When you’re young, when you’re a little child, the idea of hope is a lot different from an adult’s. Hope means so much more, or less depending on the way you look at it when you’re grown. As a child, hope is simplistic. Hope is basic wants, needs and emotion. You hope you don’t get a mean teacher. You hope you get to play in the first snow of the season. You hope you can go see a movie. Even in the tougher situations, you hope your parent heals, you hope you get fed, you hope it stops hurting. Hope is what keeps us alive, it’s what keeps us going when we don’t think we can. Hope is what drives us.
Hope irritates me. As we grow, as we age, hope becomes a lot more complex. Of course we still have the basics, but it goes much farther than that now. Instead of hoping I’ll get better, I hope that I’ll get better with out surgery. I hope that my medications won’t harm my body. I hope that my hair won’t fall out. I hope that 10 years from now I’ll be happy and healthy. Hope isn’t a one sentenced thought. Hope becomes a tunnel dream. Hope eats up your heart and raises you expectations, and as an adult a lot of the time it lets you down.
I had such high hopes for my health. Most of you know how long I put off starting the Humira Injections. I really didn’t want to subject my body to those chemicals. I finally agreed. My hopes soared when I had 3 good weeks of feeling relatively normal. I agreed to that drug with the hope that my quality of life would improve.
Well. Humira isn’t working. I was hospitalized anyway. Fistula. Obstruction. Infection. I came out and doubled my injections. I started Prednisone. I hate steroids and stuck to a milder one called Entocort for the past few years. It stopped working, so I went on Prednisone with the hope to yet again, improve my quality of life. Instead I’m feeling every side effect in the book, from moon-face, joint inflammation, to nerve issues and swelling. My hair is falling out. Hopes dashed.
So my specialist started suggesting another drug I had turned down. 6mp, it’s a low dose chemo drug used in leukemia patients. The side effects can be pretty bad, but chances are I’d be able to function better. I just needed to continue taking my antibiotics to try and close this fistula. A month and a half after my hospitalization. MONTHS after my fistula started, there is no improvement. None. Just constant UTIs, pain and other not so pleasant things.
My doctor called today. No 6mp for me. He gave me my options. Remicade. Remicade. Remicade. More anti-biotics. With the hopes of getting me off the steroids because he’s “concerned about the advancing effects”. “It’s Remicade or Surgery Sarah, obviously Humira isn’t working.”
I have been avoiding Remicade since I was diagnosed. I don’t like the risks. I don’t like the idea of infusions. I do not like it sam I am. At this point though? I’m agreeing. Except for wait. What was that? Remicade costs out of the pocket in the THOUSANDS of dollars? I don’t have health insurance. I can’t get accepted because of a pre-existing condition. Medicaid through the state fights me on my medications, for example, I’ve been on Humira since March. They finally agreed to cover the costs LAST WEEK, and only after my nurse appealed 3 times. Remicade is almost triple the cost out of pocket. I explained this to my doctor. He’s going to have my nurse look into something. Anything.
So, yet again, for the hundreth time, I’m hoping. I’m trying not to hope to hard though because quite frankly, I’m tired of the let down…
.. but god fucking damnit. I’m tired of being sick. I’m tired of constantly hurting. We’re on year 4 people. I’m tired. I’m so fucking tired. I can deal with it, as I have been, but, I’m tired. I want to not hurt. I want to feel healthy. I want my life back.
I don’t want to live like this anymore. I hope something works because I sure as shit can’t do this forever. Every other aspect of my life is on the up and up, why can’t my body cooperate?