In discovering all the things that have been going on with my body, I have beccome starkly aware of various atttributes that overlap each other in their course of progression.
I have decided that the ONLY way I can embrace this process in a positive and forward thinking manner, and avoid this well of Depression and puzzle pieces floating all over the place ALL OF THE TIME.... is to tap into my long term memories of "Caren before the wreck and her love of Medicine and its advances"...and force myself to LEARN and take notes differently, and try to understand what it is I am reading differently without respect to time frames (because it may take me days to read one article or re-read it many times to understand and process it before I can form a way to communicate about it). Allow myself to process things differently and force myself to document things as I go....so the "Caren after the wreck" doesn't forget the details, loses the essence of the communication and importance of those details needed in a recall situations - to speak or advocate calmly, rationally, and without trying to grasp for words that are there but seemingly unobtainable, and memories, that are as inconsistent as each grain of sand or each snowflake. The inconsistencies that render myself, and the people around me, frustrated at best.
The Dis in Disease means quite literally " away" or "without" - so without ease. So when we hear of something being called a Disease - I automatically think of doom and gloom and awesome. Something I cannot control. However, if I look at it more closely and deeper and recognize something....not as the END, but as the begining of understanding a different way of doing things....it makes things possible.
Typically, when a person hears Dis-ease (Disease) process, I imagine, like me, it must automatically makes a person, much like myself in that aspect, reflect on their own mortality and how it can be lengthened or sustained for a set period of time.....at least that is how it is for me and how I think. Why did this happen, how did this happen, and how do where do we go from here become questions without answers and direction...which can leave a person feeling helpless, hopeless, or in a state of perpetual "panic" if you will...
(See: dis- a Latin prefix meaning “apart,” “asunder,” “away,” “utterly,” or having a privative, negative, or reversing force (see de-, un-2.); used freely; used as an English formative - disability; disaffirm; disbar; disbelief; discontent; dishearten; dislike; disown or without)
It's like my life is at a table being served. My life has been given the menu of dis-eases and dis-ease processes by which there is no escaping their stark realities and significance in my life, and yet they are all largely and mostly invisible injuries to the naked eyes of another. They are most certainly menu choices I did not order for myself, because I had different plans, goals, and desires for my life.
A "Menu of Life" As I know it....and in no particular order:
1. Chronic Pain, with ongoing unhealed fractures STILL (as of this writing, we are 16 months later); Polytrauma not resolved so body is still not in what I have been told is the "recovery" stage until all healed....
2. Traumatic Brain Injury (TBI) - a diabolical process of puzzle pieces
3. Neurogenic Bladder
5. Poly Cystic Ovary Syndrome (PCOS)
6. Pseudo Tumor Ceribri (In Remission still)
7. Pathological Hypersomnia and lets not forget this is mixed with Insomnia - YAY ME, *smiles* and preexisting sleep apnea which was managed with no problems before the wreck....so I can rule certain things out.
That is just the majority of what we know so far.....and here I am left wondering...what are we missing? What piece of the puzzle are we missing that hasn't been checked yet....AND how do I move on....move FORWARD from here.
My bucket list items to still get accomplished:
*Get all hormones checked and Pituitary checked for Hypopituitarism from either Neurologist or Endocrinologist
*MRI of Brain involving diffusion tensor imaging (DTI) and magnetic resonance spectroscopic imaging (MRSI).....which the Level one Trauma facility here (I learned recetly) has available...woot woot!
However an MRI of my brain has NEVER been done, not even at intial ER admission or in the admission hospital or NeruoRehab setting....does anyone other than me see a problem with this? I was told "just because we have the technology available does't mean we have to utilize it".....say WHAT??? Can ANY of you reading this right now, explain this to me so I understand WHY this statement should even make sense??? Anywhooooooo...moving along......
*MRI of Cervical Thoracic and Lumbar Spine (scheduled)
*EMG of Right shoulder and arm (scheduled)
*Continue Counseling and Various Therapies - the verdict is still out on this aspect of things for me in this realm, in transition, fluid and ever changing, even by my own observations, and will have to be discussed uner an entirely different post)
So in light of all there is to do, or to be done...whether by self advocacy, discovery of information by the many healthcare providers I have come to learn a great deal from (in both effective and ineffective methodologies) and depend on.....let's continue this journey proactively.....and so I say....ORDER UP!