Hi Girls, Gosh I was so excited to see all your stories...I am not alone and neither are any of you.
DebbieLou, thank you for the info on the Rituxin. That really is my last hope, as far as drugs go. The shingles thing bothers me, as 6 years ago, I had a run in with them...not fun. If I can find a good place to go for the infusion, I guess I'll try it. I have terrible veins and my doc's office IV nurse has a terrible time. After 4 sticks & searching she says, "just hold on I'll run into something soon" !!! She almost did, my fist if I could make one Needless to say, no IV that day. My doc says 3-4 hr infusion for the Rituxin, I wonder why yours is different? I'll let you know If I go for it & how I do. Panic attacks, you bet!
Hi hopeful56, Wow, quite a story. All of these autoimmune diseases stink! I hate to hear that now you are just doing pain management. I definitely understand, as a week ago I had an epidural block at the top of my neck right into the spine. They knocked me out, only took 15 minutes, & wow all the pain is gone & my neck moves great. They usually do these shots in a series of 2, but because the pain is totally gone, we're just going to see what happens. He injected me with Decadron.
The past year I have done exactly what you did...isolated myself terribly. It's hard to keep up & most people don't understand the pain & limitations at times. Every day, its an uphill battle to just shower or want to shower! I've made myself call some friends & my sister, to try to change my ways. Alone is bad. My husband is my rock of 35yrs & is just wonderful, but I need to re-join the world.
I have a question for you hopeful56. You said you used to work. Why are you not on disability? I have had disability through Medicare since 1979 (I was 30). They pay 80% of everything and I have AARP, which pays the 20%. It costs me $195.00 a month. AARP offers this 20% ins if you have Medicare even if your not a senior. So, I am totally covered for anything, except of course the $195 a month.
Hi pr glo, Aside from the arthritis/pain problems, we definitely have a lot in common. In addition to my husband & boys, both my parents had Alzheimers. My Mom 7 years, she died in 99 and my Dad, 8 yrs. He died last year. Talk about stress, which of course is the worst enemy for all of us!
I wish you lots of strength & hope in caring for your Aunt.
Remember to just do what you can do, keep her safe & clean.
Alzheimers attackes the whole family, not just the person.
By the way, at 14, my niece's daughter woke up with RA too...now they are saying she also has fibromyalga. We do have a lot in common. Hang in there!
Anyone for a towel on a beach somewhere!
It seems all of us are dealing with not just the pain/fear & stress of these diseases, we're all dealing with side issues, one of which is depression
When my Dad died last year, we were very close, that is what started my panic attacks. My husband rushed me to the hospital with shakes I couldn't control & the left side of my face & arm were numb...I thought stroke!!! Nope, panic attack. My doc put me on 30mg Cymbalta daily and ativan when needed...gosh worked like a charm. Lots of deep breathing exercises and realizing when one is coming on and taking the ativan was the key to controlling them. Also, me walking around like a nut talking to myself, saying I'm ok, I'm ok... That was 8 months ago and I'm now down to 20mg of Cymbalta and hardly need the Ativan.
Well, I better stop this book for now. Because I'm new at this forum I couldn't figure out how to write each of you individually, so I hope I'm doing this right.
Everyone take care. We all need to think positive for each other and hope they could find a cure...my guess is it all has to do with hormones. Hope to hear from you all again