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An Apology to Dolly Parton

I’ve been a fan of Dolly’s since she appeared on the Porter Wagoner Show back in the 70’s and 80’s! Yet I was not aware of all her philanthropy. This post from Amy Rawe’s blog “Rawe Struck” is a wonderful piece. Enjoy!

 

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From WarmSocks!

https://turtlemom.wordpress.com/2016/09/15/from-warmsocks/

I’m not a good gardener, but every couple of years I find myself attempting to grow tomatoes, and melons, and cucumbers.

I’m crossing my fingers, and will be planting tomatoes, cucumbers, and watermelons, as well as my usual herbs (Basil, Mint, Oregano, Parsley, etc.). I want a home-grown bacon, lettuce, and tomato sandwich next summer! (The bacon will come from Pattons Meat Market – naturally grown, quickly killed, and butchered expertly.)

YUM!

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Aid for RA Warrior!!

Please see:

https://handicapaccomodations.wordpress.com/2015/12/01/aid-for-kelly-and-roo/

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Ponderisms

via Ponderisms.

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Check out this press release!

The Rheumatoid Patient Foundation (RPF) is announcing the establishment of Rheumatoid Awareness Day to be held annually on February 2nd – a day of Astronomical Significance! We, in the Rheumatoid Patient Foundation (RPF) want – and NEED – to help bring education and awareness of this often misunderstood disease to the public. One of the worst complications of Rheumatoid Disease is the effects it has on the cardiovascular system. February is Cardiovascular Disease Month!

February 2nd is the day the Groundhog comes out of its hole to see if it can see it’s shadow. If so, it goes back in its hole and we expect 6 more weeks of winter. That six weeks is the same length of time a patient with Rheumatoid Disease has to get early diagnosis and treatment. We have a sense that be setting THIS day aside, we are “bringing the disease out of the hole” – or the shadows – so the public can “see” it!

In the movie, “Groundhog Day,” the main character keeps waking up and living the same day – over and over and over. So, too, do Rheumatoid Disease patients. We wake up each day to the same chronic symptoms. Daily, we are concerned with the disability, the pain, the stiffness, the joint deformities, and the serious complications (lung disease, heart disease, lowered immune response to infections due to the medications we must take).

As the above mentioned page says, this day has even more astronomical significance:

“Quite literally.  February 2nd is what is known in astronomy as a cross quarter day – meaning that it is midway between a solstice and an equinox – in this case, midway between winter and spring.  Winter may still be here, but the hope of spring is approaching.  We are not out of the cold yet, but the RPF seeks to bring awareness to rheumatoid disease, to bring us into sunnier days, blossoming through education and understanding.”

Please share this information with your friends and relatives.

You can help us by:

  1. Contributing to the RPF HERE. The Rheumatoid Patient Foundation (RPF) is a United States federally recognized 501(c)3 organization. Your contributions are tax-deductible!
  2. Making yourself knowledgeable about Rheumatoid Disease.
  3. Join RPF.
  4. Place a Rheumatoid Awareness Image on your blog, FaceBook page, MySpace page with a link back to the RPF
  5. Place a Twibbon on your cover and profile photos on any social networking sites you belong to
  6. Send the Press Release to your local newspapers and radio/TV stations
  7. Share the link to the Rheumatoid Patient Foundation (RPF) with your friends and relatives, and ask them, in turn, to share the information with theirs. Ask them to join the RPF, to publicize our new annual day, and to educate themselves about Rheumatoid Disease.

I thank any of you who are willing and able to do these things!

