This semester has been pretty difficult on me. I’m not ill with other things, like pneumonia or other respiratory illnesses like when I was on MTX. Unlike last semester, I don’t feel 100% dead. But I am struggling. In thinking about things the other day, I came to the conclusion that school is no longer a real option for me. And, whereas last semester that would’ve freaked me right out, I’m okay with the decision now.
At this point, Arabic specifically is being offered earlier and earlier. It continues to force me to get up earlier and earlier. Unfortunately, it makes it very difficult for me to handle my disease. My Humira I think isn’t helping as well as I thought it would. Hopefully it’s just a matter of adjusting dosages. I’m also in so much pain lately. And it’s not just an arm or a shoulder – it’s my knees, my ankles, my hips – all those things you need to move around and do things. Even though my job is a lot easier, I’m still finding myself having to make the decision between whether or not I can go to school or to work – and I have to be able to support myself financially.
Sadly, I don’t think that other people understand what I’m going through. And I don’t expect them to. If someone sees me at work and knows I wasn’t in class because of my disease, but I seem to look fine, it’s hard to understand I know. And I am thankful that so many people won’t know what I’m going through.
It’s just about reevaluating my life. My plan was to work with the UN – in order to do that, you get stuck in the worst health countries first so you can work your way up. I can’t do that. Then I thought I should be a professor – but if I can’t even make it to classes to teach, what is the point? Why should I continue to accumulate loans when I can’t possibly do what I want to with my education. I have learned Arabic, which is something I always wanted to do. And I will always study that part of the world, because it’s fascinating.
But more fascinating to me is my own body and the struggles it goes through. I value more the comments I get and friends I have made because of blogging about my experiences. I have helped people just by being me, and that’s amazing. After reading books and talking to their authors, like Christine Schwab, I know now what I want to do. I’ve been working over the past few days on a book about my experiences with my disease. I hope that it will help others, and I know that it is already helping me.
Now I just face the tough decision if I should really finish my classes this semester. It’s not a good thing to receive bad grades, for sure, especially not for a former overachiever like myself. But at the same time, I don’t think it’s worth the stress to worry about my grades at this point. And again, I’m somehow okay with all of this. I don’t even know how.
I think you are an amazing young lady and I don't really know you. I found you on here only a few weeks after my then 15 month old daughter was diagnosed with Still's Disease and your blog helped me so much! I will buy your book one day! I am proud to know you and to read your writings! Much love to you on your new found goals. Reach for the stars hun, we are all here boosting you! xx
Thank you so much honey. It is so amazing to go from no one understanding me to having so many people who care. <3
I hope that Zoe is doing well right now. I'm glad that the parking thing seems to be resolved for now.
I'd buy it!! Sorry about all the tough Decisions- I just made the decision to not teach for two months and go on medical leave – very hard!!