RA Connections - in the Texas/OK area - IN April!

This is awesome!!! Everyone in these areas of Texas or OK this is the time for you to get even more involved!!! I am planning on going to the one in Addison TX for sure! #RAConnections

Excited, Thrilled, Disappointed, Upset, Mad At Autoimmune Illnesses, and sometimes just upset with life in general - Not able To go to The Arthritis Summit next week!

I've not said much to anyone about my current situation with the autoimmune illnesses, pain, the severity of pain, a headache now that just won't go away, and all of the stress these autoimmune illnesses have caused me over the past month.

I always know, for ANY of us, plans sometimes change within a day! When you have a chronic illness and/or chronic pain, every day can be a challenge! WE can have our "great days", our "good" days, our "okay" days... and honestly it seems more days that it is SUCKS! These illnesses completely destroy our lives as far as whatever normal is.

They take us by the hand, heart, body and soul, and sling us around to the 4 corners of the Earth. We never know if we will land standing up, or sliding down that damned steep hill, with the rocks, twigs, gravel, and all scarring if not our "bodies".... our minds for sure.

I realize that "autoimmune illnesses" are NOT the ONLY diseases that are chronic and hit us in a haphazard way of life. But, they tend to be really good about waiting until we have some awesome plans scheduled, then totally ripping them to shreds within a breath's space.

I've been fighting with what I have felt was a Lupus flare now for weeks. I've also come to the place I MUST get these bottom teeth, "implanted" and anchored down. It is way overdue, and it is causing me to have all kinds of stomach issues, since there is so much either I can't eat, or I can't chew properly, thus I either avoid those things, or try to eat them, and almost choke, or they go down half chewed which is horrid for my stomach.

So, I knew I was facing a possibility  of not being able to go to the Summit with AF next week, which SUCKS big time, since I am one that made a "Platinum Ambassador" and should be there to represent all of us that had that honor, and be there to do what I am supposed to and that is to get those in Congress, "educated", "on-board" "possibly involved in the Arthritis Caucus" and backing the Congress people that are in the Caucus.

Plus I feel it is also my duty to lay out the "agenda" for AF 2015, and the things we need and hope to accomplish, from the issues involving now our "state" representatives, more on the realms of the DOD and the role in arthritis for our men and women that come home and develop these illnesses, to getting research out there in a more advanced way, and to "teach" ALL, public, government, professionals, the medical world, caretakers, patients, ALL about how "arthritis is NOT ACCEPTABLE" for anyone to have to live with.

So, to NOT be able to carry out what I feel is my duty to do, has really put me in a tailspin of hurt, worry, and let down. I feel I've let down the AF, the Ambassadors, and let down everyone who has stood beside me all last year no matter what helping me to see, even though I felt I was not doing enough, I was doing plenty, even when I felt like I wasn't.

Now I have developed something as of day before yesterday, that came on very sudden and hit me like a brick wall. I am not sure if it is a bad flare, or what. But, between a headache that is the WORST HEADACHE I have ever had in my life, that will NOT GO AWAY...my strength is none, I do well to walk across the house, I am freezing one moment, burning up the next, and I am in extreme pain from my head to my toes.... I feel as if someone has beat the literal hell out of me with a baseball bat, then ran over me with a car a couple of times. From my thumbs, all the way to my head, and all the way to down my toes, I HURT! A very DEEP BONE ACHE, that is relentless! Plus I ran low grade fever all day yesterday, and this morning, I can tell my body is fighting the fever, because I feel so damned lousy... I am hot one moment, chilled the next, cold the next, sweating the next... and our very HIGH Humidity is NOT helping it at all.

Anyway, I honestly am not up to sitting here, so I will close this for now, and explain more over the next couple of days.

But, I DO INTEND on doing EVERYTHING I CAN FOR THE E-SUMMIT!, and posting to social media and so forth as the AF storms Capitol Hill on Monday and Tuesday! I wish all of them luck, and hope it turns out to be an incredibly awesome Summit!!! Go Get Um!!!! I will be there in spirit....

Cure Click- Alzheimer's Clinical Trial - Thought some maybe interested in this!

http://curec.lk/19F3Fgh

Even those this is not "autoimmune" at this moment, I know many of us with brain fog issues, or that have had Alzheimer's in their family, like I have had. My Grandfather had full blown Alzheimer's and my Grandmother developed dementia also.

This can be done online, so I don't believe there is really somewhere you must "travel" for this clinical trial.

The link is above, and feel free to ask questions, if you have them. I know I participated in the "initial" trial information and I am supposed to let them contact me for more information, due to my answers to the first round of questions online.

Sjogren's and Dental Issues!!! Needs to be a Priority!!!!

