PORPHYRIA MEANS FRUSTRATION
It took me 23 years to get my diagnosis.
That was in 1989.
It had been all of those years of not being diagnosed, and being frustrated time and time again when being told that it was all psychological.
Did I get over the frustration of the disease with diagnosis?
Even after my diagnosis I have experienced frustration. I did get rid of the frustration of not knowing my diagnosis, but enter here the new dilemna.
Everytime I go to the Emergency Room for Intervention Therapy I get someone new. A medical professional who is unfamiliar with porphyria, or who know about is and has pulled my earlier charts and sees the "psychological thing" all entered as diagnosis.
This has happened at least two dozen times in the last 10 years. When it happens I am frustrated of course, and because of the frustration of trying to get help during the onset of the acute attack I begin to cry. I have been told that I am "emotional" and that just proves the point that my disease is "psychological".
Another twist is that a couple of the Emergency Room personnel have refused me Demerol for the pain. I had made the mistake as asking fot the Demerol immediately because of the greatness of my abdominal pain and the waves of nausea overcoming me. 0ne ER doc told me that it would be "a cold day in hell before he would give me a narcotic".
And then there is the myth, "Porphyria is so rare that you can not possible have it!" And the nurse who believeing that I had the disease said, "You must be a part of the royal family, how nice!"
Then there is the original myth, "Well porphyria is a mental disease and there is no need for demerol. You don't need to foster a narcotic addiction from taking demerol without a physical reason."
Frustration yes. And the PN and seizures? Yes after seven neuros, they all say it is impossible to have seizures and PN and not have it show up on their various time consuming and expensive tests. The past two years however have been fine there since I had a neuro consult knowledgeable in porphyria which wrote at length in his dcumentation that paralysis and low grade porphyric seizures DO NOT show up on the standard neuro testings and MRIs and CT Scans.
I know that my PN will not be permanent unless I become chronic. If I become chronic then the regular neuro will be able to find the PN in their standard tests. 0ne test they do not run unless they are knowledgeable in porphyric poly neuropathy has something to do with actic acid. My porph neuro specialist confirmed what we all ready knew through this procedure.
How to recognize the symptoms to avoid major acute attacks. Finally after two years I was able to figure out most and before trouble starts building I go to the hospital and demand my IV glucose and demerol and hand them my own personal photocopies of documentation. I also tell them that timing is everything and that I will not pay charges for any wasted time involved in waiting for someone to start an IV or for a lab to do a draw. I have it written and signed and I present it to them at the same time I am admitted.
Other frustration? Yes!
I have the brain fog that is typically porphyria. Sometimes if I have not had enough rest I get the porphyria confusion. I know then that an acute attack is setting in. I become irritable and argumentive.
I now have disciplined myself to get plenty of rest and to carbo load when this starts happening.
In the Emergency Room or Hospital Admit 0ffice I hand everything to them all ready filled out and do not begin a conversation. I have found that I usually move from my typically low key quiet passive self to a more assertive and at times aggressive self as the acute attacks sets in. Pain, confusion, nausea, and loss of mobility completely frustrate me and so it is best for me to keep my mouth shut and hand everuything needed to the medical professional all written out. These bits of information are all done during times of remission when I am upbeat and thinking squarely!
Porphyria causes the body and mind to work in ways that are abnormal.
Porphyria is a lonely disease because other people cannot understand its anguish. Even the medical professionals have no idea the anguish a porphyric feels. Therefore most porphyrics have to learn to be strong and to suffer alone.
And will there always be frustration? Yes, probably!
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