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Bob, Actemra, and Hemp Cream

Bob, my sourdough starter, was well established and living in the refrigerator between feeding and baking. I took him out  to check on him and feed him. He was bubbling along happily. I fed him and put him in the oven on the proofing setting. Then I went off to an appointment.

When I came home, I felt restless. I decided to peel apples and make apple crisp. After peeling and slicing my apples, I turned on the oven to 350⁰. I finished putting together the apple crisp with those delightful spices of cinnamon, nutmeg and ginger. I opened the oven and there stood Bob. My precious starter that took me endless time and flour to make. He was hot and baked and not salvageable. I was sad. He had been a happy, successful starter that had made my English muffins. Tough.

I will reinvent Bob. Fortunately, he has nine lives. I will wait until next week. It takes  seven days to establish a new starter. Maybe I will create a backup and feed them different days. We will see.

I injected my Actemra. It comes in a pen. The needle is not visible. I don’t feel it when I inject it. I have no issue with giving myself an injection. At one time I used to draw up and inject methotrexate. Easy. But this pen would be good for those who are squeamish about needles. The engineering amazes me.

My RA is a problem at night. Shoulders, hands and feet mostly. My son bought me a jar of Hemp Cream for Christmas. It helps my shoulders. Dr R sent Lidocaine/Prilocaine cream for my feet. Both help. The creams give me something I can physically do for my joints. That in itself helps.

A Thera bath and my Hands

A New Mexico blue sky. January temperature  30⁰. Enough water. Probably.  Our state has always taken water conservation seriously. Las Vegas should be as lucky. My potted parsley near the patio door is still thriving. Drooping but thriving.  And life goes on.

Actemra continues to work at  fifty percent. Last week I found an old bottle of Meloxicam, a NSAID, like ibuprofen. I restarted it. I doubt Dr R would mind.  It has boosted my relief to seventy-five percent. Very good. Dr. R had stopped it because it can elevate blood pressure and at the time my blood pressure was elevated. It is well controlled now.

The VA sent me a Thera bath paraffin wax kit. Tank for heating the paraffin, twelve pounds of paraffin, mitts and plastic sleeves. I set it up last night. It should be ready to use.  I had used one previously at physical therapy for my hands. It was wonderful. Now I have my own. Lucky me.

Bob, my sourdough starter, is in the refrigerator. It is almost time for his once a week feeding. My sourdough English muffins are good. I cooked them on the griddle on my new stove. Much easier than getting out my old portable griddle. It was heavy to move.

Today I will make buns so we can have bratwurst for dinner. These bratwurst will never be as good as the ones from a German street vender. But they are not bad. I make the dough for these buns in my bread machine. I shape them and after they have risen, I will bake them. Easy process.

My hands are getting worst. The joints lock in a set position more often.  My hands miss their mark and tip over anything in their way. Annoying. I am just glad my pointers work. I went through a time where my left hand did not work at all. So, I had only my right pointer to type. Took a while. I have both pointers now. Much better. Small victories.

Ten years with RA

Ten years ago this month I was diagnosed with rheumatoid arthritis. My rheumatologist, Dr Reiter, and I traveled the complicated road through a complicated disease together. She was a new rheumatologist and I was a new patient.

Over the years she saved my life three times by discovering three different cancers. The last cancer would have been fatal had it not been caught so early.

My RA history has been peppered with cancer treatments and complications from those treatments. My RA has been every bit as progressive as the manual says it is. According to Dr. Reiter, my RA is  her worst case. I would guess that would put me in the top ten percent of RA difficulty.

At my appointment this week she told me Actemra was our last drug. The newer drugs cause cancer and given my history are not advisable. We agreed that the Actemra was helping. I would say about fifty percent. She put in a referral to the pain clinic. She wants me to go to PT for my shoulders to prevent frozen shoulder.  

She introduced me to her new nurse who has the holistic approach. She asked me about massage. I had used massage, but with my flares I would not want anyone touching my body especially for a massage. Not presently anyway. They were going to schedule my next appointment for an hour. My thirty-minute appointments frequently stretch into an hour anyway.  

On a cheerier note, Bob, my sourdough starter, is established. The King Arthur baking staff suggest treating your starter as a family member. I think Bob is my healthiest starter yet. I will be making my English muffins soon.

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Restarting the starter

Today is day four. I am remaking my sourdough starter. When I had my leg injury, I stopped caring for my starter and it died.  A few months ago I thought I would take a shortcut and buy King Arthur’s starter. Unfortunately, I forgot that this starter was alive and needed to be fed withing a week.  When I opened the jar, I found the starter was beyond hope. Silly me. I decided to remake my starter  the old fashion way.