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My 10 Most Unusual Comfort Items

This is for RA Warrior’s latest “Blog Carnival!” It’s about my favorite non-medicinal / non-medical comfort items for living with rheumatic disease. I have many, many things that help me, but I’ve tried to keep this to My 10 Most Unusual comfort items! Also, I’m a bit remiss on getting the pictures done, so I’ll be adding a few more over the next several days to weeks (let’s be real, here – I get distracted). Subscribe to this post and you’ll get notifications when I update it. 😀

{{By the way, I have worked and worked to get these pictures set in correctly, and nothing is working! I’ll keep trying, but I suspect y’all probably can figure out which pics actually go with a paragraph and which don’t! 😉 }}

Himself in "his" kitchen

Himself in “his” kitchen

First – my husband. Now that may or may not be considered unusual, except my husband is so much more help than many of the spouses my RA-friends describe! He does so many things for me during the day. At night when I wake up crying from pain, he holds me and [if I can stand it] gently rubs whichever joints are OWIE at the moment. He helps me get dressed and undressed as needed. He took over the cooking several years ago when I was unable to prepare anything more complicated than soup! Now he is an excellent international cook. He will also appear under some additional headings. Keep reading! 🙂

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Emmy picks up my pen at the doctor's office

Emmy picks up my pen at the doctor’s office

Second – my mobility service dog, Emmy. She does so many things I have to refer you to some of the short vids I’ve taken of her to see just a FEW of the things she does for me!!

Emmy’s Tasks – Opening Pantry Door

Emmy’s Tasks – Closing Pantry Door

Emmy’s Tasks – Opening Refrigerator Door

Emmy’s Tasks – Closing Refrigerator Door

Emmy’s Tasks – Doing Laundry – Washer 1

Emmy’s Tasks – Doing Laundry – Dryer 1

Emmy’s Tasks – Doing Laundry – Dryer 2 – The Last Sock

Emmy’s Tasks – Taking Off Mom’s Socks

Emmy’s Tasks – Helping Mom Get Dressed

Emmy and me after a practice session - back in 2009

Emmy and me after a practice session – back in 2009

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These represent less than 25% of what she does for me! About having a service dog – she helps me stay flexible and supple because I have to do all her feeding and grooming on a daily basis – no matter how badly I hurt or feel. Himself can’t do it for me, but can help me. A service dog must have her teeth brushed and mouth wiped out, ears cleaned, fur wiped down with a moist cloth [I use pre-moistened doggie wipes] and be brushed – every day!! Emmy goes to the groomer 4 times a year, too.  For more info, check out Emmy’s blog: Living With the Woof.

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Third – electric recliner that I don’t have to use my whole body to raise and lower [like I did the other one]. I also have another, non-electric recliner that is super cushie. Really helps on those days that are so achie I can’t stand to sit in a firmer chair.

Fourth – there is, of course, the Black and Decker electric jar opener. When I have to cook [when Himself isn’t feeling well] I can just stick a jar of pasta sauce in it and turn it on. It opens it for me. AND, it lets me use both hands to handle the jar. I also have a collection of other opener types.

Fifth – my shower chair. You ladies brace yourselves – I sit on it in the bathtub, and if I need help, Himself bathes me, gently, all the places I can’t reach or deal with depending on which joints are flared. He’s even learned to wash my hair without spraying water in my eyes and ears! If I don’t need help, then I just sit and shower – less tiring and easier for me than standing. As we’ve been married almost 36 years, now, I strongly doubt there is anything between us that should raise issues of modesty!

Remote Keyboard - I can use it from my lap in any recliner position

Remote Keyboard – I can use it from my lap in any recliner position

Remote Mouse - Lives on the arm of my chair.

Remote Mouse – Lives on the arm of my chair.

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Sixth – the computer set-up Himself fixed up for me! I have a desktop on the floor by my chair, a remote keyboard, a remote mouse, and a monitor that is on an extension from the wall. The heaviest component I have to handle is the keyboard which only weighs 1 lb 5 oz (or 594 gms). Even on a really bad day, I can slide it onto my lap or slide it back onto the little table without having to pick it up.

Monitor, adjustable from the wall, with clips holding pages I'm working with and notes.

Monitor, adjustable from the wall, with clips holding pages I’m working with and notes.

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Seventh – I really like having the Acorn Stair-lift that Himself and my oldest son installed for me when we bought this house. It makes access to the car, basement, pantry, and workshop possible for me! I would have worn out my hips and knees much sooner if I had to go down and up the stairs on foot 1-5 times a day! And, of course, there will be more and more days I will not be able to go downstairs and back at all.
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Biofreeze - good for up to moderate aches and pains!

