(This is essentially a rehash of a blog written in response to a prompt from the LAST WEGO Challenge – WEGO – we need more NEW PROMPTS and challenges!! I gave you a list of many – but I can come up with more to avoid duplicative entries every few months….)
A letter to my illness…which one? Take your pick.
Hey Messed Up Body,
What the hell is going on?
We survived a childhood full of sexual, emotional and physical abuse – but FOR WHAT? Yea, yea, we’ve heard it over and over – “You’re a survivor – look at all you’ve had to deal with.” (If it was such a big deal then where was the help for ME when I was suffering daily rape between ages 2 to 14, near daily beatings, and cowering in closets and kitchen cabinets with a mon=ther that was too meek to stand up for us and get us out of that situation. Where were the friends and relatives and teachers and social workers and activists for ME and my meek mother? No where to be found. I guess being a plain ol’ white kid make me not worthwhile.
Then I hear about the trauma theories, made popular by Bassel Van Der Kolk – it actually changes the structure of the brain; and trauma is stored in the body. If that’s the case, then where is the help for ME? My brain must be scrambled eggs by now. I’ve reached out to so many agencies so many times, even Dr. Van Der Kolk’s very own agency. What do I get in response? “Call you insurance company – go see a social worker! Well I have, and look how much good 30 years of counseling with about 10 different “social workers” has done for me – not much, if you ask me. It’s left me bitter, angry and full of hatred towards my self and my sick body.
Wait – is THAT it?
Does complete self-hatred make the body sick, or is the body sick because of all the crap t has been taking for 49 years?
I get why the ulcers at age 11. Makes sense. It was a cry for help.
Just like the self-harming that started around age 10 (see, I was WAYYYY ahead of the trend!!)
The migraines at age 12 – a response to the stresses of daily trauma or an actual symptom of something physiologically wrong inside my head?
The autoimmune stuff that began to surface, also at age 12 – as I always said to myself – it IS the ultimate form of self-hatred – the body against itself. Then why do I have to literally go into battle with physicians just to ge them run tests to prove that I have some very bizarre autoimmune blood markers? Why is it that you have made it so that doctors don’t believe me and want to brush me off to the side.
Where is MY Dr. House?
Why is everything you throw at me have to be something that doctors can’t figure out? All you do is pile on the stuff and that just adds insult to injury? WHAt about the pre-cancerous lesions I had on my cervix, oddly at the same time my coworker was experiencing the same thing? I watched her get sliced open, have the doctor tear up her intestines and leave her with a life time of bowel issues, not to mention she was rendered infertile, at age 26. Once again, I had to do a large amount of burdensome research at medical libraries (there as no internet back then) to again show that the standard of care for such things was simple laser ablation, and NOT invasive techniques like my poor co-worker endured. Then shortly thereafter, the mysterious ovarian cyst appeared that I actually had to write a letter to a senator to allow me to get the surgery that again, was the standard of care for such a thing – not a massively invasive 8″ incision the included the removal of my intestines and increased the risk of infection that was being offered to me by the local-yokel doctors.
What is with the genetic malformations in the nerves in my lower back and legs? Is it just a joke to watch me get disrespected by numerous doctors, surgeons, anesthesiologists, chiropractors and neurologists – to be called a “drug-seeker, ” to be accused of being out for “secondary gain,” only to finally find a doctor after years and years of MY OWN research that could image these areas and see the anomaly and surgically improve my pain? (Thank you Dr. Filler!)
Then af age 44, I began developing extra lumpy tissue underneath both arms, It was so very painful, and I couldn’t wear normal clothes. I got passed from PCP to NP and finally to a surgeon, who thank God, had seen the condition before – something that affects about 2% of the world population – axillary breast tissue. It was successfully removed and once again I had arm pits, but once again, that surgery wouldn’t have happened without my extensive research into the matter, proving it wasn’t cancer or a “normal” part of my anatomy. Then, 2 years later, my breasts suddenly and painfully begin to grow – 5 additional sizes, and then some. For no reason. MY PCP shrugged, and sent me another PCP, who sent me to se the NP that specialized in “lady parts,” who referred me to a surgeon who them sent me to a breast specialist and another surgeon. In the meantime, I strongly suggested, based upon the research I had found, that I see an endocrinologist. Surprise, surprise – she found a tumor on my pituitary that could be responsible for spewing out all the additional and unnecessary hormones that had been causing my breast to grow – and probably caused the underarm breast tissue to grow as well. In addition to the brain tumor that was found, a lump in my left breast was found a removed – benign, but nonetheless, had I not doe my own research and been proactive enough to insist that see certain doctors, then neither tumor would have been found.
Why is it that I am constantly thrown into the hands of doctors that don’t seem to know the meaning of Continuing Medical Education, or eve feel the need to keep up with the advances in medicine in their fields? ANd to get this poor care in the alleged “Medical Mecca” of Boston MA? What a complete joke.
The ultimate proof of how much YOU hate me, stupid body, is this Autonomic Nervous System Dysfunction, with the delayed gastric emptying, (which means being hungry and not being able to eat because my digestive system doesn’t work properly). he wildly labile blood pressure, the strange electrophysiology of what is allegedly a “perfect: heart (according to the cardiologists), the sudden syncope followed by hours of immobility and bradycardia, the horribly dry eyes and dry mouth, and the painful intolerance to cold resulting in livedo reticularis, the severe dry eyes and constant dry mouth. And, of course, the rabid unpredictability of it all.
I call it GPS disease….
Livedo reticularis
Honestly, this condition is the last straw. I can’t take living like this anymore. My husband can’t handle the issues either – he told me so today. He said he as “done.”
SO, thanks you lousy body, you’ve driven so manypeople away, and now you have destroyed this last relationship of mine as well? Does years of sexual abuse by many people lead to an autonomic nervous system disorder that waits 35 years to reveal itself? If so, why? And why NOW? Isn’t the genetic anomaly stuff in my back and legs, my brutal sleep disorder that makes everything else much worse (Delayed Onset Sleep Phase), the pituitary tumor , the shoulder problems, the totally weird way my body cannibalizes my teeth (resorption), the whacked out way my breast size keeps painfully increasing, and now the icing on this fallen cake – my hair is “officially” falling out – telogen effluvium.
(noy my head, but a darn close sample)
God dammit Body, why do you hand me problems that require ME to do all this research – and then do battle with my doctors just to figure out what is going on? Honestly, it feels as if YOU are torturing me on purpose. What the heck did I do to you?
I hate you and what you have done to my life, First, you let me be a filthy sex toy for my father, neighbors and later, so-called friends. Then you continue the degradation by afflicting me with the most bizarre illnesses you could conjure. We are on the same team, in case you haven’t noticed. You have made it so I have nothing left. You have forced me to do time in this bizarre prison camp for crimes I didn’t commit – what more do you want? Unless you are trying to tell me something..that there IS NOTHING to fight for anymore. Because I have nothing left to give. You have taken it all away. The food I give you feel like a waste of time and money. Why I continue to care for you is beyond the scope of my comprehension. If you were a separate entity, you would be jailed, punished and ignored.
Figure this out quick, or else you won’ ave me to torture any longer.
Misdiagnosed me...a complex patient looking for answers 