Ahoy Fellow Fathomers, I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I found out on June 19, 2013 the reason for many of my ongoing health problems is because I have systemic lupus, also known as SLE.
Thank you for listening, each week I will have a new installment chronicling my journey. Please, please feel free to comment, write, share. I hope to use this forum as a help to all of us, no matter what pain you are experiencing. You may also send stories to me via finlessbook at gmail dot com. I will respect your privacy and maintain your anonymity, if you so desire.
Hugs for today …
Ugh, drank 4 beers on a Saturday night over the course of several hours. I know better than that, but, was having such a fun time with friends and family. The axe returned fiercely between my eyes about 11:30pm. It didn’t leave until sometime the next afternoon. But, the lupus flare party didn’t stop there.
Imagine someone tying a cord around your neck and squeezing just enough to allow you to barely breathe, your head feels like blood is rushing to it, then it’s cut off- like holding a headstand too long. I remain on the verge of passing out. I cannot hold my balance for long, I cannot always form a complete thought and I’ve lost focus for anything requiring much introspection. I lie in bed afraid I won’t wake up when I finally do fall asleep, which doesn’t come very soon and isn’t restful when it does. I’m plagued by crazy dreams, interfering with much needed repose. I have moments where I feel like I will stop breathing and my heart will stop and I must will my organs to keep pumping, as if I’m slowly fading away.
Each arm and each leg feels like someone tied tight cords around them where connected to my torso and they feel swollen and constricted as they reach toward my hands and feet. It hurts to bend and and feels like my limbs will split open if I do curve. My skin feels like someone took sandpaper to every inch and scraped just enough prickle and sting and then random needle stick sensations plague every inch in haphazard pokes.
Exaggeration? No, it isn’t. This is how SLE affects my central nervous system. Today I’m in day two of a flare and feel helpless. I only hope it dissipates by the end of the week.