A New Treatment Combination Brings Me Hope for My Future
My health seems to follow a pattern: I’ll start a treatment plan, it’ll go well for a little while, and then I’ll suddenly experience an uncontrollable flare. I’ll stubbornly suffer until my body decides that I should stop.
I’m currently at the beginning of that cycle once again after recently starting treatment with Rituxan (rituximab).
I’ve been treated with several myasthenia gravis therapies, including Imuran (azathioprine), prednisone, Neoral (cyclosporine), cyclophosphamide, and both intravenous immunoglobulin (IVIG) infusions and plasmapheresis. Three months ago, I started a combination of rituximab and IVIG, and have been doing fabulously since then.
I am hopeful, optimistic, and excited about what a long-term improvement in my health could mean for me. I am dreaming about the things I want to achieve in my personal relationships, in my career, and for myself. I couldn’t have done this last year, as I was barely living from one hospitalization to the next.
Now that I’ve started rituximab, things are going smoothly. I haven’t had any unplanned hospitalizations so far this year! To be fair, I’m only working half days during the week and a few hours on the weekends. I’m driving an automatic car. I also have incredible support at home from my family, friends, and partner.
Most importantly, I take my rest seriously. I’ve adapted my life to better suit my condition, and it has helped improve my quality of life.
I can’t help but feel that the cycle will repeat itself at some point, this treatment plan will stop working, and I’ll be caught trying to balance a life my body can no longer sustain. I worry about my reaction to the process, both externally and internally. Then, I wonder how my loved ones will respond. I realize that rituximab is my last treatment option if I hope to protect my remaining fertility.
I want to start mourning, but I don’t. Those worries do not reflect my current reality. I’m doing well now, and the rituximab and IVIG combination seem to be working.
I’m doing so much more than barely hanging on. I am living, which I’m grateful for. If life with myasthenia gravis has taught me anything, it’s to live in the moment and appreciate things as they are happening.
Life is beautiful, and those of us with chronic illnesses learn to appreciate even the smallest victories. That’s one thing that keeps me going. I’m mostly thankful that I have access to an experimental treatment like rituximab. As always, I will never stop fighting.
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