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 …

Lockdown Update

We are still locked down. We go to Costco and to Smiths. We travel out with our masks and our hand sanitizers. Those we meet are friendly and have smiling eyes behind their masks. If a person depended on reading lips to understand another, they are currently out of luck. Who would have guessed? Certainly not last September. Life changes so quickly. My garden is winding down. The squirrels are fat and happy after eating my tomatoes. The roadrunner couple I saw having sex in my back yard now have healthy teenagers who are as aggressive about eating birds as their parents. Our quail population is booming. They love quail blocks and nest along side the squirrels on a little used side of my property. I make bread every couple of days. I have many recipes for rye bread, but rye flour is now unattainable. Not enough planted by the farmers for the current demand. I also make a lot of oatmeal bread. Lucky for me. I make my own buns for bratwurst. I also …

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 …

No more methotrexate

RA Dilemma Number Five There is another dilemma to face when you have rheumatoid arthritis. I was surprised by this one. After all, I have had RA for seven years and feel I have covered a lot of ground in that time. I know infection posed  a very high risk while taking RA meds. My mind thought flu or maybe pneumonia. This one started five months ago. Suddenly and out of the blue, my right breast developed a lesion and stated to drain. I felt feverish and went to see my oncologist who sent me to the breast surgeon oncologist down the hall because she was the one who had the ultrasound machine. She came in, introduced herself and looked at my lesion. She instantly knew that it was caused by necrotic breast tissue due to radiation for breast cancer. The radiated tissue gradually degenerates, expands until it pushes through the delicate breast skin and drains. It cultured positive and I was sent to the wound clinic. Eventually, it was determined that the only solution …

I’m Back

I have completed chemotherapy and I have completed radiation. At this point I think I am cured. It’s been a long year. I am grateful as I have friends who are not as fortunate. In addition to  being diagnosed with another cancer this year, my computer died. The new one arrived Friday. It is nice to be up and running again. My RA doc has moved on to the VA. She is going to be working on research projects as well as seeing patients. I have followed her as I am a Vet.  She is happy. She had spent several of her student years working at the VA and appreciates its culture. She has ordered Voltaren Gel for the pain I have in my feet. The pain is a problem for me when I go to bed. Voltaren is a topical gel of Diclofenac, an anti-inflammatory. It arrived this morning. I will let you know if it works for me. Albuquerque has been one of the cold spots in the nation. It’s been down to …

RA and Another Biopsy

Back to the hospital for another round with the medical community. When I had learned that I would need an endometrial biopsy for uterine changes due to the breast cancer drug Tamoxifen and a D&C due to polyps, all I could think of was here we go again. I am six months out from a difficult hip replacement recovery. I am still recovering, stiff and sore. But I am in much better shape than I had been. I am in warm water therapy classes several times a week. My garden is a joy. Beautiful, productive and satisfying. My yard is home to rabbits, a squirrel, quail, roadrunner and a happy assortment of birds. By the end of the year I hope to be certified as a wildlife habitat by the National Wildlife Federation. My brain is finally working, and I am starting to write again. Then this. I had previously written a blog on getting more bad news. This really isn’t bad yet. I won’t know for another 10 days or so. Those with RA …

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 …