New things to come...

 I'm redoing one of my FB pages, that has more to do with Lupus, RA & other Autoimmune Illnesses.

https://www.facebook.com/ramblingsofaseasonedsoul

I will also be getting a new Instagram account. I'll give you that once I do it.

NEW RA Medication "JAK and JAK-1 Inhibitor for "Oral Use" in Rheumatoid Arthritis

New Clinical Trials and Information from the FDA in regard to a brand new Oral Medication, first of it's kind for RA... on the horizon possibly...

http://www.rheumatologynetwork.com/rheumatoid-arthritis/clinical-update-baricitinib-rheumatoid-arthritis

There is a "supposed" New Rheumatoid Arthritis Drug, (Oral) another JAK and JAK-1 Inhibitor on the horizon BUT there seems to be questions in regard to causing "blood clots" and it is in Clinical Trials at the time. This would be the "1st) of a kind RA medication that would be a ONCE daily oral med. We NOW have another JAK Inhibitor, Xeljanz on the market. You take it twice daily and it is an oral medication. What my Rheumatologist told me it is usually good for those with >mild> RA as a "stand alone" medication BUT for those like myself with "severe" RA,other medications such as my Actemra that I take by injection which is a biologic, along with other medications are needed when the RA is in severe form. I've really been through the mill on these two. I've been on Actemra now for about 9 months or so. But, my hand joints,wrists, fingers and especially my thumbs are really bad! So, he put me on the Xeljanz orally I take twice daily. Well at first I was thrilled then I got to reading and worried about the biologic and the JAK inhibitor together. I spoke with my PCP and see my Rheumatologist next week. What my PCP told me, is that "each person" is individual, and they have to put out the information for "overall" folks, BUT that my Rheumatologist has done is own "testing" as far as how his patients and those in the clinic do overall with the medications. So, he decided for me it was a "good fit"... which of course we all know that because you "read" something online does NOT mean it is so for you also... but this is exciting news for another alternative, or addition to our other RA medications. As well as many possible other autoimmune illnesses.

Here is more information and this is by Lilly....

https://investor.lilly.com/news-releases/news-release-details/lilly-file-baricitinib-resubmission-us-fda-end-january-2018

https://www.incyte.com/what-we-do/develop.aspx

Day 1 - #HAWMC - WEGO- Health 30 Day Blog Challenge - What drives us to BLOG!? (running a bit behind)

WEGO Health Blog/Writer's Challenge Day 1 #HAWMC

I've been a "driven" writer since I was abut 13 years old. I began writing poetry back then, and a few short stories. I was even the "editorial" writer for our High School Newspaper. I took on a few tough subjects, from "Holes in our student parking area", to giving our students more of a challenge when it came to subject matter and getting us ready for what we would face in the real world; after high school and college.

I continued to write in "handwritten" form, before computers. I have notebook after notebook filled with my writing. I have most of them still with me, and have been able to put much of the material on the computer.

At the age of 14, I had a neighbor who was a RN at our local hospital. I seemed to "soak up" everything that was "medical" in nature. I volunteered as a "Candy Volunteer, I guess then called a "striper" and I stood beside her every chance I had spending all of my free hours learning about the medical world. From watching them deliver babies, to taking care of those babies and Moms, and learning at that time how to "pack instrument" packs, because back then most instruments were not "disposable". We had certain instruments for certain surgeries that had to be cleaned, disinfected, wrapped together, then put in an "autoclave" that sterilized them further to be used in surgeries.

From there, my mind was made up, I would be in the medical field. Of course things change, and I got out of high school early, wanted to go to work, and married young. We had my son 2 years later, but by the time I was about 22, I knew that is not what I wanted for my life. I went on to divorce my 1st husband, and then was a single Mom, with bills to pay, and went to work at a bank in Dallas. Still I was restless because I was not doing what I felt was my calling, my heart's work, and what I was supposed to be doing in my time here. I left the bank, remarried a couple of years later, got some college under my belt, and went to work in a hospital, but in the business office.

Those 6 years there made me know even more that I wanted to find a way to be in the medical field, more hands on, and not behind a desk collecting money from sick people.
Yet, again, even after having an offer from the hospital for them to fully pay for me to go to college and get my LVN degree, at that time, I had two younger kids in school, and was unable to go to school full time, and support my family also. Oddly, enough, I went ahead and took the "entrance exam" to get into the nursing program and passed it as #1! That made it even more difficult for me to pass up the opportunity. I not only had the drive, I had the offer to pay for my classes, then work for that hospital for a year to "pay back" a portion of my college. Then I could have went any direction I pleased. Yet, family came first, and with a heavy heart I declined that opportunity.

I was friends with a woman that was the head of nursing there, and there were days she was almost unable to walk. Her feet would hurt so badly, she could barely stand on them. I found out she had Rheumatoid Arthritis. That and another young woman that worked in the hospital pharmacy, had a type of "stomach issue" autoimmune in nature, that there was little known about, much less on how to treat it, and give her the life back she wanted.

All those years I continued to fill notebook after notebook of my writing and poetry. That was the one "steady" in my life, my writing. I did go to college, and took accounting classes and business classes, and almost had my degree in business. I was struck with Migraines, that were horrific. Over the years they would make me so ill, I would miss work for days at a time. I never "hid" that I had the headaches, but I could not predict when and how long they would come on and last. In fact, I lost several jobs either having to resign jobs, due to missing so much work because of the headaches, and other health issues, including needing surgery on several joints. I had painful problems with my knees, shoulders, hands, and elbows. Again, missing work for surgeries on painful joints, in my 30's that the doctors could not really explain.

