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Archive for the ‘Rheumatoid Patient Foundation’ Category

RAWarriorandMeACR2013a

Turtlemom and RA Warrior at ACR October 2013

Kelly Young, RAWarrior, is holding a Blog Carnival! The topic is “What difference do you think it would make if it Rheumatoid Disease were recognized for what it is by everyone – the general public, media and marketers, pharmaceutical companies, U.S. National Institutes of Health, the Centers for Disease Control and Prevention, the American College of Rheumatology, all healthcare professionals, your neighbors and your family…?”

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In a dream:

Before meeting my husband for lunch and then my afternoon cardiology appointment, I decide to take a “walk” downtown, browsing the shops, in a “World Aware of RD.”

I start at the County Courthouse on the square. All the flights of stairs into the building are newly surmounted on each side by gently inclining ramps. The elevator inside has been revamped to hold 2 wheelchairs at a time. The floors are smooth, and the crevices between the rooms upstairs have been filled and smoothed over.

After visiting the handicap-accessible restrooms on the second floor, I ride down the elevator and exit via the door on Pike St. The walkway curves gently around through the grounds under the oak and willow trees to the exit on S. Clayton St. The sidewalks have had their old tiles reset so the sidewalk is now smooth. There are cutaways at each of the intersections, and one in the center of the block for accessing the shops along that side of the Courthouse. I cross, carefully, in the middle of the block. People stop, smile, and wave as I scooter across the street as fast as I can!

In Red Hats for Us, a little girl, accompanying her grandmother, says, “Granny! Why is that lady riding a scooter in here?” Her Granny winks at me, and says, “Laura, that’s Mrs. Riggs. She has Rheumatoid Disease. She can’t walk far or long at a time, and she has problems holding things in her hands. She lost her voice because the disease affected her voice box. When you go over to shake her hand, shake her wrist so you won’t hurt her hand. Go on, now.” Laura comes over to shake my wrist. I smile and say, “Hello, Laura, I’m delighted to meet you.” She smiles and I smile at her.

Later, I meet my husband at McCray’s Tavern on the Square. The Maitre’d opens the door and holds it for me. He smiles at me as I come in. He shows me to a table that can accommodate my scooter or a wheelchair. I turn the seat of my scooter so I can face the table to eat.

After lunch, we go to our van. It is parked in a handicapped slot near the front door. The curb is cut away with a gentle slope onto the accessibility lane between van spots. I can get off my scooter at my door. My side is equipped with a handle to help me get in, but my hands won’t let me use it today. Instead, I use a Handybar that I can rest my forearm on instead of using my hands. My daughter has added some padding so my forearm bones don’t get bruised.

We drive down into Atlanta. Each intersection within the city limits has been re-done with cutaway curbs, well designed ramps, and wide pedestrian (and wheelchair and scooter) lanes. The crossing lanes are wide and have been smoothed to reduce the risk of tripping or tipping.

When I get out of the car at the doctor’s office building, I get on my scooter and approach the door. I touch my cane tip against the automatic door opener panel, and the door slides into the wall, preventing me from being smashed by a heavy, medical building door. I enter the building, and signal for the elevator. When it arrives, I drive into the elevator. A woman there asks me why I’m riding a scooter. I tell her Rheumatoid Disease and prepare to explain. But she’s ‘way ahead of me! She says, “Oh, my aunt has that. She has heart complications and is visiting the cardiologist today because the covering of her heart is affected.” [Oh, my! Someone who knows and understands! Oh, Wait! This is MY fantasy – of COURSE she knows and understands!] We chat as the elevator slowly ascends. We exit at the same floor, and go into the same office. There is no “door” per se – just a doorway opening. I don’t have to struggle with anything. My husband arrives about 5 minutes later. I’ve signed in, and am chatting some more with my elevator “pal.”

I can tell my husband is worried – about me. I take his hand and squeeze it gently. Finally, they call my name, and we both wheel in on our scooters. The cardiologist (also my husband’s cardiologist) reviews my records from the rheumatologist, then carefully listens to my chest and orders an EKG, a chest X-ray, and an echocardiogram. If these are normal, I may not need additional tests. If not, I may need a cardiac CT and a cardiac MRI. They talk a few minutes, then the physician leaves and I go to the room for the EKG. Next will be the chest X-ray and the echocardiogram, but they must be done over at the hospital tomorrow, so we leave.

The next day I am so tired, stiff and sore, but I must go get the chest X-ray and echocardiogram. Another 30 miles each way – a 60 mile trip. They get me in and out in a record 2 1/2 hours! I wish I could say we stopped for lunch at Ted’s Montana Grill, but that is ‘WAY too rich for our pocketbook! Instead, we lunch at a nice little restaurant in Peachtree Battle Shopping Center. Tomorrow probably won’t be so great, especially after these two days of overdoing. I think about the day before. It was as if, suddenly, everyone I encountered understood. Hands, feet, heart, incapacity, yet they did not look at me: confused, disbelieving, irritated, pretending I was not there, or clueless. What a difference from years gone by!

I check with my doctor’s office by phone about the RPF clinical trial they applied for me to be on. I’ve been accepted! I start in 2 weeks! I’ll have to write a thank-you note to RPF! What a difference Rheumatoid Awareness makes!

I’m feeling happier than I ever believed I could!

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Unfortunately, however, at this point I woke up! Let’s make the world I described above happen! Please visit the RPF website and learn about Rheumatoid Disease. Then become a member. The Rheumatoid Patient Foundation is a 501( c)3 organization; it deserves your support.

