Thursday, September 10, 2015

Day 10: Pain Awareness Month - US Pain Foundation and a great video to find out much more about Pain Awareness Month, the US Pain Foundation and How you can help!

Exciting News for IFAA - -FINALIST FOR INNOVATION AWARD! "Celgene" Innovation Awards


HOORAY FOR IFAA-FINALIST FOR INNOVATION AWARD!

The International Foundation for Autoimmune Arthritis is a FINALIST in the 2015 Celgene Innovation Impact Awards: “Unleashing the Patient Voice in Research”, with awards up to $100,000 for our submitted project idea!

IFAA is dedicated to bridging YOU with scientists so that OUR needs can be heard and then turned into real research projects. We are problem solvers, it’s what we do. Hopefully we are able to push this to the end and bring home one of the awards! Autoimmune Arthritis patients- it’s our time to be heard!

Congratulations to all the finalists:
1. Aplastic Anemia & MDS International Foundation
2. Cancer Support Community
3. Crohn’s & Colitis Foundation of America
4. FORCE – Facing Our Risk of Cancer Empowered
5. Foundation for Sarcoidosis Research
6. International Foundation for Autoimmune Arthritis
7. MDS Foundation
8. National Psoriasis Foundation
9. Research Advocacy Network
10. Pancreatic Cancer Action Network



Wednesday, September 9, 2015

IFAA, Tiffany and the Entire Dedicated Group with the International Autoimmune Arthritis Foundation - Thank you!

I had a very pleasant surprise at my door step Tuesday after the holiday weekend! My “regular” mail had already came. But, later in the afternoon, I stepped out on my front porch to see a large package with my name on it!! At first, I thought it was the “blue ribbons” that I am waiting on for pain awareness month. They have not sent them yet… BUT, IT was ALL KINDS OF AWESOME STUFF FROM THE IFAA AND TIFFANY! I was so thrilled when I opened it… an awesome very sturdy reusable bag, along with others that are also perfect to take to the market from the WAAD 14! I also had a nice pen with the IFFF Logo on it, and a huge book that came from the Autoimmune Summit 2015 - with all of the data from research and so forth they discussed at the Summit in New York! smile emoticon I am really enjoying lots of the data in there… extremely interesting to me… anyway, I will get a better photo up later. I had to take this one with my “web cam”. I am charging the battery on my good digital camera. So, I will make more when it is charged. Again, Thanks to IFAA, Tiffany and the entire gang… what an awesome job all of you do…. I hope to soon participate more. Due to all of the “circumstances” between my own health, My Mom’s health, then all of the other personal “agenda” that I HOPE to have basically over with in October… my hope is to get back on tract with my activism, advocacy, my own research, and doing more writing on my book, as well as working even more on my blog… by the way my blog seems to be “getting more attention”… and I am thrilled about that…


 To Learn more about IFAA, want to join in their Advocacy team and more  the URL IS:

http://www.ifautoimmunearthritis.org/

Tuesday, September 8, 2015

The "NEVER ENDING" Saga of Rhia, Autoimmune illnesses, cellulitis, abscesses, and feeling the pain, disgust, frustration for others like myself that seem to NEVER get a break

This is a post I sent to a friend on Facebook... she also is just having one hell u va time, dealing with "crap", illnesses, and all that entails when you feel life NEVER gives you a break! I realize some of it I've already posted, but believe me... I feel it is totally worth repetition... so others KNOW they are NOT alone!

 
 
