Why is it that I continually find assists for the kitchen and seldom find any for the rest of the house? Today I’m considering what I do in the bedroom in terms of assisting my disabilities.

  1. Shoes, not slippers by the bed. I seldom wear what others would consider slippers. I wear Crocs. They are the only shoes that are easy to get into and cushion my feet. Frequently I wear them around the house all day. It isn’t until I go out that I put on my “aerobic shoes.”
  2. Keep as much by the bed as you can. Keep any of the small things you use frequently [nasal spray, dry-eye drops, emery board, book(s), tissues, night-time meds, etc] by your bed. This will reduce the number of times you have to get out of bed overnight.
  3. If you wear splints or compression gloves – set them out before you go to bed so you won’t forget them. (Yes, I have gleefully forgotten my compression gloves and not worn them, only to wake up needing them and having to seek them out.)
  4. Heat and Cold. I don’t respond well to cold packs when I’m in pain at night. My joints have never, ever, responded to cold packs. The only thing that responds to cold on my body is my eyes after an injection for my macular degeneration. [They need to make pills for that!] There are heat and cold packs available at your local pharmacy that can be activated by peeling off a backing or by pressing on a valve. I find it helpful to have one of the heat packs stashed near my bed.
  5.  Pillows and More Pillows! I find I need various differently sized and shaped pillows in bed with me or near enough I can reach it during the night. I find medium and large sized Plush toys are of great help (thank you, RA Warrior!). I also use different sized and different softness “dog-bone” pillows. I must have 20 of them around the house, but I do have 6 of them in or near my side of the bed. Thank goodness we have a King-sized bed!

I hope you get some ideas of your own from these suggestions. Please share in the comments!


She had been dealing with Rheumatoid Arthritis for over 15 years. She had many of the complications known to affect RA patients. There are so many of them that most people don’t know or realize!

In addition to the joint degeneration, pain and swelling, there is cardiac involvement (pericarditis, congestive heart failure), lung involvement (interstitial lung disease, which leads to pulmonary fibrosis), higher prevalence of Chronic Obstructive Pulmonary Disease, and cardiovascular disease which involves a large spectrum of lesions, from rheumatoid vasculitis to atherosclerotic lesions.

My sister-in-law had developed many of the extra articular complications. Her heart, lungs and veins were involved. She was very brave. She went to the hospital for vascular surgery, and did not survive. No fault of the doctors. No fault to anyone. Her body was eaten up by this VILE disease, and Heaven was the only place she could find healing.

Lord have Mercy! Memory Eternal!

Coping with Disability

Words from another person who is energy deprived! Wonderful post. Posted in a blog I follow. Thank you, Rugh, and thank you hearingelmo!

Hearing Elmo

Always such a privilege and joy to welcome guest writers to “Hearing Elmo”… especially those who have made an impact on my own life! Ruth’s blog can be found at: http://foxbuds.com/default.html  


Succeeding at being functional, in spite of major disability, requires acceptance, attitude control, and accommodation. For approximately a half year, the extreme energy challenges that defines my disability took a vacation. I went from using a wheelchair to walking a mile independently. My wheelchair was actually forgotten, and it sat unused for several weeks. Feeling so energized, I worked to increase independence and exercise. Walking in a nature park; to and from the mailbox (long city block of considerable elevation grade); to and from study groups and services at church; and during shopping became frequent occurrences. Even bi-weekly lap swimming was added to the exercise mix. Restricted time limits on activity seemed to have dissolved. I came to…

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A member of our local RA Support Group, and friend to all of us in the group, died last week – of complications of Rheumatoid Disease. Just like Glenn Frey did a few months ago.

She repeatedly had bronchitis through the winter, then, just as spring was in full bloom, she developed bronchitis again, but this time antibiotics didn’t help. She was hospitalized, then developed pneumonia. Two weeks later, she died.

Some would say it was complications of her medications – all those immune suppressants she was on – that were the cause of her death. But those of us who fight the same fight know: it was Rheumatoid Disease that was the cause.

