Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I DO! Do you?
Do you grieve your former - pre RA - self?
https://rheumatoidarthritis.net/living/grieve-loss-past-self?utm_source=weekly&utm_medium=email&utm_campaign=c7cc5630-2f09-46e2-b49d-8dd447f9dd54&utm_confid=sovh93pl3&aGVhbHRoIHVuaW9uIGJsYWg=1a85336702dd91d284a067c0be0b38b9d657eea2a0531ee58fcc4b066e901b4c
It's a combo for me because as I am approaching my mortality I look back on pics of me as a younger person, wistfully.
But one of the first things I look at in fill length photos is MY HANDS. I marvel at how perfectly, normal straight and graceful my hands WERE - not all that long ago. My hands were not always ugly, crippled and deformed! I didn't always have to try to hide them. They also used to be FUNCTIONAL - and no longer are. I used to knit, crochet and do counted cross-stitch! I found those activites very soothing - a way to eliminate stress. I also found the finished products a source of pride. I was GOOD at what i did creating several original cross stitch works of art. Now, they are reminders of days gone by. Of what was and is no more.
My hands - my body - once were normal! How did this happen to me?
> > > What do you miss the most? < < <
A pain-free, carefree life? Activities you can no longer do? Not being fatigued all the time? Being more independent? Having and being more fun?
What I do remember is 2005-2010. I was on injectable mthx and Kineret, a daily needle. I was 100% for 5 years. I did a Master's degree, got into bicycling 30-35 km a day. I lost 80 lbs in a year. Even though I got my right forefoot reconstructed, the deformities were so bad, my hands were still mostly good, so I could play flute. I think if those years as being normal. Sometimes I think I might get back there. Then I realize too much is damaged & deformed.
I miss riding my bike & playing flute the most. Probably gardening, too. I still garden, but I can't keep up with the weeds, the pruning, canning and freezing. My hands won't let me do it. My body won't let me bend down. I just left all my green, yellow and burgundy beans to go to beans and rot. I usually freeze 10 packages, which would get me through the winter.
I'm on prednisone and feeling better. My knees are so damaged I can hardly walk, let alone work.
I miss being active with my grandchildren. They are very kind to me. But my dream was to play with them on the floor. The older ones-8 to 10 are into competitive chess. That would be great for me to play. Except I never learned chess beyond how the figurines move. I did play checkers, and cruelly beat them. Yikes!
I mostly wonder how much longer I will live? It's more the heart, lungs and kidney damage I worry about. Certainly the mthx has taken its toll on my liver, too.
As for being old, I guess everyone gets that. My mom is 91, and all she does is complain about how miserable she is. She's a multi-millionaire, lives in a fancy assisted living. She let her bones get osteoporosis, had some bad falls & broke her hip and pelvis a few times. But she has nothing else wrong, except taking the same dose of Synthroid that I do, daily. Even she admits hypothyroidism is not a big deal!
I hope I never get bitterly old, I have so much wrong with me, she will likely outlive me. In that case, my kids get my portion of the money, split equally between them all. My husband of 41 years who has stood by me through all this pains & suffering gets a small amount of money. My goal is to outlive my mom, for my husband's sake. Once she is gone, and 30 days have passed, I get my share, which I can pass onto him.
But I am babbling. I had a bad med failure this week. 'My rheumatologist pulled me off mthx for 5 weeks, cause my liver enzymes went up. But, my biologic lasts one day. The pain, flares, in Combo with fibromyalgia, was unbearable. Gabapentin has affected my kidney function, so my fibromyalgia, usually the lowest priority in my health list, is terrible. I could barely shuffle my feet to walk, my knees were agony, I didn't want to live. So, I'm on 10 mg of prednisone. I was supposed to see my rheumatologist so he could count swollen joints, but I woke up at 3am in a small town 4 hours east of where we live, in our trailer, screaming in pain. I made the executive decision and took 15 mg of prednisone. I can walk, and had a good night's sleep last night. No time to phone the doctor, I knew this would happen. Cimzia is not working. He thinks it will get better, since I narrowed the gap to taking it every 7 days. Not sure how that will happen, because it only lasts one day! Now to figure out which of the biologics I have not tried will work. Both Humira and Remicade will affect my liver. Rinvoc becomes the possibility.
