Monday, September 20, 2010

Narrative Note

This past week has been turbulent and consistently inconsistent related to my Porphyria management. I remain in forward motion trying to get beyond this state of "increased activity" but seem to be having some trouble.
These "colicky" episodes are not unfamiliar to me... sometimes a "spell" can linger for weeks or months before I feel consistently well again.

What happens when these periods come...
I have some energy in the morning so I do normal life/family things...then I crash a few hours later...feeling like I haven't slept in a limbs feel like they weigh 500 pounds each...I drop everything I pick up and if I don't eat A LOT of carbs I get VERY irritable, intolerant of everything... then more nausea, pain, etc. ... I try very hard to eat the carbs.
The carbs do help calm my porphyria, but they don't take it away.

I have been trying to keep a gluten-free/dairy-free diet because I feel SO much better when I do (a lot less GI issues and a lot less joint pain/headaches). The problem with keeping this sort of diet is planning ahead and stocking the pantry with "Good Carbs". When I haven't been disciplined enough to plan ahead the "Good Carb" pantry is bare and "Bad Carbs" are readily available. I find myself eating processed foods, pastas, breads, icecream...anything to calm the internal roar of my "Porphyria Beast"... the result is initially positive with a Big "backfire".
So today I am trying to get back on track from yesterday, when I ate enough "bad carbs" and dairy to support a small village for three days!
Let's not even talk about my once (now doubled) size 6 figure...I do miss that, and am forever trying to get back into those jeans I keep in the back of my closet.

My husband believes that exercise cures all, and as a nurse I know that consistent physical exercise is key to a healthy lifestyle. During my "good stretches" I try very hard to exercise on a regular basis, but when the volume is turned up on my porphyria I struggle to exercise. There have been times that I try to "push through tough"... I get on my elliptical trainer and either my legs and feet go completely numb or I can't expand my lungs to breath, or both...VERY scary! Not the same as being unfit... because on any other non-porphyria day I can do an hour at hard levels without issue.

The Key Elements of My Porphyria Disease Management are:
1. Educating myself about my Porphyria and understanding how my body works
2. Adjusting my lifestyle to optimize well being
3. Making Peace with, "The Cards I Have Been Dealt"
4. Asking God to "hold my hand" mentally when the "ride" gets scary

I have had an extended "good" phase that lasted almost all summer, for that I am so grateful. Now that Porphyria's volume has turned up again... I am writing again...using writing as a coping tool with the goal of helping others... I am going to church again...sadly I seem to get "too busy" during my "good phases" to do the things that mean the most to me... what irony!

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