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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 every single morning.  This endless routine is debilitating. It is discouraging. I have made no progress.

I am recovering from an infection. I had an endoscopy recently. I had red patches of H pylori in my lower esophagus, stomach wall and small intestine wall. I have had symptoms for eighteen months. I lost fifty pounds. I could not eat. Now I can eat Progresso Homestyle chicken soup, Special K, Honey-nut Cheerios, fruit-protein shakes, pudding, and lots of milk. Sounds like a lot. I can even eat dark chocolate.

We were very sorry to see our Phillies baseball team get beaten by the Dodgers. The Dodgers won the world series last year. They are still good.  The Toronto Blue Jays are exceptional as are the Brewers and the Mariners. My bet is on the Dodgers winning but the Blue Jays are good too. We will see.

I love writing. Funny thing is I never thought I could write well. My first book was on my hip replacement. It didn’t go well as I was laid up too long before I had the surgery. I was debilitated. Lucky, I lived through it. My second book was a  collection of articles on Rheumatoid Arthritis that I had published on my blog. My third book was Matilda and Her Alien, my first novel. A delightful surprise. It is the story of people from a nearby planet who were refugees of a corrupt government. Modern day people move through our culture un-noticed. No one would suspect the likelihood of aliens from another planet making their home on Earth. Surprise, they look like us.

I have started the second book about the BlueStone Colony. The stars will be Thomas, Professor John and Tess, a new character.

I have an opus I have written on rheumatoid arthritis. It just needs thorough editing and a cover. There is a lot to do. I am on a deadline. My macular degeneration is killing the rods and cones in my only functioning eye; The other eye has geographic atrophy. The central vision is gone. I lose cells every day. I can see the progression. I am taking a risk writing books instead of labeling all my stuff with big black lettering. I am a risk taker.  It is much more fun.

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 intestine. They were biopsied and found to be H. Pylori.  This is the bacteria that causes peptic ulcers and stomach cancer.

 I have had symptoms for 18 months. Mostly vague until this summer.  Some were attributed to RA but were caused by the bacteria. I endured a regimen  of tetracycline and another nasty medication that caused great discomfort. I can eat again. After considerable weight loss, my clothes are too big. My son says he wants to fatten me up. I hope I have seen the last of H. Pylori.

I have a book of my experiences and insight to rheumatoid arthritis. Living with Rheumatoid Arthritis is available on Amazon. Idid have more fun writing my first novel, Matilda and her Alien.  It is a story of love and adventure. A group of outcasts from a nearby planet settle on Earth in a colony in Minnesota. They travel by portal. No need of cars or airplanes. In book two the colonist will need to protect Earth from predatory aliens from deep space. Thomas finds love.

Journal, Cannabis and Tramadol

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Today was a good day for me. But first, the boring stuff. Let’s talk about the medical.  Since the VA had my Tramadol prescription, they require a urine test occasionally. My urine test came back positive for cannabinoids. So now my prescription has been cancelled. No one told me. No one asked about my pain status.  Lucky for me cannabis will either manage your pain or you will not actually care that you have it. The added bonus is that it reduces inflammation, an RA killer. Lucky for me every month I took the left over tramadol pills and put them in another container, enough to last a long time.  What I have been doing lately is take one tramadol in the morning and the two at dinner time. My RA is tough in the morning, but it can be tougher in the afternoon. Fortunately, I have just about gotten the dose correct.

My will is a work in progress with a visit to a lawyer next week. Today I got the deed. I have lists to make. And this is my week for lawyer things. My last will was with my husband.  Definitely, I need a new one.

So I got involved in this weeks work, I was late starting a beef stew I was planning. There were no potatoes so I decided I needed to make bread. All ingredients in the bread machine, plugged it in and I had no opportunity to change from a three hour setting to a quick bread. There  was no way to change the setting. Dinner was in an hour. After the mixing period, I worked the dough, added flour and molded rolls on a cookie sheet. When the oven reached 400 degrees, I baked them. Dinner had fresh bread with the stew plus a great salad made by my son. Amazingly all worked out, the stewl and the rolls. Satisfying.

