Did I tell you it was an odd day? Promise made was kept and for that I was elated, but it wound up being a "Pan's" telling of how it was kept. It wasn't what is was supposed to be but I'm not complaining.Either way I am glad as I came to expect the worse. I don't get disappointed as easily this way, or rather, I get disappointed but get over it much quicker than my peers. On top of the unusual day I have come to realize what people actually think of me in relative terms that they think I am far too ignorant to understand. I am no doctor nor make any claims to be but I have a better than layperson's knowledge of medicine. I'm classified as obese, no surprise there. But I get and instant kick out of how it is worded. The doctors treating me when I checked myself into a mental health facility expressed how "nourished" I am and well groomed. First off I am classified by my own team of doctor's to be rather malnourished because of my metabolic disorder associated with my EPP. Second, giggles, I wasn't all that "groomed" when going in for the anxiety I had and the depression and anger prevented me from showering and I was quite unkempt. If I was well-groomed then I hate to see what their spouses look like or what their homes do for that matter. I AM OCD, but I don't reflect ALL of the signs of OCD. Surprisingly enough, neither does anybody else except in extreme and the most rare cases. On average, a person who develops Obsessive Compulsive Disorder does so as a manifestation of trauma or depression(check). The OCD fits the individual. Some count, some organize, some take odds, some take evens, some are germaphobes and some are ritualistic and make patterns deliberately where there are none. I am a classical horder/counter/organizer with a small propensity for becoming a germaphobe and creating rituals and patterns. It's hard for an inpatient facility to determine the nature and full spectrum of a person's psyche without having seen their home life first hand and observed them in their habitat. So I was told I have "tendencies" rather than actual OCD, and being in a mental health facility without possessions and "stuff" it is most difficult to express a disorder of that nature.
You would be interested to know that psychiatrists and such seem to think that they can "re" diagnose the patient's data regarding other specialized areas of expertise not their own. I have EPP, they grant that, to which they are in disbelief (most people are), but they don't fully understand it and neither does my primary physician. But they will tell me, much more "learned" on the subject in question as well as my own personal experiences and the experiences of 100s of people publicly on display via the world wide web, that they know more and that I am "over-reacting" my disorder. They felt it was ok to starve me in there to "compel" me to come out of hiding from the light, as I do, and congregate with the other nuts seeking help. My choice was made clear by them, if I wanted to eat I would have to make my disease worse and if I wanted to cater to my disease I couldn't eat but I was NOT going to have it BOTH ways!:
from Brigham and Women's Hospital at Harvard in Boston, Massachusetts:
EPPREF(Erythropoietic Protoporphyria Research and Education Fund; Dr.Micheline M. Mathews-Roth
Note: she IS the leading authority on the disease and genetics in my specific porphyria: read on for more information...
Information on EPP for Patients and Physicians
A summary of the diagnosis, management and treatment of EPP.
A summary of the diagnosis, management and treatment of EPP.
Information on MedicAlert for EPP Patients
It is a good idea to be part of the MedicAlert system, because EPP people should be protected from the strong lights present in operating or emergency rooms and because of the need to avoid medications which slow down bile flow. This section contains information you should send to the MedicAlert group.
It is a good idea to be part of the MedicAlert system, because EPP people should be protected from the strong lights present in operating or emergency rooms and because of the need to avoid medications which slow down bile flow. This section contains information you should send to the MedicAlert group.
this highlighted areas means artificial light is and could be a threat in extreme cases (I will confess to being so pissed that I cannot find the document at this evening) read on for more information...
This document summarizes the diagnosis, management and treatment of erythropoietic protoporphyria (EPP).
The diagnosis of EPP is established by finding an abnormally high "free erythrocyte protoporphyrin" (FEP) test. Note that the zinc protoporphyrin test (ZPP) is not appropriate - be sure to order an FEP test. Quest/MetPath Labs (1-800-222-0061), Smith-Kline Beecham Labs (1-800-832-8355) and Mayo Medical Labs (1-800-533-1710) perform these tests. (Labs may call the test RBC protoporphyrin or red-cell protoporphyrin test.) Your physician's laboratory should call them to find out specimen collection requirements and shipping or pick-up instructions.
