My OP-Ed Posted in my Local Paper for my Participation in the Peer Reviewed Medical Research Program (PRMRP) to whom gets research Funding.

The Ennis Daily News

Area woman selected for medical peer review board Staff Report

Area woman Pamela Steele recently participated in the evaluation of research applications submitted to Peer Reviewed Medical Research Program (PRMRP) sponsored by the Department of Defense.

 Steele was nominated for participation in the program by a recommendation from The Arthritis Foundation.

As a consumer reviewer, Steele was a full-voting member, along with some prominent scientist, at meetings to help determine how the $278.7 million appropriated by Congress for Fiscal Year 2016 will be spent covering 39 topic areas.

Consumer reviewers are asked to represent the collective view of patients and family members when they prepare comments on the impact of research on issues such as diagnosis, treatment and quality of life.

“I felt pride in giving an opportunity to actually be able get funds
into the hands of worth researchers, who may be able to help and/or cure many different illnesses, syndromes and give better quality of life to both enlisted and those not enlisted,” Steele said. Consumer advocates and scientist have worked together in this unique partnership to evaluate the scientific merit of vision, clinical and rehabilitative research applications.


Colonel Wanda L. Salzer, M.D., director of the congressionally-directed medical research programs, expressed her appreciation for the perspectives of the consumer advocates in the scientific review sessions.

“The Consumer Reviewers on each panel are instrumental in helping the scientist understand the patient’s perspective and provide valuable insight into the potential impact of the proposed project. They bring with them a sense of urgency and remind all of the human element involved in medical research” she said.

Scientists applying propose to conduct innovative research focused on the treatment and rehabilitation of arthritis, one of the topic areas included in the PRMRP, which fills important gaps not addressed by other funding agencies. The PRMRP supports groundbreaking, high-risk, high-gain research while encouraging out-of- box thinking.


p.s. by the way....On my article that was published in the paper a couple of days ago, yesterday I went to see my Cardiologist for my follow up visit, and SHE told me she was proud of me and thrilled it was in the paper! So, I know some people saw it, and when your doctor says that it really makes you proud! :) So, thanks to Dr. Meg Sullivan for being an excellent Cardiologist and for really "taking care" of her patients heart, mind, body and soul. She really "cares"

RA my Enbrel came in, Lupus flare, Neck surgery coming up, 100% flattened disc, bone spurs, and joints giving hell, along with being tired and feeling lousy.

I FINALLY GOT THOSE two mini blinds up in my living room. This time I didn't step "hard" off the step stool. Thank goodness. But, the wood in this house is so HARD it is extremely difficult to put a screw or nail into the wood! It was definitely made from some extremely hard type of wood for sure. Anyway, my neck and entire body knew that storm was coming. I've hurt for several days and day before and yesterday was really bad. I had to make myself get up and do something. 

So, I baked a Lemon Pound Cake, got those blinds hung up finally, walked Peanut for a bit several times, and forgot I was completely out of any fresh fruit, and didn't even have any of the fruit cups or canned fruit I keep usually just in case I run out of fresh and don't feel like running to the market. It was almost 3PM by the time it dawned on me, but I threw some different shoes on, went to HEB & picked up a cantaloupe, a couple of plums, a couple of Gala Apples, and a HUGE Mango! I "hoped:" the Mango and cantaloupe were both good. I was almost too tired to get them prepared, but I finally decided I would get that cantaloupe scooped out, and cut up that Mango and they are both awesome! Sometimes the fruit is very good and sometimes very BAD! I hate when I pay expensive prices for fresh fruit, and it tastes like "cardboard". 

Then I picked up a red bell pepper, some tomatoes, and a cucumber. I've been eating salads again almost every evening for with dinner. So, I decided to add a couple of things that I've not been eating lately. THEN I FORGOT to get a new head of lettuce of all things. But, I still have enough for another salad tonight if I want one, so I am good until tomorrow at least. But, by the time I got to the house, and started to take those two sacks in, I was so tired I could barely pick my feet up off the ground. I don't know if it is just all of the running to Dallas Monday to see the Orthopedic Surgeon, plus last week the drive to see my Rheumatologist up there, and today I see my Cardiologist... but I feel just drained of all of my energy.

 I was on the sofa although awake but watching "True Blood" (I REALLY got into that series) and drinking coffee. I had quit drinking coffee for a very long time. Then after it began getting warmer, then I decide to drink coffee again. Usually one cup in the morning. But, it seems to upset my stomach, and that was one reason why I quit a year or more ago. It just does not set well sometimes with my stomach. My ENBREL CAME IN YESTERDAY! It was here on the porch when I got home from getting those groceries. BUT, I am about "half in fear" of starting it. When I was at my Rheumatologist office, we were talking about me being on a couple of the other RA injectables. It dawned on me, that when I was on the last one the Orencia, that is when I suddenly developed the cellulitis in both of the tops of my thighs. One week the left one began to have the lump in it, and then about 10 days later the other side in almost the same position began to have a lump. Later that turned into going to a surgeon, who had to open that mess up, and finally he messed up so badly (THANK GOODNESS he retired about 6 months ago) that I had to go to the wound care up at Charleton Methodist for 8 weeks I believe. They had to clean those out and put that special stuff in them to get them to get rid of the infection and finally close up, but I was dealing with that for almost 6 months or more. The Orencia, I feel was "contaminated".... I developed those places within a few days after the injection, in the about location I had been injecting them... and I felt it is was much of a coincidence that they came up a few days after the injection, in the same location from where I was doing those injections. 

Now, I do my B-12 injections monthly, and never have had any issues with those. And I am even more cautious that the doctors offices, when I give myself injections. I clean them several times all around on my thighs with the alcohol preps, and make sure everything stays completely sterile, and always cover up that spot with a band-aid for 24 hours. As most of us know we "carry" strep and staph or many of us do on our skin. It is almost impossible in the world we live in not to have some type of things like that on the surface of our skin. So, cleaning it is essential so not to "PUSH" those germs under the skin. Anyway, this one is in an "injectable pen" which is much easier to deal with, but honestly it to me hurts more than using a needle like I do with my B-12. I use the allergy needles for that and I never feel a thing. So, I put it in the fridge, and decided I would go back over all of the instructions today, and I am taking a shower in just a bit, so after my shower then I will take the first dose. I had to do this one once a week. My neck is definitely "worse". 

I believe I said that last night or night before last. LOL,,, I cannot keep up with the days anymore... it is 100 percent collapsed now and 1 of the ones he worked on before "may" be needing a bit of work, plus this time even on X-rays I showed several bone spurs. He said he definitely knew I had to be in pain, plus I can barely turn my head side to side. So, we are looking at probably the "middle" of April depending on how quickly the insurance approves it. Which they had already approved it last year, then due to Mom and then my hip fractures, I could not have the neck surgery. I think I just kind of "pulled" the muscles/ligaments around my neck and below it. It is much better today, except when I step a certain way. But, it is mostly doing okay thank goodness. Hell, now my elbow on the left arm, that was bad and I had surgery to attach the tendons back onto the bones, is beginning to "pop". It needed surgery at least 4 or 5 years ago, and I just took a couple of steroid injections, and decided to put it off. It is not hurting, so that is a good thing, it is just popping when I bend it or straighten it. If it's not one joint it's the other... LOL....

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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"

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!

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...