In the US most of us think Zalinsky is a hero. He was a hero in the oval office, where Trump must of missed the rule about when having guests in your home. Makes is all look bad. The Oscars were fun. Well  done this year.  This was the first time the Oscars were streamed. Worked mostly.

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 five cancers and all their nasty treatments over the same number of years. Combine that with getting older, I suppose, I should feel lucky I can stand on my own two feet. I have always found that the sick feeling you get from the inflammation of many, many inflamed joints is often the worst feeling. Seronegative seems to have a lot more inflammation than seropositive. I may be wrong on that. Both are devastating diseases. They do change your life. I gave up on Kevzara. At  best it worked 20%, which is considered therapeutic by the drug companies.  I am left with the Medrol. Now cannabis.

This las month I tried adding the 1000 mg gummies. Whoa. Not in one gummy but in twenty. Still 25 mg is still too high for me. One half is 12.5mg. One quarter 6.25mg. Pretty good. Below 6.5, the size becomes to small to accurately measure. I have had a few afternoon high moments. Best to keep to the regular package of ten, 10 mg gummies.

So what do you do if you took more than expected, feel giddy, or have a new kind of feeling you are unsure of? The old expression is to ride it out.  Watch a movie and half way through it , you will have passed your uncomfortable moment.

I feel the 2.5mg at a time through the day is best. I like the Wana Passionfruit, which includes THC, CBD and CBG, for day. The WANA Island Punch, indica, is great  late afternoon. The WANA stay asleep, THC,CBD, CBN, and CBG,  is great at night.

If you are going to try cannabis in a state like New Mexico, go to a reputable dispensary. They are used to working with beginners and will steer you to something like gummies. The Wyld brand is a good bet too. I just prefer the WANA brand for myself.  Avoid smoking and vaping, since they are bad for you. I had to add that.

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 includes the total amount of cannabis which is usually 100mg and it lists the amount in each of the ten gummies which is 10mg. I also have a WANA box that has 1000 mg in the box and 25mg in each of twenty gummies. The gummy in this box is 2.5x stronger than the regular box. There is a very big difference. Low dose regularly. That way you are always covered.

Quality cannabis is much stronger than the cannabis of the old days. This cannabis is a new animal. The cannabis gummy is powerful, and it acts very differently than the cannabis that is smoked. Don’t let that stop you.

Ideally, a knowledgeable doctor should guide you through the process of using cannabis. Unfortunately, our doctors are absent on this matter also,

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 when I am having a flare I can take ten milligrams. It eliminates the pain. It reduces the inflammation. It still requires caution as I am still at the dizzy stage. Watching the news is about all I can handle for an hour. It reduces the inflammation which is very hard on the cardiovascular system. It relieves the pain. It requires patience while you work out a plan to wade into the world  of marijuana.  Smoking would be a simpler process. There are many more  strains available. Maybe cheaper. My lungs reject that idea.

High quality cannabis gummies are expensive when you use them every day. Different brands combine different formulas.  I have found the WANA brand helps me the best. For pain relief a combination of THC with CBD or CBG or CBN promises better relief. There are many choices and somewhere in those choices is a solution for you. Of course, living in a state like New Mexico where the cannabis industry is well established helps.

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 in Canada and various countries around the globe.

As time passed his peaceful world became unsettled with those who had the mutant BlueStone gene. Some moved to Earth. Many tried to hide their mutation, but eventually were caught and sent into slave labor on the planet Granville. Some were entered into a lab experiment that failed and turned them into big furry people instead.

Bertrand felt the need to save them all. In Matilda and Her Alien he establishes a secret colony on property he owns in Minnesota. He fall in love. He is a man with a good heart.

