Wednesday, April 5, 2017

The Coolest Thing



So here we are. March 31st marks a full six months from the time that I willingly and quite anxiously lawdeld, yes lawdeld (waddling with a serious limp component) into the CU Anschutz Medical Center expecting a small group of unfamiliar, yet highly esteemed Doctors, Nurses and Surgeons to perform a graphically disturbing procedure of considerable complexity. In other, less heady, words, I suppose that I was substantially convinced upon the act of a miracle at the hands of strangers! Lol

Looking back on the details of this personal journey, in it's entirety, as well as the many others out there walking this nightmare of a road in whatever form or fashion that it presents itself, is a mind blowing anomaly for me to conceive.

It can be difficult at times to find that tiny ray of sunshine, that mighty strand of hope that we all love to dream on and to propagate for each other and even for ourselves. While the crushing cold darkness with it's all consuming hunger is increasingly bearing down all around you and the weight of it all is a thief to your every breath. And just as the ominous waves of sadness wash rhythmically through your soul and slowly pierce its way down through your last membrane of solitude and sanity, It is during these times that we can quite easily find ourselves seemingly teetering on some proverbial edge. Where we are faced with our own mental integrity as well as to the reality of our true nature and physical mortality.

 It is at the extremity of these distressing times, that shortly thereafter and by all considerable imagination, a funny little thing occurs. Sometimes, it can even feel as though it is the coolest thing! 

If you are currently out there somewhere treading barefoot through the thorny thickets of this process, then I can relate with you for potentially feeling inspired to come fire-bomb my house right now. For some odd reason, it seems to be overwhelmingly irritant to here those heart felt assurances from very well meaning folks simply cheering "just hang in there, it will all get better soon, you just gotta give it some time". 

Even though, we know deep down that this is more than likely, absolutely true, it doesn't seem to allow for any sense of real comfort and if nothing else, ironically almost seems to accentuate the current frustration or anxiety! At least that is my true experience with it and could, quite possibly be, just me. 




It is a funny thing to gradually become truly aware of the reality that you have landed in a relationship that places the majority of your mortality outside of your own natural faculties. In other words, to become dependent upon some thing, like a machine or a pill etc.. 

Of course, if you really barrel down on the thought, you realize that we are all born into this state naturally, dependent on air, water, warmth and food right from the very beginning. However, we seemingly have tenancy to take those things for granted up until we are denied them. And in some ways, I am truthfully thankful to not have to expend so much thought and energy into being overly concerned with that aspect of life. I feel as though I've nearly perfected the art of discovering all the multitude of things to ultimately worry about.

But, as a recovering Cushing's patient, we are immediately thrust into a new life dependent relationship with a nasty little steroid called Prednisone, with no real determinable time-frame. As it is with most things of this nature, the length of time you are tied to this evil demon of a drug, is as variant as there are people having to deal with it. And furthermore, no real guaranty that you will ever be able to separate yourself from it. A thought that I never did fully come to grips with. The only possible way to become free of this paticular bondage is if the remaining portion of the Pituitary gland, if you should have any, begins to recover and to wake-up. stepping back into it's significant role of  governing over all of the body's entire adrenal system which is the driving force behind every chemical/hormonal balancing act and function.

This potential little event then, for the Cushie anyway, becomes the primary focal point for recovery. You might say that all the proverbial eggs get put into this basket waiting and wishing on that moment to arrive. Normally, we are watched very closely over a period of time following the surgery and tested periodically to discover this event occurring. And, it is usually common practice for the surgeon and the endocrinologist to institute a minimum grace period where it is considered to be highly unlikely for this to happen in order to deter from overly high hopes and expectations from all the parties involved. 

The testing for this awakening begins at around the three month mark with very low anticipation and then proceeds in three month intervals out to about as much as two years at which time it becomes necessary to consider the real possibility that the Pituitary has become irreparable and that the patient will have to be set up on a long term supplemental hormone treatment plan. Which again, was a thought that I struggled to be able to accept even six months into it. 



As I mentioned above, the Pituitary awakening becomes the all consuming focal point of the Cushies recovery process and that the follow-up testing for these results are in increments of every three months which, if I have not rambled on too dreadfully long here getting to the point and you have so graciously stayed with me, you may have already calculated that I am currently due for one of those appointments being that I am now 6 mos. post surgery, but a funny little thing happened the other day and I am finding it too difficult, in my overwhelming excitement to hold out from writing about it.

But, the other night, while I was setting up to take my regular dose of medications before going to bed, I discovered that a single pill was left rattling around in one of the organizing trays, which should not have been there. Upon further examination I was a more than a little shocked to discover that the pill in question was actually one of my Prednisone doses from a few days back! 

Naturally, my mind raced with wonder as to what could have happened and if it were possible that I could have actually skipped a dose? Through previous experience, I had come to realize that I would quickly begin to crash and go into what is referred to as an adrenal crisis if I waited too long or did not compensate appropriately my dosage to daily stress factors etc. These experiences have taught me fairly quickly the seriousness to which I am dependent having been bounced into the ER on several occasions. 

So, perhaps you can imagine the bewilderment that I was experiencing over this queer discovery. But, at the same time I became increasingly more excited at the thought that maybe, I had, accidentally and unknowingly sustained through a twenty four hour period without crashing! The very idea was too tempting not to try and perform an experiment or test of my own. The plan was to purposefully go ahead and skip the very next dose and to monitor the results keeping close to the meds in case I should begin to crash. 

I am happy to report that as of today, I have been without a dose of Prednisone four full days now!!! And obviously, I feel well enough to type out this mammoth of a blog post! Of course, I am sure that my doctors will still want to run some tests and check everything out for sure, but I am feeling quite optimistic at this point that I have turned a HUGE corner in the fight on this disease. This, in conjunction with the fact that I am continuing to be successful in losing the weight that is a all too ugly side effect of this condition. I have just recently posted the exciting achievment of crossing under the 200 mark, but as an update I am now another 4lbs lighter at an all-time record now of 196!!! 

I know that I have struggled with some depressing or negative posts in the past, whining as I go, but it has been in the spirit of trying to stay dreadfully real here. One thing that helped me substantially from the very beginning, aside from the amazing support and patience provided by my Friends, Family and by far, my GF Nicole, was all the amazing stories made available on the internet by those who have been down this road much longer than I have. And some, who are no longer with us as a result of this potentially deadly disease. I was and still am thoroughly encouraged , inspired and unspeakably thankful for each and every one of their willingness to pour their precious hearts out in order to provide awareness, education, and empathy to those who may one day may unfortunately find themselves walking this road. 

You are not alone! And it is not the end that it will sometimes make you feel, and think that it is! It is rare, but it is real. It is nasty, but it is certainly do-able! And I would like nothing more than to be able to pay forward, to some degree, a similar benefit as what was gifted to me. Please feel free to contact me if you or someone you know may have any questions or just need some ear to bend. Please know that I am here.