Our immune systems are broken. Our immune systems have gone bezerk and are attacking our own tissues. Although the joint tissues are the most noticeable, Rheumatoid Disease affects the heart, lungs, eyes, ears, and kidneys, not to mention arteries and veins. It gives the patient overwhelming fatigue and brain fog. In fact, Airways Abnormalities May Represent Preclinical Rheumatoid Arthritis! This was an astounding piece of information to me when I first read it. Rheumatoid Disease may very well start in the lungs! [RAWarrior.com: Preclinical Rheumatoid Disease – There Are No Joints In The Lungs]

According to a recent study at Harvard’s Brigham and Women’s Hospital, “RA is associated with a 40 percent increased risk of death.” [RAWarrior.com: Rheumatoid Arthritis Mortality] My own mother died of complications of Rheumatoid Disease (Arthritis) after fighting the illness for 15 years. She was only 59 when she died. Her grandchildren hardly got to know her at all. She was 15 years post diagnosis.

My friend had had RD for many years, and had the deep love of her only child – a daughter, who is totally devastated. I, too, was my mother’s only child, and was devastated by her death. Due to modern treatments, I have lived longer than I expected to. But the complications of the medications and treatments are taking a serious toll. Even though they are slowing the course of the disease, they are quite capable of killing me. So I see my Rheumatologist regularly, and inbetween times I see my Primary Care doctor. Then as joints give out, I have orthopedic surgeries – two so far and a third looms on the horizon.

We MUST find a cure for this disease! It robs us of function, family, friends. It ravages children, adolescents, mothers and fathers and grandparents. It is a leading cause of disability and loss of employment – not just in the USA, but across the world.

Rest in peace, my friend. You are no longer in pain. You are no longer crippled. You are free of this VILE disease that robbed us of you. God bless you and make your Memory Eternal.

The thing most people do not understand is all the OTHER body parts affected by Rheumatoid Disease. [Arthritis is only one symptom of this condition, hence the gradual shift to calling it “Rheumatoid Disease.” Here is a non-inclusive list:

Lungs – affect the membrane lining the lungs, leading to pleuritis and fluid collection; rheumatoid nodules can form in the lungs, also.

Reduction in red blood cells = anemia.

Treatment to suppress the immune system may lead to low levels of blood platelets, a condition called thrombocytopenia.

Felty’s syndrome, a condition in which the spleen is enlarged and the white blood cell count is low in people with rheumatoid arthritis. Having Felty’s syndrome may increase the risk of lymphoma, a cancer of the lymph glands.

Rheumatoid nodules under the skin occur in 20% of patients with Rheumatoid Disease. These can occur on elbows, forearms, fingers or heels.

These nodules can occur in the heart and lungs, also. In the lungs this can lead to hemorrhage.

Rashes of the skin

In the eyes, uveitis, iritis, scleritis and episcleritis can affect vision and eye comfort.

People with Rheumatoid Disease are also susceptible to developing Sjogren’s Syndrome which leads to extreme dry eye and dry mouth.

A collection of fluid between the outer membranes of the heart and the heart muscle itself – pericardial effusion. This is life-threatening!

Pericarditis – inflammation of the membranes around the heart – is life-threatening!

We who have Rheumatoid Disease are at increased risk of heart attacks just as people with type-2 diabetes are. We are also at increased risk of stroke. This is because inflammation of the blood vessels – both veins and arteries – can occur in about 15% of patients with Rheumatoid Disease.

WebMD has lots more information and much more detail than I included here. The thing to remember is, nearly any part of your body can be affected by Rheumatoid Disease with resultant symptoms which depend upon the part of the body affected.

{RA Warrior is having a Blog Carnival to promote awareness of Rheumatoid Disease – and Rheumatoid Awareness Day [February 2 each year]! This is my entry.}

I think one of the things I was unprepared for when I developed Rheumatoid Disease (Rheumatoid Arthritis) was the fact that so many of the people I encountered in life and online had totally different experiences with the disease. It took me a long time to learn and even longer to internalize and REALIZE – Rheumatoid Disease manifests itself differently in each person!


