Quantcast

Living with Polyneuropathy CIDP, GBS, & CMT

New Member checking in

Hello everyone! Um, I guess I'm not really sure what to say. I have CMT. I was diagnosed when I was 30, although I had known something wasn't quite right with me for years, however, none of the docs that I saw really wanted to address it. At the time of my diagnosis, my son was 17 months and my baby girl was just barely 2 months. I was devastated to say the least. While this is a genetic condition, I am the only one in my family that has it. I decided at the time of my diagnosis that I was just going to ignore it and go on working and living and everything would be fine and nothing would change. HaHa. Fast forward 4ish years. I was/am a CNA at a county run nursing home. I worked full time, 12 hour shifts, in the rehab/hospice unit. I LOVED my job, I was good at my job. I'm to the point where I can't do my job safely anymore and the realization is absolutely devastating. I have been on a medical LOA since right before Thanksgiving. At first it was awesome, it felt like vacation, mostly because for the first ever I got to spend Thanksgiving, Christmas Eve, AND Christmas Day with my family. Now that we are past the holidays, the vacation feeling is over and now I just feel kind of bummed. Don't get me wrong, I love my family. I love that I get to do the getting ready for school in the mornings, and bath time, and bedtime every day now. But I'm kind of going stir crazy. Being a stay at home mom was never part of my plan, and while I love being here for my fiance and kids, I feel like I need to do something more, something just for me. Maybe that's selfish. I'm not sure. Physically, I don't have any braces or anything like that yet. I'm doing physical therapy once a week, which is exhausting but kind of cool. I guess I'm just looking for a connection from this group. I don't know anyone else who has CMT. I don't know what else to say at this point, other than thank you for allowing me to be a part of your group.