All posts tagged: RA attitude

RA Solutions Gardening

I have the misfortune of having a painfully, progressing rheumatoid arthritis. My RA started when I was older. An older onset RA tends to be more severe like it is trying to make up past time. After eight years, most of my joints are affected. I have neuropathy in my feet and joint damage in my hands and feet. I walk with a cane when I’m out and frequently use a walker to get around at home. I am disabled. It has taken me a long time to admit it. But the upside is that I can make changes to my life so that I can manage in spite of disability. The long cozy nights by the fire have given way to the longer days of spring. It is time to be out in the garden. My roses were amazing all through May. My clematis is covered in large dark blue flowers. Hosta fill one corner of my patio. All my herbs have renewed themselves. I enjoy the fruits of past garden labors and am …

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.

Our core and why we need it

  Our core is our foundation. It is the stabilizer muscles. It links the upper body with the lower body. Our core  keeps us upright, agile, and able to perform all the daily tasks that constitute our lives. The core muscles are located in our trunk. Our core is a muscular corset that keeps our organs inside, our backs upright and our bodies able to do their job.  It lets us twist and bend.  A strong core will keep us in good shape as we age and when we are ill. With a strong core we are less likely to fall as we get older. We are less likely to have back problems. We use our core when we do housework and when we play golf. We use our core when we play with our children and when we have sex. The quality of our activity depends on our core. The core comprises groups of muscles with strange sounding names. The rectus abdominis, transverse abdominis; the obliques, front and side,  lower lats, erector spinae, running …

Mary Man's RA Journal Icon

Disabling RA

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

  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 …

Living with RA Disability

  Rheumatoid arthritis (RA) is considered a chronic disease. A characteristic of chronic disease is its disabling features. Walking may become more difficult. Activities like dressing, preparing meals, performing personal hygiene and completing household chores become harder and harder. Life becomes increasingly challenging until a person hits a crossroad where they make changes in his or her life or gradually slips down the slippery slope into a dependence that requires custodial care and no turning back.  RA is known for making life challenging in many ways. Like cancer, diabetes or all the other autoimmune diseases, being able to live with RA starts by making changes to our lifestyle. Pain management is a big concern for those with RA. There is no going around the fact that pain is a common feature of every day RA life. There has been much written on managing pain. Managing pain is possible with the help of professionals skilled in pain management. The topic requires its own space although these suggestions will help lease the burden of that pain. For …

Look Good Feel Better

There is one good thing about chemotherapy. It is the Look Good Feel Better program. Fun. A time to share. Like Christmas. It is a two-hour appointment with a cosmetologist in a small group of women who have cancer. I had participated in a program five years ago when I was in radiation treatment for breast cancer. That appointment was at MD Anderson on Indian School near Kaseman. This session was at the Rust Cancer Center and was equally as good as the one five years ago. We are each given a cosmetic bag full of cosmetics that matches our skin tones. The bags come sealed and ready for us. At our places we each have a mirror and cosmetic wipes. Opening the bag is like Christmas. My bag had Chanel powder, lipstick and blush. Clinique foundation, Estee Lauder face cream and eye makeup, IT brow powder and a set of brushes, body lotion and sun screen. Pure joy. Our instructor walks us through the steps of taking care of our face during cancer treatment. …

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 the …

the joy of roses

Cancer Number Three and RA

  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 …