I’ve been waiting for something to happen to update from last Monday’s infusion and well, nothing’s really happened. I’m currently hooked up receiving my 2nd round so I thought I’d catch y’all up while I wait.
I had all the feelings in my tummy from the moment I woke up Monday. Fear of the unknown I suppose. Planning types like me need to know exactly what’s going to happen. I knew I would be fine, I wasn’t scared. Just .... dread.
It took longer than I expected for several reasons but once we got going it was simple. At one point I had an IV going in on the right and 7 tubes of blood being pulled from the left. (I don’t know why I have to give all the blood these days but this is getting out of hand). I felt fine through the whole infusion and the only way I knew I was even hooked up to anything was the terrible taste in my mouth. I headed back to work to finish the day, stopped at the store, cooked dinner and walked like every other night. And waited for the side effects to kick in.
The next day, for about a 2 hour period but off and on, my face felt like it was going to melt off. So I picked up a little desk fan figuring this was going to be a thing and well, 10 days later & I’ve turned it on 2 maybe times. I haven’t had any of my normal steroid side effects. No hunger, sleeplessness, hot flashes or water retention.
As far as the effect on the eye...the swelling has reduced significantly. I am able to wear my glasses closer to the bridge of my nose than I had been (my eyeball was so pushed forward that my glass lens would push against my eye so my glasses had to sit more on the end of my nose so that I could blink). The eye isn’t as pulled down either. I am taking pictures through this whole process and I’ll get brave and post them one day. Maybe.
My vision is not improved and is actually worse. My hope is my prism is no longer the correct strength because there is reduced inflammation. The constant watering has eased up significantly.
This infusion has gone as well as the first one. No issues except for my veins being difficult. I came prepared with my wedding planner, AirPods, water, chap-stick and a fresh pack of watermelon Hubba Bubba gum to mask the terrible taste. I'm listening to my favorite playlist, working on some wedding stuff and the time is passing nicely. I'm getting an ice coffee afterwards (I fully reward myself at 42 just like my parents did for me when I was 4. Then it was a McDonald's ice cream cone though) then I'll head to work and life goes on.
I’m really hoping the side effects stay at bay but I’m realistic and know that likely won’t happen. Unless something crazy happens, I’ll update again after my Vanderbilt appt. on August 17th....My boy is getting married in January and wedding stuff is way more fun to work on than this stupid eyeball of mine.
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