Born This Way-About Me

I was born with something wrong – something about not breathing properly. My mother never wanted to tell me what that was, but I know I had to be kept in the neonatal ICU for three days. That will always be a mystery as that knowledge died with her years ago.

I WAS someone before the chronic pain from a few genetic defects combined with an injury took “me” away. Even though I have been misdiagnosed for every illness I ever had since I was age 12, I still managed to get through life somehow, doing OK. Now, I have a myriad of miserable mystery symptoms that keep getting me tossed from doctor to doctor, without a diagnosis, without treatment. And as time goes by, the docs are not as nice to me – a medical mystery. So, basically, I am treating myself. No doctor really has any idea how to treat what is wrong with me. I am ignored simply because I do not have the value a full-time worker or mommy would have. I am considered disposable, and it is clearly reflected in how I am treated by healthcare providers. Ian told it is just something I “have to accept as it is part of getting older.” I am only 52.

I was intelligent, happy, and very active. I was a certified personal trainer. I was a competitive powerlifter (that actually set a World record)! While I was a full-time paralegal, I was also a full-time volunteer EMT IV Technician – putting in 30hrs/wk. (Yes, for free. That was the way it was in CT. I miss that more than anything else in the world. I was doing GOOD. I was IMPORTANT. I meant something to people.) I was also a police officer, and then, a paralegal – and when that got boring (even though the $$ was FANTASTIC) – I went back to school to pursue a career in medical research. I worked on degenerative neurological diseases, and later,  drug development/research field. For the first time in my life, I thoroughly ENJOYED going to work. But, the pain caught up with me and the medications I needed to keep the pain at bay took away my sharpness, my ability to do complex calculations, and my resolve to get through the day. I left the field – embarrassed and humiliated.

I have had autoimmune issues since I was age 12.

I have had 6 back surgeries – one to replace a torn annulus with a prosthetic disc, which failed and led to surgery 2, in which titanium fusion cages were placed (incorrectly). #3 was to try and fix the issues left by the improperly placed TFCs, #4 was to replace the hardware that was placed in #3 that my body didn’t accept, and #5 was to remove the hardware from #4 since my body was rejecting that as well. #6 was a neurosurgery in Los Angeles CA – no doctor took my symptoms seriously here in MA. The LA doc found that my major nerves in my lower body were genetically misplaced and improperly entwined with genetically malformed muscles.

In 2012, I was diagnosed as having an Autonomic Nervous System Dysfunction (aka dysautonomia). Of course, I don’t fit the little checklist in the textbooks so, none of the docs I have seen know how to treat my symptoms. They don’t even know what to call my condition.  My BP is low – then high – then low. My heart beats erratically at times. Sometimes, my stomach won’t digest the food I eat. I get random rashes on my chest, arms and legs. Occasionally, one (or both) lower legs will swell up twice their usual size.  My eyes will suddenly decide to stop focusing – everything becomes a blur. Oh – and I have near constant chest pain. (Oh – but all the “tests” show I have a “perfect” cardiovascular system….yeah, like I believe THAT). I never know from one hour to the next how I will feel. That makes planning a life pretty damn difficult.

I developed a pituitary tumor from being on opiate pain medications for a decade. This in turn caused hyperprolactiemia and I had to have a breast reduction in 2013 to undo the unnatural growth caused my the hormone disaster caused by opiates (oddly – the only research done on this is for MEN – they develop these issues regularly on opiates. I was the one that had to dredge up European research publications on this topic).

In 2011, I had genetic testing done and learned I probably had Ehlers-Danlos Syndrome. (I also learned that my “father” was not my father – but that is another story.) The geneticist told me I “looked like an EDS patient” when he met me – and the tests confirmed it. But – do I get any treatment or referral to any doctor that treats this disorder?  Nope.

I was most recently told that my autonomic disorder probably isn’t that, and that it is unclear why I have these issues. Period. And the doctor offers nothing but sarcasm and innuendo, but zero treatment. I doctor I interviewed as a potential PCP mentioned that my symptoms fit something called Cardiac Syndrome X (or cardiac vascular microspasms) especially since I have comorbid Raynaud’s and severe migraines. But – no recommendation and no offer of any treatment have been made. I was told to call the author of a research paper written on the topic. I have left messages but have gotten no response.

