About Me

19. Funeral Arranger. Chronically ill. Still alive. Still happy.
"Be kinder than necessary for everyone you meet is fighting some kind of battle..."

Tuesday, 11 September 2012

Hey!

Woah! The last months have been hectic! Feels ughh being so unorganised and not on top of things! But I thought, what the heck, nothings going to plan so i'll leave it and go with it.. Well back to college and all that now, so back to organisation! What a whirlwind of a summer! Had an amazing time with my friends in Tenerife managed to not hurt myself too much and pace myself so I could manage the pain! Had another good year with Arthritis Care at UKSA sailing, met even more people like myself and was reunited with familiar faces. Charlotte and Shelley managed to lift my spirits and give me wise advice to keep me going for another year again :) House flooded..oh dear! Not the best environment for me to be in, a smelly damp house! :( Unfortunately had to move out and everythings in storage. I miss my comfy double bed! :( What annoys me the most is that its the third time its flooded and we were promised a pump to prevent it, but nooo they were all arguing over whose fault it was that the drains were blocked and blah blah blah. They did get a pump..bit late now, we're left with nothing. UGH! Jetted off to Zante after this, ready for a relaxing week, so I thought... NO! Remeber the photosensitive reaction I blogged about before?! That decided to happen again! I took my methotrexate injection and within 48 hours, I could not move because my skin was so badly burnt. I have never experienced pain like it.. the combination of the burn, the swelling, the blisters, the tightness of my skin and the fact that I had to lie still for days meant my body was extremely stiff and painful at my joints paticularly my back and neck. It became so bad we looked for an early flight home! I could not walk or wear clothes...so the 4 hour flight home fully dressed was a painful one! Luckily we got a taxi there early, I was met by a man with a wheelchair and we were rushed through and put on the ambilift. If I wasnt in so much pain I think i'd have embraced the moment and all the special attention! One of the staff who pushed me through asked if i'd had "a fall" on holiday..when I replied, no i've got arthritis, all the old people with me turned and looked..and gave me that same old sympathy look. I felt like laughing to be honest. The reaction on some people's face really is truly priceless! Anyway when I got back, ( I really do not know how the hell I did it!) got to A&E to meet a very rude doctor I recall her words were in an aggressive tone "why are you in a wheelchair?!" ..oh sorry did you want me slide on my belly or something?! Anyway she did nothing! "come back later if shes still in pain.." Well i'm in pain now do something about it now?! I never understand that comment from doctors! I'm here now, so do something now... you never know one day they'll say that and it'll be too late! So I went home and morphined myself up.. (luckily we'd got some from my GP a few weeks earlier) Next day went to see my specialst nurse and rheumy, unfortunately dermatologist was in surgery, they didn't know what to do either! They'd heard of it before but never had a patient with it, so they'd not seen it before! UH OH. Anyway, we told them about the menthol cream the GP had given us last time..they hadnt heard of it but they searched their books and found it. Thank goodness the GP had given me this last time! It works wonders! Morphined myself up and lathered myself in the cream! Didn't move for a week and wallah..blisters everywhere. I eventually got bored of being stuck in and decided I was not going to waste my summer away and so I popped the blisters myself...baring in mind these blisters were the size of my thigh and like on the crease where your bum meets your leg... impossible to walk! So yeah... quite eventful! Not sure when the bad luck was gonna end. But heres to a more optimistic few months! Especially as its my 18th very soooon! woooooo! I just realised that means next months appointment will be my last one with my rheumy before im transferred to adult land! :( SAD TIMES!

Anyway, we still dont have interent, I am having to write this from a public computer so unfortunately I wont be able to blog too much still, but this is quite a long one so all should be good!









Just to warn everyone, STAY OUT OF THE SUN when on methotrexate! It says cover up with a factor 15 and you'll be protected from the reaction... I had 50+ and was under an umbrella! Banned from sun :(
Especially as I now look like a peeeeeling snake...

Will post again soon,

Love C xox

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