All posts filed under: RA journal

RA In the kitchen

In the kitchen with RA When I was twelve, I road my bike downtown with my mom’s green stamp book in my pocket. I road my bike back home with my first Betty Crocker Cookbook . I still have it. Now I have many recipe resources including the food section in the  NY Times, All recipes and Martha Stewart emails, and King Arthur Baking Recipes. Now I have Rheumatoid Arthritis and my life has added uphill challenges. Between RA pain and fatigue, doctor visits and drug complications,  ambition frequently descends into the basic mode of  required activity. That activity is as basic as  getting dressed in the morning. Cooking?  Is it really necessary anymore especially when you add the difficulties of RA to the mix?  For some of us, it is. I like to cook. I like the taste of homemade meals. I like the fragrance of baking bread coming from the oven. I enjoy working with my tools and ingredients in my kitchen.  Fresh fruit and veggies. Organic chicken. Cream, buttermilk, unsalted butter.  Working …

Mary’s RA Journal

Mary’s RA Journal May 2021 Year nine I was diagnosed with RA eight years ago. The onset seemed sudden. But was it? My RA started in my feet. I was one of the 20% whose symptoms started in their feet. My internist thought I was too old to have RA. He seemed to think my feet were fine. As recent as eight years ago, rheumatologists did not routinely examine a patient’s feet. They believed RA started in the small joints of the hands. Examining the feet was inconvenient. Examining the feet took too muctook to much time. My symptoms increased. My pain became severe. I was very sick. As a victim of an unresponsive healthcare system, I finally sought relief in the ER. I was fortunate to be seen by a knowledgeable doctor who treated me and sent me to a rheumatologist. My career as a rheumatoid arthritis patient began. I spent years on methotrexate which helped me about 50%. I tried most of the biologics in between being treated for three different cancers.  Orencia …

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RA Journal Progression

Mary’s Arthritis Journal May 8, 2021 I have always been amazed by those who can work through illness. I once had a friend who had a chronic leukemia. During episodes of chemo, she found that she could not sleep. Instead of watching endless Netflix, she spent her nights researching and writing a successful blog on ghost stories. She used her down time to her advantage. I am not like her. I wallow. I vegetate. My brain seems to stop working. When my rheumatoid arthritis is sending inflammatory messengers throughout my body, when pain is attacking every moveable joint, when I have depleted my stores of coping, I retreat. My body feels sick. My research goes on hold as does my writing. My mind is stuck in a quagmire. There is only a wish to escape and a hope that there will be an end, and in that end, I will be alive again. I will be okay. My flares are becoming something to be feared. My ankles and my toes remain swollen. It is very …

Managing RA

I am an optimist. But I am also a realist. When faced with a painful situation, I sometimes  dance around the issue for a few turns. Then, painful, or not, I face whatever it is,  deal with it and then do my best to move on. Stiff upper lip and all that. Each time I was diagnosed with a new cancer I did just that. I never once thought why me. I had the surgery, the chemo, the radiation. Suffered through it. Recovered for the most part and moved on. I felt that none of those three cancers would ever return as the treatments were brutal to my body and left nothing unaffected. My method of handling problems worked with cancer. Then I was diagnosed with rheumatoid arthritis almost eight years ago. RA is a painful, debilitating and a  lifelong disease. It is a disease that must be dealt with daily. RA will not go away just because I am weary of living with it. It is forever. It is not a problem to be …

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 …

Seven year anniversary and infection

It was seven years ago this month. I was acutely ill with my first encounter of rheumatoid arthritis. My illness had not been given a name yet. A week before that I had seen the ER doc who started me on prednisone and who was  sending me to the rheumatologist that I would see in about another week. I had very little sleep. A few hours a night at most. I was in excruciating pain. Life was not good. I can look back with a sense of relief. I no longer have the kind of pain that made me think I had broken glass shards in my joints. It took several years after my diagnosis for my RA to settle down. I never went into remission. My inflammation has always simmered. Methotrexate was my base. I finally settled into 25 mg subq once a week. It helped. After a few years my pain was never quite the same as it was originally. My feet became central to my discomfort. Custom orthotics and Dr Comfort shoes …

Infection and off methotrexate

I stopped taking Actemra. I had only two doses this time. Last week I stopped taking methotrexate. I had been on it since 2013. All this was at  a suggestion from my oncologist who was helping me battle a severe breast infection. The infection started in October 2019. I went to a wound clinic for a month. I had surgery to debride necrotic, radiated breast tissue 13 December. Then the infection returned. Perhaps it had never left. I also developed a severe cellulitis. The cellulitis covered my entire breast or what was left of it. Now the cellulitis is down to a couple of inches. The whole thing was caused by  the radiation treatment that I had for breast cancer in 2013. The radiated tissue became necrotic and infected. It is not uncommon. I wonder what part my RA drugs played in this long standing dilemma. This infection has gone on for three months. I do know that methotrexate should be stopped while a person is on an antibiotic. Methotrexate should not be used at …