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Archive for the ‘Awareness’ Category

Today wasn’t a very good day. Just turning over in bed was difficult and painful. Wrap your hands in about 6 layers of gloves, and put splints on your wrists and elbows so they don’t bend well – then try to brush your teeth with a Sonicare electric toothbrush. And fix your hair. I should have asked for help – but I couldn’t bring myself to do that. So some of my teeth were ignored and my hair didn’t get brushed. Just “combed” it with my fingers – kind of – and stuck a barrette in it. By that time I was so exhausted, I couldn’t even get dressed – managed to put on a housecoat, and slide into my Crocs.

Pink Cotton Candy

Pink Cotton Candy

Leaning heavily on my cane, I limped into the living room and deposited myself into my recliner. Himself waited on me hand and foot, despite not feeling well himself. He even made some cotton candy for me. [Did I forget to say Himself bought a cotton candy machine so he could make it for me, fresh? Such a loving, thoughtful man!]

He had also made Raspberry Tart cookies for me for Valentine’s Day. But today, just for a change, I put Black Current Preserves in mine. Delicious.

I read texts from Church and prayed a bit. Now, as bedtime approaches, the pain and fatigue weigh me down. Rheumatoid Disease is a vile disease. Although I try to accept my condition, and to trust in God, I really feel like shaking my fists in the air and screaming, “Give me back my life!”

Then I remember:

“Our Saviour and the God-bearing Fathers teach that  our only concern in this life should be the salvation of our souls. Bishop Ignatius says: ‘Earthly life — this brief period — is given to man by the mercy of the Creator in order that man may use it for his salvation, that is, for the restoration of himself from death to life.’ “

And “we should not dread any human ill, save sin alone; neither poverty, nor disease, nor insult, nor malicious treatment, nor humiliation, nor death” (St. John Chrysostom, On the Statues), for these “ills” are only words; they have no reality for those who are living for the Kingdom of Heaven. The only real “calamity” in this life is offending God. If we have this basic understanding of the purpose of life, then the spiritual meaning of bodily infirmity can be opened for us.

Yet, it is difficult to see how sickness can be a sign of God’s care for us — unless, that is, we understand the relationship that exists between body and soul. Elder Ambrose of Optina Monastery spoke of this in a letter to the mother of a very sick child:
“We should not forget that in our age of ‘sophistication’ even little children are spiritually harmed by what they see and hear. As a result, purification is required, and this is only accomplished through bodily suffering….You must understand that Paradisal bliss is granted to no one without suffering.”

So I work on accepting my suffering as a step toward my spiritual purification. And I am grateful to God for this time I am allowed with my husband. Despite pain, despite feeling really ill, I turn again and put my trust in God.

On one occasion a woman was brought to St. Seraphim of Sarov. She was badly crippled and could not walk because her knees were bent up to her chest. “She told the Elder that she had been  born  in  the  Orthodox  Church  but,  after  marrying  a  dissenter,  had  abandoned  Orthodoxy and, for her infidelity, God had suddenly punished  her….She could not move a hand or foot. St. Seraphim asked the sick woman whether she now believed in her Mother, our Holy Orthodox Church. On receiving a reply in the affirmative, he told her to make the sign of the Cross in the proper way. She said that she could not even lift a hand. But when the Saint prayed and anointed her hands and breast with oil from the icon-lamp, her malady left her instantly.” Behold, thou art made whole; sin no more, lest a worse thing come unto thee!

This connection between body and soul, sin and sickness, is clear: pain tells us that something has gone wrong with the soul, that not only is the body diseased, but the  soul as well. And this  is  precisely  how  the  soul  communicates  its  ills  to  the  body,  awakening  a  man  to  self knowledge and a wish to turn to God. We see this over and over in the lives of the saints, for illness also teaches that our “true self, that which is principally man, is not the visible body but the invisible soul, the ‘inner man’“ (St. Nicodemos of the Holy Mountain, Christian Morality).

Although I did not marry a dissenter, I am aware of many of the reasons I need to repent. Great Lent is near, and the Glorious, Bright, Holy Pascha at the end. Healed or not, this is what I dream of and hope for. The Pascha of our Lord. And the eventual time when Himself and I go to meet our Lord – with no more pain, no more fatigue. This is my focus for Great Lent.

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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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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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A hand effected by rheumatoid arthritis.

Image via Wikipedia

YES! A month for us RAer’s! Here’s a great place to learn about RA: RAWarrior!

And another place HERE.

I’ve started a MeetUp Group around RA and other Autoimmune Arthritis conditions such as Psoriatic Arthritis. This is my meagre contribution toward publicizing and awareness.

Now to get that Meetup group off the ground!

RAWarrior has some PSA videos she made on her YouTube channel.

So check out all these links! They are great reading, good solid info

If you want to share this post with others (recommended!), use the following link:

http://wp.me/p5MqZ-4B

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Image taken from http://www.niams.nih.gov/hi/t...

Image via Wikipedia

I was reading somethings on RAWarrior’s blog today. In a reply to a respondent who had experienced a home invasion robbery with violence to her and her children. Their cellphones were stolen. She has RA and was so traumatized she couldn’t drive to the police station to report the robbery for 2 or 3 days. The police were incredulous that she waited so long to report it, and simply did not understand that her RA had flared and kept her from leaving the house.

In response to her reply, I stated, in part, that “I dream of a world in which we don’t have to educate others – in which they know and are able to respond to us appropriately, regardless of circumstances.”

But that throws the issue back in our laps – those of us who have, or whose close relatives have, RA.

RA Warrior has an incredible website full of accurate information. Actually, I think many rheum docs should read her blog. She is providing an important public service, and her blog deserves to be read more widely. She challenges the rest of us to “Do Something” to fight RA – whether it is education to the public, to our docs, raising money through philanthropic activism, or something else.

Me, I’m pushing for RA awareness in every way I can. I talk to people at the grocery store, at Red Hat meetings, on the street, everywhere I go – Emmy is a great icebreaker, and then I can talk about RA to them. It’s slow, but I can go into some details that may not be possible through other venues. I have a trapped audience that is interested. I can judge when their interest starts to wane, and try to get it back.

Rheumatoid Arthritis ain’t fer sissies. The sooner people understand that, the better. We ain’t sissies! The pain is real. The crippling is real, and the disability is real. It’s not in our imagination. It’s a disease we deal with on a daily basis. It affects nearly every system in our bodies – joints, tendons, ligaments, muscles, heart, lungs. We are attacked and laid low by pain, fevers, malaise, stiffness and swelling. We deal with it as best we can – some better than others. We have to take medications that help the disease, but cut down our life expectancy. The trade-off is pretty easy to see – without them life isn’t worth living, and like one of the characters in “Murder She Wrote,” we feel like hanging ourselves.

For me, as an Orthodox Christian, of course, suicide isn’t an option. But when I watched that episode on DVD, recently, I really understood how she could have done it. It made me wonder if the writer had RA or had a relative with it.

THAT is the kind of awareness we need more of – RA is so bad, some people contemplate or even commit suicide.

But even my small contributions toward awareness are better than nothing.

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