Into The Unknown
In my most recent visit with my mast cell physician she told me I could get the J and J vaccine. I screamed - a combination of terror and excitement as tears welled in my eyes. Of course so many questions followed -How? Where? Can you come with me? Sadly the last is not possible - but in a perfect world this would happen outpatient in a hospital with IV fluids before and IV premedications and I could stay and be monitored closely. But as I have since learned life isn't perfect. In fact, this scenario is impossible to make happen right now. Believe me I have tried.
In my searching what I did not expect to find was so many others in my situation. Our reasons may be different but we all have a higher risk of reaction when we get the vaccine and we are all without a solution for this. To get an IV in your arm you have to have anaphylaxis first. It seems impossibly backwards - why wouldn't we try to prevent an issue when we know how? It is clear, the system isn't built for the rare.
Not wanting to give up, my research continued and I have decided that the Javits Center in New York City is my safest option. My doctors are calling in injectable medications that I can self administer to myself the day of the vaccine and I will begin upping medications a few days before and stay on them after. I will get the vaccine in the medical area to start and I know they have ambulances standing by if an ER is needed. Hopefully it will not be.
After hours of clicking refresh I found an appointment for this coming Thursday morning to get the J and J vaccine. In many ways it feels like I am a cowgirl riding into the unknown wild west. Will I do enough to avoid anaphylaxis? Will it set off a cascade of ongoing issues and cause me to regress for weeks losing the progress I have made? Will I build immunity even after years of steroid use? Will this be worth the risk?
I think about my years of medication trials - when the risk was worth it. Never wanting to miss an opportunity to find new ways to heal while knowing it could cause me to slip backwards if I failed . But I was always glad I tried. That is the thing about rare disease patients, our fight for a better life always requires us to walk into the unknown, to test new medications first and to volunteer for trials if it means we can advance care forward. We fight for science and research because that is our only hope for cures and better treatment options. And this is no different.
I remember in January when I thought I would not even get a chance at getting the vaccine and how scary and upset I was knowing my safety depended on others making the right choice. So while this is terrifying I am also grateful my care team is helping me figure this out.
Yes, I am anxious about Thursday, but I am also feeling oddly calm about this. I know my rare disease warrior self will carry me through just like it always does. And I am staying realistically positive - knowing anything is possible and that the only thing I can do is what I am doing. I can take my medications and drink fluids. I can think positively and stay relaxed knowing that soon I can take a huge sigh of relief when I finally have my protective shield. Because I am certain that getting COVID would be worse. Here goes nothing….