“Some people experience constant pain; some have a series of “flares” and periods of lower disease activity. Symptoms can vary greatly from day-to-day.

“Rheumatoid Disease is different in each person — and even in the same person over time.” [Kelly Young, http://rawarrior.com/ ]

A “mild” case of rheumatoid disease is just as valid as a “moderate” or “severe” case. It was interesting to me to look at ads and see people with related autoimmune conditions who were on Biologic “X” or Biologic “G” and were doing well. I thought I was being held back because we couldn’t afford the co-pays. But there was another factor I learned about: RD-FACTS-2-300x223

Even if we could have afforded for me to be on one of the then-available Biologics, there was LESS than a 35% chance that it would have worked!

My RD is different. I am seronegative and do not have a lot of the so-called “typical” manifestations (gnarly hands) of RD. Because I am seronegative, I don’t qualify for Clinical Studies.

My over-riding symptom is massive fatigue and lack of “spoons.” I have a good bit of pain, but my pain doesn’t “stay” in place – it moves about. There are things I can no longer do because of “pain,” but I try to ignore the pain. It does work part of the time. The pain differs daily – even hourly – as do my disabilities. I see people who are totally worn down and not able to do so many things that I can do. I try to remain thankful and to pray for them.

“My” Rheumatoid Disease frequently looks like this:

I am Tired

This is my life – but with pain superimposed. Hands, wrists, feet, ankles, knees, hips, elbows, shoulders. neck, back. But many people have more pain than I; and many have more fatigue than I.

We are all different. We each experience Rheumatoid Disease in different ways. I can no longer cut my meat; at times (like today) I can’t even cut my fried eggs into bite-sized pieces! I had to ask Himself to do that for me. He said, “Certainly!” After 38 years of marriage, 37 of them with my gradually declining abilities, he still is cheerful about helping me – dress, undress (he likes that part! 🙂 ), brush my hair (now nearly waist length), cut my steak, and so on. He still says, “Certainly!” And I get to bask in the fact of his devotion and love!

I do at least try to cut my steak (and fried eggs), I do try to get dressed and undressed by myself, and I do try to take Warrior (great name! Appropriate!) out for his “constitutionals” 2 or 3 times a day. If I cannot, Himself does it for me.

My RD may be different from others, and it may change from day-to-day or hour to hour, but it’s still RD. Yes, like the rest of those of us with Rheumatoid Disease, I AM a Warrior!

{Dear Readers – please remember to Help Kelly and Roo!}

Aid for Kelly and Roo

Many people know of the RAWarrior – Kelly Young. Fewer know that Kelly is in dire straits having had to flee her home with her 10-year-old son in order to protect him from harm. It is now the season of gift-giving, and Kelly’s uncle has set up a GoFundMe page for Kelly and Roo.

A priest of our Church wrote a blog post about gifting back in 2009. In it, he says, in part:

St. Nicholas, Bishop of Myra in Lycia

St. Nicholas, Bishop of Myra in Lycia

He had been extremely wealthy, but something went terribly wrong. By the end, circumstances had become so dire, that not only had his whole business been lost, but there remained not even enough to feed his family of three daughters. In his desperation—who can imagine such desperation?—he figured that his only recourse to feed the girls was to sell them into prostitution for grocery money. No where to turn. Nothing to eat. No option.

“Most of us could hardly imagine selling our children into prostitution or slavery in order to have food to eat. Most of us, indeed, cannot begin to conceive of what it must be like to be that desperate, that in need. Most reading this humble article have never involuntarily gone without a meal, much less a week’s worth. Many of us have never ‘needed’ anything. What would drive someone to such an immoral act?

“It is probable that most of us have never met someone in these circumstances; perhaps it is fair to say that we don’t even know someone who knows someone who was. We tend to go about our business; we tend to keep to ourselves. We know what we know, we know whom we know, and that is our life.

