Feeds:
Posts
Comments

Rheumatoid Disease Fatigue

Wonderful blogpost by Ashley Boynes-Shuck. I recommend it highly!

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.

Ponderisms

via Ponderisms.

A World Aware of RD!

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…?”

========

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!

=====================

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.

=====================
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

 

Are You Man Enough?

This is a “ramble” by Himself, not by me – but I love it. It SO expresses his unconditional love for me, and his desire and hope that other men will unconditionally love their wives/mistresses/girlfriends/shackmates/fiancées, also. He’s not known for beating around the bush or being particularly “politically correct!” But, you may have noticed that…

* * * * * * * * * *

I’m gonna’ ramble a little here about being a guy whose wife/mistress/girlfriend/shackmate/fiancée has RA (RD). I can’t say what does or does not obtain in the case of being a gal with an RA guy.

Tombstones of women before 1900 in this country – particularly rural areas – would frequently have something in the nature of: “She was a good worker” amongst the other yada yada. Sometimes you could see where two or three women had been used up by some farmer, either though childbirth or from constant overwork. Hooraw – these days are over. Or are they? Some men seem to think their mate is just being lazy or some such and expect her to clean the house, cook the meals, do the yard work, and so on. Why – she just needs to get busy while I’m earning a living. If you are just going to abuse her to death, why not just retire her to a back room and get a concubine as they used to? Are you so desperate that you have to marry a maid or a yard man? There are plenty of people out there who will work cheap today. If you are too sorry, too busy, or too worn out to do all these things yourself, then hire them done or let them slide. Reasonably decent meals can be done in a microzap nowadays. If your taste buds are a bit more demanding (mine are) then cook stuff yourself.

Rheumatoid Disease is one of a sheaf of horrible, vile, debilitating autoimmune baddies that I think are all related. (lupus, fibromyalgia, etc.) I’m no doc, but several I’ve talked to are of a similar opinion. One of the things that you can pretty much bet on is that this nasty thing will take whatever is dearest away. Dancing – the feet get hit early. Just about any hand activity – crafts or such. If your girl likes singing, then it will probably hit the voicebox eventually. Bet you didn’t know it could do that. It can. It can hit every joint in the body. It can hit soft tissues. It can hit heart and lungs, liver and kidneys. There is nothing in the body that cannot be attacked by this horror. One of the other cute tricks that most of the autoimmunes like is chronic fatigue. Hard to do anything when you are worn out. All. The. time. Totally. Exhausted.

This little gem causes more pain than you can possibly imagine. These women live with pain that would have you whimpering in the corner. It takes more courage than you have just to get out of bed when your feet feel like they have knives in them.

Most people are married with the standard vows. So you got the drill about honor and love in sickness and health. If you are just shacking there are no vows, but there is a certain moral commitment implied. Are you going to man up and honor your commitments?

There are some women who complain all the time and drive people off. Mostly, though, when guys run out, it is because there is no commitment there. But – there is also another reason: Caring for someone that you love and watching them deteriorate and not being able to help them can crush you. Sometimes guys run because they cannot stand that frustration any longer. How about this for a novel idea: Why not TALK to each other? Sit down with a good cup of coffee or glass of wine or whatever and talk honestly to each other. If you are a decent human you will at least be honest. If there must be a split why not provide as much financial support as possible? You know that you are breaking your commitment, but don’t be a total louse. She will have a really hard time make ends meet when she has such a hard time working. She will have an almost impossible time paying for doctors and medication. If you think that the government will pay for chronic disease care, think again. Keep her on your insurance.

Even better – why not be enough man to honor the commitment and stay with her – as she would stay with you.

Oh yeah, sex. Well, if you are a good enough lover, considerate, gentle, and so forth – you will find that she is pretty receptive when she is not knotted up with pain or nausea. You will also find that slow and gentle love-making is about the best pain medication she could have. Before long you will find that you both can benefit tremendously. Bring her to five or six orgasms and it will be better than the best sleeping pill. Communicate and your whole life will be better.

* * * * * * * * * *

You may have a clue, now, why I love Himself so much!

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!!

Two New Articles

Two new articles I found related to RA and cardiovascular disease:

http://www.nhlbi.nih.gov/health/health-topics/topics/ms/

http://www.sciencedaily.com/releases/2011/08/110814223811.htm

Really good and understandable.

Follow

Get every new post delivered to your Inbox.

Join 348 other followers

%d bloggers like this: