All posts tagged: RA attitude

Managing RA and commitments

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I made a big accomplishment recently that makes me very happy.  I  completed my role as planning committee member for Cancer Support Now’s 4th Annual Long-Term Effects of Cancer Survivorship Conference.  The event was successful. I could see it being valuable to attendees just like it was for me last year.  I had loved it. Felt grateful for it. I had wanted to be involved in it. Being involved had meant crossing town at 5 pm for planning meetings.  Crossing town just at the time when the pain and the fatigue of RA increased for me was a big one. I made the decision to go. It was the first big commitment I had made since my odyssey of two cancers and a diagnosis of progressive RA began. I made the meetings. The conference was coming together. The Monday of the event I woke to severe pain in all my joints. It was not good. The problem with RA is that it is totally unpredictable. Severe fatigue or severe pain are random occurrences.   The pain kept …

RA and cancer support

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Cancer and RA seem to go hand in hand. Shortly after I was diagnosed with RA,  I was diagnosed with two different cancers, thyroid cancer and then breast cancer.  I had the big C hanging over me like a grey cloud, leading me down the cancer road with all the usual experiences.  After surgeries and after radiation treatments, I started looking for help, for support. I found it with the Cancer Support Now Third Annual Long Term Effects of Cancer Survivorship Conference.  A long name worth repeating as I became totally impressed with this organization. Dava Gerard, MD, a respected physician in the cancer field, gave the talk ¨The Journey: From Surviving to Thriving¨.  It was just what I needed.  Arti Prasad, MD presented ¨Holistic Cancer Survivorship¨.  Again excellent. There were breakout sessions. Free lunch from Jason’s Deli. The morning had started with a generous breakfast. I felt welcomed and very glad to be there. Since then, I have joined the board of Cancer Support Now and am on the committee for this year’s conference. Both are big commitments …

Finally, a life

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I really thought I was going to die last year.  To prepare, I filled out the final wishes form.  Next, I made an attempt to simplify my financial records. I said thank you to all the people who have been helping me the last few years. I had a garage sale. What the heck, I thought, I would be the one to get the money if I had one before I died. Just as I thought things were going to get worse, they were already terrible, I started coming out of the methotrexate fog.  I could think clearly again.  O happy days.  At least I had my mind.  Both cancers could return.  My RA could leave me immobilized.  Yet, I would be able to read.  My favorite thing to do.  Preston and Child’s Pendergast series. Baldacci’s adventures. All the fascinating medical books. I could be happy. The methotrexate injections, Plaquenil, leflunomide and the prednisone finally calmed the ever-present inflammation in my body.  This was after 2 years.  And it may not last long, but it is …

RA Progress, Thanks to medical research

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It was 1965 and time to do his urine test to determine  his insulin dose. He was diabetic. He followed procedure carefully.  He went into the bathroom and closed the door. He picked up his urinal and proceeded to fill it. He left the bathroom and handed the urinal to the nurse.  She took it into the bathroom. She dipped her measuring tape into her patient’s urine. She waited as it changed color. She held it up to the chart. A 2+. She went back to the nurses’ station and drew up the units of regular insulin designated for a 2+ test result. She administered the insulin to her patient.  Diabetic management in the 60s.  Blood glucose meters had not been invented yet. During that same time, there was not a lot of relief for rheumatoid arthritis. Prednisone was new. Methotrexate for RA and all the biologics were a long way into the future. RA  progressed relentlessly until a person was totally crippled and in constant pain. Death would be the only relief. Rheumatoid arthritis is still not an …

How an RA Book Helped

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When I was diagnosed with RA, I was too sick to understand the long term implications. I was grateful at the time to put a label on the devastating attack on my body. I love books and have always looked to books for solutions as well as for pleasure. Soon after my diagnosis, I purchased the book, The First Year Rheumatoid Arthritis by M.E.A. McNeil. With RA there is a major shift in your life. What to do? How to cope? What to think? It is overwhelming. This book set me on the right course. It helped me organize. The most important thing it did for me was define my attitude toward RA. I developed my medical team. I understood I was the manager. I started journaling daily and also logging in my symptoms. I researched the drugs I was on and created files for them. I researched lab tests and understood what they meant and kept a log. I asked my doctors questions and received solid answers. I knew the first few years were critical. I knew …

RA tools-Massage

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In the proper spirit of being the manager for my RA, I thought about what tool I could use to help manage my RA. Top on my list was massage:  Helps the pain-tense muscles to relax. Stimulates the lymphatics. And best of all is a thoroughly relaxing experience. Today I had an hour massage at ABQ Medical Massage Therapy. It was an Oncology Massage. I have several cancers as well as RA and they do open a few doors. The massage was given by Sean, a senior student. I was directed to a quiet room. Asked if the room temperature was okay. Offered water. And directed to disrobe to my comfort level. I go to my panties. Lay down on the table which was warm and cozy. Covered up with a sheet and a light blanket. When Sean returned, he adjusted my head pillow and placed a pillow under my knees. Quiet music. Sean worked his magic as he worked my body into relaxation. Peaceful bliss. I felt pampered and happy. When I was diagnosed …

RA: how to cope with more bad news

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RA: how to cope with more bad news   For 80%, RA will be a progressive disease. That means for those who are being drug managed, the drugs will eventually not work anymore. That means for those lucky enough to have remissions, their disease will flare and incrementally get worse. That means for those with constantly active inflammation, like myself, the disease will continue to get worse.                     This week my bad news is that my disease is getting worse                                                                           and there are no more magic pills.                                                                                       …

An RA life is doable: First year.

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This has been a roller coaster year for me. I was lucky in some ways with a sudden and severe onset. There was no question about my diagnosis. I searched and searched the internet looking for clues to my future. My RA is a bad case. I have no remission. All the little joints in my feet and in my hands have been swollen for 9 months. Now I wake up daily to the surprise of what joints will be more swollen and demanding attention that morning.  I like to start the day by getting all my little guys moving.  My joints love me for it. I feel better sooner. I make my coffee. Love freshly ground French roast beans. It is worth getting up just to have a cup. I feed Emma and Jimmy. Heat my heating pad in the micro. Take my first pill of the day after a blood sugar check. Settle into a warm back, hot coffee and my journal. Multitasking in a happy way. After the leisurely coffee ritual, a …