All posts tagged: RA attitude

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 …

My take and my experiences

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Like many Americans, I have spent the last eight months in shock at the systematic destruction of our democracy. We are rapidly regressing into  a  corrupt dictatorship where a select few have rights. The rest become increasingly low wage workers with no rights.   No education. No healthcare. No meaningful work. No safety net. No vaccines. No scientific research. The new Dark Ages. We definitely need new leadership. I am speaking up now before we lose the rest of our liberty.  Remember our slogan from ourAmerican revolution, Give me liberty or give me death. Patrick Henry. We are Americans and we don’t want to go back to the stone ages. That said, let’s talk about rheumatoid arthritis. The health of my  joints has continued to decline. My complications from all inflammation include atherosclerosis and osteoporosis. Bad for the heart and the bones.. So far, RA treatment  addresses symptoms. The biologics  help those symptoms  for a limited time. Recently I had an endoscopy. There were red patches in the lining of my lower esophagus, stomach and small …

Journal entry 3.25

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When life hands you a bucket of sour grapes, you really don’t need to cry or get angry. You can if you find it helps.  But the older I get, I find there are just too many speed bumps along the way. And since I don’t really have as much energy,  I need to save my energy for things that make me  happy. Okay there is the occasion for anger, but best to keep it a memorable thing not a habit. Matilda and Her Alien have moved on to book two and the BlueStone Colony, The colony is growing.  Matilda and Bertrand have a new story. Thomas and Timothy rescue more of the college student experiment/ Big Furry People. We meet furry children  who are as cute as teddy bears.  Marigold and Tess are newcomers.  Rescue of the mutant BlueStone continues. The original sixteen babies start nursery school much to the delight of their teachers. Matilda and her Alien is now available in paperback. I have had rheumatoid arthritis for twelve years. I have also …

Day to Day with RA

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Today is a good day for me. The Kevzara stopped working. I retried low dose Methotrexate but immediately started having side effects. So, I stopped that too. I now depend on Medrol, Tramadol and Cannabis. Both the Medrol and the Cannabis are big helps. Titrating cannabis gummies can be tricky, but once you get used to it, it is the answer for now. I like taking 2.5 mg at a time. Low dose. Keeps the inflammation at bay. When I do have a bad flare, I up my cannabis dose accordingly and I stay in one place for a while. I have complete pain relief, but I don’t really care. It is nice. I use the WANA brand. The company started in Boulder but was sold to a Canadian company. Cannabis is legal in Canada as it is here in New Mexico. My primary doc signed off on the medical cannabis program. It saves but is also an access point for more potent cannabis. The WANA brand come in tight closing boxes. The normal label …

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 …

What is RA

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Those of us with rheumatoid arthritis have what is called a malfunctioning immune system. Big words. Simple. Complex  The job of the immune system is to protect us from infections and cancer. Ours doesn’t work the way it should.  For us, our bodies see the lining of all moveable joints,  synovial tissue,in our bodies as foreign. Our immune system reacts. Our neutrophils, which are plentiful in our joints already, change from a resting state into an active state. Neutrophils and other white blood cells from other parts of our body move into our joints. Inflammation ensues. Think about it. This inflammation can affect every joint in our body that is able to move. A lot of joints. Other people with autoimmune diseases such as Lupus, MS or Type One Diabetes have a similar fate. Their immune system malfunctions.  The target is different for each disease. The symptoms different. All are devastating. There is about one hundred autoimmune diseases. Today there is no cure for our rheumatoid arthritis. But there is medication that will slow the …

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 …

Spondylolistheses

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Spondylolisthesis  frequently occurs in the lower spine. A vertebrae is gradually pushed out of position. I had a spinal fusion years ago. The vertebrae above it was gradually pushed out of position. The classic symptom is not being able to stand without pain for more than ten minutes at a time. It can block nerves coming from the spine and cause paralysis and severe pain. I have pain in my lower back radiating to my left hip. Sometimes when getting up from a chair or getting out of a car my feet are numb and take a moment to have feeling  return. Additionally, I believe the murder suspect mentioned that he had trouble with sexual performance. Severe pain can be a problem. The slippage can also cause bowel or urinary problems. Physical therapy, over the counter NSAIDs are recommended (not for the elderly), rest, oral  steroids  and steroids injected into the back might help. Surgery is last resort. I take pain meds, steroids, and cannabis for my RA so these measures might help my back. …

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 …