Hard won improvements: hands edition

 

This is a happy post. As some of you may have already read in past posts, the last two years have been very difficult for me. I have an autoimmune illness (rheumatoid arthritis) that has attacked my body in so many different ways. I believe it has attacked my gastrointestinal system. It has attacked all my joints, and it has wreaked terrible havoc on my spine. At least that is what my neurosurgeons speculate happened to my spine.*

In August of 2023, the pain in my back (and other places)  became so great that I was not able to work anymore. It was difficult to just be out of bed and walk. At the same time, my hands started becoming painfully, numb and lost dexterity. I went to three doctors trying to figure out why I was losing my balance and why I could not even hold eating utensils or a pen. I was misdiagnosed as simply having carpal tunnel. And the rest of my difficulties were chalked up to the effects of rheumatoid arthritis. Never mind, the fact that my rheumatologist was telling me that these symptoms of loss of balance and inability to control my foot placement was not an effect of RA.

Long story short, upon my third doctor and a second opinion by a neurologist, a full spinal MRI was ordered. That neurologist reached out to me the moment she saw the results and told me to head to the ER immediately, I had such severe spinal compression that I was close to paralysis. By that time, I was already using a walker and I could not use my hands for anything. I was totally dependent on an aide for all daily activities. I had an emergency corpectomy and cervical fusions in my neck on September 24, 2024. I ended up in a neck brace for 3 1/2 months post-op.

The day after this intensive surgery, I felt relief from the neuropathy in my hands. While I still suffer with it in my left hand, it is a far cry from the debilitating and agonizing burning pain I had been feeling in my hands 24/7. The crushing sensation I felt up my arms would dissipate over the next couple months. When I realize how close I was to paralysis from the neck down, I thank God and all my angels.

I have been doing physical therapy for over a year and while I am an impatient person, I am seeing great results. They may be subtle to the outside viewer looking in at me; but for me, I feel them as big steps. The biggest improvement has been my right hand, regaining much control. I do believe this was a blessing from God. I remember talking with my chief neurosurgeons before surgery and telling him that if they had to choose between saving my hands or my legs, to please save my hands. Not being able to write, dress myself and most importantly not being able to make art had robbed so much joy from my life. And the pain! Wow. I would make do with mobility aids if I could have my hands back and as I write this, I am happy to report my dominant hand is now about 90% healed ;my left hand not so much. But I'll take it.

Five months after my cervical surgery (February 2025), I sat at my art table and tried to paint some basic designs. This was the result . I

could not even draw lines well; I could not paint clean curves. My brushstrokes were visibly shaky. I was disgusted with myself and so utterly sad that I stopped sitting at my art table for months. Lots of tears. 

Three months later and eight months post op from cervical decompression, I again tried this same exercise. I am delighted. I doodled the image at the top of this post. My lines are more confident, controlled and solid. While my right hand is still a little shaky with fine lines. I am thrilled to be this improved. And grateful.

I now sit at my art table at least 5 days a week and I am enjoying my creativity again. I need to remember this improvement when I lose patience, especially around walking.

My emergency thoracic spinal decompression on December 28, 2024 stopped an impending paralysis as well, just lower in my body. I have not regained the ability to walk unassisted yet. I worry I'll never walk by myself again. But I need to remember these two drawings and know that with patience and hard work, I will improve. Or at least I'll be better, if not totally, ambulatory.

While I am frustrated about not being able to walk unassisted, I have to remember that I got my wish. I remember urgently telling the Neurosurgeon to save my hands and that is what has happened. If I am able to walk unassisted in the future, it will just be the icing on the cake. But I do hope to have a happy post like this one around my walking  abilities in the future.

*Since this post is about my hand recovery, I will not go into the thoracic spinal decompression surgery that I had December 28, 2024.