Author: Mary Mann

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RA Journal Progression

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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 …

Rheumatoid Arthritis Eyes

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 Most of us who have had RA for a while understand that Plaquenil (hydroxychloroquine) puts us at risk for eye damage. If we do take Plaquenil, we understand that the danger of eye damage is small. That is what we seem to need to know and that is all we are told about RA and our eyes.  We are not being told that by having RA, we are at risk of having eye damage and should have our eyes checked on a regular basis. We do know that the same inflammation that causes pain and swelling in the lining of our joints courses through our veins damaging the lining of blood vessels and our heart even when our cholesterol profile is perfect. We understand that and we try to keep ourselves heart healthy in every way that we can. What no one mentions is that this same inflammation that affects our joint lining and affects our heart and our blood vessels also affects our eyes. This inflammation can cause permanent damage if we are not …

Managing RA

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I am an optimist. But I am also a realist. When faced with a painful situation, I sometimes  dance around the issue for a few turns. Then, painful, or not, I face whatever it is,  deal with it and then do my best to move on. Stiff upper lip and all that. Each time I was diagnosed with a new cancer I did just that. I never once thought why me. I had the surgery, the chemo, the radiation. Suffered through it. Recovered for the most part and moved on. I felt that none of those three cancers would ever return as the treatments were brutal to my body and left nothing unaffected. My method of handling problems worked with cancer. Then I was diagnosed with rheumatoid arthritis almost eight years ago. RA is a painful, debilitating and a  lifelong disease. It is a disease that must be dealt with daily. RA will not go away just because I am weary of living with it. It is forever. It is not a problem to be …

Morning time/Evening time with RA

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I have figured out how to reduce the morning stiffness and pain of my RA. I do two things. First, I take pain medication. I wake up in the early morning to use the restroom. At that time, I take a dose of my pain medication. Before I go to bed, I put a dose in a little bowl on my night table. It is easy to access and I will know whether or not I had taken it.  Then I go back to sleep for about an hour or so. It relieves me of the pain that saturates my body in the morning. I no longer feel discouraged. I am ready for my day. The second thing I do is read the paper while I have my freshly brewed Starbucks French Roast. I have time to center myself as I work out the nighttime kinks.  I read the New York Times on my Kindle. I have a cover for my Kindle that also acts a stand for it (something like a picture frame easel). …

RA flares without the biologics

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I am living through my days without methotrexate. I am not on any of the biologics. Hydroxychloroquine is no help and has been set aside. At first, I felt left alone in the world without armor.  Would a flare become so severe that I would spiral down and down into total pain and immobility as I had in 2013? That was my fear. For years, a low level of pain humming in the background has kept me company. I have a degenerating spine. There are long fancy words for what has attacked my spine. Plainly said, I have a bad back. I could say I inherited it  from my dad. I am accustomed to pain. Now I have RA. Over the years I have learned to ignore the humming pain. However, there is a tipping point after the start of a flare where something needs to be done. As a flare starts  pain grows louder in the small joints in my feet. The rest of my feet ache. My left ankle develops sharp pain making …

Lockdown Update

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We are still locked down. We go to Costco and to Smiths. We travel out with our masks and our hand sanitizers. Those we meet are friendly and have smiling eyes behind their masks. If a person depended on reading lips to understand another, they are currently out of luck. Who would have guessed? Certainly not last September. Life changes so quickly. My garden is winding down. The squirrels are fat and happy after eating my tomatoes. The roadrunner couple I saw having sex in my back yard now have healthy teenagers who are as aggressive about eating birds as their parents. Our quail population is booming. They love quail blocks and nest along side the squirrels on a little used side of my property. I make bread every couple of days. I have many recipes for rye bread, but rye flour is now unattainable. Not enough planted by the farmers for the current demand. I also make a lot of oatmeal bread. Lucky for me. I make my own buns for bratwurst. I also …

At home with RA March 2020

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We live in Albuquerque. Sunny day. Tomato plants outgrowing their nursery. Pantry is stocked as usual and our internet is dependable. Doctor appointments are via phone. Trips to the grocery store are carefully planned. There is no bread flour or other baking supplies on the grocery shelves. Eggs can be hard to get. There is no food in Amazon’s Pantry.  We are on lockdown. Yet we still count ourselves as lucky people. We do not have the virus. No one in our family has the virus. Francis, our little cockapoo , is healthy. Our pantry shelves are stocked. Our income, at this moment, is as it should be. Our home is safe. We are lucky. I have rheumatoid arthritis. Recently I had to stop taking my RA meds, methotrexate and hydroxychloroquine as  two of my cancer docs said to stop. I had developed necrotic, infected tissue from breast cancer radiation treatment. This infection  started in October. I had a partial mastectomy in December followed by a severe cellulitis. Now after months of treatment at the …

No more methotrexate

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RA Dilemma Number Five There is another dilemma to face when you have rheumatoid arthritis. I was surprised by this one. After all, I have had RA for seven years and feel I have covered a lot of ground in that time. I know infection posed  a very high risk while taking RA meds. My mind thought flu or maybe pneumonia. This one started five months ago. Suddenly and out of the blue, my right breast developed a lesion and stated to drain. I felt feverish and went to see my oncologist who sent me to the breast surgeon oncologist down the hall because she was the one who had the ultrasound machine. She came in, introduced herself and looked at my lesion. She instantly knew that it was caused by necrotic breast tissue due to radiation for breast cancer. The radiated tissue gradually degenerates, expands until it pushes through the delicate breast skin and drains. It cultured positive and I was sent to the wound clinic. Eventually, it was determined that the only solution …

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 …

Surviving Food, Nutrition and RA

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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 …