I am starting my first remicade infusion tonight while still at the hospital. I’m very nervous but hoping it all goes well. I am also being put on steroids once I am discharged to help my symptoms.
I have been relieved and distraught after my diagnosis. Relieved to have clarity, and very emotional and upset to have such a tough disease that can come and go.
I’m not very surprised because I figured it was crohns from having my last hospital visit 4 years ago, as well as many flares over those years. This has definitely been the worst once since my very first flare up…
I obviously have no clue how quick remicade is going to work for me, which makes it hard to know when to let my job know I can return to work; I guess I just have to play it by ear.
This forum has definitely helped me to understand what my doctor has explained to me about different treatment options and everything. It also has helped me feel less alone throughout this. No one in my personal life really understands what this disease is like to go through, i know they care and worry, but it’s hard when you can’t really talk to anyone about it.
I also feel as though I have had to hold very strong and put up a front for my parents and family to keep them less stressed and worried about it all. Which kind of sucks since I am terrified and absolutely heartbroken by everything regarding having this illness.
A lot of the people in my life don’t realize the difference between a chronic illness and being sore from like a hike or something… anytime i complain about hurting or aching all over, my boyfriend really likes to compare it to his legs hurting from walking at work. (We both work retail,so i know where he’s coming from, but it just makes me feel unseen)
My struggle is usually ignored by everyone until it gets to this point where i’m at the hospital for a week or weeks.
I know it is hard on loved ones too, I just wish they gave me more verbal support and listened better
I kind of went off on a tangent, but anyways, first infusion tonight.. wish me luck !