I had went to a "pain specialist" long before they were really heard about, mainly to see if he could help the migraines. I had injections into the occiptal nerves in my neck, was hospitalized, had every test available, yet no doctor could put the pieces together as to what was "wrong" with me.

At 40 years old I was an avid exerciser, daily, I ate only healthy foods, watched every pound of my weight, and did everything "right" for my health. Yet on January 8th 2001, I suffered a heart attack.

After that, doctors began "speculating" what was medically wrong, and a huge amount of "stress" was a portion of it. My 2nd marriage although lasted 15 years, put me in a horrific "trauma" day after day, and that stress my doctors seemed to feel was what partially caused my MI at such an early age.

I began to have tests, be able to see better and more advanced physicians, and around the age of 45 I had a young PCP, who finally put the pieces together, along with the proper blood work and finally was open minded enough, to "listen" to me. He found out that I had some "type of autoimmune issue"(s). He sent me directly to a Rheumatologist, who ran more tests, and determined I had MCTD, or possibly Lupus, RA, Sjogrens' & Raynauds.

I had already discovered a whole new era in "writing". Online communities, of people such as I, and that my "writing" could really be helpful through these communities, through my own "blogging" (at the time I really did not even understand what a blog was) and that even though I never was able to go into the medical field to help people on a plane such as a nurse, doctor, or in research. I COULD bring my story as well as a great deal of information to so many others such as myself, that were severely in need of answers, of the questions to ask their doctors, of information on new medications, and through other telling them their own stories.

Thus, my writing and medical "knowledge" finally came together about 10 years ago, and I began to "help" others through my own frustrations and information about the diseases they had been told they had, but were frightened to even ask their physicians for more information.

So, out of my own Chronic Pain, many surgeries, dealing with several autoimmune illnesses, tests and knowledge, was born my own blog, and my own way of helping those who are in such need for someone "listening" and truly understanding their problems.

LUPUS AWARENESS MONTH 2016!

LUPUS AWARENESS MONTHS 2016!

 

http://curec.lk/1Tp5xIH

Please Share your experiences and information this month on Social Media about Lupus, about new medications, new clinical trials, and all of the new ideas out there about Lupus!

Trying to Contend with a Mom with Dementia and my own Body reeking Havoc over me... ( OH and looking into NURSING HOMES)

IT has been another insane WEEK for me! Mom would NOT really participate in any Physical Therapy, basically did not eat for a couple of days, would NOT get up, would not "speak" when I asked her what she wanted to eat, etc.... and FINALLY YESTERDAY, when she realized she HAD NOT TAKEN ANY MEDICATION for a couple of days, and HER BACK WAS HURTING BADLY, and that she needed to try and get up, let the aid give her a shower, change her sheets, finally woke up enough to eat, take her medications and so forth, so I got all of that taken care of, and I have been there every day, and several days I went twice. But, as I told her, when she lays there, and just ignores me after I have asked her about eating and so on, 4, 5, 6 times, and I continue to get no answer, (she is awake and hears me) she chooses to just not answer or she just says NO,

 I do not want anything.... I finally give up, tell her I need to get home to do my own house work, and my own things and I leave. Well, I got everything done, and said something to her, and she said, "Well, my daughter" has the same problems.. so once again she had NO CLUE who I was... and this "woman" she keeps talking about coming over is ME! She just does not know anymore most of the time that she is even at her own home, she does not know whether it is spring, summer,fall, winter... she has no clue what day it is, what month it is, refused to go to her heart doctor's appt yesterday, refuses to go see her own doctor, she claims she is not "strong enough" even with a walker to get there... 

which NO she is NOT because she stays in the bed most of the time, not moving, not eating, not drinking anything again but diet drinks... and some Ensure... and ALL of us have tried to get her to understand the pain is worse when she continues to not get up, move around, she is weak from laying there, not eating, not taking her medications unless I stand there and force her practically, and it is taking its toll on me in every way.... but I have just had to come to the place this week to realize that is NOT my "MOM" there, but just a "shell" of the person my Mom once was... 

her mind, and all is "not my own Mother anymore" and that is very difficult to deal with. I had to forego my neck surgery, which now my lumbar spine is getting worse, and even sitting here is causing my hips and legs to hurt and my feet to go to sleep from the nerve issues. My pain level just as I told her is HORRIBLE BUT I still HAVE TO GET UP, NO MATTER HOW BADLY IT HURTS AND KEEP MOVING! I cannot have the luxury of lying around, and doing "nothing"..... whom else will do it if I don't? Anyway, I "think" the main woman to evaluate her is supposed to be out today, but I have NO CLUE for sure if or when she is coming. So, I am trying to find that out. I am not rushing over there early this morning if no one is coming, because Mom will NOT be up to even know I am there if I go too early..... so continue to keep your prayers and thoughts coming... Love all of you, Rhia

BY THE WAY, I found out, that a "nursing home" can cost as much as 4160.00 A DAY after the 1st 20 days, so that means $12,000.00 a MONTH for someone to be in a nursing home! how Insane is that??????

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