All posts tagged: RA

October Journal

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It is tough to be stuck. It seems like it has been going on all year for me. No breakthroughs. No new ideas. It is more the need to cope with a lot of stuff.  Too much stuff for this old brain. My rheumatoid arthritis is not any better. I’ve been on most of the biologic wonder drugs. The most they can do for me is to reduce symptoms by 20%. It probably is better than nothing.  Twenty per cent is considered therapeutic by the medical profession.  I doubt any of the drug gurus have had rheumatoid arthritis. I assume they are just robots. So, there are no new practical advances in managing RA. I doubt most of us would want to have electronics placed in our brain or to have gizmos attached to our blood vessels. They need to come up with something less invasive.   I continue my journey with regular flares. When I leave the comfort of a night’s sleep and start moving for the day, I am in pain. It is …

The complexity of using cannabis

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Francis is having his early morning nap atop my pillows. The pigeons are busy raiding the bird feeder. I’ve had my morning cup of Starbucks French Roast. Now for  the RA news. The good and the bad. Cannabis for rheumatoid arthritis is a mixed bag. Two days ago I had one of  the worst flares I’ve had in a while. The good side of cannabis is that it will take  away the pain and the inflammation of RA.  In order to do so the dose needs to be high enough. For me that is ten milligrams  which is in a regular  gummy or one eighth a gummy at fifty milligrams in the thousand milligram package. Another issue of using cannabis for RA is the complexity of using cannabis gummies. The first time I tried cannabis I became dizzy.  I recently had a hip replacement and I did not want to fall. I stopped using it. The next time I tried it, I microdosed and it worked. As I built tolerance I  increased my dose. Now …

Distraction and Bertrand

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The best thing for the relentless pain of RA has been distraction. Once, my distraction had been done managing a  sourdough starter. Then it was hydroponics. Tomatoes and oregano grow very well. Lately, my distraction  has been writing fiction. I love my characters. Even the bad guys aren’t so bad with the exception of Cyrus Pettibone. The development of the characters for my series Matilda and Her Alien and the sequel The BlueStone Colony has kept me occupied. Bertrand and Billy Boy come to mind when I think favorites. Bertrand is an amazing man. He is about 800 years old, but he looks about 35. He was born on Solana with a mutant BlueStone gene. He grew to be a lover of country and adventure. He spent time on the other planets in Solana’s galaxy. But his favorite was to visit Earth. He loved Starbucks French Roast Coffee and the American mid-west. He loved the trees and lakes of what would become Wisconsin and Minnesota. He bought sizable properties in those states as well as …

A new Christmas tree, Cannabis and the art of Distraction

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We replaced our aging Christmas tree this year. It was a great tree. I wanted to replace it with a new version of the old tree. I found the one I wanted and ordered it on Amazon. Then I spent several days worrying about what I was going to get. All for naught. My son unpacked what is a perfect tree. It is almost eight feet and slender. Perfect in its spot. I have a favorite box of decorations that I enjoy putting on the tree. Some old favorites. A little red train from my eldest’s first Christmas. Origami from my middle son. Several school projects from my young er son. Decorations from old friends. Some newer. I like to add a new one or two every year. I love the lights and all those happy memories in a glittering reminder of a life well lived. I saw my rheumatologist recently.  I actually looked the best she has seen. A testament to Medrol and WANA cannabis.  I think she is coming to the conclusion that …

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 …

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 …

Diagnosing rheumatoid arthritis

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Once a person has at least one joint that is painful and inflamed, a rheumatologist can use a ten point check to help diagnose rheumatoid arthritis (RA). The assessment covers four areas: joint involvement, serology, acute phase reactants plus duration of symptoms. There is a total of ten points. A score of six confirms a diagnosis of rheumatoid arthritis. Here is how it breaks down. Choose one from each group and total.. A. Joint involvementOne large joint 0 points2-10 large joints 1 point1-3 small joints 2 points4-10 small joints 3 pointsGreater than 10 joints including at least one small joint 5 points B. Serology (blood tests)Negative RF and negative ACPA 0Low positive RF or low positive ACPA 2High positive RF or high positive ACPA 3 C. Acute phase reactants(inflammation blood tests)Normal CRP and normal ESR 0Abnormal CRP or abnormal ERS 1 D. Duration of symptoms< 6 weeks 0 6 weeks 1 My choices are a total of 7. Note I am seronegative, and it took a lot of joint involvement to get a positive diagnosis. …

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 …