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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 saddled with a serious disease you are still required to prove yourself.

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 Cannabis gummies. We are New Mexico. The cannabis reduces the inflammation in my body. It makes the whole thing manageable.

What creates a problem for me is the number of joints affected. Some days it feels like they all are inflamed. As you might imagine I use distraction a lot. The Phillies. Writing, Matilda and her Alien.

The saga of my kitchen I am determined to make healthy meals. Many days it is hard to do. My pain level and fatigue level increases as the day wears on. I tried the various freezer ready meals, but I did not like them. Sandwiches with a salad work as easy meals that I alternate with more substantial dishes.

 I have learned to accept my situation. That could mean resignation, which isn’t helpful, or it could mean no longer fighting and resisting.  It is  living within what there is to work with. Slowing down. Life can’t be the same as it was. It is not the same anymore. I finally get it.

My Garden  Now I understand why gardeners get angry with squirrels. I planted one tomato plant. It is a strong, healthy plant. Loaded with green tomatoes. I wondered how we would eat them all. I did have a two foot mesh barrier around my plant. I went out one day to water. The mesh was torn on one side. There was not one single tomato on my plant. There was no sign of ever having tomatoes.  The tomatoes are picked carefully from the vine. The squirrels must form an assembly line and pass each tomato from one to another to finally drop them all  into their burrows. Neat. Clean. No mess. One thing for sure is that squirrels do not share.

I keep planting rosemary. Fortunately, I love the fragrance and the squirrels don’t care for it. We are still in the high nineties. In August our night temperatures cool down and the daytime highs are not as severe. School has started. Time to plan Halloween costumes. And life goes on.

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. I have tried everything else. Methotrexate worked well with the biologics. However, I had a bad complication from Methotrexate and cannot take it ever again. Too bad. My pain level goes from  a daily three to a seven with a flare.

I have a medical card that lets me buy cannabis without tax and in higher concentrations. My primary doctor sent in my application. I buy WANA gummies.  This brand is produced to meet a high standard. Most of what I use has THC and CBD.  One also has CBG. A nighttime one also has CBN. I noticed right away that the long-standing inflammation in my body was reduced. It has made my life with RA bearable.

My mini cooper died. The motor. It was fourteen years, but it only had 36000 miles. My son now has a new car. Shiny red with all the current bells and whistles.  He is happy. I don’t drive anymore. I didn’t learn to drive until I was twenty-two. My family didn’t own a car. I don’t miss it. I am lucky to have someone to take me where I need to go.

Francis was laid up a bit with a bad back. The vet said it was caused when he would jump on my high, old French bed. First onto a low chair and then up on my bed and then in reverse. Not a big jump, but a jump, nonetheless.

We are Phillies fans. It is still number one but has been in a slump the last few weeks. Baseball amazes me. It is a numbers game. Who will win is anyone’s guess. We will always love our team.

Flares

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One of the worst things about rheumatoid arthritis(RA) is the inconsistency of flares. You may be working on a project either a  home or work project. You feel good. You think maybe your RA is on the mend. Could you possibly be cured?  Could your biologic be working so well? How about your weed?

Then you find out. You are hit like a hammer. You wake up in the morning. You start to move for another good day. Then you are whacked. Pain in your joints is sharp when you move. I have more than twenty joints inflamed. Probably closer to thirty screaming at me when I move. We move to the next day. Same pain. The inflammation makes me feel sick. It goes on and on.

The project is set aside while trying  to manage total  misery. More plans interrupted. It is hard to focus. Movie date cancelled.  The novel you are writing gets set aside. A new recipe goes unmade. The garden starts to droop. Life is put on hold.

It is discouraging. My biologic works about 20%. It doesn’t seem like much. I have tried going without. Twenty per cent  is significant. The gummy cannabis greatly reduces  the inflammation in my body. But the flares still come.

It is death by a thousand cuts. Life is being whittled away with pain. Life is being constantly interrupted. Frustrating..

Then it passes. I carry on with my novel. The bread gets made and the garden watered. Life is good again. Until the next time

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 it. I read what I had written. Good idea I thought. I am back writing but I am spending most of  my time on Matilda’s Bookstore.  It isnow up to 22000 words and developing as planned. I set aside three hours a day to write. My story may be corny. Maybe it is not. I am enjoying the process.

Matilda, anthropologist and ex-CIA, and bookstore owner meets Bertrand, a blue eyed, blond who tells her she is an alien like him called Bluestone from a planetcalled Solana in a galaxy near our milky way. They are mutant Bluestone. There is ten of them. And Cyrus Pettibone, a Bluestone from Solana, wants to destroy them.  They become involved in an adventure that involves traveling via portals,  and the magic of the mutant Bluestone. It is science fiction. And anything goes.

The severity of my RA has lessened. My cannabis is from a reputable dispensary in New Mexico. The dispensary is closely regulated as are the labs producing the cannabis gummies that I use.  I use a combination product that includes CBD, THC, and CBG for the day and CBD, THC, CBN and CBG for night.