Biofreeze – good for up to moderate aches and pains!

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Eighth – Biofreeze! What would any of us do without it! Roll or rub it on aching joints and/or aching muscles for relief. I don’t consider it either medical or medicinal because it is available without Rx pretty cheaply from Amazon.com.
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Such sweeties! Great for sharing body warmth!

Lily von Schnort and Christie Fur Columbus Such sweeties! Great for sharing body warmth!

Ninth – this list wouldn’t be complete without mentioning “Lily von Schnort” and “Christie Fur Columbus” – our little Bombay cats [5 yrs old, and 5# weight each]. At night, they curl up on either side of me right against my hips and “share warmth.” This helps keep my hips from hurting so much. They curl up on my lap during the day and help me relax with their purrs.
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Tenth – finally, I absolutely can’t live without my Hitachi body-wand. This device was originally made for physical therapy professionals. Now it’s available on the internet for anyone to purchase – from a variety of websites. I have fibromyalgia, which many RA’ers have, and Himself uses it on the muscles that hurt. My joints it doesn’t work as well for, but “buzzing” around the edges of the hurtie joints stimulates circulation and helps my pain to reduce immensely.

This is not in any way a complete list, but I wanted to show how we try to think “outside the box” for my comfort as well as using the “usual” kinds of things. For instance, Dragon Naturally Speaking is going to become my friend as soon as I can remove about 1/2 of the software from my computer! Right now it “locks up” everything.

There are many other things I use daily to weekly that are of great help: canes; walker; phone system; cellphone; Kindle; Kindle app for my Android phone; Hummingbird flosser; Sonicare toothbrush; task chairs (like secretary’s chairs, only higher); hot coffee / hot chocolate / hot tea / hot milk / hot buttered rum – whichever I need at the moment – hot drinks help with my Reynaud’s Syndrome [RA associated]; various cooking implements;

Hibermate Sleep Mask

Hibermate Sleep Mask

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and my Hibermate sleep mask.

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And the list goes on…   ♪  ♬  ♪  ♬ …and the list goes on!

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RA Warrior posted this topic to HER blog, so I decided to post about this topic to MY blog – from my point of view.

What is it like to have RA? In the middle of the night, I wake up in the middle of the night and I have nails being pounded through my toes, my feet, my ankles and/or my hands. I try to be quiet, my husband needs his sleep (heart and lung problems), but eventually he wakes up anyway and “reads my body.” Don’t know how he does it, but he knows exactly where I’m hurting without my telling him. He knows if I’m hurting even when I’m asleep. He gets up and gets a pain pill and a glass of milk for me, then he lightly rubs the areas that are hurting worst, and then holds me while I cry until I go back to sleep.

English: http://rheumatoidarthritis-symptoms.c...

English: http://rheumatoidarthritis-symptoms.com – Rheumatoid Arthritis in the hands (Photo credit: Wikipedia)

What is it like to have RA? I am sitting in my recliner with my feet elevated, dozing a little. Suddenly I feel like a burning poker has been pushed into my shoulder. I didn’t move it or anything, and the sudden onset startles me as well as torturing me. I don’t dare move my shoulder, so I use my other hand to take yet another pain pill with some warm tea. Eventually the pain subsides a little. Oh, yeah – tomorrow is methotrexate day. Maybe this attack is because I’m at the end of that MTX cycle? I don’t know. I never know.

What is it like to have RA? I’ve been looking forward to my Red Hats meeting for 4 weeks. It will be at my favorite barbecue place, and it’s a Luau! What fun! The morning of the event, I get out of bed and nearly fall when a sledgehammer hits my right hip. I put some ice on it, and take a pain pill. As it gets closer to time, I realize I won’t be able to go – again. I make the call they are so used to getting.

