Day 1 (April 1) – Getting Started!
Why you write – tell us a little bit about why you write about your health online and what got
Well, up until I got online I thought I was the black sheep of the health world. Every time I spoke to someone and told them I had chronic pain, they assumed I had a fibromyalgia (Nothing against it!! I was just bitter at the time) as it is a common condition where I live. Explaining to the person, No I have chronic migraines then would take all their “sympathy” (lets call it) away because “everybody gets migraines” and “it’s just a headache”. Where other chronic pain conditions, you have widespread pain…. so I clearly was just a wuss in their minds… Well I eventually got to my boiling point and had to find others like myself, and I found myself online.
Starting out in the “spoonie” community I knew there was a lot out there I was missing and there was also a lot of supports I was also missing. Learning Christine Miserandino’s Spoon Theory was a GAME CHANGER! I encourage all of my readers followers to read this! I will post the link below to her blog, and the specific entry!
On to my actual condition. I suffer from chronic migraines, 24/7 constant pain.. yup you read it right… It started in 2007, and its been pretty continuous since then. to date I’ve been on over 25 different medications stringing from antiepileptic drugs, antipsychotic, beta blockers, blood pressure medications,NSAIDS, and numerous more… I’ve had every single opinion from doctors.. even some pretty nasty ones. Like “its all in her head” or “she just wants some drugs” (to which I laugh.. because who wants antiepileptic drugs to abuse….? they aren’t fun to take…) to “she most likely has a brain tumor, bring her back tomorrow for a CT scan try to get a good nights rest…Tomorrow will be a long day” I have definitely had a long journey, and I know that I am not done it yet. Knowing that my pain could subside any day, which I have been told is highly unlikely… gives me hope some days, but mostly I know that this will be a permeant disability that I must learn how to live with.
Starting with the online community has given me hope. It has given me the idea that there are people out there living with this condition, and can actually live a normal life. I don’t know where I’d be today without you guys. You guys are #chronicallyawesome
The spoon theory Link! She created it! and it is amazing!!