 
  I SO, SO, SO can empathize with you and how you feel. It has been so much the same for myself. Between the already issues with Lupus, RA, and so forth, then the accident last year in March that my husband was in, now he has left and moved back to WA state.. we are filing for a divorce and honestly I am NOT sure to this moment WHY? Then I need lower back surgery, then my Mom in the midst of me finding out what was wrong with my hips and legs, which was my back, she comes down with a severe hip issue, that also turns out to be her lumbar spine also. She is 80 years old, and they do NOT even want to discuss surgery on her...but they are trying with medication, PT and supposed to do some epidural injections on her. About the time we got those scheduled her last living sibling, a younger sister, passed away of a rare stomach cancer, she had been fighting for a couple of years, then BOTH of us come down with some kind of stomach virus, & I spent several weeks of it seeming to come and go, and even got ill Sunday morning...I was so upset, I felt "fine" was dressed, and was about to walk out the door, and my stomach felt "odd" and sure enough, I almost did not make it to that bathroom and was sick to my stomach again, out of the blue... then I have been dealing with a "lump" on my mid left thigh now for about 9 weeks... my PCP thought it was cellulitis, and of course with my immune system being so compromised, he immediately put me on TWO antibiotics, which helped some, but after 3 ROUNDS of them, 7 days each, he wanted me to have a surgeon look at it, and cut it out...well, I had a hard time finding a surgeon close enough that took my insurance, finally did, but he could not see me for over a week! So, all of a sudden this "lump" that showed no signs of an outside infection... has not been red, warm, or appearing to be infected on the outside, but a week before I was to see the surgeon I woke up to it being very red, warm, and appeared to almost be trying to burst open... so I quickly called mt PCP and told him... so he put me on another round of the antibiotics until I could see the surgeon. Well by the time I saw the surgeon which was last Friday, it has abscessed inside, and he had to "CUT" it open, and let all of the infection out of it! He also sent some to be cultured, and I must have had "two layers" of infection. One kind of shallow, but another much deeper. Now he did this in his office, just injecting lidocaine in it, which hurt like hell and burned worse...and I am "tough"... nothing usually bothers me... but then I had to take the bandages off twice daily, after getting home, and "clean it out" with Q-tips and peroxide... when I took the bandage off the first time on Saturday, OMG I have a HOLE in my thigh deep to it almost feels like it is to my bone, and wide... like 2 inches deep and that wide... I almost could not do it, but I knew I had to.. so I did that and then finally yesterday, it was not quite as painful so I took a shower and used antibacterial dial liquid body wash which I had already been using, and he said to allow the soap and water to get into it, and clean it out... I did, and it hurt some but not all that bad... but then this morning, I began to take off the bandage and it again looked awful to me... it is still draining a bit... but I see him tomorrow thank goodness... now he did not address the "other lump" on my right thigh, almost in the same spot as this first one. It came up after my PCP began me on antibiotics, but I never said anything about it, thinking that medication would take care of it also... well it is still there, a bit larger, and I fear it may be the same thing. I had told the surgeon's nurse Friday, but I guess he forgot about that once he was working on this other one. So, I've got to point it out to him... it is just like the other one... it shows no "outside" appearance of an infection, it is just a lump under the skin.... to top that off my Rheumy wanted to put me on a new RA Medication, but before we could change I had to do a whole entourage of blood work, TB testing, Hepatitis, etc... well all was "okay
accept the TB test... that particular test has to be done just a few hours after the blood is drawn or it can come back not accurate... so mine came be "indecisive"... so I needed a damned chest Xray to show the test was just off... well I could not again find anyone close that took this stupid insurance, so I finally was just going to pay our Urgent care to have it done. Well, the order got misplaced that my Rheumy sent them..then due to this lump, my Mom, my Aunt passing away, I got delayed in doing the X-ray... so when I went out to have it done last week, they had NO order, or they just could not find it, and when I called and had my Rheumy fax it, it was for 2 views instead of one... so I did not want to have to pay double if it was not necessary, so I had to get hold of my Rheumy... and have them fax a new order for one view... I FINALLY got that done, and now due to the lump, the infection, the delay of the Xray... I've not had any RA meds in like 9 weeks or more!!! So, my RA, is so bad.. And within all of that is even more crap that has and is happening... and I am just frustrated, upset, disgusted, mad, and all the things you feel... it is like some of us NEVER get a break... EVERYTHING in my life has always been "complicated".... and it is just too old... for sure....there are days I want to crawl under my bed to never return.... and between all of that... my Pug has also had stomach problems and been sick to her stomach off and on also....

Monday, September 7, 2015

My Beautiful Daughter, Her awesome Husband and the two Grandsons, family... and also Heather a Senior this year...

I've got to share these pics with you! My daughter, Amanda, and her husband and their two sons, and also they have a daughter who graduates this school year... I have an awesome daughter, an Incredible Son In Law, and three smart and witty Grandkids... fishing, outdoors, hunting, sports, the lake... you name it they all love it!!!

  LOL!!! AND YES, MY DAUGHTER CAN "ROCK" A CAMO SHIRT AND BLACK LACE SHORTS!!!! ;)  

 

They have a blast down by Corpus Christi, at one of the lakes they go to, and all of them love camping, fishing, hunting, and kind of outside sport... I am so thrilled to have them as an awesome "team" as far as my family!