There was a time when my flares were severe and almost daily. I found living to be difficult.  I feel the inflammation in my body to be decreased. I have aches but no more sharp pain. I am much better. I feel that I am getting my life back after eleven years of severe RA.  Microdosing gummies enabled me to use cannabis. As all the rumors say, cannabis does help rheumatoid arthritis. These rumors appear to be true.

I am also reading again. I am in the middle of Stephen King’s  book, On Writing. I love what he has to say and I love how he says it.

That is it for now. Keep in touch.

Adjusting to it all, AMD, RA and melanoma

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Last year I was found to have a large patch of melanoma on my back. After the biopsy, I had a long two incision surgery.  Shortly after that discovery I learned that my right eye had a dry macular degeneration. That quickly degraded into a wet macular degeneration. Previously,  my left eye had a hole in the macula. Surgery was no help. A preview of what will happen to the right eye. My RA continued to be painful despite inflammation relief I have from cannabis. There is no more relief from the biologics. They no longer work for me.

S o here I am in the next year. It took me eight months to adjust. I  will eventually be blind. Unable to read. Unable to recognize faces. Surgery. Scans. Body checks by student doctors. The new fear that comes with a new cancer. I am always reading about someone dying of melanoma. Now I have added  eye injections to my complicated mess.

Bob

It took a while, but I have finally made all the adjustments I have needed to carry on. It wasn’t easy, but it was necessary. I am back to feeling centered. Now I need to cut back on my activities. I thought of letting Bob, my sourdough starter go. But Bob is sturdy and I do Like my sourdough dinner rolls and my sourdough English muffins. Bob is a fixture of my kitchen counter.

The Phillies

 I decided to buy tomato plants rather than grow them from seed. Cutting back is not easy especially since I took up a new activity. I have become a Phillies’ baseball fan. My son and I watch every game we can see. I am amazed how arbitrary the games are. The players are having a good day or they are not. I enjoy the players, learning the rules and seeing the crazy things that happen.

I hope my visitors from China are not put off by my cannabis discussions. After all, remember cannabis was first  used in China centuries ago before anyone else. Historically, cannabis has been known to help  arthritis.

We are sunny with blue skies.  We have young roadrunners. Young quail. Chipmunks. Squirrels. Our roses look good. Spring.

The Phillies, Sickle Cell disease, My RA

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Philadelphia Phillies.

I have joined my son and am now a Phillies fan. He has his red hat. Francis has his Harper, 1st base, shirt. I will get a hat soon. We watch all the games that are not blacked out or are at an odd hour. Amazing how unpredictable the games are. A team will play well one day and poorly the next. Harper was out to have a baby and no one seemed to be able to play 1st Base like he could.

Sickle Cell disease

Sickle cell disease is a devastating disease associated with extreme relentless pain. There are about 100,000 people in the United States with sickle cell disease.

The new gene therapy has been approved with about 20,000 individuals eligible for the treatment. Unfortunately, the company doing the treatment can only care for about 100 patients a year. The treatment is complex and involves hospitalization and chemotherapy. Before this gene therapy there was no successful treatment. So this is a new frontier with promises of hope as the therapy is refined and improved.

Cannabis

President Biden is working to reduce the status of cannabis  from a category that lists a drug as dangerous and of no value to one that needs a prescription. The Senate is working to remove cannabis from the list it is on.

Currently the situation is confusing. Cannabis is legal for medical use in many states.  It is available for recreational use in an increasing number of states. If it is legal in your state, just remember to leave the gummies at home when you fly. Cannabis is illegal in federal facilities such as airplanes.

Cannabis or marijuana? Marijuana is simply the Mexican name for cannabis.

My rheumatoid arthritis

I have stopped taking Kevzara. It dipped below a 20% effectiveness. So, I am left with Medrol, Gabapentin, Tramadol and Cannabis.

  • When I start a bad flare, I take two extra Medrol tablets. The next day I feel fine.
  • I supplement the Tramadol with the Gabapentin.
  • The cannabis relieves much of my inflammation. Not the pain as much. My dose tolerance is still too low. I take about 50mg a day. I am building up my dose slowly to avoid being dizzy. It is working. I feel better.

Happy Spring

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Nothing like tulips to remind us that warmer weather is on its way. Albuquerque is warming up and once we reach May, we will be hot for the summer.

Yesterday we watched the second Phillies’ game. The day before we watched the first. Both games were with the Atlanta Braves. The Phillies lost both games. I attribute the first loss to wind. The second was just being out matched. We are loyal Phillie fans. We are hopeful that we will win today.

Cannabis continues to work for me. I take a combination of THC, CBD, and CBN. I am looking for inflammation reduction and pain relief. I still need the Tramadol, but less. I have given up on Kevzara. That was the last of the biologics for me. Low cannabis doses are the best for me. I don’t get high, but I have the result I need.

