Tuesday, March 28, 2017

Cancer Support Community and Clinical Trials & NEW CLINICAL Trial FOR GENETIC Types of Cancer





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Thursday, March 23, 2017

National Puppy Day!

It is National Puppy Day! I just saw on the Nightly News! So, here are my 3 adorable pups! Tazzy and Bub's who now are in heaven both waiting to greet their Mommy someday and Peanut, who keeps me happy, mad, thrilled, a bit peeved, but also keeps me "sane" for the most part. I also have my "fur-baby" that I have not yet went and got. With all of the doctors appts and so forth, I wanted to finish up with the majority of that first, before I bring him home. Now that my Enbrel is coming and I see my other 2 doctors next week, I think both I and Peanut will be ready for his "brother from another Mother"




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!

Tuesday, March 21, 2017

TIME TO LET OUR CONGRESS PEOPLE AND OUR GOVERNEMENT KNOW OUR ISSUES WITH CUTTING FUNDING TO THE NIH, MEDICARE CUTS, AND THE RIDICULOUS EXPENSE WHAT THEY CALL INSURANCE WILL DO TO US!

https://votervoice.net/Shares/B_sgLAoYACnXMAZQzYQ7FAA

ABOVE IS FROM THE AMA! YOU CAN GIVE YOUR OPINION TO YOUR CONGRESSIONAL MEMBERS. 

 

 

 

This one BELOW IS FROM THE ARTHRITIS FOUNDATION:


http://af.aristotleactioncenter.com/ActionAlert/TakeActionSinglePage.aspx?aam_GUID=342222da-d063-4162-89e4-02a2f8fa8998

And go to your REPRESENTATIVE AND CONGRESS PEOPLE'S WEBSITES! MOST OF THEM HAVE EITHER POLLS OR CONTACT THEM PERSONALLY WITH YOUR VIEWS! EMAIL, SNAIL MAIL, BLOG, TWEET, PLEASE JUST GET YOUR PERSONAL FEELINGS AND THOUGHTS ABOUT THIS CUTTING OF NIH AND OTHER VITAL ORGANIZATIONS THAT WILL NOT BE ABLE TO DO TESTING AND RESEARCH FOR OUR SERIOUS ILLNESSES... 


AND TELL THEM HOW YOU FEEL ABOUT THE "HELP WITH HEALTH CARE INSURANCE" THAT WILL GIVE MANY NO WAY TO EVEN THINK ABOUT PAYING FOR IT, OR CUT OUR MEDICARE BENEFITS... WE MUST TELL THEM... THIS IS A NATION OF THE PEOPLE! THEY ARE WORKING FOR US!

Rheumatologist appt today, hoping for Xeljanz, severe finger, thumbs, wrists pain, stiffness, swelling & needing relief - Also thinking that I have "shingles" and not something biting me

Today is the day! To the Rheumy I go. So far, my hand fingers, thumbs and wrists are hurting and swollen I hate when I go to a doctor and by the time I get there whatever is going on seems to be "better" that particular day! Since this has been going on now for a good while, they have been really bad on my right hand where i do well to type here, cannot open jars, cannot carry much of any weight with that hand and arm to the point it is really affecting my left arm and hand. My left elbow is now a mess I think. I know some of it is coming from my neck, but I knew the elbow has been bad for a long while. I've spoken about it before, after surgery on it in about 1998, now it is getting bad again, and I know it is due to me having to use my left hand, arm, wrist and shoulder much more than my right one. I could barely get my tea holder open this morning, because it hurts so badly to pull the lid off of it. I dread the drive up there though. His office means going on I-45 but then I have to make this horrid couple of miles that is a nightmare in order to get over to I-35 where the offices are for the SW Med Center. 

So, I always hate the traffic. My appt is early afternoon so that will help some, plus I will leave in plenty of time just in case there is issues with traffic, but still just the regular traffic that particular way is terrible any time of the day. Plus the drive home is almost as bad... same deal you HAVE TO be in the CORRECT LANE in order to make the cross back over to I-45 and that is about a 6 lane or more highway there, and goes all directions. Plus they have been doing a great deal of construction in that area so that even makes it worse. Then you have the idiots that don't get in their right lane until they have to cross over 4 lanes of traffic at the last minute and risk a chance of hitting someone with their stupidity. 

I know most of them are from that area and they think the "know" just how to move in the lanes, but usually even if they are driving like maniacs, it gets them no quicker there, than me, who is driving in the correct lanes with the flow of traffic. Speeding, is something I just don't do, BUT as many know in huge cities, with that much traffic sometimes driving the "speed limit" will get you ran over also. So, I've learned over the years in those places to try and drive with the flow of regular traffic, thus usually it makes it a bit easier to be in the lane you need to be and give yourself time to be there. I am a good driver as far as I am concerned, but it the other fools on the road that bother me... trying to look out for all of them, in so many lanes at once, and then trying to not hit someone when they cram on their brakes, or avoiding someone behind you hitting you because they are not watching to see brake lights coming on or they tail gate, which pisses me off to no end. Those that tailgate are just accidents waiting to happen. Anyway, I am hoping we try Zeljanx. 

That is my hope BUT since I am facing cervical neck surgery in probably a month, my fear is that they will not want to put me on the medication, until after the surgery, and a few weeks after it until I am kind of out of the woods for any type of infection. BUT, hopefully that won't happen, and I can get approved for it and get started quickly. I know they will have to send paperwork into my insurance company to get that medication approved. After all of the crap going on now with the government, my fear is many of us will wind up having to either NOT take our medications, because they will not cover them, or our co-pays will be higher, or we will have to try and get the drug companies to help with the costs, which many of them will do now just to be able to get the meds out there and hope the insurance will finally wise up, but I think it is worse when you are on any type of Medicare, especially a Medicare Advantage Plan. So, I am going over things and checking email etc. I will have to get out of here a couple of hours before I need to be there. by the time I get to the Valet parking, and then get in to check in, fill out paperwork since it has been so long since I was there and then all of the things to tell them. They are not aware of my hip fractures and my ankle/foot issues, or the complication with the hematoma on my hip and so forth. So, hopefully this visit WILL help and be one that is not worth going for as they do sometimes. 


I feel that maybe is my what I thought was some type of "bite" or sting, could be shingles. With them being on one side of my body, on my upper arm and on my torso, it sounds like and kind of appears to be those... I take the medication daily for my cold sores, which is the same family of virus that the shingles come from, so my thought it that my case might be "less" due to the medication... 

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!