All posts tagged: RA progression

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 …

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 …