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Monday, November 14, 2016

Miracles are everywhere !!!



It has taken me some time to clear the fog of recent brain surgery and latest scare on my journey with a third of your immune system.  Yes its now about a third of the normal immune system which means my immune system is slowly recovering.  But as it awakens it finds things in my body it didn't have the power to do anything about and it attacks.  My body internally is constantly working harder and harder to find balance with a disease and even the medications I take to keep me going.

Over a year ago I felt something shift inside me.  Rarely do I run to the Doctors, in fact I spend a great deal of time avoiding them.  But this time I knew something changed and I wanted to understand why and how we could fix it.
I began having daily headaches, visual disturbances and massive personality changes.  Even my body temperature had decreased from its comfortable 98 to never higher than 95.  My blood pressure was now 100/50 on a good day down significantly from my everyday average.  We began testing and through an MRI found a pineal gland hemorrhage that had cysted over into a 6 mm mass.  Now its fairly rare about 1-4 % of the population has a pineal cyst.  Some never experience a thing with a 12 mm cyst, yet some are forever changed by a 1 mm cyst.  It differs for everyone like all things.  But it was clear I knew something was wrong and we found it accordingly and so did my immune system waking up.

 More changes in me over the next few months as we took the "wait and see" approach of the brain cyst and things got really goofy.  Not knowing what was in store for me and knowing of the changes in my brain I wondered......whats next?...will I just slowly fade away with a deteriorating brain hurting everyone around me?  The depression got worse and I did everything I could do to push people away.  I didn't want to feel guilty any more for putting people through all the things I have to do to survive. Nor have them be a slave to what could come next.  I realize that this is wrong but in all honesty I am not sure my brain was exactly working at full effectiveness.

Another MRI was done 6 months after the first and the cyst showed a slow leak causing internal pressure and they recommended surgery.  I chose to wait. But things got much worse and I completely melted down bringing me to the surgical table for the cyst finally a few weeks ago.

The surgery was simple really.  A small hole drilled into the skull and a needle inserted oh so carefully. Barely even left a scar.  They aspirated the cyst (sucked out) and reported a portion of the cyst was a solid mass which they of course biopsied.  But because the cyst was to large and solid they left it alone for future surgery.  They considered putting in a shunt to redirect blood flow around the cyst but didn't thinking eventually the entire cyst,mass and the entire pineal gland would have to go through a more aggressive surgery.  Often times a blockage in a vessel will cause a cyst or even a slow leak from a brain injury. Some of my biopsy showed fetal tissue...meaning a small cyst could have been there since birth never causing an issue until my immune system woke up and found it.

Not the best of news I must admit but then something happened.  Two weeks after the surgery I went back for a post surgical mri.  Low and behold the cyst was no where to be found.  Now I realize miracles happen, and yes I know the body is an amazing thing.  But NO ONE had any explanation for it other than by aspirating the cyst it probably loosened the blockage and the body did the rest.  Im not one that doesn't believe obviously but in this case not only could they not find the cyst but the mass they biopsied wasn't visible either.  That part is still a bit confusing.  I may believe in the possibility of anything but in this case I actually wondered....I even felt guilty a bit about it all.  I wondered if it could all be a mistake....but its not.

I took all three MRI reports and the surgical pathology reports to another Doctor...all confirmed....This weeks MRI was 100% normal....There was still a bit of residual swelling but otherwise "unremarkable" as the medical community is fond of calling a normal test.  Well to me it wasnt "unremarkable" at all to me, but honestly without proof in my hands I wouldn't believe it either. We agreed to re scan in a few months but for now any future work on whats left of my brain is off the table so one less thing I guess to deal with...crazy!!!
This week I have my appointment with cardiology to discuss there latest testing results but I suspect I know whats wrong with my heart.  I could tell when I doubted my own MRI results and yet again one more miracle to give a go at this world what my problem was.
Whether its brain swelling or ptsd from six years of constant trauma is irrelevant.  I became a different person, and it was scary. I literally gave up on my life and anyone who wanted to help.  I felt guilty for every failure of my body and there were to many to count.  All disappointing not just for me but for those who had to watch it all and live with the consequences. There was damage done and Ive done what I can to forgive myself and others for it.  I move forward grateful for yet another miracle...but quietly I still wonder a bit....why me?  what is it im supposed to do with all of this?
I am sure it will all reveal itself but I do quietly wonder as the fog lifts each day and I rebuild my strength.....
There's one thing about being sick all the time....the attitude that comes with it.  I spend a lot of time hiding my disappointment as this disease robs me at times of things I once took for granted. Different parts of my body sometimes just stop working and almost every-time its some out of the box thing that pulls me through.  Its a difficult balance having chronic illness....what do you complain about?  What do you just live with?  The pressure of others can be daunting in this regards. I try to choose my battles with what I tell Doctors or even those I love.  I just don't like to dwell on things and be reminded how ugly and hard things can be for me.  I choose to find positive although some days are harder than others. But there's a point where I have gone to far with avoiding some things.  Im not trying to rationalize it but lets be honest.  Its exhausting.  When I go in with a flu Doctors panic and so don't others around you. That is not living in balance...its fighting to stay out of constant state of fear and I cannot do that any longer.
We are going to get this heart issue cleared and I'm gonna fix that son of a bitch too.  Why?  Because I am tired of being sick all the time, that's why...I'm tired of what it does to others and if there's one thing I promised myself a long time ago.  I will NOT BE A BURDEN.  So I need to stop living like one.
I am done sitting around waiting to die or sweep up the remains of the next medical calamity and its wake of damage any longer.
So my re-entry to the auto business has re diverted and Im going for it. But here in Arizona not Colorado.   Ive got a month to get into shape and I've made huge progress in the past month on that so we keep moving...crawling some days if need be but we keep moving...evidently theirs still something important I need to do.  But for now I'm gonna do somethings for me.  Hell, who knows...that might be the most important thing of all.

Book update: we are still ranked in the amazon best seller list #34 this morning and were grateful for all those that left a review and joined us in our mission to never allow this to happen to another human being.  we can get tested...it would have changed everything for me...this is why I share what I share...the scary, the humiliating even at times but real. In the end...we want it to make a difference.
If you havent yet joined us the book is on sale everywhere but discounted 40% on our website.  We hope you will join us

http://www.twenty-seconds.net/

Please dont forget to give a buck for hiv awareness on the website as well.  Together we can make a difference

I am looking forward to sharing the rest of the story Deceber 2-4 in Phoenix az at the Southwests largest spiritual conference.  It will also be live streamed...I hope you can join us
http://ascsiconference.org/



  

3 comments:

  1. Robert, it thrilled me to read your words today. I knew you were not yourself and was worried that would be your "new normal". I am so heartened to hear that you are seeing improvements. Love you whole big bunches. Penny

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  2. Oh Robert, I hope your quest for healing proves again surprisingly fruitful, perhaps even miraculous. Love you lots, Beverly

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  3. Thank you all for your loving thoughts and prayers...

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