Sometimes the little fixes to my health or appointment routine end up being box fixes. (I of course meant big fixes, but I’m going to let the typo stand. Somehow ‘box fixes’ feels like an appropriate image too.) And I never know which fixes will be bad, good, terrible, or great. Our CVID lives are such a mixture of accommodations, some normalcy every once in a while, medications, infusions, doctor visits, routines, friendships, family, depression, joy, frustration…….. and, well, everything else. It’s often so hard to tease out the changes that might help. And even then it’s a matter of trail and error. But every once in awhile, I get something really right.
I get a half day infusion of magnesium sulfate (MgSO4) – sorry, i can’t figure out how to put in a subscript – the day before my IVIG, which enormously helps the side effect of a severe migraine during the infusion. My IVIGs take all day, so that appointment is always first thing in the morning. Just from habit, I made the MgSO4 first thing in the morning when we started those about two years ago. I figured that I might as well get them out of the way, and then have the rest of the day to do something. But because I feel pretty crappy even after those infusions, I would get home and just sit in a chair for the rest of the day, waiting until I could go to bed that night.
And there is an additional problem with that early morning timing. My two infusion days are usually Thursday/Friday, and my rehearsal night is Wednesday, which means on those nights I don’t even get home until 10:00. I have to allow an hour to get to the hospital, and I move slowly in the morning under the best of circumstances. So getting up super early the morning after rehearsal is exhausting in and of itself.
Several months ago, I moved the MgSO4 to an 11:30 appointment. That certainly helped, but still wasn’t great. Then one day the 11:30 slot wasn’t open, and I had to take a 2:00. I wasn’t happy about that because I didn’t want to get home at 5:00pm, but that was the earliest slot open. Well, God moves in mysterious ways. The 2:00 appointment seemed almost magical. I tried it for a second appointment. Then a third. And WOW! I can sleep as late as I need to the morning after rehearsal, and I don’t need to leave the house until 1:00pm. 1:00pm for a 2:00 appointment! I can sleep, get up and eat breakfast, and actually have time to do something before I leave for the hospital. I am amazed at what a difference that makes. I no longer feel that infusions take up two entire days every three weeks. It really feels like 1½ days now. That is a 25% reduction in time. And 25% is major. It feels like I have a little bit of my life back. And that’s a big fix.
I’ll see you guys on Monday. Have a good weekend. xo