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 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 …

RA flare warning signs

Many of us who have RA have premonitions before the onset of a flare. For me, I start feeling chilled. Occasionally, I will check my temperature to see if I am coming down with something and my temperature will be 100.4 F. or maybe 99.6 F. It is a Rheumatoid Arthritis temperature. Additionally, my skin becomes itchy over joints. They are not always the same joints. Sometimes it is the knuckles and sometimes it is the wrists. I am also energetic and have several irons in the fire at the same time. As a flare draws nearer, I start losing my energy reserve. I feel like my battery is draining to a very low level. I knit more, and my baking becomes less creative. I feel duller. I would rather spend more time watching the Great British Bake Off and less time working on research for my current book. I am sinking. For me, it is time to start a Medrol dose pack and let myself slow down. I will still need to go to …

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 …

Being in a funk with RA

I have to admit I am in a place where the mind is willing but my RA body is not. I have been living with extreme pain for a month and I have been trying to manage it myself.  Yoga, pain medicine on schedule, more medrol.  All for naught. I had sent an email via My Chart to my rheumatologist but I had no response.  It seems to be a situation where I have no choice but to call her.  Last I talked with her she was mad at me because I brought the statistics on Actemra to her. So asking her for help is a stretch. However, I have gone through my resources and they are not enough. So I will call. Living with chronic pain is bad enough. The worst of it is how immobilizing it is. My hip joints are deteriorating as is my spine. The worst of the pain is in my left hip and I bet it is where the sciatic nerve passes by the hip joint. I am okay …

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 …

RA: to run and hide or to jump into the fray

    I have passed the three-year mark with the official diagnosis of rheumatoid arthritis.  I am better in some ways. I can work the disease better. I am worse in some ways. The damn thing just won’t go away. I remember when I realized that I only see my rheumatologist at best every six weeks and at worst every three months. I realized that I was on my own most of the time. I was on my own to manage my rheumatoid arthritis, two cancers, my home, my life. And if I didn’t take charge, no one would. At 72, I had better get busy. I did think about it. One choice was to withdraw into myself. My rheumatologist said many do. I also had the choice of focusing on the here and now and managing my situation. Historically, when I have been in a bad place I have felt sorry for myself a bit. I call it whining. A little is okay. It is just something a person sometimes needs to go through. …