All posts filed under: RA journal

Seven year anniversary and infection

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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

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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 …

Life is good

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Christmas is surrounding us. Thoughtful considerations given. Small kindnesses. Music. Good chocolate. Desserts. Hugs. Packages in shiny paper. And the knowledge I am cared for. I feel fortunate. I have loved ones to share the holidays and although I am a little wobbly at times, I am able to do my favorite activities for the season. I have had past years where I have felt frightfully alone. I have been fearful for my life. I have been fearful for my future. But now my heart has settled down. I know better who I am.  I feel satisfied with myself. I accept my place in the world and I am grateful for it. Life is good. My son and I took Francis for a picture with Santa at Petco. We were first. Francis growled at a young French Bull dog and then sat on Santa’s lap like they were old friends. Another good memory.

RA in New Mexico

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I have Rheumatoid Arthritis in New Mexico. Are there advantages to living in New Mexico with RA? Sure there are. The climate is high desert and very dry. Humidity is tough for many situations. It is frequently hard on the joints.   Less humidity is a good thing. Another one. New Mexico is sunny. Our brains love light. Light helps to keep us happy. RAers need happy help. Sunflowers are like happy pills. They make us smile. New Mexico is a good place to have RA.

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Disabling RA

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One of the big pleasures I have is watching the full moon make its way up and over the mountain. I see it from my patio doors as I am making dinner. Lately, it not only is a big, full moon but also a beautiful, warm yellow. When I first see it, the moon  is just peering over the top edge of the mountain. Then it seems to sit on the edge of the mountain top just before continuing  its journey up into the night sky. A moment in time. I was thinking of good things to distract from the pain I have in my joints and the nagging fear in the back of my mind that I am becoming more disabled with each passing day. My RA was diagnosed seven years ago in January. Since then, I have had three cancers and a hip replacement. Most of that time I have been on methotrexate, mostly injectable. It has slowed the progress of the RA. It could be worse. I’ve been on almost all the …

Stronger with exercise

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  October 2019 I am amazed that I feel so much better. It has been a gradual process, a yearlong process. Recovery from the treatment of a rare uterine cancer is long, discouraging at times and scary at others. I say scary because the fatigue and the use of a brain that seems murky and sluggish is not something I would want to live with permanently. My fear was that this mental and physical slowness might just be permanent. So, I am relieved, quietly jubilant. My spark has re-ignited and I feel alive again. I am now able to go to the gym without being worn out for the day. My legs are stronger. I am becoming sturdy. I am reading again. I just finished Educated by Tara Westover and thoroughly enjoyed it. Her evolution from a brain washed, isolated child into a creative, educated and accomplished woman is inspirational. In the last few months I have found a comfort zone in riding the recumbent bike for 45 minutes three times a week at Planet …

I’m Back

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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 …

How my hair came to fall out, more experiences with cancer treatment

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I remember when I learned about my latest cancer (#3).I knew that once again my life would be consumed by all things cancer. After major comprehensive surgery (they took almost everything out), it was time to settle into chemotherapy. My oncologist, Sara Jordan, had explained the reasoning behind the treatment she proposed. Chemotherapy would be part two after surgery and before vaginal radiation. I figured she might be able to cure me which sounded appealing and worth the effort I would be expending. This picture shows my hair, but it was taken after surgery and before chemo. The chemo was to be a commonly used combination of Taxol and Carboplatin. Six sessions in 21-day cycles. Hair loss is definite and is estimated to be 2-3 weeks after initial infusion. This allows a little planning time. My hair stylist, Audrey, cut my hair into a short pixie. Much better than a butch or a clean shave. The second part of the plan was to shave it when it started falling out. About day 19 after the …

the joy of roses

Cancer Number Three and RA

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  It is almost a month since I had a robotic radical hysterectomy and it has been four days since I had my first chemo. I feel pretty good all things considered. Additionally, a minor surgical procedure placed a power injectable SMART PORT under my skin connected to a catheter that was threaded into my jugular vein and down to my superior vena cava creating fast access to my body’s circulation.  It is not as bad as it sounds. Sloan Kettering has a PDF that explains the procedure. My skin has been tender, but the lidocaine ointment works and relieves the discomfort. My RA is complaining with all joints hurting morning and again evening time. Walking hurts my feet even though I have custom shoes and custom triple layer inserts.  I am glad I take methotrexate injections, Plaquenil and meloxicam. I take 6 mg Medrol and can boost the dose into a dose pack if needed. So far, I am holding steady. With RA I think it is important to move. Aerobics are nice but …

Cancer Surgery Number Three

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My surgery is over, and after an overnight hospital stay I am safely home. The doctor took many things out of me and she biopsied the rest. My doctor is a GYN oncologist surgeon, Sara Jordan. She is amazing and couldn’t be better. She feels that my serous uterine cancer, a rare subset of endometrial cancer and known for recurring, needs to be treated aggressively. I completed the first step, surgery. Prepping for the surgery was a challenge. I was required to spend Mother’s Day on a clear liquid diet. Then on Monday I was reduced to NPO status even though surgery wasn’t until one pm. I was running on empty so when I approached my preop, well-padded bed, I was relieved to get in. Stripped down like a hijacked car, clothed in the traditional blue gown, IV successfully inserted, I was ready for surgery. OR nurse stopped in. Anesthesiologist checked in. Dr Jordan reviewed the surgery again and introduced me to the second surgeon. Time seemed to accelerate. It was five minutes past one …