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.

Monday, December 31, 2012

Counting on the Best

life's a polyp

In honor of the year closing and the tradition of new year's resolutions, look back on the year and consider what you would like to be different in the year to come. Many times an individual will use this time to turn over a new leaf, start or stop a behavior, or make progress on a long time goal. I'm not drilling on the same old boring notion, rather since this is a health blog, I'm going that direction.

Has the year been a good one for health or has it been full of illness? For those of us with chronic illness, we wish for every year to have good health. Let's also take the time to add on some new or continued behaviors to encourage good health. Perhaps exercising, eating healthy, reducing stress, following our doctor's recommendations better, complying with our medication regimes for a few examples.
I believe the mind and the body are connected, an issue in one area will appear in the opposite. Not only is taking steps to protect our physical health important, but so is protecting our psyche and mental health.
With chronic illness, we may not be able to change the diagnosis or even the prognosis, but we can take steps to improve the present or delay the inevitable. That can be physically and mentally. So let's do that. Let's make everyday count, actually do it instead of say it.

This can be very difficult when we don't feel well, every step toward a goal makes a difference though. Often times the more active we are, the more our energy level increases and the better we feel physically than when we are sedentary. I notice this in myself when simply working. Periods in between jobs or during breaks, my symptoms tend to flare up even to the point that it's a wonder I'm even able to function for half a day. But when I return to work, my symptoms lessen and my body regulates itself again. Simply because I'm doing something. If you're feeling depressed and it's making it difficult to interact with others and enjoy activities, remember that even the smallest effort to return to previous enjoyable activities is a step forward. Depression sucks us into it's spiral, it affects our brain's chemical balance and we simply lose interest in once enjoyable things. Our mind wants us to stop doing things, our thoughts enable that behavior. If we change one thing - our thoughts, emotions or behavior - then the rest will change. It's a cycle and it can be broken.

Set your goal, find the information and support to help make it reality. We've all been there at some point or another and we're all there in it with each other. Together, we can make changes or continue current practices and welcome the new year with high hopes and actions.

Sunday, December 9, 2012

Mind Tricks

mind tricks life's a polyp

The mind is very powerful and there is a lot to the mind that we don't know and may never understand.

When going through any traumatic event and experience an individual tends to dissociate from the situation in order to escape and cope with the trauma. After repeated trauma, this becomes increasingly easier to do. It's a defense mechanism and even necessary to protect the psyche from further trauma. This not only distorts memories of that time but I think it affects future memory as well, not because of a physical reason or issue but out of learned tendency our minds memory ability is altered.

I'm very detail oriented and because of it I remember a lot of details and can do so for years, but not for all things. Sometimes when I look back on my life, the past feels very surreal and is merely a haze of memories that resemble looking through someone else's mind rather than my own. I have a handful of memories of life prior to my first surgery and that is all, I can only remember about 5 friends from my childhood and barely remember any events. I don't really remember events even with my family, I just know that they were there and I have a strong connection with them from times spent together, I just don't remember what those times were really. As my cognitive development progressed from child to young adult, my memory ability greatly improved but it tapers off again once a few years have passed after an event, especially the chronogical order of events. I don't think this is normal for everyone and I don't think it's a result of age. I noticed these difficulties even during my high school and college years.

 Not only does the mind allow for memories to become hazy and distorted as a matter of protection, it also allows for memories to become too realistic reminding us the past did occur. It doesn't take very much for me to recall past pains and physically feel future pain. The feeling of needles, tubes, knives, stitches, staples and all the things that accompany these instruments of healing and torture are quickly remembered and felt even years later. I physically feel the IV in my hands, the central line in my chest, the NG tube in my nose, my abdomen being pulled as muscles are used and the stitches and staples hold my body together against the force. Even now, thinking of the words to type is issuing a call to the past and those demons are clawing at the door to flood my body and mind with those memories and that pain. Before any medical procedure, test or even shot, I have to mentally prepare myself for it and the pain that is to be inflicted - that pain that is all too familiar, at times changing, but never forgotten.

The mind can trick us into false senses of security or can rip us from our safety and plunge us back into tortured memories of the past and the mind brings along our physical body for the ride. That seems to be part of the game though, it's a constant balancing act we must play to maintain sanity during an insane trauma.

Wednesday, December 5, 2012

Medication Mix Up

life's a polyp

I've been getting brand name Lomotil for years now for my SBS. In high school, I had to take 8 tablets a day - the max amount as well as Sandostatin injections in attempts to control the SBS. After about a year or more, my SBS started to become better controlled. I started taking the generic form of Lomotil until the formula changed and I was forced to use the brand name and have been doing so for years now. Well...I got a new order for my Lomotil and forgot to mark not to substitute for generic, and so I ended up with bottles of the generic form. What a headache trying to get this corrected! My mail order pharmacy wouldn't exchange the medication, although they offered to dispose of the medication for me...because evidently I wouldn't know how to flush a toilet. But that's besides the point, the real problem was yet to come. The mail order pharmacist said she would change the order to brand name and send me brand name medication. She did not tell me, even when asked, that actually a new order would be required and would be faxed to my doctor's office to be completed.
Unbeknownst to me, an order request was sent to my doctor's office and because I didn't know this, I wasn't able to warn or notify my doctor's office and ensure it was written correctly. Because anyone with any experience in the medical field, as a patient or employee, knows that a nurse typically writes the orders and obtains the doctor's signature and most doctors trust their nurses and will sign almost anything placed in front of them. doctor's nurse isn't the best to trust for this evidently. Because I ended up with exactly a 23 day supply for brand name medication with 5 refills instead of a 90 day supply and without any extra medication. My doctor writes my medication order for the max, in case I need more than what I normally take, so I'm usually actually able to stretch a 3 month supply to last me 6 months, thereby saving me more money. Well, this 23 day supply bottle at  a time cost me twice the amount of the actual 6 month supply my doctor writes for me. See why I was livid!?

Some good did come of this outside of me being forced to spend way more money than I normally do. I tried taking the generic medication to see if it would work for me again. And to my surpise and an unknown reason, I've actually been able to not only take the generic medication, but have been able to decrease to only taking 1 or 2 pills a day! I can't believe it and it makes no sense because I require no less than 4 pills of the brand name in order to function, which is a stronger medication than the generic.
So I'm hoping that this trend will continue and I'll be able to return to the generic form and next time I need a new order, I'll be able to intercept the nurse and prevent her costing me an extreme amount of money.

The lesson? Always remain involved in your own healthcare, communicate at all times with not only your doctor but the doctor's office staff, it doesn't hurt to try changing up your medication sometimes, and sometimes no matter the situation, you're going to get screwed over a bit but that doesn't mean you can't or won't come out on top in the end.