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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  

coping-with-disability-ruth

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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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.

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{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!

the-real-rheumatoid-disease-fact3-1024x768

“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!}

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These items are not all necessary. Only you know your needs, so I have provided as inclusive a list as I can think of. More items may be added in the future, and I am open to suggestions from you, my dear handicapped, differently abled, or disabled brothers and sisters (pick your preferred appellation).

Most products link to an Amazon location. I do have an Amazon Affiliate account. A few cents from each purchase come to me, but do not add to your price. If you object to that, then go to Amazon and search using the search term listed here.

Multi Purpose Soft Grip Heavy Duty Kitchen Shears

Non-Adhesive Non-Slip Shelf and Drawer Liner, use to hold cutting board in place as well as opening jars and bottles by hand (NB: available in most grocery stores in the shelf liner shelves – usually less expensive than Amazon, but always check it out.)

Stand Mixer:
If you anticipate using a stand mixer a LOT for heavy stuff (I can make bread dough myself!) then I recommend the
Kitchen Aid – always look for a sale!
IF you only use a stand mixer occasionally, I’d go with a cheaper model, like the
Hamilton Beach 63325 6-Speed Stand Mixer

Emulsion hand mixer

Electric jar/Electric can opener

Books to rest your elbow for stability while cutting

All Star Bamboo Cutting Board – Thick Sturdy Medium Sized – A larger, heavier board doesn’t move around as you cut on it, but if it is too heavy, and you don’t have much counter space, you may not be able to move it from here to there. If you prefer, a light-weight plastic cutting board can be used for most light and medium cutting. This set of 3 will fill most needs. The set description says it is non-slip. If you are using a plastic cutting board that does slip, this is where the non-adhesive, non-slip shelf liner cut to just about 1/2″ smaller on each side, will really help!

Long Micro plane , for zesting with stability

Electric vegetable peeler or an OXO Good Grips Swivel Peeler

Egg Slicer

Kitchen timer with large display and buttons, making it easier to read and set

Mini Food Processor or coffee grinder for chopping small amounts

Food processor

Electric Knife

Rocker knife

Plastic measuring cups – I recommend you get these at your local “large” grocery store. They are cheaper and more easily replaced. The ones with soft handle coverings I can use even on “hurting hands” days.

Plastic colander I do encourage people to investigate the OXO Good Grips products. While they are a bit more expensive than other brands, they were originally developed (if I recall correctly) by a man whose wife had RA. They certainly are easier to use than most other products.

Slow cooker – The Rival slow cookers have done best for us. Currently we have and use 3 different sizes: 2 cup; 2 quart; and 5 quart. It is so easy to just dump stuff in them in the morning and supper is ready when we are! “Zillions” of slow cooker (crock pot) recipes are available on the web for free, so I wouldn’t bother getting a slow cooker recipe book unless you are a cookbook collector.

Counter top fryer – now this is a NECESSITY! This is the one we have, and we use it all.the.time!

Barbeque fork , use this when hands are painful; hold in the bend of your arm, use chin for stability.

Large handled ladles and serving utensils with thick handles for easy gripping

Portable Rolling Wire Shelf Wood Top Kitchen Storage Trolley for moving heavy items, for example, pots of water from sink to stove, serving bowls and platters from kitchen to dining area. This one is a steal! If Himself had not been such a great woodworker when we were redoing the kitchen, I’d have gotten this for us. But Himself built a lovely Birch counter-top table that is perfect for sitting together in the kitchen and having Fondue, or waffles, or Bagna Cauda, or other things that require eating in the kitchen!

Lightweight bamboo steamer for steaming vegetables or fish. When you steam items, you should use parchment paper as a liner. This will make cleanup easy–just rinse the steamer with hot water, and air dry (don’t soak in water for an extended period).

A long pretty piece of material to hook through refrigerator and cabinet doors for easy opening. You can also use a kitchen towel. If cabinets have knobs, wind a slender rope around the base, once or twice, then knot  

Two step Step stool with rubber treads and a back bar to grasp when climbing

Thick handle pizza cutter or pastry wheel for cutting dough

Marble cheese cutter with a wire handle for cutting cheese , found in most kitchen stores

Chair for resting when you need that must needed break .

Hands free telephone, like a Bluetooth for your cell; you know it will ring when your hands are a mess.

Apple corer / slicer for cutting and coring of apples , potatoes, and other vegetables

Mango corer

Pineapple corer – unnecessary; you can get your fresh pineapple cored and skinned at the grocery store. They will also slice it the thickness you prefer if you ask!

