Letter to Doctors April 4 2013

Dear Doctors…

I have been sick with this mysterious illness for 21 years, that is 2/3rds of my life and I want answers…

I can’t fully trust anyone right now, not my husband to properly translate for me all that I am saying, not the lower level doctors or family doctor or even the specialists to really hear what is happening to me

For two decades I have had doctors, therapists, family members, co-workers, school faculty, friends and so many others… all tell me I am faking, it’s not real, it’s all in my head

It’s not, I have always known it isn’t but people don’t want to believe and it’s easier to make the person asking for help… to wait

From the age of maybe 4 or 5, I have felt pain differently… best example is having the nurse in the dentist office half sitting on me as he drills into my tooth to fill a cavity. He has numbed me up and thinks I am just scared… but I am not numb enough and I feel everything he does to me

From nearly birth, I have never liked normal sleep routines, nap here and there as I need but fixed sleeping hours are not for me

From nearly birth, I cannot tolerate eating breakfast, it makes me ill and I need to be awake at least 2 or 3 hours prior to eating any food without suffering

From age 1 I started roller skating, later on ice skating, bike riding, swimming, volley ball, I was a very active kid… now some days I can’t walk without a cane

From nearly birth, I have been conscious… watching others, interacting, creating stories/drawings, active imagination, high intelligence, speaking early, walking early, starting to learn math long before going to school.. even at age 1 I could paint a stick figure in a dress and knew it needed a frame so painted my own onto the canvas or drew rectangles with squiggles inside that clearly resembled road signs or by age 2 I could tell you what the word precocious meant

I was smart, my mother genius level intelligence, my father equally smart with mental disorders that held him back… but once I got sick, my memory started to go, I couldn’t focus, I had to struggle to keep up and now… 21yrs later… I can barely do math, I loose information, if stopped during a conversation I can’t always start it back up where I left off

My brain is going and it scares me… I am only 33 years old

I wake up in the morning and some days my body hurts like I have been beaten up, some mornings I wake up and feel I am 90 years old and can’t move easily, can’t think, can’t function

I have been sick for so long I honestly can’t remember how it feels to not be in pain…

I have had so many symptoms, many due to environments and some stopped after my tonsils were removed, some medication and foods made things worse but my symptoms change… it shouldn’t be surprising, if it was a short period of time, things would stay the same but this has been going on for a very long time

So my symptoms today may not make doctors as concerned as if they had seen me with the original ones

I have always had a low body temperature and low grade fevers… if it stands to reason that my body functions differently than the “standard norm” … why doesn’t it make sense that perhaps when I have test results which are slightly too high or slightly too low for NORMAL people, that maybe for me it is actually more of a serious impact

I am terrified, to the point of Post-Traumatic Stress Disorder, that I will continue to suffer and not have results

I am terrified I will never work again and will have to depend on the charity of others to exist…

I am terrified I will never have a life

I am terrified that young ignorant doctors will ignore my information and kill me

I am terrified that older doctors will continue to ignore my suffering and treat me like I am a hypochondriac

I am terrified that this is my last chance to have an answer, to have a life

I am terrified that no answer will be found and I will die young from neglect of those supposed to help me

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