I realize that this is in Oregon and one of the dentists that is trying to get ORAL HEALTH a priority in Oregon's Health Authority http://www.oregon.gov/OHA/Pages/index.aspx I gather much like Texas and our (DHS) Medicaid and so on, this is kind of the same thing. The HUGE ISSUE and of course I ran into this right middle of the road like a brick wall - that even though ALL of my DENTAL ISSUES were caused by an Illness SJOGREN'S - NOT ONE Dentist even took my Medicare Advantage Plan or any type of Medicare Coverage plus even if I could have went through numerous appeals, Humana probably would have not covered but about 40% of the 15,000.00 PLUS - (turns out to be over 15,000.00 due to the dentist "leaving off" the charges for the LAST 11 TEETH pulled the day my dentures went in... which was another $147.00 EACH for the 11 - making it another about $1,517.00 or so OVER the ORIGINAL "treatment plan" I agreed upon and signed before the work began. This is a total outrage!!! There is NO WAY ANYONE, and most certainly MOST ON MEDICARE OR DISABILITY can AFFORD OUT OF THEIR POCKETS $15,000.00 IN DENTAL BILLS!!! But. I had NO CHOICE!!
As I have posted over the last year when all of the mess began with my teeth suddenly "rotted" off at the gum line and then falling out! I had 4 of them within 4 months happen... well after the "whole mouth X-ray" revealed ALL of my teeth were doing the same.... So, here I am with all of these Autoimmune diseases, already a HUGE chance of infections due to the illnesses and the medications I am on... and by the way that $15,000.00 was much higher when I went for 2 other opinions!!! That was the Lowest in the ballpark figure...
Anyway, I have told myself and said it here also... WE MUST FIGHT FOR DENTAL HELP!!! When a chronic illness brings on this kind of destruction, there should be coverage through medical insurance... the proof of how the teeth "rotted" showed it was definitely Sjogren's that caused it... so there is NO question as to a medical issue causing the dental stuff...
Anyway, this article caught my eye from Oregon... and I wanted to share this with you also... this is another HUGE PRIORITY (among ALL of the others we have with Autoimmune and Autoimmune Arthritic Illnesses....

http://www.oregonlive.com/opinion/index.ssf/2015/03/lawmakers_should_commit_to_sta.html

FIX Medicare NOW!!!!

PLEASE Take a moment and go to this site!!! You can "automatically" send several of the "key" team of Congress that are the ones that really can get a handle on the issues with Medicare!!

http://fixmedicarenow.org/patients/

.@RepWalterJones, March 31st is almost here! Please help us #FixMedicareNow http://countdown.fixmedicarenow.org/card/OaBmgqDQhlz0iJwp …

 

.@RepTomMarino, March 31st is almost here! Please help us #FixMedicareNow http://countdown.fixmedicarenow.org/card/OaBmSMDTLr0HR5Nm …

.@RepMarkMeadows, March 31st is almost here! Please help us #FixMedicareNow http://countdown.fixmedicarenow.org/card/OaBmEKA7rCgX9ITq … 

 .@RepFleming, March 31st is almost here! Please help us #FixMedicareNow http://countdown.fixmedicarenow.org/card/OaBlLSC4NQ7eQF6e … 

@RepRatcliffe, March 31st is almost here! Please help us #FixMedicareNow http://countdown.fixmedicarenow.org/card/OaBl6pHie5SWsN3U …  

 @AWMooneyDC, March 31st is almost here! Please help us #FixMedicareNow http://countdown.fixmedicarenow.org/card/OaBlG0D2V164si5P …  

 

 

Cure Click! There'is A New Way "in town" to find Clinical Trials in your area!

There is a brand new way you can find those "Clinical Trials" that you may have wanted to try and enroll in, but wading through the "red tape" of those, trying to find ones in your area, for your particular type of illness can be a very daunting experience!

Now here is "Cure Click"! It can make your search for a clinical trial much simpler, and allow you to possibly participate without wading through pages and pages on websites. If you have any questions, feel free to post, or contact me. Below is more information about the program, and more explanation on how this could be the answer you have been waiting for as far as a Clinical Trial Experience!  Rhia

RHEUMATOID ARTHRITIS CLINICAL TRIAL SEEKING PARTICIPANTS

Rheumatoid Arthritis is a chronic inflammatory disorder affecting small joints in the hands and feet that affects about 1.5 million people in the United States today.
There is a clinical study available to those with Rheumatoid Arthritis, where the purpose of the study is to compare the proposed biosimilar study drug rituximab (GP2013) against a standard approved treatment rituximab (Rituxan®) to see if the study drug is as safe and effective in treating rheumatoid arthritis.
More about the study:

• The study drug (GP2013 and Rituximab) is administered by IV Injection (IV).
• At least 174 people have already taken this drug in clinical trials

If you are interested, the full study details and eligibility criteria are listed here.
Eligibility Criteria:
Participants must:

• be at least 18 years old
• have been diagnosed with rheumatoid arthritis for at least 6 months
• have had inadequate response or intolerance to DMARDs (disease-modifying anti-rheumatic drugs) and 1 – 3 anti-TNF (tumor necrosis factor) therapies
• have received methotrexate for at least 4 months with 25 mg/week as the maximal dose

Participants must not:

• have significant liver disease, or congestive heart failure
• be taking a high potency of opioid analgesics (e.g. methadone, hydromorphone, morphine)

Please complete the online questionnaire to check if you’re eligible for the trial.
If you’re not familiar with clinical trials, here are some FAQs:

What are clinical trials?

Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.

Why participate in a clinical trial?

You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.
Learn why I’m talking about Clinical Trials