Electric juicer

Hanging pot rack or wall hooks to hang the things used most and of course pots – IF you have sufficient wall space, that is. If not, try to store pots, pans and skillets on shelves the right height that you do NOT have to bend over.

Hooks to hang pot holders and dish towels upon

Counter top Spice rack 

Lazy Susans for the inside of cupboards for everything from canned goods to dishes

Whenever possible use Ergonomic, lightweight cooking tools that have thick grips and non-slip handles.

Remember – if you have a suggestion, tip or an assistance hack or device, please let me know in the comments section!

Cheerio, y’all!

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Ponderisms

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via Ponderisms.

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Himself, bless his heart, is accompanying me to San Diego so I can speak at a small educational section at the annual American College of Rheumatology (ACR) meeting and educational sessions. Himself will be taking care of me – and I will be taking care of him. Most of our disabilities seem to “complement” each other, so I can help him and he can help me.

We will both be volunteering at the RPF, the Rheumatoid Patient Foundation, exhibit. We’ll answer questions about the organization and encourage people to join and become involved in our fight against Rheumatoid Disease (formerly Rheumatoid Arthritis). If YOU haven’t visited the website, please do. And join!

{More information about past meetings of ACR may be found on several posts at RA Warrior: HERE and HERE-2012A and HERE-2012B and HERE-2011A and HERE-2011B and HERE-2011C and HERE-2011D and HERE-2010A and HERE-2010B and HERE-2010C.}

A person with Rheumatoid Disease (PRD) has special things to consider when packing up and going anywhere. Today I started packing – that means I had to separate out the dirty clothes I need to take and to separate out the new clothes that I need to be rinsed out before being worn (or even packed!). Jewelry for each outfit. Shoes – clean? need to visit the shoe guy on Monday? Medications – a dosepak of Medrol is a necessity. I need to see about extra Medrol, and be sure I have enough of my other meds to get me through the trip. All this will take me 3-4 days!

Asking one of the kiddos to pick us up and drive us to the airport at that ungodly hour of 5AM!!

Saturday – take the cat to the Vet for boarding. Call TSA at Airport to give up assistance boarding (we’ll both need wheelchairs to the gate, and wheelchairs to meet us at plane in San Diego. Get to bed VERY EARLY on Saturday – have to be UP by 4AM on Sunday and leave at 5AM to be at airport by 6AM. Plane leaves at 8AM.

Crossing 3 time zones will be difficult east to west, but when we return on Thursday, it will be horrible going from west to east.

All this will leave us totally FLATTENED and we will need a minimum of 3-5 days to recover and recoup.

WHEW!

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This blog [I am My Mother’s Keeper – A Job I Cherish!] reminds me, somewhat, of my mother’s last few years.

Momma about 1940

Momma about 1940

Momma about 1955

Momma about 1955

Momma (left) in Nursing Home about 1977

Momma (left) in Nursing Home about 1977


It certainly is a cautionary tale for all relatives, friends and caregivers. It can help prepare for what is, all to frequently, the future of their lives. No matter how many siblings or children there are, or how deeply they are (or are not) involved, care-giving usually devolves down to one person or one family group.

With the recent admissions that there really are to be “Death Panels” related to Obamacare, relatives and friends more and more will have to be assuming care-giving to the elderly and chronically ill. This is a step backward from our current system, but actually could be a step forward from the impersonal care currently given. It retreats to the days in which family and friends were closer and more involved with the elderly and chronically ill, but could be a step forward to more hands-and-hearts-on care. Instead of living one’s last days among a group of strangers, one can live at home with loved ones close by. There would seem to be more opportunity for saying all the things that need saying before someone dies.

Yes, there is the problem of “too much burden” on the home care-givers. Smaller families and individuals will be forced to rely on friends, acquaintances, Churches and volunteer groups. Is this bad? The transition to more family care-giving will be UGLY! But the final “product” has the potential to be very good.

“Author and organizational consultant William Bridges developed a model that explains the process of transition. This three stage model focuses on the adjustment that people make when they are going through a transition. Bridges states that “transition starts with an ending and ends with a beginning.” [Bridges’ Transition Theory in imjoeboe blog].

Bridges' Transition Theory

Bridges’ Transition Theory

It’s that “neutral zone” that can be UGLY! Change is always difficult. Aging and chronic illness are difficult – and can be UGLY! Surmounting those difficulties and the ugliness can become something to look back on with pride – after the grief! Grief is something I will deal with in another post.

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