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Ramblings

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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.

Rheumatoid arthritis, the invisible disease

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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

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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.

Early RA symptoms- a book excerpt

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My book My Rheumatoid Arthritis Handbook is in the editing stage. Here is a description of early rheumatoid arthritis symptoms.

Pain

Pain is a hallmark of rheumatoid arthritis. Pain comes in many forms in the same person. It is sharp as the edge of broken glass. It is burning heat. It is a dull, nagging ache. It is incapacitating and it can be unrelenting. Pain may make movement difficult. It may make sitting still difficult. Sometimes it is excruciating. The proximal joints of the fingers, the knuckles, wrists, the toes, and joints in the feet are affected. The shoulders, elbows, knees, and ankles. The spine. The temporomandibular (jaw) joints. All are affected.

  • Pain may increase as the day wears on. Trouble is the pain is not in one spot. It usually encompasses many joints and soft tissue. The pain feels global.
  • Some RA pain comes from the pressure inflammatory swelling exerts within a joint.
  • Pain also comes from irritated nerves that have been affected by the proteins and chemicals that are released by inflammatory cells.
  • Pain can come from the ligaments and tendons affected by the joint inflammation.
  • Pain comes from bony erosions.
  • As you can see there are many sources and many types of  RA pain.

Fatigue

RA fatigue is unlike the fatigue associated with being tired. This fatigue is not relieved by rest. RA fatigue is immobilizing. It is overwhelming. It is as a result of inflammation in the body.  Cytokines, chemicals produced by the inflammation process, are a major factor in this profound fatigue. As inflammation is reduced, the overwhelming fatigue  may also be reduced. RA’s general feeling of being unwell, without energy is both biologic and genetic in origin.

Morning stiffness  

The bilateral stiffness seen in active RA is often worst in the morning. It may last one to two hours (or even the whole day). Stiffness for a long time in the morning is a clue that you may have RA since few other arthritic diseases behave this way. Stiffness may also occur after sitting or being inactive for an extended length of time. This phenomenon is called gelling.

Swelling

The inflammation in the joints may cause swellingto spill over into the surrounding tissue. Swelling is going to stretch against the joint capsule and against the skin. The pressure of the swelling will cause pain. Swelling may be more noticeable in the hands and the feet, but it can occur in any joint affected by RA.

Symmetric polyarthritis

The hallmark feature of RA is persistent symmetric polyarthritis that affects the hands and the feet. One joint or multiple joints may initially be involved. Joint involvement eventually becomes symmetrical. For example, the right wrist may be inflamed and in pain. Soon the left wrist joins in and hurts, too. Symmetrical joint involvement is characteristic of RA. 

Duration greater than 6 weeks  

Joint pain, tenderness, swelling, and stiffness continues for six weeks or longer in order to have a diagnosis of RA made.

Small joints

 Joint inflammation frequently begins in small joints. More than one joint is affected. The middle joints of your fingers, the joints that attach your fingers to your hands. Your wrists.   Your toes. The joints that attach your toes to your feet.

RA may start out or occur later in the following joints:  Knees, ankles, shoulders, elbows, hips, cervical spine, and the jaw. The little bones in the ear may also be affected. Every moveable joint in the body can be affected by RA.  As people age larger joints become affected.

Low grade temperature

A temperature between 99° (37.22°) and 100.5 F (38°C) is characteristic of inflammation.  A temperature over 100.5 F (38°C) is characteristic of infection. A low-grade temperature is common when the joints are inflamed.

Loss of appetite

People lose their appetite because the process of inflammation is so pervasive that their bodies lack the energy to process food. Additionally, those with RA just lose their appetites. Additionally, nausea is common both due to the inflammation process and due to the drugs used to treat RA.

Meatballs and Marinera

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There is a trade off for many of us between convenience and cost. Many of us with RA start thinking about this trade sooner than others. Unfortunately, those who have rheumatoid arthritis still have a high probability of becoming disabled over time despite the biologics. These drugs don’t stop the progression of RA. They just slow it down a bit.

My son loves meatballs and spaghetti. I looked around at ready made meatballs and found them surprisingly expensive. Instead I have an excellent recipe  of meatballs that I bake in the oven. Then I submerge then in a large jar of an excellent marinera. I let them slowly simmer in our instant pot until dinner.

My effort is limited to molding the meatballs. Both of my hands are deformed and clumsy but my pointers and thumbs work fine as well as my hands for gross effort. I can think of molding the meatballs as exercise for my hands. I used to make my own marinera but found a particular brand at Costco to be very good. So I modified my behavior without sacrificing quality.

There are times when my pain is incapacitating. Cooking is out of the question. I simply ask my son to cook dinner. He will always say yes. I make it easy for him by having a supply of meals that are easy to assemble. Plus he is our salad expert. He will make the salad to go along with our spaghetti and meatballs tonight.

We need to think of finding shortcuts as a creative enterprise. How we can live the best with less effort.  It is a necessary coping skill as our RA progresses.

I am fortunate to have a son who is more than willing to help me. He is not the mind reader we women expect of our menfolk. I doubt very much that many men are that intuitive.  I know all I have to do is ask. And that makes me feel very good.

Sleep and RA

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Those with RA need 10 hours sleep.