Perhaps I will die sooner, than later. Funny thing, I'm not depressed, just facing reality. Sorry to be a downer!
I try to laugh at some of the things I can no longer do by saying I’m GLAD:
That I was never a Trekki!
That I have no one in my family who's deaf and replies on signing!
I’m not a surfer
Can't hitchhike anymore!
Can't make a peace sign or a heart with mhy hands!
I can’t cross my fingers – have to ask other to do that for me
I can’t give anyone the middle finger!!
I can’t make heart with my hands
I can’t play rock, paper, scissors
At least I can still pick my nose - and on good days wipe my ass!
I know exaclty what you mean about not being depressed about it. but I also think often about that statistic that RA takes 10-15 years off your life expectancy.
I remember a doctor once looked at my BP, cholesterol etc. and and was amazed how good they were. He said: "Good news, you'll live forever with those numbers. Bad news, you'll be pain forver."
So maybe it's for the best if our lives are cut short.
RIVOQ works for me though we aded hydroychoroquine.
Mthx is just the liver enzymes going up, although my heptologist says I have no liver damage.
I'm sorry you have lost so much, WG. I don't know if I mentioned, but I think RA is going to force me to quit my PhD. On the say I take my biologic, I am fine. I can read & type. The next day everything is fuzzy, and it rolls downhill from there. I don't think
The mthx will give je enough of a boost. I've been begging him to put ne back on Kineret, but it is not approved by FairPharmacare in BC. I'd be willing to fight for it, a daily needle is the issue. My body can't kill it fast enough with a daily needle, so I do well.
I guess I am really grieving that loss, too!
Marlene, may I quote some of your post here in my article as to why FRA needs a name chnage? I will use your first name only or any other identifier you chose.
I am speaking only to myself here. I tend to forget that if I didn't have an autoimmune thing, I'd still be getting older / slower / achier / clumsier / whatever, because that is after all the trajectory of the human animal. And it's human nature to find that trajectory baffling and somewhat insulting.
I always have to ask myself and my doctors "is this or that RA, OA, Spinal Stenosis, Osteposrosis or just aging!" It's usually "who knows" Maybe all of it combined!
But here's another little goodie I just found abou BALANCE that i was chalking up to age and mybe not:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6328213/
I have had to keep editing my article to add more and complications I am finding!
https://mirahmirah.medium.com/ra-a-name-that-trivializes-reality-and-needs-to-be-changed-16f48c1f156f
Then, I had a big party for her 80th birthday. It was also the day of the Grey Cup (Canadian football final) which was her favourite thing. I bought her a family ring, wrapped in nestling boxes. It was all perfect!
Except it wasn't. This active woman spent the whole party/game saying, "I'm old, I'm old, I'm old!"
My daughter was there, we all encouraged her. My father was older, dying from CHF, and he was loving and encouraging. But, it was the end for her.
She went home, never crossed the River again. She kept saying the north side was dangerous. I actually lived in a suburb town, upper middle class, on an acreage. Not dangerous at all.
She stopped doing things, my father couldn't golf, so after all those years of golfing on her own, she stopped completely.
It was the saddest thing I have ever seen.
I have physical reasons- RA damage, why I had to stop doing things! But she was overcome by mental illness. She became extremely depressed. Now, she awaits death, won't do any physiotherapy, just to maintain her health. Besides golfing, she exercised fanatically her whole life, to keep in shape.
I don't doubt that aging has affected me, too. In my 50's when I got in my 100% combo, my body did recover. Now, I can't do exercises, without chancing pulling something. My body doesn't heal or rebound. Still, I think without RA, I would still be very active. On the other hand, my life would be very different. I would not have gone on disability over 20 years ago. I would have more money, less need for help. I wonder if my marriage would have survived?
Anyway, great to be able to share about this! Great post, WG.