The Never Ending Journey

I am 25 years old and I was diagnosed with psoriatic arthritis when I was 8. I lost my childhood because I was pretty muh forced to grow up sooner. Not to mention treated like I lived in a bubble or made of glass. It didnt help that I was over weight most of my life...but with lots of motivation I lost 65 pounds which made a signficant difference in my walking. But i feel like i hit another fork in the road again. I started off with naprolen at age 8 also known as naproxen. Then methotrexate which almost gave me an ulscer. Then moved onto vioxx until it was recalled and for the last 7 years i have been taking Enbrel. Which saved my life. I was bound to my bed before enbrel. My wrists are deformed and my elbos are fused so my arms always look like a manican pose. I have barely any mobility in my neck. I often refer to myself as the tin man and when its time for my injection I call out for my oil can. But lately i can feel my body not responding to meds anymore. And i feel awful that i need pain pills. I want to not have to rely on unhealthy substances so i can go food shopping with out crying. So that leaves me feeling lonely and i found this website and read a few posts and felt at home in a sense. My friends and family try to empathize but they dont get it. I understand they dont want to treat me different but its more infurriating that when i feel like crap its unacknowledged, like when its nice weather out and noone understands that im still in pain. But when ppl around who have their health are achy i comfort them. Its a natural response of mine because i love my friends. im a psych student striving to be a therapist.I m just so sick and tired of being sick and tired....thanks for listening
HubbaBubba421 HubbaBubba421
22-25, F
1 Response May 19, 2012

that sucks.people around you know you are in pain.it is constant and if i was around some one in pain every day it is easier to ignore it as this is not a one time ordeal.maybe one day research can help you out.perhaps a new bone dr. a second opinion?the weight loss is a big step.how did you do it?and now a plan to keep it off,i know,been there,have to have a plan.

Thanks, and I see what you mean baydog, since my disability is chronic, its always in the back of my friends and families minds. I dont wish for special treatment at all. Just acknowledgment and compassion from those around me...but I am lucky to have a lot of great friends. :) ...And when I wrote this I was not feeling well and expressing my feelings seems to put me into perspective.

Unfortunately with my condition - there is no cure, it will persist to get worse I just have to stay healthy and active. Its not always easy. Since A. I LOVE food lol and B. When I am fatigue/achy the thought of working out is torture. But I did find through my struggle of losing weight when you do push yourself the natural endorphins that your body produces feels amazing....The way I did it was- I counted calories and went to the gym. There were days I really pushed myself, even hurt my muscles and back, but I made sure to balance it with rest too. You do too much with arthritis you will feel like you are being electrocuted in your joints. But sticking to 1200-1500 calories a day and cardio and a little strength training the fat melted off. I still want to lose my last 20 pounds..but you are so right keeping it off is what gets me! I have fluctuated with those pesky 5-10 pounds..but I know that motivation is everything and when you have that will power you just get that bug up your butt to do it. And if I can do it in all my pain then anyone can! :)