My name is Ashley and I suffer from CP all over, but mostly thru my back and legs. I had a failed Lumbar Fusion in 2004, and have been struggling to "be tough" ever since. lol
I recently had to come off my pain meds and am Med free for the first time in over 10yrs. And I'm really really struggling with "feeling my pain" naturally for the first time in a VERY long time. Part of the issue is that I no longer have health insurance...which stinks, but my wonderful pain management dr was basically driven out of practice by the insurance companies.
It's just super challenging for me right now. I have 2 young kids, 5 and almost 4, no family within 10 hrs drive of where we live, and very limited income since my husband started a new company. Im lucky he's very understanding, but I feel like lately all I do is complain to him, and if I were him i'd be soooooo sick of it.
I don't know anyone personally who is going through what I am going through. that makes me feel like no one really understands what its like. just getting out of bed is a fight most days! I need to hear that other people know what its like to feel guilty almost every day because I can't get down on the ground and play with my kids. I usually don't want to even move, to be honest. I thought that me coming off my meds would be a good thing, but i'm finding it so so so much harder than I thought. I have ALWAYS tried to "push through" my pain, work hard enough and I can just pretend its not there...and with Pain meds that worked! (most days atleast) But I think in all reality I ended up damaging my spine even more, and now I am paying the price.
Sorry this is so long, I have had this pent up for a while...lol..hope to hear from u guys soon. thanks for reading