Early on he felt lonely on his vas property. So  he build his first android, Billy Boy. Besides his Android duties, Billy Boy became Bertrand’s friend. Bertrand believed the androids he created were touched by God and became human. They seemed to be. Billy Boy eventually became friends with Sally Ann. Bertrand made her so Billy Boy would not feel lonely in the remote cabin. Billy Boy did have a little pot belly as he liked to eat even though he didn’t need to. He wanted to have a baby like Matilda, but he wasn’t sure of the process. He and Sally Ann tried to figure it out. Bertrand felt they were on their own in this department.

Homer was Bertrand’s second android. It was Homer who helped build out the settlements and tunnel system. Together they planned and plotted. Most of the construction was done magically. Bertrand had learned a lot in his 800 years.

These are three characters in a story about refugees of another planet settling into life on a secret colony in Minnesota.

This is my distraction. Yours may be something else. I never ever thought I could write fiction. What is it that you wish for but don’t think you can do it? You know the maxim, “If you can think it, you can do it.” To help with RA it has to be something you are able to do physically, and it needs to command your full attention. I hope this helps. As tough as it seems for those of us with a disability, there is always hope for a better future.

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 progression of the disease. These medications work by suppressing a particular protein in our immune system. Different drugs suppress different proteins, but all the medications depress our bodies’ ability to fend off invaders.

 The number one complication of these medications is infection.

A depressed immune system means we are at high risk of developing infections. Possibly cancer.

What does this mean? It means that we need to take measures to avoid getting an infection. When we are in public, we need to wear a mask especially during flu season. We should avoid crowded gatherings. Unfortunately, it also means that we should avoid the company of someone while they are sick.  

During the holidays we want to spend time with those we love. But being around anyone who is sick puts us at high risk of becoming sick too. Family do not understand what being immune depressed means. And we can’t expect that they know. We need to ask about anyone being sick before agreeing to meet with them. We may worry about hurt feelings. Better hurt feelings that a dead you.

Holidays are tough in this regard. In the rest of the year, we will have situations where we need to decide if it is safe for us. Birthdays. Weddings. Parties. And the list goes on and on.  I talked to another immune compromised person today. Her extended family is not vaccinated. Two of them have covid. She was told not to worry as they will just stay in another room. It doesn’t work that way. Bacteria and viruses don’t stay where we want them to be. She decided to pass on the get together. She said, “I can’t risk it.” Smart.

So, we not only have to deal with the pain and disability of our disease, but we also have to tiptoe through what can be an emotional minefield. Risk or hurt feelings.

There are many people in our community who are immune compromised. There are many who are undergoing cancer treatment. There are many who have had organ transplants. There are all of us who have autoimmune diseases.

We expect the people we know to respect our situation. Yet so many people do not. They just don’t get it. Most people have few, if any, science classes.  Most know where their heart is and that is about all. They just do not understand what being immunocompromised means to a person. We need to learn to live with the attitude of others and we need to let go of the frustration.

Instead, we need to learn to protect ourselves. First it is best to be clear what that means for you.  That means determining what is safe for your health and acting accordingly. Masking in public. Avoiding  crowds. Checking to see that friends and family are well before agreeing to meet. That is called being proactive and that is called being good to yourself.

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 my plan works for me. I microdose the cannabis. I had started with a quarter of a ten milligram gummy. That is low dosing where I don’t experience any high. Now I can take five milligrams and ten in a flare. The cannabis doesn’t get rid of the pain but allows me to ignore it. It also reduces some of the inflammation. The trick of cannabis is to start super low and gradually build up. Think of the gummies as a medication, not a snack. The temptation is to eat a whole gummy because they taste good. That is a big mistake and why some elderly people end up in the ER. Cannabis is a solution for those of us who do not respond well to the biologics or who do not have enough relief so they can function well.

I am a big believer in the art of distraction. So in addition to RA, five different cancers and being cursed with a defective back, I have found writing fiction to be a satisfying way to spend time. Matilda and her Alien is my first novel. The story is about refugees from a nearby planet who  settle in a secret colony in Minnesota. It is easy to like them. They were ostracized on their own planet because they were different than the rest. They have superpowers. So I can lose myself in the lives of my characters with their loves and adventures as they create a new home for themselves on Earth. Hopeful.