking as I think the combination of the Scottish long winter and my fear of huring myself have made me lazy - more on that in a later post though.

The only thing that gave me a bit of bother all week were my knees, after our first long day of walking, on Tuesday. I was fine all morning and until about 2pm, but then I just crashed. Unfortunately we were far away from the hotel and I just had to grin and bear it, meaning that for 3 hours afterwards I had to lie down and rest. I had a little cry, the only time I let the RA get me down during the whole week, but I snapped out of it by the evening and even had a little swim which made me feel better.
After that the knees were fine and I had no trouble worth mentioning for the rest of the week. Oh and I didn't take any anti inflammatories or painkillers.

So - a resounding success!
Now, it's back to work. I've unpacked and am quite tired, so I think I'll have a beer and plan ahead for my next holiday which just happens to be in 3 weeks! I know, a bit ridiculous. But hey - whatever keeps us going, right?

Saturday, 24 April 2010

Well.. here we go. Another blog about rheumatoid arthritis. I don't know exactly how this is going to turn out and what sort of things I want to write about but I read lots of RA blogs which I find funny, informative and heartbreaking so I want to add my own 2 cents in. I guess it doesn't all have to be about arthritis. I hope my life isn't only about that.

A bit of background info. I'm a 24 year old girl from Scotland. I've lived a busy, healthy life so far for which I am thankful. 5 months ago 2 fingers swelled up overnight and my world came crashing down.

I'm really new to this arthritis business and I guess this blog is going to be more for 'newbies'. A lot of the blogs out there are by people with lots of experience and I have absolutely none. I'm just trying to keep a positive attitude, and not go crazy. I figured writing about my life might help. Myself, and perhaps someone else going through the same ordeal.

I guess I'll end this first post on something positive - I'm going on holiday tomorrow. My first holiday AA - after arthritis. I'm going to Spain, and very much looking forward to getting away from this muggy island, especially since the volcano ash almost destroyed my plans.
I'm a little bit worried, as my hand is flaring just now and the ends of 3 of my fingers looks like sausages. I don't know what the change in weather/going on a plane/being in the heat (my hand feels like it's on fire right now. Soooooo pleasant.. :/ ) might do. I'm hoping a week off work will actually settle me down, as this is the worst I've been since it first started so I'm not a happy bunny.
I didn't think that first flare would ever end, but it did after about 4 weeks and I'm only 2 weeks into this one. So, I'm slightly more positive this time that it'll pass. I'll be spending a week in the sun, drinking cocktails, swimming in a lovely pool and reading my books. Lets hope I come back a changed woman ;)

Well.. that's all folks! See you in a week.