What I don't like, yea, even DETEST is to be a project.
Consequently, I have wrestled with whether to simply be absent without explanation - is that A.W.O.E. (as is "Eh, WOE is me?) - or do I have enough confidence in our relationship to let you into my world? Will I cause you to think of me as morose, a flop, a pariah, the one to avoid at parties because all they can talk about is themselves and their latest malady?
It has been my privilege to know people with the direst, even fatal, health issues who, when you visited them, managed to minister to you and leave you with a smile. Obviously, that was not true on those really awful days that serious illness invariably brings and then it was my privilege to try and offer comfort. But as soon as they could, they were encouraging others and drawing attention away from themselves. This seems to have everything to do with their measure of faith. They see life in the bigger picture. They know where they're going when they transition out of this visible world. My level of illness, in its present form, does not seem to threaten my life and yet no one can give me a prognosis.
I struggle with a nerve disease that causes me small muscle loss and rotten pain at times. It is idiopathic meaning, after countless doctors and tests, they have no idea what causes it. It is progressive. So far (eleven years) it has been slow most of the time, though never leaving me pain free or without symptoms. Occasionally, for no known reason, it rachets up and just takes out muscles at will and leaves me wiped out. It affects my legs, feet, tongue, soft palate, and throat. For the last three weeks it has been escalating.
I have done what I can but the medicines that help to make the pain tolerable cannot be handled by my body. A response within me causes my body to build porphyrins when I take them. Porphyrins are a blood byproduct everyone makes and most people can clear, but I can't very easily. These porphyrins have the potential to cause further nerve trauma, as well as liver and spleen damage. I've gone through two of those episodes already and they left me very ill and pretty wiped.
The pain is intense at times and I am only able to squeeze out four or five hours of broken sleep at night, for weeks on end. That, of course, makes things worse and the cycle continues. My throat is most affected right now making me feel like swallowing is difficult - and my feet and legs feel as though I've laid them on the barbeque. Not a pleasant sensation.
And I wish it didn't but emotional upset strains my system and always increases symptoms. (One reason I love the upbeat and like to laugh!)
Friday night, I came up against a man in our circle who is in charge of some important functions. He made decisions directed at me which caused me to miss a pivotal night in my daughter's life. It was a night I had longingly anticipated for many years and had dreamt of enjoying. The moment passed and it is gone to me forever. What's done is done. But it did not pass without my grieving it and spending a goodly amount of time in tears. And, of course, that made all my symptoms worse.
I did get test results back from the doctor and have been given some instructions that are time consuming. This will cause me to have to take a little time away from blogging. That means I may not visit you nearly as often as my heart would desire though I will post as much as I can. If my failure to visit you would keep you from visiting me as well, I completely understand. The blogging world is symbiotic and we all try to support one another. I won't be able to keep up with my part for a bit. I will drop in sometimes and as often as I can but it won't be nearly as often as I want to. Please forgive me in advance. I love all of you and truly look forward to reading each of your posts. All together you compile the most fantastic magazine that exists!
Anyway, just think. With any luck, you skimmed this article and missed most of the ridiculous details. Had we been at a party together, I would have had you backed into a corner and you would have been longing for a meteor to land on the house. Now you are free to run away screaming.
I promise to be back with my attempts to entertain you and TRULY TRULY do not intend to, nor do I WANT to talk about my health. Who of us doesn't struggle with SOMEthing (as I've said before)? Life is hard at times. But it is also RICH! Thank you for loving me and visiting me and please know that you are one of the brightest spots in my life and I PROMISE not to make my health a regular feature. It may bore me even more than it does you! (Okay, I realize that is NOT possible. Insert retraction here.)
MUCH Love,
Robynn
Copyright 2009
