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Archive for the ‘Research’ 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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It seems that every article I read that discusses our lack of activity only points out that the public at large and the medical community in particular not only do NOT understand what living with Rheumatoid Autoimmune Disease (RAD – formerly Rheumatoid Arthritis) means, but also do NOT understand the actual amount of pain we experience. A very few examples:

Rheumatoid Arthritis and Exercise

Exercising with Rheumatoid Arthritis

Rheumatoid Arthritis Exercise Helps Your Pain

Tell me, just HOW can we exercise if our feet become involved to THIS extent?

Post RA abnormal fusing of bones of feet (ankylosis) By Hellerhoff (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons

I’ve noticed that, although there may be no difference in my disability, my pain perception has become changed. What I once would have classed as an 8, I now class as a 5 on the typical “0-10” pain scale (which is totally inadequate for those with chronic pain, by the way). It doesn’t mean I function 3-points better, but just that part of chronic pain becomes background pain. It never changes.

Those with chronic pain may begin to only rate the “changeable” pain. At least that’s what I have discovered that I do. Acute pain is studied all the time. But what about chronic pain? And the kind of chronic pain (location in the body makes a difference). When I’m hurting, nothing, and I do mean nothing, will extract me from my recliner except the need to go to the bathroom. And then, I may need help just to walk to the bathroom. I’m not the only one. There are 1.5 million of us with varying degrees of chronic pain due to Rheumatoid Autoimmune Disease. Of us, only 20% are getting adequate relief from the various treatments being used. Only 20%. Another 30% are getting almost no relief. This leaves 50% getting anywhere from almost no relief to some relief to almost adequate relief.

So tell me, how are we supposed to walk briskly? Much less for 10 minutes? My best days I manage to go to the grocery store OR get my hair done OR visit one of my kids OR go out to dinner with my beloved and most patient husband. Not two much less three of these – only one – on a good day. I have to plan my week so that I do one activity per day – if it’s a good day. The days that I’ve had to cancel visiting with my kids and grandkids are too numerous to even think about. I’m the unreliable one in the family. I’m the unreliable member of my Red Hats group. I haven’t been to Church in 5 years.

If forcing myself to exercise would cure me, I’d do it. But from experience I know that it only makes me worse – it makes me go into flares, joints swell and hurt, and even more damage begins to occur.

What are the researchers thinking? What do they really know about rheumatoid autoimmune disease? How about some researchers who actually have RAD? People who are getting less than adequate relief from their third set of treatments are who we need doing the research. Then, perhaps, we would have fewer articles that imply that we who have RAD need to exercise more in order to get better.

We need the medical and surgical treatments that will PERMIT us to exercise more. And we need them right now!

How about all these splintery arthritis research groups getting together and pooling their money in order to conduct more meaningful research to find those treatments? NOW!

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Hand deformity in a patient with Rheumatoid Ar...

Image via Wikipedia

Well, at least a post-a-week or so.

RA is truly the gift that just keeps on giving. Most people know about how the joints of the hands of someone with uncontrolled RA look – distorted, swollen, the fingers deviated toward the outside of the hand (ulnar deviation). Maybe some have seen the swollen knees and wrists. Still fewer know about the rheumatoid nodules that occur on the elbows, outer arm, on the joints of the fingers and sometimes even on the feet and ankles.

But in addition to all those, RA gives us some “gifts” that are not well known outside of the American College of Rheumatology. Here are just a few of them.

Anemia – the body doesn’t make enough red blood cells

Eye problems, including dry eyes [Sjogren’s Disease], scleritis [inflammation of the sclera, or covering, of the eyeball], iritis [inflammation of the iris], and uveitis [inflammation of the tissue layer inside the eye that supplies blood to the retina]. In addition, there is another eye disease, idiopathic orbital inflammatory syndrome (formerly known as orbital pseudotumor) which may be related to the autoimmune arthritis spectrum

Dry mouth

Periodontal disease – the same processes that are central to RA are central to periodontal disease.

Rheumatoid lung disease is a group of lung problems related to rheumatoid arthritis. The condition can include fluid in the chest (pleural effusions), scarring (pulmonary fibrosis), lumps (nodules), and high blood pressure in the lungs (pulmonary hypertension).

Inflammation of the sac of tissue covering the heart [pericardium].

Inflammation of the inner lining of the blood vessels, especially of the legs

Inflammation of the tiny joints in the ears leading to progressive deafness secondary to inflammation of the intraosseous joints in the middle ear or to inflammation of the cells of the cochlea.

Inflammation of the spleen leading to low white blood cell counts [Felty’s Syndrome]

Cricoarytenoid Arthritis – leading to hoarseness and restriction of vocal range

Peripheral neuropathy – numbness and tingling in the hands, arms, feet and legs. Peripheral neuropathy is a neurological condition in which the nerve pathways are interfered with in some way.

Stomach and intestinal distress may be associated with rheumatoid arthritis as opposed to association with drugs used to treat rheumatoid arthritis.

Skin problems are common in RA. Generally, the more serious the skin problems, the more serious the RA.

According to an article on Health-Central.com, “mounting evidence suggests that RA can increase the risk for heart disease, possibly because of the inflammatory response in RA, which may also injure arteries and heart muscle tissue. Some studies have reported that people with RA are 30 – 50% more likely to suffer heart vessel blockages and 60 – 70% more likely to die as result than people without RA. A smaller British study indicated that about half of RA patients are likely to have silent symptoms of heart disease, and that it tends to develop about 10 years earlier than in people without RA.”

All this is frightening enough without the fact that rheumatoid arthritis is one of the most painful and disabling chronic diseases around. According to the American College of Rheumatology, it affects over 2.1 million people in the USA alone. Despite the large number of patients, “research funding for RA averages as little as $25.90 per patient and remains significantly low compared to other chronic diseases that affect far fewer people like lupus, diabetes and multiple sclerosis, which average $330.00 per patient.” [ACR Press Release]

Why, then, do so many popular websites and publications insist on putting a “happy spin” on this disease? If we RAers would just diet right, exercise right, improve our interpersonal relationships, we’d get better! Try this new drug and you will get your life back! Try these herbs and natural medicines and you won’t need the dangerous drugs used by allopathic medicine! Eat these berries! Drink this juice! Low carb diet! High carb diet! Low fat diet! Low tomato diet! So much bosh!

I think it’s because we are used to the “Mickey-D” approach to life in this country. Everything has to be fast. Everything has to be effective. Everything has to have a cure, or at least a treatment that is highly effective. Well, some things just don’t. Some things, some diseases, are very hard to treat effectively. RA is one of those.

Those of us who have it need all the help we can get.

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