So, it now feels as if no one can help me. And more and more, its seems that no one even WANTS to help. I have a pile of medical “notes” that are very disparaging, inaccurately label me as a”polypharm” (I take ONE medication daily. ONE.), and offer nothing but innuendo that I am making all of this up somehow. I have even been questioned about possible illicit drug use. Seems as if these doctors will do anything to try and make me look like I am a horrible being not worth their time.

EXAMPLE: I have had 2 shoulder surgeries: one for torn labrum, the second for a torn retort cuff. The doc “put me back together” after the 2d surgery incorrectly. Its functional, but causes the should to roll forward in the socket. As a result of fighting this (and the EDS), my rotator cuff has torn again. I have seen 4 shoulder specialist. Not one of them will fix it, citing my age as primary deterrent. (REALLY?) I have been seeing a great chiropractic sports specialist that has helped me manage with my constant pain and subluxations. But this is not a permanent solution. What am I supposed to do?

You can see why I feel as if I am a nothing – a being without intrinsic value. (I don’t have kids – by intelligent choice. I am not employed and I am on disability. These facts seem to tell society I have no purpose, and without purpose, a person’s value to society drops significantly.)

Heck, even my hair despises me so much it has decided to just fall out. Again, no doctor can tell me why. (autoimmune, perhaps?)

WHY?

Pitting edema in my mysterious swollen leg

“Pitting edema” in my mysteriously swollen leg

20130507-213803.jpg

Where is my hair???

I struggle to sleep. When I finally do sleep, I struggle to wake up. I have a strong desire to be creative – I make things from polymer clay, gemstones, copper, brass and silver. Not the kid stuff. Nice stuff. And, I do photography – and I don’t use Photoshop. What you see is what I saw. How cool is that? But, I get easily discouraged when my pain and all my crazy symptoms get in the way of my creativity. Then, I miss holidays – and my website doesn’t get the attention it needs. I beat myself up for being in the condition I am in. I constantly have to pretend to be someone who I am not just to keep people in my life “happy.”

No one likes the real me. I have no real friends.

“She sleeps too much.” “She is always sick.” “She always has something wrong.”

Not one person will help me to get to doc appointments safely. What a bunch of selfish people here in Massachusetts.

I am frustrated beyond belief.

Comments
  1. StarDeSoul says:

    I’d like to talk to you more in depth…it sounds like we have had some similar experiences, and are birth looking for ways to fight back. I’m also a zebra, supposedly with #EhlersDanlos, but waiting on my genetic test results. I’ll try to find an email for you, or find you on Facebook. I’m at ZebrasOnParade.com and Star Nicole Squires on Facebook. Let’s connect!

  2. Lori says:

    Thanks for your comments. It sure helps to know people read what I write.
    I learned metalsmithing this past year. It really helps with anger about my condition, as I can literally beat the crap out of my screw-ups, or just melt them down and make something new! I am calling my new line of silver rings – “Anger.”

  3. I couldn’t have put it better! I am in a hot mess myself!!! Keep writing and I would love to hear more about your creative endeavors. I can’t seem to find the will to create as I used too and it is so frustrating.

  4. Hi Lori,
    My 78 year old wife suffers from chronic burning pain in her abdomen for the past 14 years and has yet to be acurately diagnosed. The blame was placed on Neuropathy and opiates were the medical professions answer to the problem since an intrathecal morhine punp implant was no help and a spinalcord stimulator, currently implanted, is not do the job either. There is so much about the human body that has not been learned and the only hope people have is that some poorly funded researcher will eventually make an inrode into your specific area of concern. I have even considered consulting a vetinarian with her problem but have not done so as of this time. In my opinion, pain is more prevelant than all the deseases combined but has to date, not warranted the research funding it deserves.
    The enormous market for pain and associated drugs, hampers the desire to push for cures.
    Wishing you good health, I remain an understanding reader of your situation.

    barry328@aol.com

  5. crshore says:

    I just want to tell you I feel the same way about myself
    and I understand.

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