Uncertainty

Hmm... it's a funny old ride, this RA business. It sure is a world of swings and roundabouts. As you all know 2011 was a pretty great year for me and RA. For the last 6 months especially, I pretty much had no symptoms apart from some stiffness in the hands. I was hoping this would continue in 2012 but at the moment it's looking unlikely. Earlier this month I had some pretty bad knee pain that I haven't had for a long time. That's gone now but I've also had a few bouts of toe pain and swelling but this does happen to me from time to time so I wasn't too worried. Just this evening some swelling has popped up on my right index finger. It's relatively slight so far but I haven't had any swelling in my hands since Dec 2010 so this can't be good. I know these things are minor for now. But when you've been so well for so long it kind of blind-sights you. All I can do is hope it's just a slight glitch and soon everything will calm down. I'm trying not to panic but I can feel anxiety rising up within me. It's so cruel, how it almost tricks you that it's gone away and then you're brought right back down to earth. I guess I need to remember I am still lucky that I get such good periods inbetween. On a positive note, booked our flights to Peru!

Crazy adventures

Ok so maybe I'm crazy, but my friend and I are in the process of booking a trip to Peru in April. Basically I came into a little bit of money last year and I've always wanted to climb Machu Picchu so I figured I now have the opportunity to do it. There are plenty of places in the world I plan on travelling to, but since I developed RA I thought I'd better go and do this one quickly. Who knows if I'll be in any state to hike up a mountain 5, 10 years from now. Depressing thought, but you never know with this crappy disease. Plus this year at work I've got an extra week holiday allowance as I've been there for 3 years, which allows me to comfortably take 3 weeks off work and then have plenty of holidays left for the rest of the year (yeah, sorry North American friends, we get a lot more holidays!). So everything seems to be falling into place but along with the excitement I'm getting really worried!! Am I mad?? Going to a developing country for 3 weeks and trying to hike up a really big mountain when I have a pretty serious disease on the go here. I mean, I've been feeling well for over a year now with only wee problems here and there but maybe this is pushing my luck! Then again I can't not do this just because I'm scared of what may or may not happen, right?? I am worried about the hiking, as my feet are one of my biggest problems (although much less so now). I'm also worried about the radical change in climate, and the GAZILLION vaccines I have to get before I go. I think I need: Hep A, Hep B, tetanus, typhoid, yellow fever, rabies and malaria tablets. Another reason I think I should go and do this now is because currently my only medication is hydroxychloroquine and that doesn't suppress my immune system therefore I can safely have live vaccines. Who knows if in a few years time I might have to be on MTX and it would be good to have been vaccinated for travel in developing countries before that. Despite all this I am very worried!! I'm sure it'll be amazing and I'm also very excited. Has anyone ever been on an epic adventure with RA in tow?? Any advice?

2011

After work tomorrow I'm heading home to my mum's house for Christmas so I probably won't get another chance to write before the New Year. I guess I just wanted to sum up the last 12 months and reflect on how amazing this year has been. Even though there were hard times, with my great aunt passing away in July, for the most part it's been the best year I've had in a while. I got a promotion and a pay rise in work as well as a big bonus which got me out of debt. I travelled to Paris in February, Portugal in June and Iceland and Berlin in October/Nov all of which were incredible experiences. My arthritis has been sleepy all year and I feel healthy and strong. I've only been to the hospital twice this year for my two check ups and been in there for a total of about 15 minutes. What a contrast to last year when I was getting meds sorted and had to be in there every few weeks!! Also, for the first time since my diagnosis, I feel free from RA in my head. Thoughts about my future with illness don't fill my every waking moment. It's wonderful and I feel so lucky to feel so well in body and in spirit. Last but not least, I have met someone wonderful and we've been going out now for 3 months. It's still very new but I'm very happy and looking forward to the New Year together and getting to know each other more. Basically...I AM EXTREMELY HAPPY WITH LIFE. I am a lucky girl. I wish you all a great Christmas full of love, and hope for a better 2012 for us all.

