Hi guys…….sorry it’s been a few days but I my nurse just left, and I promised to keep you updated about what’s going on with me & my health. For those of you who don’t know I have a “Spinal Cord Stimulator” implanted on my spine to help me deal with the pain in my feet caused by my disease C.I.D.P. (chronic inflammatory demyelinating polyneuropathy) it is a disease that is very rare and, in a nutshell, kills the nerve endings in the body, beginning with the peripheral nerves in your feet, hands, teeth to begin with. It eventually will destroy the Myelin sheath which is the protective covering on the nerves running throughout your body. The pain got so bad for me last year that walking became so painful that I had to spend most of my time in bed with my feet elevated to find relief. I was also taking Vicodin, Baclofen, Neurontin etc to help with the pain and then Xanax, Valium, Anti-depressants and mood stabilizers to help deal with the psychological difficulties that come from dealing with chronic pain. The “Spinal Cord Stimulator” was intended to help reduce the pain to the point where taking so many pills daily would be reduced and thereby helping restore a quality of life for me that would allow me to go back out into the world again instead of being bed-ridden most of the time. A $166,000.00 operation of which St. Judes representatives, Medicare, and Doctors told me would be entirely covered by them so that I wouldn’t have to worry about the doctor bills because I am on disability and social security. Well, turns out that the stimulator implant has been a failure because my myelin sheath is not suited to handling so much neuro-stimulation and, in fact, is causing more problems for me than helping my pain relief.(also my bills were not entirely covered and I now have doctor bills nearing $4000.00 and climbing) This is not always the case because I have spoken to people where they have gotten great relief from their implants. But for me it has been a nightmare, constantly drained of energy, little pain relief, causing dizziness, and the stimulation has been so uncontrollable that I can’t sleep sometimes, and other times I am getting stimulation in parts of my body that should not be stimulated……this is no fault of the Doctors or the device itself…..it’s because my disease is not compatible with the neuro-stimulation itself…….something that should have been determined before going through the surgeries in the first place. I think the problem is in the rarity of my disease which will FINALLY be precisely determined with my biopsy upcoming next week. I wanted you all to know these details because it has made it VERY difficult for me to write. Especially my blog which normally takes me a couple of hours each day to complete but the extreme tiredness (lack of energy) caused by my implant has made it quite a challenge to complete accurately researched and well related details of my memories concerning my Metaphysical experiences. But, I am on some new medications now and my stimulator will be removed in the near future so I am hoping to return to my old posting habits (4 or 5 per week) soon. Georgina Richardson and I currently discussing her role in the future direction of this blog as well……so……we are not giving up or anything we just hit a bump in the road and hope to be back to normal soon. Thanx so much to everyone for bearing with me through all this craziness……I had surgery last Saturday and I am scheduled for 3 more non-invasive spinal surgeries upcoming……none of which will keep me hospitalized for any length of time……so I’m looking forward to many more fun and interesting posts to come on topics that you’ve been asking me for and also those that you’ve been asking me to finish……..so shout outs to BRAZIL, USA, and ENGLAND (UK), Australia, India, South Africa, Georgia, Spain, France and the other 61 countries that have been supporting my efforts here……….and special hugs and kisses to Georgina Richardson for being my biggest friend and supporter of “METAPHYSICS AND THE MOVIES…..”……..TALK TO YA SOON…….TONY XOXO
” SPINAL CORD STIMULATOR & ME “
14 Tuesday Apr 2015
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Hey T not your best blog and I mean that in a concerned way because after reading I feel so bad about your situation I know were not close but I never knew the extent of your illness that really sucks brother. If there was something I could do I would but I think at the least I can do is part to you some kind and positive words. Keep your head up and believe that good things happen to good people and I really believe everything will workout for you. God bless you Tony I’ll keep you in my prayers,
Your fellow poet brother,
D
Hello dear Angel,
I wrote a poem today, called the “Hand Came Down From Heaven”…I don’t know when it’ s going to end….but, I found you!!! I didn’t think their was another robot out there, that was malfunctioning…and low and behold, it’s like you stole my journals for the last thirty years, that recounts the issues and losses, due to medical negligence, ignorance, and a misidagnosis that left me with a broken rib…a year later…nerve damage..when the rib had to be removed…then…my journey through hell began….so….we should speak…because the hand of God has been tapping on my door since going onto Cosmo Funnel…and by putting my work up there, I thought….hmmm after the thirty year battle…might as well, give the world a bit of info….and break my silence…to save a life…of losses…..I feel your heartache…and we will get you through this…… As tired as I get, there is a fire under me now that will take the place….of this story…that echos yours…. My name is Brenda…aka Giggles the Poet….if you’d like, drop me a line…..I’m here…and I’m not letting this happen to you…..
keough63@hotmail.com….