Combinations of THC and CBD are more effective than using either one alone. The companies I use list the ingredients on their packaging and include the warning to start low and go slow.

Happy Easter. It is a season special to the trio of religions that originated in the middle east. Have a wonderful time with your family.

Living with RA

My journey with cannabis

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Amazing how  opinions slowly adjust and change over a long and meandering length of time until the whole community has reversed its posture. I’m  thinking of cannabis,  of course.  Cannabis is legal in about 33 states. My state, New Mexico, has  made cannabis legal  both medically and recreationally.

I have a medical card. My primary doctor signed the  digital paperwork. I have rheumatoid arthritis, polymyalgia rheumatica and several cancers (5 now). Next day, my cannabis card arrived via email. It is good for three years.  I do not pay the 20% in tax, 12% cannabis tax and 8% sales tax. I can buy higher doses of cannabis. I can also grow my own up to six plants inside my house. As a veteran I also get a 15% discount.

I confess my only interest  is in the gummies as I don’t smoke, vape, or ingest the  drops. I microdose gummies.  The average gummy has 10 mg THC.  Some come as squares, and some come as triangles.  I use scissors  to cut them into  three or four pieces.  I  use 2.5mg-3.3mg at a time.                                        

It works wonders on the inflammation in my RA body. 

Inflammation is incapacitating and destructive. It is that elusive miserable feeling you get during a flare.  Unfortunately, although cannabis relieves my inflammation, it doesn’t help my pain as much. My dosage is probably too low. I am working to gradually increase my daily dosage. I also use more CBD, CBG, CBN with my THC. I use sativa during the day and indica after dinner.

Hybrid gummies are gaining ground. There are new choices like 1:1THC:CBD, 10 mg each, and WANA brand Sleep with 10mg CBD, 2mg CBN,2mg CBG, 2 mg THC and 1mg melatonin. It works.

In general, a customer would ask for Sativa that would help clear her mind for a productive day.  Originally, Sativa, a scrawny , sturdy plant from the Pakistan-Afghanistan area was given a botanical name. Or they might  ask for Indica, another botanical name, known as the one that will  put a you “ into the couch”. This is a  shorter fuller plant that may have originated in India or China. Maybe both.

Someone else might ask for a brand name product like WANA’s Strawberry Margaretta which is 10mg THC and 10mg CBD plus terpenes per gummy. It is a popular hybrid gummy.

My pain was really bad this morning. Glad it is Sunday. I have taken extra cannabis plus gabapentin. My shoulders are shot as well as my entire back. It is the back that scares me. The destruction starts with the first two cervical vertebrae. The first vertebrae is called the atlas and the second is called the axis. Classic RA.  And it works all the way down to the sacrum .I worry about losing my mobility.

So far so good. My morning pain slowly dissipates with time and extra help. I sit carefully and read the New York Times. And time goes by.

Pain de Mie

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Today I am making a Pain de Mie, a sandwich loaf made in a pullman loaf pan. It comes with a lid so the bread will have the same sides all around. It is a soft, dense bread just right for sandwiches. I made it once before. The lid popped off in the oven. The sides were even and yes, it was a good bread. I am making it again to see if I have the same luck.

It has taken a while to recover from the melanoma surgery. I spent four hours in nuclear med while doctors and techs looked for lymph glands. Next was a two phase surgery: one incision under my arm while I was on my back  and the second seven inch incision on my back while on my stomach. We arrived at 7 am and we left at 7 pm.

Now after a full body scan and another MRI, I am cancer free. I believe my particular body is bad at warding off new cancers, but it is very good about not allowing those new cancers to metastasize. Lucky me.

The body scan confirmed my additional autoimmune disease, polymyalgia rheumatica. All four shoulder joints and the joints in my pelvic girdle are damaged. The treatment is the same as I am on for R A, Kevzara and Medrol.

My cannabis program is working.

The first secret is to use gummies not to smoke it or vape. The second secret is to use very small amounts (2.5 mg) at a time. The third secret is to buy from a reputable dispensary with products from companies with excellent reputations for quality control. Also, you should have the approval of your doctor. He will be able to tell you if you have a medication conflict. All my docs are fine with cannabis, and I am on all the standard meds, cholesterol, BP etc.

Cannabis reduces the inflammation in my body, so I feel so much better. I use WANA, originally from Boulder and Wyld from Oregon. I buy them from Greenleaf Dispensary. I’m fortunate that New Mexico has a good system of monitoring its labs and dispensaries.

There is a lot of research in the works, but it is being done by the entrepreneurs who own these lucrative businesses. As soon as the federal government figures our how, it will legalize cannabis.  The taxes would fill treasury coffers. It is a matter of time.

The body scan also showed a lot of atherosclerosis throughout my body. Those with RA frequently die of heart disease. So it is wise to keep your blood pressure and cholesterol in check.

We have been living under a big cloud. Looking forward to having blue skies again.