Annually, EPP patients should have an FEP test, a complete blood count and a blood chemistry panel including liver chemistries such as bilirubin, SGOT and SGPT. EPP people tend to run low hemoglobins, but not usually so low as to need treatment. To try and prevent anemia, patients should be encouraged to eat iron-containing foods such as red meat, spinach, baked potato with skin, red kidney beans, raisins, etc.. In an occasional patient, protoporphyrin causes liver problems, so monitoring liver function is important. EPP patients should also not use any drug or anesthetic which causes cholestasis (slowing down bile flow), and should also avoid alcohol. Women should avoid medications containing estrogen (birth-control pills, hormone replacement therapy), and men should avoid testosterone, as these substances also can have deleterious effects on an EPP patient's liver.
Beta-carotene is the most effective therapy to date for EPP: the following dosage schedule is recommended.
- For ages 1-4 years: 2-3 30 mg. capsules per day.
- For ages 4-8 years: 3-4 30 mg capsules per day.
- For ages 8-12 years: 4-5 30 mg. capsules per day.
- For ages 12-16 years: 5-6 30 mg. capsules per day.
- For ages 16 and older: 6-10 30 mg capsules per day.
Rarely does a patient need to take more than 6 pills a day - the US FDA did approve up to 10/day. The preparation we recommend, because it has the best bioavailability, is Lumitene (Tishcon - 1-800-848-8442). We do not recommend products containing crystalline carotene in oil because of its poor bioavailability, or algal carotenoid preparations, because of the potential presence of photosensitizers (chlorophyll and other algal products).
Please do not hesitate to contact Dr. Micheline Mathews-Roth if you have any questions.
For more information, email Micheline M. Mathews-Roth, MD or call (617) 525-8249.
I have had enough! I am so sick of people with their "hoity-toity" attitudes calling me a fucking liar, and I am not going to take this lying down...also note: I left Dr Mathews-Roth's contact information for any of you who would challenge my wealth of knowledge on the subject. She is a good doctor but their are other, more knowledgeable others in other countries and it has been daunting to say the least to find one who will skype, and in English, or a useful translation tool so as to understand them...I have seen their documentation. I have translated it using several different tools over the course of the last year and a half and combed for more information to keep abreast of the condition and my "chances" of survival beyond the damage that has been done.
EPP is a porphyria yes, but it is a METABOLIC reactioning one with little to no dermatitis or derma reactionary processes. The other porphyrias are not genetic and are mostly dermatological interference issues. I don't combust in the fucking light like the old stories (fables) would tell you of the Wamphyrii, but I feel like I do. It takes the same amount of time for me to develop blisters in the sun as any pasty-white "human" would take. But they will feel external pain associated with the skin damage where my body PHOTOSYNTHESIZES light into a toxic poison and floods my body with it. I feel thermonuclear from the inside out as if I was ON FIRE in a kiln. My blood is the carrier of the toxin and it creates a "shut-down" effect in my system which does not ALLOW me to eat. (I was accused of "lying" about my dietary needs, once again by ignorant, self-indignant fools) Have I said I have had enough?? Make a mental note about the beta-carotene then scroll down to where it discusses specific types to use and why you cannot use others....because they make me MORE photosensitive and reactive to (all) light...I have more in fucking common with foxglove and primrose than a human and I am equally becoming as deadly the more I have to listen to this blasphemy on their part. I would love to transfer the complete mental diagnosis (which was more of a physical accusation, but I will leave it for another time as it is too long.)
The plethora of misinformation in my chart is exasperating to say the least. I have fucked up far LESS at jobs I have held and been held accountable to a higher judgment, and these people are allowed to continue to practice medicine and treat the ill of mind and the ill of body and have no ramifications to their actions which have slandered, yours truly, myself and my family and assassinated my character in the medical world (I had some help in that and will take my own blame where it is due, but I have been through THOUSANDS of idiots with degrees that can go wipe their fucking asses with the piece of paper for all it is worth! And it does make one VERY untrusting and more of a hands on patient who is ACTIVE IN THEIR OWN PERSNAL CARE. This means I am their worst nightmare!) True to form, mobe pissed off the world again: SCOREBOARD: mobe-1,000,001/ doctors-zip!~mobe's love to her all and her all to her loves and a middle finger to the assholes who would call her a liar!
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