What is it like to have RA? My birthday party, planned by my children and grandchildren, which I have looked forward to for 2 months, is that night. I woke up feeling vaguely nauseous, but take all my pills anyway. The nausea increases along with heartburn, and I resort to Tums and things settle down some. I am able to get dressed and enjoy the party – from my wheelchair. Which means I can’t move easily from room to room to get to talk to everyone. What a bummer! But I do get to visit and chat with two friends who stay after everyone else has left. I “hit the hay” 2 hours later than usual, and am so keyed up I can’t get to sleep for 2 more hours. It takes me 5 days to recover.

What is it like to have RA? An hour ago, I dropped my cellphone. My hands are too sore to use the “grabber,” so I have to decide how to manage it – ask my husband (who is “huffy-puffy” with his COPD today), or try to bend over and get it myself. I bend over while sitting in my chair, then can’t get back up. I pretend to be looking for something. Finally, I get my back and hips unlocked, and am able to sit upright again. Hip and back are radiating fiery pain, but I just grit my teeth. Eventually, it subsides to a “dull roar.”

What is it like to have RA? Because my feet are numb (from nerve damage and from Reynaud’s Syndrome), my husband doesn’t want to let me drive – I can’t feel the brake pedal or gas pedal, and could easily have a wreck. My shoulders are chronically painful and restricted in movement – again a driving hazard. He has to take me everywhere I need to go, now. I’ve always driven myself – I’ve driven an old 1963 Land Rover, towed large travel trailers and parked successfully, driven an old truck, a VW beetle, an International SUV (before they were called SUV’s), and various vans and mini-vans. But now, I can’t even drive our Dodge Caravan – with automatic-nearly-everything.

What is it like to have RA? Gradually, and again, not so gradually, my life has come apart at the seams. I’m no longer the competent, employed person I always was – who could be relied upon to run errands on the way home from work, take kids to parties and picnics, who earned a good living, who taught on the university level, who got a PhD at age 53. No, I’m none of those things. Rather, I’m more and more helpless, terrified that my husband will die before I do – because I need so much help to do nearly everything. My husband does most of the cooking. He bakes all our bread. He makes our ice cream. Our meals – prepared by him – in the past several weeks have included: shrimp and mixed rice pilaf, Steak au Poiret, Biftek Haché à la Lyonnaise, tempura, Bagna cauda [look it up – it’s delicious], Boeuf Bourguignon, Beef Stroganoff, fondue (from scratch, not a package), and pork roast with maple-mustard sauce. He made our breakfast sausage from scratch (ground pork, seasonings, and a little maple syrup or honey), he has made eggs benedict for breakfast on weekends, baked incredible brownies, and made some great blueberry muffins. He does all that – because he knows what I like to eat, and knows I can no longer cook regularly. Occasionally he will let me make supper, but breakfast (1 hardboiled egg each, 1 slice toast, and coffee) is usually mine to make.

That’s the way it goes. During the day the pain can be just as bad, but I have other things to divert me from the pain, so I seem to be able to ignore it better, or put myself into a different “place” so I don’t react to the pain.

But there are other times, between flares, when I have almost no pain. Can’t predict when it will occur, either. Rain, shine, snow, sleet – could be bad, could be relatively comfortable.

I think one of the things that bothers me, is that the joints in my hands and feet don’t look bad – not like my mother’s did. Her hands were horribly deformed, as were her feet. Her knees looked like softballs in the middle of her skinny legs. We would bring her to our home for Thanksgiving or Christmas dinner, and she’d only be able to “cope” with the excitement and activity for a short period of time, then I’d have to take her back to the nursing home with a box of goodies that she never got to eat. I learned to prepare that box ahead of time and keep it in the refrigerator. She would eat the things in the box over the next 2 or 3 days.

My joints swell a little, then usually go down, leaving no visible trace of the pain I have. My kids have problems explaining it to their children, but eventually the grandchildren will grow up and, hopefully, understand.

Some mornings I wake up and I’m ready to take on the world like I used to. But it never lasts.

Just DRAT! I HATE this disease! I HATE not knowing what I will and won’t be able to do until the morning or afternoon of the date. I HATE the fatigue, the dragging, down to the bone marrow weariness. Mostly, however I HATE not being the “me” I once was. I HATE being the person I have become.

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