Hi all,
I am not new to RA, diagnosed April 2005 but although I found this site a while ago, have stubbornly refused to participate until now, lol. I have the found the message boards comforting to read though. People do things when they are ready and not before.
Through the past two and a half years all has failed...hydroxy, sulfasalazine, methotrexate and arava. I am now on Humira fortnightly and 10mg of metho with it. The Humira had the biggest result of any of them but a couple of doses in I got a sneaky chest infection. I didn't have to come off, thank god, but the chest infection triggered a flare and right now I am wondering if I am going to end up back in hospital on bed rest.
I am also the very solo parent of a beautiful five year old daughter who I constantly feel I let down by not being able to do normal things with. This was the only site in the internet universe that had any info about having this and parenting. Parenting has been difficult, as being an only child she looks to me for company and sometimes I can barely stay awake from fatigue.
The pain is awful and has gone on forever but find it less stressful to manage than the fatigue or swelling.
I have people in my life who understand and others who don't...I have eliminated the stressful ones as I don't need it. When you are diagnosed with RA you really find out who your true friends are.
Apart from that, pre-RA I used to write fiction...no not published but I am a serious writer, I was writing at least 10 000 words per week until three years ago when the RA stopped me. I deal with constant frustration over this one. I have not yet found a way to manage the RA, write and be a single parent. I can find the balance yet.
Constantly ones expectations have to be lowered with this disease and there is this consistent sense of loss. Maybe breaking the expectations down into smaller ones is the way to go, I honestly don't know.
Anyway, that is me and I shall be participating from now on, lol.
And truly some of the things I have read on here have made me feel so much less alone.
Hang in there everyone.
HI Everone
I'm new to this forum and have been reading some of the supportive and illuminating posts. They have cheered me up and made me feel less alone.
I recently had two people from the medical profession: a physiotherapist examining my feet and a GP examining me at home for a disability grant here in England. Both said I had RA in my hands, feet,possibly chest and I'm now thinking my eyes. I returned to my own doctor and told her and she staunchly disagrees because she said my bloods were 'normal'. She has diagnosed Fibrmyalgia. Has anyone had this problem with their bloods please? Thanks.
Cordelia: hang in there. I have a degree in psychology and thought I would go on to take a Doctorate. Now I can barely hold a book and my sight is very poor. I have been listening to Audio tapes and it has helped (on fair days!). Can you use an audio recorder? Would that help?
Cordelia - welcome aboard. We are kind of a wild bunch, but when the chips are down, this is a place to at least rant without putting out on your loved ones or a doctor - keep posting and hang in there. Thanks both of you for saying hello. Took me a while to actually 'speak' and I'm an extrovert normally but I think accepting this whole thing bit by bit has been really tough. But a good friend of mine said, you should be talking on boards and forums because you have wisdom and stuff to offer as you do know a lot about this disease...I think I started to believe her so here I am now.