Showing posts with label keeping people up and living their lives. Show all posts
Showing posts with label keeping people up and living their lives. Show all posts

Wednesday, March 22, 2017

Rheumatologist visit went well, start Enbrel when insurance approves it, still pissed at Congress, dealing with severe pain in many joints & trying to get the word out for everyone to write Congress & let them know about the business of insurance, cutting "entitlements" and more...

I had a very "good" visit with my PA yesterday at my Rheumatologist office. She FINALLY BELIEVED AND SAW JUST HOW SEVERE my RA has gotten since September last year. She immediately saw the severe swelling and inflammation in 16 of my JOINTS! 
I also have "synovitis" in between several of my finger joints on my right hand, swelling in my ankle is somewhat from the RA, and the stiffness, weakness in both hands, my ankles, hips, feet all related in some way to the RA and Lupus. She has put me on Enbrel. She felt the Xeljanz would not "touch" the severity of the RA now. She said if the Enbrel worked somewhat in about 8 weeks or so, she may consider putting me also on the Xeljanz also, to help the Enbrel. She said we would "try" to get me off the daily Prednisone, due to my osteoporosis being so bad, and she agreed it probably has something to do with my fractures of my hip. My Orthopedic surgeon said the same and so did my PCP. They felt although the fall was very hard on that hip that I may not have had a fracture if I had not had the severe osteoporosis that I do. 
I see my Cardiologist next week, and if she says it is okay for me to be put back on one of the pills for osteoporosis, although mine is already severe, it "may" help to protect me from just having a joint "break first" then me fall. That happens at times with severe osteoporosis. It happened to my Grandmother. She did not fall 1st then her hip break. It broke and then she fell. My parents next door neighbor also had that happen. She was just walking down the hallway in her home, and her hip broke. So, thus the reason for trying to get me off the Prednisone and hopefully on one of the pills, like Fosamax. I cannot have the injections again. 
Once you have those for a few years, due to the other issues that can cause, with a particular type of complicated femur break, I would have to just go on the pills instead. I see my orthopedic surgeon next Monday to hopefully begin getting me prepared and okayed by my insurance for my neck surgery. I am in so much pain, honestly all over, I can barely stand to move, yet if I sit for just a bit, then I am so stiff, I can barely get up and try to walk. So, it's damned if I do and damned if I don't. Plus now not only am I fighting those damned red "paper wasps" already, but the yellow jackets, and last night those damned "salamanders" showed their asses on my porch. I happened to have my fly swatter and knocked the hell out of him. Hopefully that is one less, it was a grown one so those are the ones that can breed the little devils that can breed in dozens very quickly. Then the gnats are nuts, the "May flies" are crazy, fire ants... dammit without any "winter weather" all of the "bugs" are just everywhere. We still don't know what this "bite looking rash" is... she thinks maybe some type of dermatitis, but I still think it is shingles... just not as strong of a case of them due to the Valtrex, which she said they do use for the shingles. I hope the insurance approves the Enbrel quickly and gets it out to me... I am in such severe pain, it is horrible....

These are the very issues, like insurance and the Enbrel, and "cutting things like Medicaid and other entitlements to those who need the insurance so badly due to severe and chronic illnesses, many that need expensive medications and continued medical care that means "Specialists". We also NEED the NIH to be able to have funds to continue research on so many illnesses... things are just a damned mess with our government and only us, the PEOPLE can do something about it!

Thursday, February 2, 2017

The TRUTH on Pain Medications, Legitimate Pain Patients and their doctors, and the horrid accusations that others sensationalize that harm true chronic pain patients.




This article RINGS SO TRUE! It is NOT Pain Patients who are legitimate and see their doctors, take their meds as prescribed and do all of the other things our doctors request. BUT, we NEED to be vigilant! 

 l locked away, just in case. I KNOW that ALL OF US who are truly CHRONIC PAIN PATIENTS, that DO need our medications, or we would be stuck at home, on the sofa, unable to do many things that with our proper doses and doing what our legitimate physicians tell us, we can have a "quality of life"... as I have said, if I had no pain, or it was manageable WITHOUT the medications, 

I would gladly get rid of them. But, I have way too many chronically pain illnesses and problems, that I have even had surgery on, yet that does not "fix" everything. Even with a broken hip, I was off the stronger meds in about 3 days and back to my "regular" doses once the hip was repaired, the hematoma taken out, and now I face what probably "caused" or at least had a probable reason for my fall. 

My right foot and ankle have been badly sprained. So, bad that I've had it X-Rayed 3 times because I could not even put it on the ground at first. I have some issues after 3 severe sprains, and being extremely flat-footed, and as we age, we become more flat-footed, that and the loose tendons and ligaments and probably torn are causing that foot to be extremely "unstable" as the foot specialist told me on Tuesday. My hip is actually quite stable, but that foot wants to "roll" with me, it hurts and swells like a grapefruit if I walk on it for too long or stand. So, I've gotten a corticosteroid injection in it, which hopefully will help some starting today, it takes about 3 days for those injections to begin to work, I start PT on it next week, and I now have special inserts in my shoes to help to stabilize that foot and ankle. It could be all of these fail and if so I may face yet another surgery to repair those torn tendons and ligaments in order to help stop the problems. But, IT HURTS! Just another reason my medications are crucial to my daily abilities to take care of my home, myself, and the things we "normally" do in our daily lives to have that "quality of life" as much as possible. 

Even with the RA medications, my wrists and hands, fingers are in terrible shape, and it hurts like hell to even sit very long and type.... so you NEVER get OUT OF PAIN totally... but the medications are designed to make the pain tolerable where you can do the things you need and want to do in your life.