All posts tagged: Rheumatoid arthritis

Adapt or Perish

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“It isn’t the strongest of the species which survives, neither the most intelligent, but rather that which adapts best to change.”  Charles Darwin He must have been talking about rheumatoid arthritis. The most difficult aspect of RA is its unpredictable nature. RA may be simmering.  Suddenly, without warning, a severe fatigue, an exhaustion so bad its immobilizing,  arrives to totally disrupt your day. New severe pain in your right foot makes walking impossible. The simmering pain becomes more than simmering and the constant hurting becomes discouraging. A drug that has worked so well stops working. A very short list of RA’s unpredictable nature. What to do? Adapt and survive. The number  one consideration is your attitude. You will need to come to the understanding that you have a chronic, progressive  illness. It is not going away. And YOU are in charge. You have the balancing act between controlling symptoms of RA and the side effects of medication. You know the importance of RA medication is to avoid crippling disability, which is guaranteed without proper medication. Consider …

Happy Thanksgiving

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I made my favorite cake this week. It is a cranberry spice bundt cake. Fresh cranberries. Cardamon. Ginger. Sour cream. It is a moist, flavor filled cake. I found it in the New York Times last year. It had previously been in a book on cakes. A dependable bake. Baking involves a series of specific procedures performed in a specific way. When is the cake done? Most of the time you can tell by looking at it. It looks done.  Now just to confirm my choice of doneness, I use a food thermometer. Cakes are usually done about 195⁰F to 200⁰F. Today is our Thanksgiving holiday in America. It is a family day. People fly and drive long distances to be with family. It is a day of too much food for many. Favorite family recipes. Storebought sides.  An aunt’s pumpkin pie recipe. The food is generally the same but people do rebel against the standard fare. Turkey, stuffing and mashed potatoes continue to be the standard fare. I have an excellent recipe for an …

RA and Heart Disease

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The number one cause of death for those with rheumatoid arthritis is cardiovascular in origin.The mortality rate for those with RA is 2.5 times what is normal for everyone else. The increased rate of cardiovascular disease (CVD) in those with RA is caused in part by accelerated atherosclerosis (hardening of the arteries) due to the chronic inflammation of RA. Atherosclerosis is the most common cardiovascular manifestation in RA. Inflammation is bad for the body. It causes damage. Early aggressive treatment for RA may reduce the inflammatory process and reduce the number of deaths due to atherosclerosis. Paradoxically in RA, a low BMI (less than 18.5) has been associated with a high CVD risk. RA doubles the risks of most heart related disorders including Those with RA have twice the risk of heart failure. The risk is higher in those with seropositive RA than  it is with those who are seronegative RA. RA patients do not have the typical signs of heart failure so they might be treated less aggressively than they need to be. Rheumatoid …

Cannabis at Eleven

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For about half of us the biologic medication of the last twenty-five years has been helpful in reducing symptoms and lessening disability. Methotrexate has been a big help. It is especially helpful when given in combination with the biologics. The JAK inhibitors can cause cancer. Since I have had five cancers, they are not advisable. It has been eleven years since my diagnosis. I have learned to live with my symptoms. I do know that it is important to keep moving. Sitting in your favorite chair reading a good romance novel or instead catching up with your broadcasts, or podcasts, is inviting. But it is still important to alternate physical motion with sitting in the easy chair. We all know how stiff we feel after sitting for a while. It is called gelling. I still have a bad flare that lasts a week once a month. There is not much I can do when my pain level is between a five and a seven. The inflammation level is high and makes me feel sick. I …

New Book and cannabis report

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I finally finished my book. I published it as a Kindle book. An adventure. A romance. Science fiction.  Matilda Finnegan meets up with an old acquaintance . A handsome six foot white hair, sexy  blue-green eyes charming man. Romance blooms. Adventure beckons. The story is about outcasts from a nearby planet finding refuge on Earth. Their obstacles and their romances.  Book website, Matilda and her Alien and place to buy,  Amazon Book site I have known about my rheumatoid arthritis for about eleven and a half years. A little more. Despite Kevzara, steroids and cannabis, I still have a week long severe flare at least once a month. The flares are bad. Most of the moveable joints in my body are affected. All but my knees. Strange ads that seems. However, flares  are still better than what they were. The inflammation  is reduced. My RA seems to simmer the rest of the time. Not good but better than it was. I am on the last biologic left to me. I either have tried them or …

The Cruel side effect of Flares

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A side effect of having flares is their random quality. One day a person with RA may be out dancing with the girls. The next week she may not able to join them because she is not well. Repeat. And then repeat. Is she neurotic? Her friends may be thinking. They stop asking her to go with them. Another young mother with RA  may ask her husband or her mother to help more with the children when she is having a flare that puts her flat. She was able to explain the severe and random nature of rheumatoid arthritis flares. Her husband and her mother had come to understand the severe and random nature of RA and were happy to help her more when she needed it. So, this is what a person with RA has to deal with.  You may be spending a large share of your time in severe pain. You may have serious doubts about your future. People will still look at you and say you look healthy to them.  And although …

August Journal

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I watched the last night of the Democratic convention. Vice-President Harris is a surprise.  For the last three years she has been the quiet figure standing near President Biden when he speaks. No more. She is a breath of fresh air. She is strong. There is no doubt what her agenda will be. This is my summer of learning about baseball. They do have a lot of little rules and it is about the numbers. We are Phillies fans. Through thick and thin. My favorites are Straum, a toe tapping relief pitcher, Castellanos, right fielder and dependable hitter, and Stubbs, relief catcher, energized team player. I like them because they all are characters and all are solid team players. My rheumatoid arthritis(RA) is about the same. The medical establishment offers me little at this point. I am still on Kevzara which helps up to twenty percent. I am on a low dose steroid, Medrol. My pain levels range from four to seven on a scale of one to ten. I supplement my medical treatment with …

A book of fiction and fun

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I am in the process of writing my first novel. It is called Matilda and her Alien. Matilda owns a bookstore. One day a man mysteriously appears in her store to say that he is an alien,  she is an alien, and they are at risk of being murdered, by men from another planet. It is fairly easy to believe him. Bertrand. Handsome. Charming. Twinkling blue eyes. Then , of course, she had met him years ago.  Their adventures span the globe as well as nearby planets. There are many colorful characters. Ahmed, Baghdad interpreter, Dr John, a South African trauma surgeon, Isabella, the Santa Fe psychic, and places like Solana, Granville, Albuquerque and Minnesota. Will they be able to save their fellow mutant BlueStone from slave labor and death? I am having a lot of fun writing this book. It is a lot more fun to write than non-fiction. I continue on the biologic, Kevzara, for my RA, plus low dose Medrol (6mg daily). I can take more of the Medrol when I have flares. …

Writing and RA

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About six months ago I fell into a writer’s block. I could not read another article on rheumatoid arthritis or write another article about living with it  I continued to read my Danial Silva novels, and as time passed I let Bob, my sourdough starter, pass into sourdough heaven. Who knows why what did happen. But I changed. Yes, I did. I watched the world series with my son. I was totally amazed at how unpredictable a game of baseball played out. It was fun. I love the Phillies. I joined my son and became a Phillies fan. We watch all the Phillies games that we can. I know all the players. Bryce Harper, first base, JT catcher, Bohm and home runs. All the players are great. Last night’s game was exciting. The Phillies were behind. Bohm finally  tied the game and Castellanos made the winning play in the tenth inning. Wow! Seven years ago I wrote a  10,000 word start to a novel. I put it away. I decided to take another look at …