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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: HEAD FILLS WITH BLOOD WHEN BEND OVER

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Skin › HEAD FILLS WITH BLOOD WHEN BEND OVER › Reply To: HEAD FILLS WITH BLOOD WHEN BEND OVER

July 3, 2012 at 9:31 am #2525
Give My Daughter the Shot!
Participant

I thought of another thing. Over 20 years ago, I had a good PA (or NP) tell me to listen to my body and that my body was smart. That has stuck with me over the years in a big way. I was very confused by what I was asking her about (at the time) and couldn’t understand why I was starving to death while breastfeeding – MORE voraciously hungry than the final weeks of pregnancy?? Didn’t make sense and I wondered what the deal was. I was shocked when she told me that it takes so much work for the human body to manufacture breastmilk. She said that there are also body signals involved in true cravings (not just an excuse to gorge and calling it a craving). She said that pain meant something too and that ‘your body is trying to tell you something’. I’ve never forgotten what she told me and always honored her words and followed that philosophy of listening to my body. Harmony, synchronicity, and a sense of well being were the result that I always felt that I’d achieved in doing this. Rebecca was her name and she was awesome!

Fast forward to now…. What a far cry! Over these past years I’ve had to be mentally forcible with an unacceptably and senselessly uncooperative body in an attempt to complete the most basic of tasks. QUITE A FEW OF WHICH, INCLUDING LEANING, BRING ON A PLETHORA OF, IMMEDIATE AND DREADFUL, DISABLING SYMPTOMS. Could NOT make ANY sense of what my body was doing or refusing to do! WHEN I BEGGED FOR MEDICAL HELP, THE DOCTORS PATHOLOGIZED ME IN A VAST MULTITUDE OF CRUEL WAYS! This perpetuated my dischord with my body and may have even been the start of my conflict between my mental will (which is/was/always has been very strong) and my physical deficiencies/disobedience of my own will. Over the years of doctor’s humiliating, gaslighting, doubting, blatantly disbelieving, rolling eyes at, challenging me – and I’m sure more. Refusing diagnostics, refusing referrals, refusing help, etc. ANYHOW, THE PAST YEAR OR TWO I’VE BEEN IN DESPAIR AND SAYING THAT I CAN NO LONGER LISTEN TO MY BODY. True enough, my brain and body are WAY outa sync. I am just now realizing though… one of the main reasons that I cannot listen to my body is because THERE IS NO POINT TO EVEN PAYING ATTENTION – NO DOCTOR WILL LISTEN TO ME! Why would I listen to my body, go for medical help and endure the ensuing abuse by admitting to the multitude of impossible symptoms that I am sure to be mistreated for speaking of. IT’S NOT ALL MY FAULT HERE – THE DOCTORS AREN’T FOSTERING AN ATMOSPHERE WHERE I AM ABLE TO BE ATTENTIVE TO MY BODY! I’d better ‘shut up about it’ lest they get the social worker, “Sit right here while I get the social worker” after making me wait for over 3 hours (my last MD disappeared and this was an unexpected replacement that I found out about when I got there) to find my records (while I had a copy of with me). Yeah, I needed something – to get the heck outa there – 3 hours is too much for me even if it is just sitting there.

I’m stuck blindly researching like a maniac for all of these horrible and alarming symptoms and diagnoses that I experience daily – then I have nobody to tell (for the most part). It’s hurting me a LOT to be without a doctor of my own who wants my best interest and to nurture my health. I’ve always taken very good care of myself, medically among other ways. I’ve always had a lot of value for humanity (myself included) and always thought that this was just an expected human trait. I know now that not all people are the same and not all people are well-meaning. It’s tough to even distinguish the character of many in the medical field when so much is so far askew and causing so many problems. I can’t figure out who to even try to teach versus who to avoid altogether because I am under so much duress with regards to my health.

Just an epiphany, basically, that the primary reason I cannot listen to my body is that doctors act as though I’m a liar (or WORSE) when I convey the info. Secondarily, I am frustrated by my own lack of function. I actually NEED to conserve scraps of energy and this internal ‘battle’ does not help. I know I need to accept and sync – as discouraging as it is to lower my physical expectations of myself to the necessary level. Fighting, forcing, deluding, trying to act like it’s no big deal, spending days failing at trying to think about something else – just isn’t working, never has. I’m going to relay this info in counseling where the importance of my acceptance of my health is being explained to me over and over again. It’s not so much me that is non-compliant. Just sayin…

I need help and a medically inclined brain to participate in my comprehending, problem solving, and maintaining with regards to my health. I need to figure out which body system is the worst offender and try to salvage what I can. I know this stuff fits together, it’s just a puzzle with itty bitty icky pieces

What about ‘First, do no harm’ – isn’t that a staple in the medical community. I just had an idea, while I’m not a big ‘attorney type of girl’, we do have a family lawyer. I wonder, if I could have a brief (like that’s possible) letter of explanation regarding my condition drafted and request my doctor’s participation in slowing the degeneration process. IS THAT WEIRD??? Stupid idea??? Could we all, attorney or no attorney, have a statement that puts the doctor in a position of some fragment of liability for our care and proper treatment of us??? Again, I do have a heart and if the doctor isn’t interested in something complex, they could have the information/opportunity to turn us/me away versus allowing me to attend useless appointments and treating me like crap?! I know I’m a valuable human being and I’m so sick of having to struggle to recover my self esteem after attending a medical appointment. It’s taking longer and longer to upright myself after a ‘bad appointment’. Meanwhile, I’m feeling worse and worse physically too.

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