“But Nicholas knew of them. He knew that it was immoral for him to allow such a thing to happen. He had the means to help, and did. Under the cover of darkness, having assembled small bags of money (in large amounts), he made his way into their neighborhood, and seeing a window of their house opened, he tossed the bags in, praying that it would be sufficient to prevent such a sin. Thank God, it was. Overjoyed by such grace, Nicholas repeated his secret efforts twice more for the same family; each time another one of the man’s daughters married.”

He is speaking of St. Nicholas – the ORIGINAL St. Nicholas – who was the Bishop of Myra in Lycia, a province of Cappadocia near Turkey. Fr. John continues with a discussion of the fact that many of us have so much “stuff” that we actually need to rent a storage space to hold the extra! Yet, many families have NO “stuff,” and live hand to mouth in shelters.

We DO know someone in dire circumstances: RA Warrior is living in the sheltering home of friends, but she has great needs. She has Rheumatoid Disease (Rheumatoid Arthritis) and is unable to work. While disability (SSDI) may become a possibility, it takes much time to achieve, and her most pressing need is to pay the attorney who is representing her in her custody suit so she can continue to protect her son.

Fr. John continued:

“Is it not finally the time to ask, ‘What do you need for Christmas?’ Shopping and getting ‘more stuff’ will never satisfy our empty souls.

“Many of us continue to spend a frantic month searching for the ‘perfect gift’ for that ‘special someone’ who ‘has everything’. Why on earth do we need to buy ‘something’ (which usually winds up begin just ‘some’ thing) for someone who has everything? Someone who has NO need?

“It isn’t that we shouldn’t give one another gifts. In fact, this is one way we show love for one another. But couldn’t the gift for that ‘someone who has everything’ be an offering to someone who has nothing? Even in our day of down-sizing and cutting back, we still rent storage units to hold all the stuff we can’t fit in our houses. Some spend up to hundreds of dollars a month for a roof over furniture stacked on top of itself in a metal building (and some climate controlled!). But what about the poor who have no roof and are stacked on top of themselves? Which needs the roof?

“Does little Johnny really need another video game? The latest mp3 player? Does Susie really need an 18th Barbie? Does Grandma really need another collector’s plate from the Franklin Mint? Do I really need another tie?

“For many, charity is the check we write on occasion during the year to assuage the guilt we have for having too much stuff and continuing to buy more anyway. Such charity does help the needy, and thank God for that much. But more so, we are called to change our whole view, our whole mind, our whole existence—to reflect the life of Christ like St. Nicholas did. So many of us have so much to give—which is not ours anyway. It is given to us by God to be used by good stewards who in turn show the love of God to those who truly need it. Citing the King and Judge of all, Jesus said, “Truly, I say to you, as you did it [clothed the naked, fed the hungry, visited the sick and imprisoned, etc.] to one of the least of these my brethren, you did it to me” (Matthew 25:40ff). Jesus didn’t give new chariots to people or even grant them new clothing. Rather, he fed them (actually and spiritually), he gave them health, healing, hope, and salvation—and in the end, he gave his life for them, for us. This is our calling.

“St. Nicholas was an ardent follower of Jesus Christ. He lived the Gospel, and did so quietly, humbly, and without desire for or requirement of recognition. He didn’t give asking for the new building to be named after him, or to be announced in the news. He gave because God had given to him, and he knew his responsibility as a human being, as a Christian, to help the helpless and to give hope the hopeless. Our call is no different. So, this Christmas, let’s ask a new question. Instead of “what do you want for Christmas?” let’s ask, “Who has needs this Christmas whom we can help?” And having asked the question, let our giving be, like St. Nicholas’, quiet, anonymous, given to the glory of God, that all may see these good works, and give glory to God in heaven.”

We have an opportunity before us. Let us do what we can, what we should, what we must do to help one of God’s children who needs that help! As Kelly’s uncle said, “this is what ‘family’ has always done for one another.”

And have a blessed Nativity, a very Merry Christmas, a Happy Hanukkah, or a great Kwanzaa!

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