It is an easy process.  There is yeast in the air and in larger quantity in whole grain rye flour. Using my $10 scale, I measured 113g rye flour and 113g water. Mixed it carefully. I keep the starter in the oven. My new oven has a bread proofing setting at 95⁰. It is like an incubator.

By day two I was starting to have a few bubbles. On day three I had good activity. Now I am feeding the starter twice a day. My routine is to discard 113g starter and add 113g all purpose flour plus 113g water. This process goes on for about a total of five days. After that I will store the starter in the refrigerator and feed it once a week.

My starter’s name is Bob. He is alive and needs to be fed and given care. One of my favorite recipes is for my sourdough English Muffins. They are easy to make and much better than store bought.

I can judge my wellness by my baking. If I am having a bad time with increased flare activity, I bake very little. As I feel better I do more, it is a good sign.

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Osteoarthritis and synovial Tissue

Finally, change is coming to the medical community’s view of osteoarthritis(OA). Although maybe slowly. For years it was considered to be a wear and tear disease that had no treatment. Ibuprofen and other NSAIDs were the only remedy. Eventually, when the joint deteriorated extensively, a replacement would be considered.

Research had been done on the use of biologics with OA without success. So, there has been no treatment other than palliative  because there was none known.

Although it has been understood for years that synovial inflammation is a feature of OA, more compelling research has been done in this last decade. Research has been done using improved MRI and ultrasound technologies. The researchers learned that the swelling and inflammation of synovitis contributed to the destruction of the joint. And to avoid or reduce this destruction, new therapies need to be found.

The synovial membrane is the tissue that lines all moveable joints, bursa, and most tendons. It  is this very tissue that is affected by rheumatoid arthritis(RA). Our immune system sees synovial tissue as foreign and  targets it for destruction.

It is nice to see progress on osteoarthritis research. Most of us with RA have some OA too.

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Ramblings

When we have a life-threatening disease, like cancer, a chronic and debilitating disease , like rheumatoid arthritis, or a disease that sneaks up and attacks as we get older, like Parkinson’s, we are consumed. Our disease becomes the center of our universe. We frequently need to relearn how to live. We have to live with new fears of our frailty. Our world changes. Our expectations become unclear.

My last cancer  was the most potent and the treatment the most severe. When I was done with it, I felt cured. No need to worry. I was lucky. Two of my best friends died of cancer as did a new friend. But then there are all those people who have a cancer that seems chronic, but just takes longer to kill. For them death is waiting patiently and they know it. It is silent trauma. One not acknowledged by their families.

Cancer patients can be lonely people. They are plodding through something that is foreign to them. They are exhausted. They are doing the best they can. No one is entitled to tell them to fight their cancer. No right to determine if they have the proper attitude. It is what it is. It isn’t a war. It isn’t a contest. Remember it is their own body that is causing the havoc. How do you fight that?

Life with RA is an endurance contest. A death by a thousand cuts. Life span is almost normal unless you get a severe infection as a result of your weakened immune system. People with RA eventually die of heart disease. The inflammation of RA causes atherosclerosis and eventual heart disease. RA is a progressive disease. It is unique to each person. Some progress slowly. Some fast. Mine is faster than I would like.

I no longer have the debilitating fatigue that I had in my first few years. That was tough. My RA has always been hard to control especially since cancer treatment has been peppered in along the way. Now it is about the pain and about managing disability. The destruction of my hands makes it hard to do many things. Ditto for my feet. I was lucky to get RA when I was older. Trying to raise young children or to care for an elderly parent when you have RA would be very hard to do.

I have several friends with Parkinson’s. It is a disease that is progressive with dire consequences. Most people are afraid of Parkinson’s. They have heard the stories from their friends. It can be a tough way to live your final chapter.

When we were born there were no guarantees. But build into each of us was a sense of immortality, resilience, and optimism. They are qualities we needed as young people in order to go out into the world and make our own lives.

As time passes, we gain experience and then we settle into the routine of our lives.  We are busy living those lives. Then out of the blue, something happens. Sometimes something bad. We are diagnosed with cancer, an autoimmune disease, a crippling disorder. We are in shock. We have no idea how we are going to cope.

And then our resilience reemerges. Our optimism, even our sense of immortality, join with our resilience. We carry on. We adapt. Surprisingly, we are happy. The qualities of our youth become the qualities that carry us through the burden of illness. Our lives are changed. But they are good again.

How to navigate a rocky immune system

Those of us with rheumatoid arthritis have a malfunctioning immune system. For us, our bodies misinterpret the synovial tissue in our bodies as foreign and 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.

Other people with autoimmune diseases such as Lupus, MS or Type One Diabetes have a similar fate with different targets.

