My Journey Through The Battlefields of Rheumatoid Arthritis & COVID

 My Journey Through The Battlefields of Rheumatoid Arthritis & COVID

My journey began mid November 2019 at the age of 70. I was camping in Baja Mexico on my usual 5 month surfing trip. I noticed one day that my hands were feeling a little different than usual.  I was getting ready to go surfing but having a little difficulty putting on my wetsuit. After getting my wetsuit on I began putting on my booties and realized that I was having a fair amount of difficulty grabbing my booties and sliding them on.  I was having pain and a lack of grip strength in my hands.

For the rest of my trip things began to slowly get worse. I workout regularly with weights and realized I was starting to have a fair amount of pain in my hands and wrists after my Baja trip ended in January.  I was now into the month of February and back home in San Diego. At this time I was beginning to enter some Ultra Marathons. My wife Roberta is an Ultra Runner and we thought it would be fun  to do a few of these together.  At this time COVID started getting serious so all ultras were shut down but they turned a lot of the ultras into virtual which was a good thing.  

So I did a few ultras and at this time my feet were doing fine.  I was able to do a few thousand miles. Then gradually my feet started to hurt and by now my hands and wrists were starting to have major complications with pain. At times my hands and wrists hurt so bad that I was in bed in a fetal position for a day or two at a time wishing someone would cut them off just to remove the pain. Within 3 to 4 months my feet became so painful I could barely walk around our neighborhood block.  My feet felt as though I was walking on jagged rocks mixed with broken glass.  Each step was so painful I thought at times I might just have to crawl home.

I was starting to become so fatigued from the constant pain and not being able to get a decent nights sleep, that I was constantly laying down to take siesta throughout the day.  By this time my hands and feet were completely useless.  I could barely hold a pencil, brush my teeth or hold a glass of water.  Sitting in a chair I was always groaning and squirming every second with no possible way to find a comfortable position.  The feeling that I was having was my life was slowly being taken from me.

I began seeing a Rheumatologist and he put me on one medication for a few months but that did not help so he put me on another and that also did not help and another.  These changes in medication were a period of 2  1/2 years of trial and error and changing Rheumatologist 3 different times.  Meanwhile my body  was slowly deteriorating at a fast pace. I was still in a lot of agonizing pain.  The state of my physical deterioration and my mental state from the pain  and also the medication was driving both myself and my wonderful wife slightly crazy.  There were no good answers from the docs for relief.  

My doctor put me on a program of IV infusions 2 rounds every 6 months. The drug was Rituxan and each infusion was anywhere from 3 to 6 hours long. The more your body accepted the drug then the less time it would take. The only problem with the drug was it would compromise the immune system which would make a person more vulnerable to sickness or colds.  So after my first and second infusions I still had no relief.  I was still really messed up.

I had just reached 2  1/2 years of suffering with a lot of pain then I was hit with COVID, Double Pneumonia.  My wife had been monitoring my vitals.  After a week of not getting any better she took me to urgent care where they took X-rays and my lungs at that time were clear. They found nothing other than   COVID symptoms.  We went home and a day or 2 later she took me back to urgent care for I was getting worse.  Same result as the first visit so we went home.  The very next day I was feeling so bad as well as looking bad she took me one more time to urgent care.  This time the X-rays showed that overnight I had Double Pneumonia COVID.  Off to the ER we went.  When we got to the ER they put me on oxygen and took me away on a gurney.  My wife thought that was the last time she was going to see me and I as well thought I might not ever see her again.  By now I was in so much discomfort and starting to hallucinate. I laid on that gurney for 2 1/2 days because the hospital was full of COVID patients and there weren't enough beds for everyone.  Each hour and minute on that gurney was a miserable hell. There was time during all this misery I thought it would feel right if I could just give up and let life slip away.  Then I would think of my wife and what would happen to her if I didn't make it.  So I decided I would fight with everything in me to hang on a little longer.  Each time those thoughts came, and there were many, I kept telling myself don't give up. Finally on that 3rd day they got me a room and a bed.  They put me on Remdesivir and pumped me full of the drug and I finally started to feel better.  Had they not gotten the dosage, I was on my way to having to be put on a ventilator.  After 6 days I finally started to recover  enough for them to let me go from the hospital.  It was a huge relief.

On the COVID floor they have a bell that a person gets to ring when they have beaten COVID and is released from the hospital.  The whole time I was in the hospital I never hear anyone ring the bell.  As far as I know, during that time, I was the only person who made it through and got to ring the bell.  When a person gets to ring the bell, all the nurses and staff all cheer and clap.  They are happy for they were able to save another person.  After all this, it has taken me many months to feel somewhat normal but I still have a long way to go after 6 months.