We have so many nice new people here that I doubt anyone noticed my absence. A lot of doctor appts, procedures, etc.
You may recall that my rheumy has not yet found an RA med that would help me, due to a blood disorder. I had a bone scan a couple of weeks ago. My rheumy called to say, the good news is that no erosions showed up, and the bad news is that she checked with the makers of Orencia, and the main part of RA treated by these meds is the erosions. As I have none, it would not be worth the risk for me to take. So I still have no RA meds.
She said there is still no doubt that I have RA because the blood work is consistently quite high. I just do not have any joint damage from the RA.But it could decide to attack my joints at any time, or my heart, lungs, etc. I asked if this was a common manifestation of this disease and she said it is very UN-common. In fact, she said I am her first, and she has been practicing in this city for a long time and is well-known and respected. She will still need to monitor me and, of course, I am to call if any problems...And the only course of treatment right now, is pain management.
I still have very severe OSTEOarthritis, however. This has deformed my spine and neck, and destroyed the joints at the base of my thumbs. I have had surgery on each thumb and found out today that they will need to fuse the thumb of my left hand. I got a new joint in this one, but it still needs further surgery to complete the reconstruction. This is the joint above the one that was replaced.
The bone scan did show up many places throughout my body that they contribute to the OA. Again, with exception of the thumbs, there is nothing they can do at this point, except (you guessed it...Pain Control) Also the surgeon doing my thumbs is going to get me some platform crutches. I don't know if I heard about them here first, but they are great for people with limited use of hands. The weight is rested on the elbows, which will be great, as it is too painful to put my weight on my hands, using a cane.
Okay, that is my update for now. Sorry to be so long
Hugs to all, Nini
Nini - your gentleness was greatly missed, and glad you shared. And I wish I had a magic wand, and I would wave it over everyone and we would magically be free from pain and disease. I am Pollyanna. Take care Cathy
I missed your sensitive, caring posts too Nini, so sorry you still have no answers
I re-read my post and realized I was very tired when I wrote it. I said the platform crutches puts the weight on your elbows. Boy, that must have seemed very strange, especially to those with arthritis in their ELBOWS
Thanks again! I'll try to get to some of the posts later.
Much love,
Nini
Nini, vent all you want to. I'm so sorry that they can't find a RA med that will work for you. Then with the OA, I know that you're hurting. Pain control does help but it can make us spacy. Will be thinking of you and will be sending you huge cyber hugs.
Another thing, if you need to talk or vent, you can always PM me and we can cheer each other up.
I'm sorry there's no meds out there for you. :( Gotta look at the birght side, at least it hasn't done any damage yet! *hugs* I wish we all had better answers for you :( Hang in there!!!!
Marisa, Thank you for your kind response. You have also been there for me in the past. I haven't seen much from you for a while. Hope everything is okay with you. Thank you too, for the offer to PM you. Might take you up on it, when I have more time to get my thoughts together.
Katie, Thank you, too. I know you have been through a lot lately. I'm so glad to see that Justin is coming home soon. I hope the loss of his gallbladder makes him feel much better! How are you holding up? I hope you are taking care of yourself and getting enough rest (oops! the "Momma" in me is kicking in
Good night, all. And thank you so much. I'm feeling better, and starting to see the good there is in all that is going on.
Be well.
Hugs, Nini
Nini, thank you for sharing your life with us. It is very frustrating when the doc looks at you and says..."Sorry I can't do anything". It is enough to make you cry right there and to have some despair. Have you asked her about AP therapy? Would that mess up your blood work?
I do want you to vent. A very wise person on this board reminded me that your family can't take all of the venting. Sometimes you need to share it among friends. Please trust us enough to vent away, dear friend.
Take care...shel