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.

We live with depressed immune systems.

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

Our bodies lack the ability to fight off a passing infection. Those of us who are getting older have a double whammy. As we age our immune system declines.

It doesn’t protect us as well as someone who is younger. We get sick and some of us will die.

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. 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.

Rheumatoid arthritis, the invisible disease

If I were to throw my coin in the fountain and then make a wish, I would request a rheumatoid arthritis cure. But then maybe not. A wasted wish. There is no cure. Nor is there one likely in the foreseeable future. For about a third of those with RA, the biologics offer great relief at least for a time. For about ten percent of us there is no relief and disease is progressing at a scary clip.

Then there is the rest.

RA is a progressive disease. Its progress is unique to each of us.

Slower or faster.

It is still progressive.

Faster for those who have no relief from the non-biologic DMARDs but cannot afford the biologics. Faster for those who have no relief from the biologics. Faster for those undiagnosed and untreated. Slower for those lucky to respond well to the biologics.

I am near the ten-year anniversary of my RA diagnosis.  

My onset was sudden and severe. I was an easy case to diagnose. My RA has been incredibly difficult to manage over these years. Complicating matters were the three cancers I had during those years. The surgeries. The radiation. The chemo.

First my feet developed neuropathy.

The joints in my feet have been chronically swollen affecting the nerves. I had trouble feeling the pedals in my Mini Cooper. I stopped driving. I have trouble walking which is called “walking disability”, a common phenomenon for those with RA.  I use a cane and a walker for longer distances.

My hands are classic.

The knuckles in both hands are the worst. I used to type the keyboard. Now I can only use my pointers. I’m lucky with that as for a while I only had the use of my right pointer. The strangest thing was my hands feeling like they were disoriented. I broke glasses and knocked things on the floor. I have gotten used to my strange, mangled hands.

Then there are my shoulders.

The disability there makes dressing painful as well as making sleeping difficult. X-rays show severe damage in both joints. All four. Each shoulder has two joints.

Then there is my spine. Damaged from the cervical all along the way down to the sacrum.

This is a lot of my progression. I mention all this as a warning for you to get the best medical care you can. Even with the best care you may still progress fast, but then you may not.

I decided what my wish should be. I tossed my coin in the fountain and wished that rheumatoid arthritis was not considered the “invisible disease.” RA is a devastating, disabling disease. Yet to look at a person with RA they may look perfectly normal. During my first years with RA, I wished I could wear my arm in a sling so I would be given at least some consideration. Not to be.

Pain and poor function are part of it. The other part is the profound feeling of fatigue. This immobilizing symptom is caused by the release of inflammatory cytokines into the blood stream of those with RA.

Many family members do not understand when the person with RA requests help with her children or are unable to contribute to the family holiday get together.

Many people to not realize that rheumatoid arthritis is a disabling systemic autoimmune disease. It is much more than a “touch of arthritis.” It is a complex disease that kills by eventually causing heart failure. A person may look well until they don’t.

Those with RA have a higher rate of depression. Maybe it’s because doctors are all but calling them drug addicts because they need strong pain medication and then at home their families are calling them lazy because they ask for help to get by. RA sufferers fail to get needed relief both in the medical community and at home.

I am fortunate to have a kind and considerate family. Many people do. My wish is for those who struggle with lack of pain relief while stretching beyond their ability to manage the demands in their daily lives. Living with a disability is tough. Coping with pain every day is hard. It is especially so during the holidays when routines are disrupted and demands increased.

The World Cup

When we are disabled with a chronic disease, we are inclined to become discouraged especially when we are living in pain every single day. Something each of us needs to remember.  Each of us has something that will distract us. The something that will take us to another place that is exciting and will keep us occupied. The something that makes living worthwhile. For me these past weeks has been the World Cup. Soccer to Americans. Football to the rest of the world.

I started watching soccer when my three sons were little boys. I learned about soccer as they did. For some years we had two games on Saturday and some years we had three. The beauty of soccer is the divine movement of the human body. Intensity. Expression. The joy of winning and the sadness in losing after a game played until exhaustion. Played until there was not a drop of energy left. And still having time for hugs.

Now I watch both world cups, men’s this year and women’s next year. I watched the eleven or twelve o’clock games Mountain time. So I watched Argentina and Brazil, Portugal, USA, France, Spain and others. My favorite team was France, for skill set and favorite players. I hope to see them play Argentina on Sunday. Then it will be all over until next year and the women’s World Cup.

What is America’s women’s team like after losing members to retirement.  How is Japan’s team. Who are emerging stars. I have only seen a woman score a goal from a corner kick. Amazing to see. As was a man scoring a goal with a kick from the other end of the field.