There has been a reason why I refer to my spinal cord inflammation disease as that and not in more detail than what is officially happening within my spinal cord, because it is so complicated. Also scary for those who care and I care about not wanting to burden those who care.
Yet I daresay for this blog as a whole, I need to open another window as I did previously about what my days are currently. So I will share in medical detail what exactly my spinal cord inflammation disease is so it is explained...
First, due to not having cartilage between my vertebra this alone has compromised my spinal cord, besides severe curvature of my spine. Surgeries were needed as bone was pressing in on my spinal cord causing pain and nerve damage to my bladder. One spine surgery turned into seven. Three of them to remove adhesions also pressing in on my spinal cord from the first four spine surgeries.
During the 1980's I had four myelograms. This is a diagnostic procedure used by my neurosurgeons and orthopaedic surgeons together. An oil based dye was injected directly into my spinal cord as I lay on a movable X-ray table. No sedation could be used as my team needed me alert. The table was then moved so the dye could be moved and viewed within my spinal cord, so my team could have a better understanding of how bad the worse things were and where.
The plan was to then extract the dye from my spinal cord, only when this was attempted, my arms and legs
violently went out of control thrashing about. Again and again. This was dangerous and absolutely terrifying,
for me and my teams. So the dye had to be left in.
The problem with this is I had FOUR myelograms during the 1980's...two of them from my neck to L-5, the whole length of my spinal cord. The dye in its entirety had to be left inside all four times. A massive amount.
By the late 1980's it was discovered the oil in the dye was causing horrific problems within spinal cords. Even the majority of cases where the dye could be extracted (since then, the dye is no longer oil based).
Within our spinal cords we have what are known as arachnoids...these are the network of nerves which resemble spider webs, hence the name. The oil severely inflames these. In my case since so much inflammation was already happening within my spinal cord from my dwarfism and the trauma of seven spine surgeries and this was then met with the massive amount of oil, it was best described by my Johns-Hopkins neurosurgeon as being an atom bomb detonated within my spinal cord, unleashing a severe inflammation explosion ever moving upwards causing shutdown.
This not only causes excruciating pain that never ends, but the worsening nerve damage to my legs, urinary and digestive tracts. There is nothing that can be done. In recent years I had to begin using a walker, which I must use when I leave home. I cannot stand long and fall down a lot. It's hard to believe how I spent decades galloping on all my horses bareback now.
Because my bladder and colon are failing I also live with the infections and intense nausea as touched on already.
I am beginning to have shortness of breath. The severe inflammation will next begin affecting my respiratory system. My doctors and I have long known this would
all eventually happen when I was handed this at the age of thirty-four. They did however, expect me to be where I am now, or worse, ten to twenty years earlier than this, so my being as physically active as I have been, besides my indomitable spirit has given me far more time. Perhaps so I could finally begin putting into writing here what I was either speaking about or telling funny stories about as I promised I would do someday.🐎💫
Some would feel cheated but I focus on my glass as being full and not empty...for my glass has been, and remains, full. I have been blessed to do a thousand things many non height challenged people have never done or experienced.
My dear ones, now you may understand why I have kept my inflammation disease within my spinal cord as just that, because it involves so much more.
So for today, I have opened the window on this.
Know I remain very blessed.
How grateful I am for each of you...🐎💫
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