All posts filed under: Mary’s RA Journal

The purpose of this category is to discuss my personal experiences with rheumatoid arthritis. RA is a journey. Sometimes the road is rocky despite our best intentions.

RA flares without the biologics

I am living through my days without methotrexate. I am not on any of the biologics. Hydroxychloroquine is no help and has been set aside. At first, I felt left alone in the world without armor.  Would a flare become so severe that I would spiral down and down into total pain and immobility as I had in 2013? That was my fear. For years, a low level of pain humming in the background has kept me company. I have a degenerating spine. There are long fancy words for what has attacked my spine. Plainly said, I have a bad back. I could say I inherited it  from my dad. I am accustomed to pain. Now I have RA. Over the years I have learned to ignore the humming pain. However, there is a tipping point after the start of a flare where something needs to be done. As a flare starts  pain grows louder in the small joints in my feet. The rest of my feet ache. My left ankle develops sharp pain making …

At home with RA and Covid March 2020

We live in Albuquerque. Sunny day. Tomato plants outgrowing their nursery. Pantry is stocked as usual, and our internet is dependable. Doctor appointments are via phone. Trips to the grocery store are carefully planned. There is no bread flour or other baking supplies on the grocery shelves. Eggs can be hard to get. There is no food in Amazon’s Pantry.  We are on lockdown. Yet we still count ourselves as lucky people. We do not have the virus. No one in our family has the virus. Francis, our little cockapoo, is healthy. Our pantry shelves are stocked. Our income, at this moment, is as it should be. Our home is safe. We are lucky. I have rheumatoid arthritis. Recently I had to stop taking my RA meds, methotrexate and hydroxychloroquine as two of my cancer docs said to stop. I had developed necrotic, infected tissue from breast cancer radiation treatment. This infection started in October. I had a partial mastectomy in December followed by a severe cellulitis. Now after months of treatment at the wound …

Too old to have RA

Thank God for my rheumatologist. She has been supportive through thick or thin.  Originally, she said she thought I had Polymyalgia Rheumatica because of my age and shoulder involvement. I didn’t have it. I have elderly onset rheumatoid arthritis (EORA) which occurs in those over 60, frequently has an acute onset and includes shoulder involvement. My inflammatory markers at the time were sky high. That was me. I proceeded to become symmetrical and have  followed the classic RA pattern. I am also RF negative. My RA seems to confuse the other doctors that I have seen recently.  Some think I am just too old to have RA. Some think because my inflammatory markers are not elevated that my RA is under control. Some think I can’t have RA because I am RF negative. Many otherwise well informed doctors do  have outdated information about Rheumatoid Arthritis. I have sero-negative RA. My RA has never been under control although since my hip replacement I do feel better. My RA is under 5 years old. My feet are …

My Military family

This picture is one of few I have of my military career. It was a beginning. I am proud of my family’s service to our country. My dad was Army in WWII. My uncle was a bomber navigator. His plane was shot down over Africa and he was the only survivor. He was nursed back to health by Catholic nuns. Another uncle was stationed in Japan in the 50s. My brother was Air Force in the late 60s. I was an Air Force nurse during the same time frame. My children’s father was career Air Force. My son Steven was also career Air Force with several tours in Afghanistan. We were all proud to serve.

RA Journal 10-17-16

I took the last pill in the medrol pack this morning. I am back to sleeping again. I feel better.  My feet as well as my hands remain a problem. Swelling. Stiff. Pain. But manageable. After being a recluse for a week, I made it out to Kohl’s to use my 30% coupon yesterday.  Fall clothes and a few Xmas presents. Panera’s for squash soup and salad. Michaels for a Lion’s Brand wool that is not easy to find. It is cranberry, bulky and beautiful. Home to rest. Today is another sunny day in ABQ. Still a warming fire is pleasant. Life is good. The medrol pack has saved me again. I was very ill and was getting discouraged. I don’t know how long this improvement will last but I will enjoy it while I have it. It feels like a stay of execution. I came to the conclusion a while back that my RA is progressive and that there is no cure. There is only symptom relief. For some, the biologics hold the promise of damage control. That promise at best is for 50% of …

RA Journal 10-13-16

It is 5 am. Coffee perking. Cozy flames from the fireplace. Antoine, my 10 year old Maine Coon cat, fed. No sleep at all, not even a little dosing.  So I  finally decided to get up and start my day. I have RA. It is a bummer. Presently, I am on prednisone for a flare. I like the medrol packs which plus my regular prednisone help me feel better. But it is day four and the sleeplessness side effect has kicked in. It might last another day. I will eventually sleep. Most with the diagnosis of RA have a progressive form of the disease. I can say I have been in a constant flare for almost 4 years. That means my body has been continually inflamed for almost 4 years. Definitely not good for my body.  Sometimes are worse than other times. None of it is good. Mine started in my feet.  My toes, my feet, my ankles are reaching the point where I am worried about mobility. My knuckles can be bad as several of my fingers can. My right shoulder is worse than my left but the left is …

A celebration of Recovery 10,000Waves

About as high as you can go up into the mountains in Santa Fe on the road to the Ski Basin is tucked a high-class Japanese Spa specializing in bodywork and skin care. Ten Thousand Waves.  My destination. Just what I need. I desperately need. My treatment choice is NOSE TO TOES. A Mother’s Day gift certificate from Chris and Katie. I live in Albuquerque and this would be my first road trip in three years. I gassed my Tin Lizzy, my 5-year-old Mini Cooper Clubman. Pepper white. Turbo. Added bottled water, spa directions.  Put on my winter jacket. Ready to go. Finally!  This is November. I headed toward I-25. Sunny day. Cool. I am on the road.  I am also on the recovering end of a devastating year. The year was 2013. Almost three years ago. I had been diagnosed with a severe rheumatoid arthritis followed by two different diagnoses of cancer. Surgery. Radiation for each. Pills forever. No relief for the RA until this year with the start of Orencia. It is a …

My excuse

Rheumatoid Arthritis, i.e. Rheumatoid Disease, can really screw up your plans. My plan was to complete Word Press Blogging 101, organize my research methods, improve my writing skills and write daily. Then the fatigue sets in.  Low grade temperature, swelling feet, ankles, hands and wrists, neck. Pain saturated every joint in my body including my jaw.  I became a slow-moving zombie, too sick to become depressed. Life came to a grinding halt. Too nauseated to eat, but not losing an ounce.  Damn it!  I could see myself in that wheelchair and I just didn’t want to go there. My focus became surviving. I am on a schedule of tramadol and gabapentin. I am on prednisone. I could increase it but hate to.  More sleeplessness. I am on methotrexate injections, Plaquenil, and meloxicam plus the sister medications taken for the side effects. I understand better than I ever had before that I have few options left. I am heading for the slippery slope. Scary thought. My rheumatologist has given me most of what she had. Next …