My health took a nose dive, both physically and mentally for awhile. I was sick, had no insurance, and then went through what was a very difficult break up for me early last year. I managed to get my body back to a place that I could function after a few months, but I was not myself. On top of my own struggles with my health and relationships, my mom found out she had breast cancer. Then a few short months after that we found out we were getting kicked out of our home. So fast forward a few months, after another break up and other stress like dropping out of college and getting a job at a pharmacy, I had my own apartment. That apartment and those 5 months I was there are an entirely different story that is much too long. Now I am taking care of my brother because no one else would, but he just turned 18 and I helped him get a job. I have an apartment with him, 2 precious kittens, and a job where I feel like I can be productive even though I have to sit while doing it most of the time.
It was so very hard for me to step away from what I am truly passionate about, which is helping other lupus patients, especially younger ones, and advocating for us. I could barely focus on myself and my own life this past year or so though. I feel like the past few months my life has finally calmed back down, I have a routine and a stable living situation. I'm doing pretty well all things considered with my health, though my diagnosis has changed to MCTD (I'm still not sure if that's an addition to lupus, or a replacement. Very little definitive data on it.) I switched my main medication from cellcept to a low dose of methotrexate. I seem to already be feeling better on it, but I guess time will tell with that. I'm slowly but surely coming off of my steroids. I'm finally, after YEARS, down to 4mg of Medrol. The most difficult thing for me has been trying to safely lower my steroids without making myself sick. I have not been off of steroids for 5 years now, and I'm only 23. I already have side effects from the long term use. Right now my goal is to get off of it, and be able to lose some of this weight I've put on partly from it. It's very difficult being happy with your body when it is not the one you are used to!
Please if you read this know that if you need someone to talk to, I am here. You are not alone. In my short life so far I feel like I've experienced quite a bit and I promise you I will listen and give the best advice I can. We have to be there for each other, even when it seems like no one else is there we as patients are there for one another as a support to fall back on.