I've been diagnosed and tested positive for RA and the HLA-B27 gene and
have Ankylosing Spondylitis, fibro, crohns and uveitis in my eyes.
I just wondered if anyone else had this combination. I would like to hear from others about how they cope with these conditions.
Some days the pain is more than I can tolerate but I think the
depression can also be as bad. I try to "get out of myself" and think
of other things and count my blessings. Where I go for my Remicaid
infusion are so many young people taking chemo for cancer. I wonder
when I see them losing their hair and still smiling . . . what do I
have to complain about".
Thanks
Hi Kwendt,
That sounds like an awful lot to deal with. I have Still's disease and am currently going through the diagnosis process for Crohn's. From speaking to many others depression and fatigue are the things that people find the hardest when dealing with these conditions, so you are not alone. I cope okay most of the time because I've known little else over the past 9 years; I'm currently at university, it's hard and it took 3 years to get through my first year but I love it and wouldn't want to do anything else. But to get through term I usually sacrifice my holidays for hospital and doctors appointments - I've spent the summer having surgery and changing my meds - starting Enbrel and next stopping the Cyclosporin, but at least that means uni should be easier over the next years at least.
I think we are all good at adapting to our individual situations, although it can take time to come to terms with the loss of the things you used to do. There are many people suffering in many different ways - it's okay to feel down as long as you don't get so far down that you can't pick yourself up again. I think that most people decide, once they come to terms with something like RA/Cancer, not to let it take over their lives and to face it head on. Boards like this, where people encourage, support and understand each other, help no end. Hope that helps,
Take care
Moonie