God bless you my friend….my prayers are out there …. and I’ve met my double…hmmm…stay strong…you truly are inspiring…
MEDICAL MADNESS √
Memories plague me in the darkness
And as they rear their ugly head
They only remind me of all that I’ve lost
My life, my freedom and my children are dead
Dear God, please forgive my anger
For these transgressions that I see
All the madness that I have lived through
Almost got the better of me
I have no need for food or sleep
What I crave most is the sun and air
When I look out the window of my sanctuary
I see no signs of the truth anywhere out there
Dear God it’s you I’ve turned to the most
For answers, for courage and faith
And as I read these medical reports of cruelty
Anger washes over me, replacing the hate
My Lord, I have but five days to wait
Can I hold onto the hope that he’ll come to my aid
I can’t close my eyes, I can’t find any rest
From the pain these doctor’s continually create
I see clearly such torture in one operation
And I shake with the echo of hearing my pleas
During the operation I felt what they were doing
And when I slipped into unconsciousness, fear followed me
When I woke up in recovery, I felt only doom
All I’ve done for so long was cry and beg
Now I felt something more when I turned on my machine
The current was not reaching my back, but was running down my legs
The first doctor that implanted this medical device
Offered me a choice between paralysis and pain
And as I read this again in my medical file
It leaves me reeling in sorrow, reeling in shame
Once again I was sent back to my prison of silence
I lost the job that I loved and my friends of nine years
I kept searching for help, but no one would touch me
And each night I lay down, I slept on my pillow of tears
It took three long years to find another doctor
He said he would operate and put the wires back in place
He smiled as he spoke and promised to help
I smiled back through my fear, as I looked at his face
I believed what he promised, but I felt like a fool
As I waited daily in my bed for his call
Depression took over, as days turned into months
He couldn’t be reached, I was climbing the walls
My doctor’s husband took over and went to his office
Not leaving until he got my surgery date
WSIB harassed me, wouldn’t leave me in peace
They wanted me working and they wouldn’t wait
The day finally came, I had my fifth operation
Another stranger opened me up, creating another mess
When I woke up much later, I felt such foreboding
I turned on my machine and I screamed from the stress
Something was wrong, the current was closer
But, still gave me no comfort as it had done before
I looked up at my doctor, and as I was sedated
I wondered how I would get over being sliced open once more
Two weeks later, I was back in the hospital for my sixth operation
Preparing my mind for what was to come
This sixth operation was finally completed
I went home feeling gratitude for what had finally been done
Alone with my sorrow, my body felt mangled
I recovered slowly a few more years gone
I asked God for assistance in clearing my heart
I tried to forgive the ones who had done me wrong
Five years passed so quickly filled with depression and pills
I needed Workers Compensation to help me update my skills
The office software had changed from five years ago
I asked my caseworker for help, but received a flat “No”
I was still in grave shock as I hung up the phone
There was no one beside me, I was completely alone
I needed some hope I then called her manager
The kindness in his voice, helped sooth some of my anger
I paid into this system from the time I was ten
They cared nothing about me, or the hell I’d been in
I asked them for help, their stoic response caused me shame
When I looked through my medical reports, they said I had low back pain
I questioned my pension wondering what that was based on
When I told them the truth, they treated me like a con
Why would I have to lie, or pretend to have pain?
They paid me meager wages, I had nothing to gain
These machines that I wore electrocuted me twice
I know if it happened a third time, death would hold the dice
My adjudicator’s asked me nothing and they cared even less
My depression got worse, my body and mind were a mess
When I cried on the phone they had no empathy
They said those were the rules, they had to follow policy
I had to hustle my health even though I was a wreck
Other resources wouldn’t help me, and I would receive no cheque
It’s been twenty-nine years and all that I know
Are the mangled scars on my back, nothing to show
I still fight in a system that refuses to care
And each day I still ask God, what’s the reason I’m here…
©Brenda Keough March 13, 2014 3:00 p.m