Showing posts with label NIH funding. Show all posts
Showing posts with label NIH funding. 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!

Monday, March 20, 2017

NIH CUTS IN SPENDING??? TAKING MONEY OUT OF RESEARCH FOR US WITH SO MANY ILLNESSES, My own priorities and doctors, Rheumy visit coning & Neck Surgeon, and updates for all

Been a very BUSY and beautiful weekend for me! I FINALLY got that OLD A/C OUT of the window and cleaned that mess up. In fact, I went out this morning to take the trash to the road and someone had already picked it up and taken it thank goodness! I mowed my front lawn, knocked down about 5 BIG old WASPS nests from last year! BUT, those darned things showed up this weekend! I've been waiting, and are already trying to build nests! I had one can of wasp spray but went and bought 2 MORE, which will probably NOT even be enough. The honey bees are also about to drive me nuts.... I am having to watch them, because they may try and rebuild the hive in that old bus. The guy that came and got them last year told me to watch out this time of the year. If I saw many, then let him know and he would bring a box so they would go in there rather than building in the bus again. It took him about almost a month all in all last year to remove all of the hive he could get out, get the QUEEN then all of the workers etc. He came back over like 3 weeks time, and kept getting more and more that he waited to come into the hive, and he got LOTS of bees. He said he felt like that may have been 50,000 or MORE when he finished up. It was scary but amazing! 

But, the damned thing "follow" me around. Yesterday I was working on my porch (I ALSO GOT OUT ALL OF MY HOUSEPLANTS ON THE FRONT PORCH) OMG, TWO OF THE HUGE ONES were difficult, but I have that dolly I can put them on and take them out on it... so I did that, weed eating more in the back lawn, sprayed for weeds again... put out more moth balls around the house and the storage building,did laundry, went to the market, I never made to washing the car, or getting to the cemetery yet... I HAVE THE FLOWERS, for Mom and Dad and my Grandparents all, but the weather was terrible at first, then the wind has been so bad, and that is fine for my parents... but my Grandparents are located where the wind is terrible so I have to actually tie down and anchor the flowers around the bottom of those "vases" on theirs so they will stay in... the flowers have been in the back of my car now for weeks... maybe I will get to that either today or sometimes this week. I have my doctors appt tomorrow FINALLY with my RHEUMATOLOGIST!! When they see how TERRIBLY MY THUMBS AND FINGERS, KNUCKLES ARE SWOLLEN ESPECIALLY ON MY RIGHT HAND I HOPE THEY DO SOMETHING. 

I am getting to where I lose more and more use of that hand daily. My grip is terrible. I barely can carry anything with that hand, and it stays so stiff, sore and swollen... if I get out and do anything, that involves my hands and fingers/wrists, they will swell and just almost not bend they are so stiff. BUT then next week I see my neck surgeon and my Cardiologist, and hopefully I can get the neck surgery done very SOON! The ONLY thing that SUCKS, IS that I MADE A RESERVATION TO GO TO WINSTAR on SUNDAY, NEXT SUNDAY, and my DAMNED APPT WHICH I DIDN'T THINK ABOUT WHEN I WAS MAKING IT IS ON MONDAY! So, I am not sure if I will change one or just "time" the drive back from Winstar to my doctors office, and drive back from there and see him. He is in Dallas, but I will have to really watch my time due to Dallas Traffic.

 It will be kind of mid-morning, my appt with him is at 1:15, so the drive usually takes around 2 hours from my home... so back to that Dallas area, would probably be about the time I would leave the Casino anyway. ALTHOUGH, NOW they are showing we MIGHT HAVE LOUSY WEATHER!!! OF course, always happens when I have something to do that means Dallas driving or if I make plans to run up to Winstar!!! GGGRRR... but that is TX weather this time of year. Anyway, I have got to look some stuff up and have 50 things, on my list... of course I maybe lucky to get 2 or 3 of them done today LOL... but hope all is well with everyone!!! BY THE WAY, DID EVERYONE HEAR ABOUT THE PRESIDENT WANTING TO CUT SPENDING WITH THE NIH???? THAT MEANS LESS MONEY TO HELP WITH RESEARCH TO CURE MAJOR LIFE THREATENING ILLNESSES! HE WILL build a damned wall, BUT does not CARE ABOUT OUR LIVES... WHAT A DAMNED JOKE! It makes me sick to even hear his name, what an ass... I SAID THAT IF HE WAS ELECTED WE WOULD BE IN A WAR IN LESS THAN 3 MONTHS, AND HE WOULD SCREW UP MEDICAL ISSUES FOR US... AND IT APPEARS MY PREDICTIONS COULD BE HEAD ON STRAIGHT!

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