Thursday, January 10, 2013

Near Miss

life's a polyp

I've addressed some of the ways chronic illness and near death can play havoc on our perception, fear of loss, and even our humor of individuals in Death Warp and in Warped, Skewed, Jacked Up...Whatever. A close friend and I frequently share health experiences with one another and share a common warped sense of humor and views on life and death. We both tend to be death oriented due to the altering effects of health and PTSD on the mind. I've noticed this is common among others in our health circles, it's a mix of coping with the tragic and reshaped perception of life and what once and should be, and all the near misses of death.

It's those near misses that we tend to become fixated on and that ultimately is what alters our perceptions; whether it's a near miss of someone physically dying and returning to life, experiencing and out of body experience, realizing death was drawing near, or simply surviving the unexpected. Each person's experiences are different, they can be incredibly peaceful or can be so terrifying that we either fear the moment of death or we long for the moment to be completed.

As a child I survived the unexpected more than once and was left with scars upon my soul and psyche so deep that I emerged with intense rage and hatred. However, during the year of high school when my health rapidly declined I was aware of death quickly approaching unless something dramatically changed with my health. I was so sensitive to this awareness that I said my goodbyes to my parents in case I wouldn't later have the chance. My doctor later told me that she never knew if I would live from week to week during that period. I had never experienced such a peacefulness and calmness as the time spent telling my parents goodbye. I've never had an out of body experience and I've never physically died, but in that moment I knew that death was a greater peace than anyone can imagine. Since that moment, I have longed for very little other than to experience such grand peace once again. The combination between this longing for eternal peace and my own drive for perfectionism, I am compelled to complete preparation for life events, including my own funeral.

Since high school my funeral has been planned out to the details of the itinerary, even the music to be played and letters to be given to specific loved ones, I have an Advanced Directive and a Last Will and Testament, and although I haven't purchased my tombstone I do have one picked out with what I would like engraved upon the stone. I have left detailed instructions for whomever I outlive in regards to my possessions, my funeral, and my legacy for any children my husband and I may have. Frequently I have compulsive thoughts leaving me wondering what it would be like to drive or fall off a bridge, drive or run into oncoming traffic, drive into a tree, etc. This is similar behavior to my close friend, who finds himself writing his own obituary to pass the time and considering those who have already passed on as being "lucky".

Few people can understand or even grasp why we are so death oriented, even my own husband frequently asks me "what is wrong with you" and "why are you obsessed with death". He simply can't relate on that level with me. Fortunately, there are many individuals with the health circles who are able to relate due to their own similar experiences. It is within these close ranks that we may find comfort and temporary peace together during our time toiling this earth as we wait for our eternal peace.

Thursday, January 3, 2013

Painful Distrust

life's a polyp

The betrayal of someone once trusted with your life is so significant it often is emotionally and mentally scarring. In Medical Angels and Demons, I shared experiences of blessings and torture with various medical providers I've had throughout my life. The betrayal of trust I suffered by providers at the children's hospital I attended as a child continues to haunt me to this day.

I am extremely suspicious of other medical providers until I am convinced that the provider is competent and has my best interests as a patient at heart. I am filled with regret, pain and rage when recalling experiences with these past providers and my trust with other providers has been tainted. My life would be completely different if I had a competent surgeon, if my care hadn't been allowed to be primarily directed by those 3 residents, if the emergency room team had been thorough and attentive. Had the surgeon listened to my parent's concerns my ostomy wouldn't have been placed on the wrong side allowing for my intestine to wrap around itself and other organs, if the emergency room team hadn't sent me home with the simple diagnosis of being a whiny child then the extent of dead intestine could have been prevented, if those residents hadn't been charged primarily with my care rather than the surgeon, perhaps more testing and treatments would have been completed for better, more directed care and treatment. The pain inflicted and level of distrust between these past providers is so great that it is deeply ingrained in association of the hospital and its affiliates as well. I would never be able to work for this hospital unless absolutely required to in order for survival. I would never be able to bring myself to taking any child of mine to the same hospital, even though it is a children's hospital that is supposed to be great with children and advanced in the care and treatment of children.

Never estimate the stupidity of this hospital or the individuals who work there.
A few months ago I suddenly realized that I should be aware of who the residents are that were assigned to me as a child so that I may prevent unknowingly becoming associated with them.
I can't even trust the hospital's medical records department to provide copies of, guess what, medical records. In my quest to uncover the residents' names, my requests for medical records from the children's hospital has been refused twice. The first time I was told that the request was illegible, even though the medical records staff could read my name, phone and address well enough to call and mail me a refusal. When questioned about the illegibility, I was then told that I must not have completed all the required information. My second request has yet to receive any communication whatsoever, even though the records department advises that records will be provided within 5-7 business days. I've resolved myself that I will be forced to go through my doctor's office and dig through my old charts in order to find the information. I would have done this originally but I thought it would just be easier to go through the hospital's medical records directly. How I was wrong. It'll be easier to sift through my multiple, overflowing charts at my doctor's office myself than to have anything sent to me from the hospital's medical records department.
I also think poorly of the hospital and its affiliates for charging individuals money to visit admitted patients, attend doctor appointments, or for patients to park at the hospital while receiving care. Yep, you read that right. I understand a hospital not wanting non patients or hospital visitors parking in the hospital parking lots, but there are other ways to deter illegitimate parkers.

This month I plan to start delving through the old records at my doctor's office to uncover the truth of the identities of those residents and protect myself from potential future harm for those individuals. I hope that those residents are now competent practicing doctors, but I would never be able to bring myself to trust them again with my health and life.
Sometimes we must make extra effort in order to protect ourselves and help calm our neurosis developed during chronic illness and medical traumas. This is a survival tactic and with such efforts, we are more apt to survive.