Hi all... I just found this. I was on another for RA but so few people are using it that weeks go by without a new post. I never got replies to my questions. I only found that forum a month ago so I think I'll switch to this active group. Luckily, the Irritable Bowel Syndrome forum is very active, after all, who else is willing to discuss those embarrassing miseries? I like to reply a lot so I think I'll take a moment now to introduce myself and reassure you I've had a lifetime of medical woes so you know I can relate to yours. I went through a lot with some other, also very bad, conditions that were eventually either cured or are now managed ok. Now, my primary conditions that I still have are severe IBS (after 20+yrs of Ulcerative Colitis finally going into remission, you'd think I'd get a break) and moderate RA since 2002, after a bad flu thing. I had managed to go my whole life with no allergies at all then...bam, with RA came some whopper, life-threatening allergies. The first 2 Rx ordered for RA each sent me by ambulance to ER in full anaphylaxis. First was Celebrex, then Prednisone, and medical tape now wreaks havoc with me, even bandaides. Of course, I'd had each in the past, especially Pred for UC and tape during all my surgeries. So now, not only can I not take any sort of anti-inflammatory, even aspirin or ibprophen, but my orthopedic surgeons, rheumatologist, can't try cortisone shots or use tape on me(actually paper tape is ok) so they call me a challenge. I wear a Medic Alert bracelet and carry an Epipen in case I’m ever found unconscious. My poor sweet husband insists on being with me when I try anything I haven't had recently, even OTC, although he was with me those other times and was scared witless. "Tom, if I pass out, call 911.... well gee, Cathy, shouldn't I call them now before you pass out?"... Duh!...what was I thinking? Next, I was put on Plaquenil but wanting to give it a long time to kick in, I didn't complain about the awful diarrhea which caused me to lose 30lbs. Then it just stopped working suddenly whenI caught a bad headcold with fever; soon I needed help dressing, feeding myself etc. My husband learned how to use the curling iron and you should've seen me til he got the hang of it! After many months, the new Rx of injectable (avoid GI) Methotrexate kicked in and I'm still on it 3yrs later. One of the most disabling symptoms I suffer every afternoon is extreme fatigue with bad body pains all over exactly as if I have a very high fever. I can't even think clearly and I don't care about anything anymore, not even if it's something I enjoy, like quilting (machine only-not hand sewing anymore), reading, being with fun family/friends. I try simply going to bed at that point(preferably sooner) but some days I must take meds. For me, that 2-3hour sleep is absolutely restorative and allows me to enjoy evenings, even if just watching TV or going to a movie(but oh.. the stiffness after sitting so long...can barely walk). So, my whole family just knows that if they want me to join them for a birthday dinner, graduation, Academy Awards party, go on a haunted house tour at night...anything... they must plan time for me to rest 2-3hours in bed. I've learned to live with it, but between this and the sudden, unexpected, severe, hours-long diarrhea episodes that hit me days every week, I can no longer work even parttime. I can't even last long enough to go to trainings for a new job ie an answering-phone service in my own home. I know because I tried. I’ve found I can’t even last 3hrs in a fun quilting class to learn how to do a new small project. Disappointing. I’m always missing out on fun things and everybody has to take turns walking slowly with me. That happened the other day… my fast and healthy 88yr old mom noticed how they’d gotten ahead so came back. Good grief! At least I no longer need much help with dressing… it was hard in public restrooms to ask a stranger for help. My shoulder is getting more useful so after getting a shorter haircut before each shoulder surgery Mar & Sep '08, so Tom didn't have to always do my hair, maybe I can let it grow a little now. Oh, my, I’m rambling… sorry! I do have some RA questions and replies to Joonie and others, but I’ll wait for another day. I look forward to sharing my frustrations and experiences with you and hopefully, some wisdom, but maybe 59 isn't old enough to have that! I need someone to listen to me and I can be a good listener too. I notice that most posts have replies here; it’s important to validate how people are feeling. I am happy I found such an active group of support...... PS Am I supposed to add my meds at the bottom?
You are in the right place this board has alot of good info that is shared. I don't post much but I do read and take in the info. Welcome... Laura
Welcome!!! HGWelcome here CathyMarie. Yes , this is an active forum. Sometimes I just hang out and read the things that have been posted. You don't have to put your meds on the bottom , but there are some that do.