When I first read that those with RA needed nine or ten hours sleep a night, I laughed. Who would have the time to sleep that long? In the early years with RA, I struggled to get seven hours. Pain was a constant companion. Bed felt like a torture rack.  But I have learned over the last ten years that I do need more sleep. I also need more time in the morning to get functional.

My RA has never been as well controlled as some. More pain and more inflammation. Now my painful sleepless nights are relieved with a very good sedative. I have a good rest most nights. I also do not have any caffeine in the evening. I avoid stimulating stories or movies. I wear fuzzy sox to bed to keep my feet warm. I go to sleep with the gentile sound of rain on my Echo. My bed has a heated mattress pad

When I can’t sleep at night, it is because of a flare. My shoulders are badly damaged. When my body is inflamed, I have a hard time  finding a comfortable position. Actemra does keep me from being in a constant flare.

Sleep gives our body time to concentrate on repair and renewal. All those  minute chemical reactions that occur in our bodies can complete their cycles and restore equilibrium. With RA our bodies are stressed both physically and mentally. We need a lot more repair time.

When I wake up in the morning, I am stiff and in pain. I let Francis out. I pour a cup of coffee that my son has brewed. I spend a good hour reading the New York Times and sipping my coffee. And next I am ready to go through the process of dressing. As fellow RA people know, dressing is a challenge in itself.

A hospital visit

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I have returned after spending three days in the hospital. It started with feeling poorly. Progressed to vomiting. Then to a rapid heart rate and a low oxygen sat.

I had every test in the doctors diagnosis manual. Nothing specific. I have a strong heart and lungs that work. No new cancers in my abdomen. No interstitial lung disease. Two inflammation markers were normal. So Actemra is working on some level.

Hospital beds are awful. Especially in the ER. Nurses and doctors are very nice and competent. It was so cold the night nurses were wearing their ski jackets. There are a lot of wires and tubes. Hard to move around.

I had had two drug changes and the senior flu vaccine. I felt better when I came home. I did not have those drugs while in the hospital. So, in addition to having RA the composite led me to the hospital.

Very happy to be home with my son and with Francis. And with my warm bed. And no lights during the night. I have a doctor appointment and a PT appointment Monday. My leg wound is ready for the recumbent bike. So, I start today.

Do you have rheumatoid cachexia?

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My rheumatologist told me that cachexia is not common anymore. She is right but rheumatoid cachexia which is specific to RA is very common. We are made of water, but we are also made of chemical reactions numbering in the billions. With RA these endless chemical reactions are disrupted.

Do you have rheumatoid cachexia?

Surprisingly up to fifty percent of those with RA do have rheumatoid cachexia. About ten to twenty percent of those with well controlled RA still have rheumatoid cachexia.

You might say that you are overweight so couldn’t have it. However, in rheumatoid cachexia, muscle mass is replaced by fat. The muscle is disappearing and the fat is replacing it. Rheumatoid cachexia and obesity go hand in hand.

Rheumatoid Cachexia  is a condition where RA patients suffer

  • an accelerated loss of muscle mass ( increased whole body protein catabolism).
  • muscle mass replaced with fat.
  • reduced total energy expenditure
  • increased resting energy expenditure
  • Increased inflammatory cytokine production

Symptoms include

  • Decreased muscle mass.
  • Changes in muscle fiber.
  • Weakness.
  • Fat replaces muscle.
  • Muscle aches.
  • Diet that continues to have adequate protein intake
  • Reduced physical activity.
  • No energy

Why?

It is thought to be driven by cytokine dysregulation, hypermetabolism and protein degradation. Big words, I know. It means that our protein and our energy metabolism is disrupted by our body’s uncontrolled inflammatory response.

Prognosis

Loss of functional capacity accelerates morbidity and mortality.

Treatment

Getting rheumatoid arthritis under control is important to managing rheumatoid cachexia. Resistance training to build lean muscle mass. High protein, low carbohydrate anti-inflammatory diet. Fish oil. Methotrexate and biologics such as Actemra will help relieve rheumatoid cachexia.

End of the wound clinic. Enter Flare.

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Finally,  I graduated from the wound clinic. Fifteen weeks. My wound had been nine- and one-half inches. Three inches wide. Very deep. Now it is 5 inches long and one inch wide. When my accident happened, I knew the wound clinic at the VA was what I needed. They had the latest therapy for wounds  and the best qualified staff.

The nurses told me that when my wound was completely healed, it would only be at eighty percent. It will still be months before I reach the eighty percent.  It was a deep wound. The wound is at risk for popping open if I am not very careful about the leg swelling caused by backed up lymph. And I am to return to the clinic if it opens at all.

Our elections are winding down. The Democrats are mostly happy but the Republicans not so much. I think the country doesn’t really care  for radicals. Next on the calendar is Thanksgiving.  In America we are creatures of routine. We had a close call but now it’s time to move on to the next thing.

Unfortunately for me, I am in a bad flare. Pain level is 6-7. So it is bad. All my joints are inflamed. So in addition to pain, I feel sick. No energy. Tramadol works for my back and joint pain day to day. However, it doesn’t help enough with this kind of flare. So I am wallowing in my misery.

My diversion for today was the last episode of the Good Fight. I admire Christine Baranski. If we all could only age as well. Carmen was also a favorite. It ended well. Each of the characters going on to their next thing. And Trump running for reelection to keep them on their toes. It is still better to talk about this than the problems of pain management for those of us with rheumatoid arthritis.