Flying home for Thanksgiving will be the first time I've flown since things got really bad. I'm 26 and I set up wheelchair service for the airport. Never in my life did I think so much could go wrong so fast.
I'm scared to see my brother and mom. They haven't seen me since April and stuff just has gotten worse. The pain from flying is going to be so bad. 3 hours in a plane seat. Not only that but parking, the bus ride to the airport, even being on the wheel chair will be so exhausting. I'm going to be in so much pain. It's really hard to handle that this is happening.
When I originally went to my pain management doctor she said her goal is to get her patients to participate in life. But due to my age she is reluctant. I take 30mg of hydrocodone a day and 50mg of tapentadol xr and it allows me to do chores some days. Some days I can shower. I know I metabolize oxycodone way better than hydrocodone from when I got it at hospitals. I don't know how but I need to get her to understand I'm miserable. I've tried.
I'm just having a really hard day today. I'm so scared of flying home and back. I'm scared of my future. I don't know if I'll get my leg function back to how it was. I don't know if the IVIG infusions will help. There are so many unknowns and I'm stuck. My pain management doctor could help me more but she doesn't. I'm grateful for what I have but it's not enough.
In just over a year my entire life flipped upside down. I moved to Denver to hike, mountain bike, snowboard, play sports, etc. I wanted a new life and now I can't do any of that. I try to not think about the future and just go day by day. I don't know. Simple things are so hard for me. I was so active, I did so many physical activities. I just walked from my apartment to the amazon locker to pick up a package which is a 3 minute walk each way and that hurt and got worse.
I don't know how I'm going to live the rest of my life like this if the IVIG doesn't work and my pain management keeps on being reluctant on my pain meds. I can't live life like this. I'm so embarrassed. Why did this happen to me. Every simple thing is so hard like unloading the dishwasher or laundry. I keep my clothes in the dryer and just take them out as I need them instead of folding because I dread it. It can cause so much pain. I just don't understand. I can get complete paralysis of my legs just by walking up or down a small hill where they seize uncontrollably. Or even laying on my back and lifting them up will do it.
I'm having such a hard time today. Everything I once knew and did is gone. My entire life. It's even affected my lungs. Some days I simply can never catchy breathe. It's hard to breathe some times.
I just don't know if I'll be able to hold it together when I see my mom. I've barely been holding it together recently in general. So much has gone wrong and it makes no sense. I just want to go outside. I want to go make new friends. But I can't. It's so embarrassing that this is happening to me. I just don't get it. Some days i can barely even watch TV it's so bad. I just want to be normal again. I want to have my life back but I don't know if I ever will
I had extreme nerve pain resulting from complications due to cancer surgery. Tried absolutely everything, was on a large dose of methadone daily just to be able to function at all and take care of my four kids. There were certainly times where I had no hope of anything helping. I got extremely lucky with the implantation of a TENS unit in my spine to effectively cause neural static that would hopefully block some of the pain signals. I had it about a year before I realized one day that it wasn't just helping when it was on, but even if I didn't use it at all. That day, when I realized that the pain was low enough that I could stop taking methadone I just straight dumped all my pills. That, of course, was incredibly stupid and could have killed me from the withdrawals, but in the end was liberating. A few days after that I woke up to the pain being almost gone. I was able to walk normally without searing pain in my legs. Keep in mind this device was not supposed to cure my condition, just provide temporary small relief.