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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!

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!}

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!

For all of you who have known and loved (or hated) me, you know that when I received my first Mobility Assistance Dog (Emmy) from PAALS (Palmetto Animal Assisted Life Services) it was a life-changing event! I was able to walk farther, walk up and down the steep driveway to get mail, and go to my clients’ offices.

EmmyOnStump

Emmy Retrieves My Cane

Emmy Retrieves My Cane

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

When Emmy retired because of medical reasons, I was devastated. PAALS came up with a solution, and I now have Warrior! We’ve been partners for a little over a year, and despite my shoulder surgery in April, and the long recovery involved, we are doing well together.

Warrior Doing Laundry for Me

Warrior Doing Laundry for Me

Warrior Getting Shirt Out of Washer

Warrior Getting Shirt Out of Washer

Warrior With Shirt to be Put In Dryer

Warrior With Shirt to be Put In Dryer

 

 

 

 

 

 

 

 

The emergency is this: PAALS is in BIG TROUBLE!! For 9 years, this little 501(c)(3) organization has worked like an ant colony not only to provide quality-trained dogs for people like me (mobility needs), for children with autism, and for facilities (like PT clinics), but more and more for Veterans with PTSD. The Veterans who can go through the PAALS program and receive their dogs are able to “function far better in society, staying calm and being able to go out in the community and lead a relatively normal life.” The staff and volunteers have, at the same time, been working extremely hard to scrape the money together to get their own building and facility for housing and training the dogs.

In May, 2015, they finally were able to purchase a building with an adequately sized, fenced-in area. With weeks and weeks of hard work by volunteers and staff, they were able to renovate the building to meet the specialized needs of their dogs, staff and clients. They moved their operations into the new building in early August. There was much optimism and cheering!

BUT, almost immediately, DISASTER STRUCK!! They suffered from a sewage backup from down the street, that left 2 inches of raw sewage in the entire building! Fortunately, the dogs were gone for the weekend, so none of them were harmed, but the staff came in to an absolute catastrophe on Monday morning. Unfortunately, the sewage had probably been in place for more than 24 hours, which is extremely harmful.

The sewer company, East Richland County Public Service District, found that the blockage was in the main line. They sent a company to clean it up, however, there have been insurance issues, so the company only got rid of the sewage and treated the floors with a cleansing agent. Since the raw sewage had been sitting and the cleanup went slowly, PAALS now has a problem with mold, so the cleanup and repair work is going to be extensive. PAALS has been told several times that no insurance is going to cover it, except a $5000 allotment from the state. The estimate to clean up and repair the building (remove and replace the drywall and flooring and thoroughly clean the studs) is over $130,000. They just don’t have this kind of money – They had spent most of their money buying and renovating the building.

They are now stuck with an unusable building that can’t be sold and is very expensive to make usable. I don’t want this catastrophe to cause the end of PAALS!!

What can be done? Even if Himself and I lived in South Carolina, we would not be able to volunteer or do anything to help. We have limited funds ourselves, being retired and on Social Security, and being “aged and decrepit,” are not be able to do any of the manual labor. Thus, we are trying to help them to our ability with fundraising. So far, in 1 day, 75 people have raised $5000! This is mainly in $25 and $50 increments, with a few larger donations.

Just donations of $5 or $10 will help. More, if possible, of course, but ANYTHING you can give is important and gladly, gratefully accepted by PAALS. You can donate directly to PAALS by going to their website HERE or by going to their GOFUNDME page.

You can also help PAALS by spreading the news to your friends and relations. I know that every organization in the world is asking for money. And many are very worthy causes – perhaps a cause you have supported for years. But PAALS has done so much good already, it would just about destroy all the people on the waiting list if they could not get their dogs! And the staff and volunteers who have put their time, energy, money and blood into building this little organization would simply be devastated. Those of us who already have PAALS dogs would be left trying to continue without the support of the PAALS organization.

Please “Help PAALS Get Back On Their Paws!

Thank you so VERY MUCH!

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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