My Dear Twitter Readers, when I began this blog I made the decision to write only about my very full journey and not where my deteriorating health has brought me to now. I have always been far more at ease being the pied piper rather than going in depth about where my health has brought me. Several months ago though I opened a rare window going in depth where I am and what days are like being in my body because I have touched on the dire prognosis given to me at age thirty-four where my body was taking me. As I have many new blog readers since I posted these two pieces I am reposting these. Not to bring sadness but to hopefully convey my resiliency and continued courage to inspire. Because it takes fire to make a diamond. And darkness to make a star shine bright. So I open My Window.]
My dear ones, since this blog and my life have always been about living my life on the bright side this is the place where I strive to bring you. For you see my journey is not defined so much by where I am now but by the many amazing ways I arrived.
For the second time only I shall open the window and share with you what my days are really like at this time of my journey where my body brings me.
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 a 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. As you know I had to learn how to walk again twice following 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. Thus making my case more dire since so much inflammation was already happening within my spinal cord from my dwarfism and the trauma of seven spine surgeries. For this was then met with the massive amount of oil where it was best described by my Johns-Hopkins neurosurgeon as being an atom bomb detonated within my spinal cord unleashing a very powerful destructive 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 to stop the progression. 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 severely 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, 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 many I would do someday.🐎💫
Some would feel cheated but I always focus on my glass as being full and never empty...for my glass has been and still 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 now opened the window on this.
Know I remain very blessed. My challenging amazing galloping journey bringing me here is why.
And sharing it with you.
How grateful I am for each of you.🐎💫
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