As the dust settles…

I have been experiencing writers block. You see, I have been on a health roller coaster decline for the last six months and it culminated several weeks ago with emergency hospitalization and surgery. This whole experience has been of such magnitude that I realize I am looking at my life as pre-spine decompression and post spine decompression. I find it hard to write about because I feel I cannot convey the magnitude of the life changing effect the last six months has had on my whole (physical, psychological and spiritual) body. No doubt I will write several blog posts about these experiences because there were many important things packed into this timeline.

I'll start with a brief summary of my physical decline leading up to hospitalization. There are so many healthcare providers I saw over the last six months and so many tests and imaging that I can only give a summary in broad strokes. There were conflicting diagnosis' and treatments offered. I was an advocate for myself and stood up to medical gaslighting. I endured what later would be discovered to be an unnecessary hand surgery. My physical decline and the medical trauma I experienced over six months have forged inner growth that I will talk about in another post. In times such as these, I loved looking at this sticker on my bulletin board near my desk.

As you know, I live with an autoimmune illness, rheumatoid arthritis. I have shared about the constant pain, decreased mobility, exhaustion and other systemic symptoms. But six months ago, I began a rapid decline in the use of my legs and hands. I sensed that something different was going on and it was serious. But my doctors kept telling me it was 'just' my RA and there was nothing much I could do differently about it.  My rheumatologist offered additional medication (sulfasalazine) which I ended up not taking because I was afraid of the side effects. I continued to suffer and decline in my ability to walk and in daily hand functions such as opening a bottle, using utensils, being able to dress myself! 

Two months later, I knew that something was terribly wrong with me. I had lost coordination of my fingers and strength in my grip. I experienced terrible burning pain in my thumb and pointer finger and all of my fingers were totally numb. I had crushing pain up my arms and my muscles felt like beef jerky- stiff and unbendable. I could not walk with one foot in front of the other, nor could I stand for any period of time without losing my balance and falling. I had to use a walker and wheelchair and even installed a chair lift in my townhome because I could not handle the stairs. And the pain up and down my spine was intractable. My quality of life was quickly decreasing. In addition to the loss of daily functional abilities, my days were filled with pain, pain, pain.

My pain doctor increased my nerve medication to its' max limit, gave me Tylenol 4 with codeine, a  muscle relaxant and we were planning for more spinal epidurals. I was miserable. Living in constant pain is no quality of life.

In an emergency visit to my rheumatologist, I was given a short course of steroids for inflammation. The terrible pain and burning and loss of function of my hands was attributed to carpal tunnel. And I was (finally) referred to a neurologist for my loss of balance and difficulty walking. This Neurologist wasted months of my time gaslighting me. He sent me to a hand surgeon who ended up performing hand surgery altering three things in my right hand, which I would later discover was probably not necessary. I will write more about that later. I do believe the universe keeps sending you lessons until you master them. Medical gaslighting was something I had difficulty standing up to in the past. I'm very proud of myself that I pushed past my self doubts and searched for another neurologist for a third opinion. It saved my life.

I researched neurologists with five stars reviews, and I decided to pick a woman, thinking perhaps a

woman would listen to me more. I found a brilliant young, black,  female neurologist, top in her field of multiple sclerosis, Dr A.  Her fellow conducted an hour long thorough physical exam, and took note that I was severely impaired. When Dr A came in, I looked her in the eye with tears and told her I felt I was on a runaway train that was going to crash because my symptoms were declining so rapidly and nobody was doing anything. She looked back at me and said "what's happening to you is not normal and we will find the reason. " She ordered blood tests for obscure illnesses that could produce my symptoms and a complete MRI of my spine.

Interestingly. when her fellow was finishing paperwork with me, she asked me how I came to choose this neurologist for another opinion. I told her I went by her credentials and high ratings, but that I also picked her because I felt a woman might listen to me more. Without missing a beat, that female fellow told me "We do."

The MRI's were divided over two days. Monday, I would get cervical and lumbar MRIs and I would get my thoracic MRI on Tuesday. I had to take tranquilizers to do the MRIs as I am very claustrophobic. On Wednesday, 6:30 PM,  I check my email and saw I had an email on My Chart app. Thinking it was an appointment reminder, I almost did not look at it, but I decided since I have MRIs pending results I would check it out. When I checked the message, it was from Dr A and her message was just two sentences:

“Hi Deborah, the MRI of your spine shows compression of your spinal cord. I recommend you go to the ED for urgent evaluation by neurosurgery." 

And thus began the beginning of my treatment. Finally. Someone had listened.