Check up

I went for my 6 monthly check up this week at the hospital. I didn't see my usual doctor but I saw the consultant this time, only the second time I've met her. She's really nice and remembered me from before. There wasn't really much to say, although I chuckled when she asked me: 'So, do you think the hydroxychloroquine is helping?'. Haha, surely they're the ones that are meant to tell me that? I said I didn't know and she laughed and said 'that's the million pound question isn't it? we sometimes never know if it's the drugs that help or if you would've got better without them.' But she then said to me that she normally likes to have people symptom free for a year before she lets them reduce dosages. To this I replied that I wasn't worried about taking my drugs and I wouldn't want to stop, unless I was totally symptom free (which I'm not) for a good 3-4 years. To be honest I doubt I'll ever get to that point, and I am not aiming or even daring to hope to be drug free. I'm a realist. But my next appointment is at the end of June and I do hope that I will continue to stay stable and pain free.

Another year..

Happy 2nd RAnniversary to meeeee! Actually I think it was yesterday. But yeah it was around the 30th November 2009 that I had my first symptoms of RA. Two years.. not that long really but it feels like forever ago. It also seems like nothing compared to the next..oh.. 50-odd years I have to go living with this uninvited guest! However I can say that if my RA remains sleepy like it is right now, I could tolerate it squatting in my body. As long as I can't see you, feel you or hear you, you can sleep in the spare room, RA!! I should probably have something really philosophical to say about how I feel I've grown as a person and how strong I have become but I don't think I'm any of those things, I'm just quite lucky. All I can feel right now is happiness with my life at the moment, sprinkled with a bit of background anxiety for the future and topped with some cherries. Makes for quite a tasty RAnniversary cupcake, don't you think?

Thanks

Well, since it was Thanksgiving for most of you yesterday I thought I'd give my thanks to you all for the lovely messages on my last post! Really glad to have the support, during the good times and the bad! So, in keeping with my promise to write about good things... here are a few photos from my recent trip to Iceland! I had SUCH a wonderful time, it's an amazing, enchanting country. You feel like you are at the end of the world, or on another planet. Or at the beginning of time on ours. Steam and sulphur rise up from the ground, volcanoes rumble all around, glaciers advance from the mountains and the sky is lit up in technicolour. View from the church tower in Reykjavik:

Sulphur springs - it was pretty stinky but beautiful!

View around the sulphur spring, does it not just look out of this world?!

Another area with hot springs - it was freezing outside though, hence the steam..

A small island called Videy, with the Esja mountain behind. This is just outside of Reykjavik

The town of Grindavik

Northern Lights

Glacial iceberg lagoon at Jokulsarlon

Just lovely :)

Blog guilt

Ok, im gonna have to admit it. I've been a crap blogger lately. I think I've written about 3 entries since Spring. And the reason is pretty weak... I've not been blogging because I've been feeling really really well. That's terrible isn't it? We always moan that people who start to feel better distance themselves from the online community and stop participating and therefore there is this one-sided representation of RA online, which tends to be on the gloomy side. I was desperate to find upbeat stories when i first got diagnosed and I found very few. I vowed that if I got better I would keep writing. And here I am, going completely against that. I'm being selfish. I guess there are two parts to this, or maybe three. First of all, I don't feel comfortable writing big long posts about how great everything is when I know others are suffering. Secondly, I'm just out and enjoying life the way I never thought I would again and last but not least, I don't want to 'jinx' myself by writing a big post about how great I feel when it could all turn around at any minute! But there's no denying it - I feel fantastic. This whole year has been awesome, especially the last 5 months. I don't know if it's a natural remission or the hydroxychloroquine doing something.. I have a couple of wee symptoms now and then but basically I feel normal. It's my 2 year RAnniversary next week and honestly, 2 years ago I never thought i'd be living a life 'free' of RA. But I am. So I don't know if anyone wants to hear about my lovely life just now or if it'll just make people feel like crap?! But I will try to write a few posts in the next couple of weeks and maybe put a positive story out there for someone who's searching for it... because it turns out happy stories do exist with RA. :)