Today is my second day in bed, out of work and out of commission.
Two days ago my "Colicky- Cranky" Porphyria began to transition into something a little more...
Now my body feels as if every cell has become a heavy-metal-pellet and I am, in a sense, a giant 10 ton human bean-bag!
Wow what a picture huh!
My limbs feel so heavy to lift, my body feels so weak I drop everything and can only walk short distances without rest... showering leaves me feeling as if I ran a 10k...
I slept almost 24 hours straight and the nausea, eye, ear, limb and joint pain are beginning to subside... Gatorade and Quiet, Dark resting spaces help a lot! Phenergan, Naproxen and Ativan have also helped. I have found that chocolate, peanut butter, oatmeal no-bake cookies are great for calming AIP too!
I saw this flare-up coming... I have been juggling life at top speed...feeling OK...not taking rest periods...becoming increasingly tired...until I became so fatigued that I couldn't even think straight. The world around me sees me doing "it all" and pushes harder...expects more and more... they can't see what happens on the inside...and sometimes they don't understand when an Acute Phase of Porphyria strikes...
They can lack compassion and become frustrated with me...
I can become frustrated with my own body...not performing the way I want it too...
Again...another lesson in letting go of my drive to be in control.
I am NOT in control and I must accept that AIP and I will coexist for the rest of my lifetime...
I have to be kind to myself, listen to my body, nuture myself...stop the negative self talk and educate the world around me... forgiving the ignorant for their unkind harshness.
This is not a new challenge for me... just another learning cycle.
What about enzyme replacement?
Porphozym by Zymenex... it appears to be available in some areas of the world...
When I am feeling a bit better I will research it some more.
As a nurse, I feel that dextrose IVs are helpful and a fairly easy treatment intervention when oral carb-loading isn't working
but...
Heme Infusions via a central line can present a slew of added risks, if the attack is NOT at the life-threatening stage and if the healthcare team has Little to NO experience/knowledge about AIP!
I feel like there is no one to take care of me...and I get scared.
My AIP specialist is several states away and hasn't seen me since my diagnosing visit going on 3 years ago! He is more of a researcher than a direct care provider...he says any follow up questions I have can be handled by phone... I feel unimportant and lost medically...as I stated in a previous post, my hematologist of 4 years doesn't even know that AIP is a disease of the liver...he is too busy to read the educational literature I provide for him.
Thus my quest to create the role of Porphyria Disease Management Nurse...so that others like me might have someone to talk to...a resource...an educator... Diabetics (another type of metabolic disease) have this type of system with the DNE (Diabetic Nurse Educator).
The American Porphyria Association does a terrific job of providing printed educational materials and advocating for Porphyria Sufferers in general... but due to liabilities cannot veer too far into medical advisement...
Well... I am getting tired out and need to rest...more thoughts to come!
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