All posts tagged: RA progression

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 …

Surviving Food, Nutrition and RA

This is the first few pages of the nutrition section in my up coming book Self-Managing Rheumatoid Arthritis. Surviving Food, Nutrition and RA We all know that good nutrition is an important part of staying healthy. Most of us have limited knowledge on what constitutes eating well. Our problems are many when we try to figure this out. What is good nutrition? How does it fit into our family style? How do we manage when we have pain and fatigue? How do we manage when our budgets are limited?  To complicate matters, each of us is unique both in body make-up and in our responses to our environment. We need diets or food plans that work for us individually. It is a given that a good diet will help you manage your RA. Good food will help. You might already realize your particular dietary needs. Some will do better on a vegetarian diet. Some will do better without dairy. Many will thrive on a Mediterranean diet or an anti-inflammatory diet. Some are gluten intolerant. Some …

Life is good

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, Mojo and writing a book

My mojo  means that I have creative energy and an optimistic outlook. When I  have those things, I am good to go. I can write. I can read complex articles. I am living in a good space. Happy. I have found my voice for my RA book. My writing had stalled at 75%. Dead in the water. It just wasn’t where I wanted to go. I finally figured it out. With some modifications I will have it running again. From time to time I will include samples from a chapter.   Chapter Five The Character of RA Learning you have a a diagnosis of rheumatoid arthritis, starts you on a journey of a lifetime. When I was diagnosed with RA, I read a wonderful book that proved to be a guide for me on my journey. One of the things I came to understand was that I was in charge of me and I was in charge of managing my own RA. My responsibility. It is important to understand your rheumatoid arthritis and it is …

More about RA drug Actemra

Actemra     Tocilizumab     TCZ Actemra is a biologic drug used to treat the symptoms of rheumatoid arthritis. It is also approved for giant cell arteritis, polyarticular juvenile idiopathic arthritis (PJIA), systemic juvenile idiopathic arthritis (SJIA) and cytokine release syndrome (CRS). Response to expect                                                                                                                              At 24 weeks of weekly injections, 69% of those with RA had a 20% improvement in  symptoms. Additionally, 47% had a 50% improvement and 24% had a 70% improvement. That leaves 31% with no improvement. None of the biologics work for everyone. Pill, shot or IV? Actemra is a rheumatoid arthritis drug that is a large molecule. What that means is that Actemra would not work as a pill and must …

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

  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 …

On becoming the bionic woman

I wonder how many of us are walking around with replacement parts. Joint replacement has become common and it is successful surgery. I have several friends who have both knees replaced or both hips replaced and they are fine with it. And now, I am about ready to embark on my first joint replacement. My left hip will be first on the chopping block. This is a bad visualization. I am trying hard not to think about what the surgeon will be doing. It is scary and gruesome. A Frankenstein thing. Instead, I am focusing on the bionic woman thought. I will be in much better condition once I complete the rehab process. I will have a fabulous new joint. Won’t I be lucky? I will. I have spent the summer in extreme pain. My doc had a tough time identifying my hip issue. After all, my hip had good range of motion without pain. An MRI revealed my hip deteriorating badly plus a bad labral tear with pieces loose in the joint. My pain …