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Remember …  February 2 is Rheumatoid Awareness Day

for more information …
Rheumatoid Patient Foundation. … Rheumatoid Awareness Day.

Rheumatoid Awareness Day February 2, 2014

Rheumatoid Patient Foundation Badge

 

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I support RPF {Rheumatoid Patient Foundation} because:

1) There is no other charity just for Rheumatoid Disease {formerly known as Rheumatoid Arthritis}.

2) On a personal basis, as I have RD, and follow rawarrior.com, I am very much aware of the gaps in the support available for PRD. My husband, who has cardiac and lung disease, works hard to help me with my activities of daily living (ADLs). We cannot afford homemaking or personal services and don’t qualify for govt-supplied services. Only through increased public awareness will these kinds of services ever become more available. We don’t qualify for drug assistance, so I cannot get on any of the biologicals. So far, I haven’t qualified for any clinical trials, so I am “stuck” with “older” medications which are inadequate to my disease state.

3) Although we are personally blessed that nearly all of our family members and many of our friends who are both understanding and supportive, there are many people who do not have these blessings. Only through public awareness will these gaps begin to be closed.

4) Many rheumatologists, especially in the USA, don’t seem to have a clue (!) as to the pain and disability we PRD experience. Only through professional education will we bring them to the level of understanding found in Europe and other areas of the globe.

5) Drug companies don’t seem to realize the suffering experienced by over 2/3 of PRD. Helping them see the need for additional patient support and reduced cost of drugs for RD is absolutely necessary!

6) The RPF addresses these needs and more through public awareness, professional awareness and education, and PRD support.

7) The RPF can ONLY address these needs if we provide the money to support RPF!

So, my husband and I support the RPF!

RPF is a 501(c)3 non-profit that can receive tax-deductible end-of-year donations. Often, people have been conditioned to only think of the Arthritis Foundation in this light, even if they are members or supporters of RPF!

Points to Ponder:

RPF is the only charity just for RA
RPF is a non-profit [501(c)3] organization by patients, for patients – Our vision is a world where no one suffers from rheumatoid disease: help our vision become a reality
RPF works with patients, doctors and industry to address patients’ needs and create pathways to better care
RPF is volunteer-run, and we rely on support from donors and members to help us achieve our goals
– Please help support patient-driven research – DONATE HERE
BECOME AN INDIVIDUAL MEMBER HERE ~~ OR A CORPORATE MEMBER HERE ~~ add your voice ~~ together, we can do more!

PS – you don’t have to be a person with rheumatoid disease (PWD) either to support or become a member of RPF!!

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Arthrite rhumatoide

Arthrite rhumatoide (Photo credit: Wikipedia)

I visited this site today, because there are some new hand pictures on it. Just thought I’d share it here:

Show Us Your Hands

This is a collage of the hands of real people who have inflammatory arthritis. This is what we are trying to find a cure for. We start with Rheumatoid Awareness Day! [NOTE: the illustration is NOT from Show Us Your Hands]

Please contribute generously to the Rheumatoid Patient Foundation. It is tax-deductible, and goes toward finding a cure for rheumatoid arthritis – also known as rheumatoid disease.

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Check out this press release!

The Rheumatoid Patient Foundation (RPF) is announcing the establishment of Rheumatoid Awareness Day to be held annually on February 2nd – a day of Astronomical Significance! We, in the Rheumatoid Patient Foundation (RPF) want – and NEED – to help bring education and awareness of this often misunderstood disease to the public. One of the worst complications of Rheumatoid Disease is the effects it has on the cardiovascular system. February is Cardiovascular Disease Month!

February 2nd is the day the Groundhog comes out of its hole to see if it can see it’s shadow. If so, it goes back in its hole and we expect 6 more weeks of winter. That six weeks is the same length of time a patient with Rheumatoid Disease has to get early diagnosis and treatment. We have a sense that be setting THIS day aside, we are “bringing the disease out of the hole” – or the shadows – so the public can “see” it!

In the movie, “Groundhog Day,” the main character keeps waking up and living the same day – over and over and over. So, too, do Rheumatoid Disease patients. We wake up each day to the same chronic symptoms. Daily, we are concerned with the disability, the pain, the stiffness, the joint deformities, and the serious complications (lung disease, heart disease, lowered immune response to infections due to the medications we must take).

As the above mentioned page says, this day has even more astronomical significance:

“Quite literally.  February 2nd is what is known in astronomy as a cross quarter day – meaning that it is midway between a solstice and an equinox – in this case, midway between winter and spring.  Winter may still be here, but the hope of spring is approaching.  We are not out of the cold yet, but the RPF seeks to bring awareness to rheumatoid disease, to bring us into sunnier days, blossoming through education and understanding.”

Please share this information with your friends and relatives.

You can help us by:

  1. Contributing to the RPF HERE. The Rheumatoid Patient Foundation (RPF) is a United States federally recognized 501(c)3 organization. Your contributions are tax-deductible!
  2. Making yourself knowledgeable about Rheumatoid Disease.
  3. Join RPF.
  4. Place a Rheumatoid Awareness Image on your blog, FaceBook page, MySpace page with a link back to the RPF
  5. Place a Twibbon on your cover and profile photos on any social networking sites you belong to
  6. Send the Press Release to your local newspapers and radio/TV stations
  7. Share the link to the Rheumatoid Patient Foundation (RPF) with your friends and relatives, and ask them, in turn, to share the information with theirs. Ask them to join the RPF, to publicize our new annual day, and to educate themselves about Rheumatoid Disease.

I thank any of you who are willing and able to do these things!

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