With or Without You

About 25 years ago, one of my best friends at the time gave me a U2 CD (you know, those shiny disks with music on them that are almost obsolete??). It was The Joshua Tree album and I played it over and over and over again. I loved it. The song "With out Without You" swirls in my head to this day as a direct result of listening to that CD relentlessly. It fits a great many purposes....singing it to my children when they throw a fit, singing it to the sun as it blinds me while I drive, singing it on the way to another appointment with another specialist and my recent favorite....signing it to steroids. Ahhh yes, the roids.

About a month ago, life was going along swimmingly. Kids were in school, I was in a routine and things were running smoothly. Then one night at 4:30am, my 9 year old came running downstairs to our room saying the cat caught a bat in his room. Sure enough, the cat did corner a bat in a trash can. My brave husband captured it and released it. We all went back to bed and thought nothing more of it....well, the kids were terrified so they slept on in the living room. The next day, same son had a follow up with his ENT dr. Son casually mentions bat, doctor flips out. Apparently this calls for an ER trip for precautionary rabies vaccines because the bat may have bit any of us while we slept and we wouldn't have felt their tiny sharp teeth and it wouldn't have left a mark. Oy. So...$450 in ER fees later, we are all vaccinated against rabies.

A week or so later, a deer died on the shore of our lake. Poor thing stumbled, fell, flailed and eventually just dropped dead. But now we had a deer, dead, about 5 feet off shore and only partially submerged. Know what? Nobody can help you with this! I called every government office I could think of...animal control, highway department, animal shelter, the veterinarian,  even the local Purdue extension to try to find someone to come get the dead deer and dispose of it. Thankfully my father in law and our neighbor came to the rescue and, with the help of foxes overnight who dragged it partially on shore, they pulled it into a trailer and dumped it in the woods. Nature took its course and  its all gone.

While all of this wildlife nonsense ensued, I started to notice small pin prick red dots on my abdomen. Naturally, I ignored it. Surely it was a reaction from the rabies shots. They got bigger. They spread. They itched. Day later, they were on my back, chest, abdomen and back of my neck. My husband's main purpose when he got home from work was to scratch my back. I trained my kids to scratch my back. I took Benadryl and used hyrdrocortisone cream. Nothing helped much. Here I am still thinking its a reaction. Time passed and about two weeks later, I brushed my teeth and spit out pink spit. Something in my mouth was bleeding. So, like any worrywart would, I pulled out my phone flashlight and checked in the mirror. Oh my Lord....white patches. Surely its something horrible. Oral cancer? My mind raced. I called my dentist. He said it was thrush. This caused more panic. Thrush?? Thrush comes from low immune system. I don't have that. Or do I? Maybe I'm relapsing? My heart sank and my mind raced with the worst case scenarios.

By this point, my mouth hurt, I was red and itchy, my eye was dryer than ever and anyone who saw me probably wanted to run the other way because I looked awfully contagious. My transplant team was updated as these things happened. I had to get permission for the rabies shots, I told them about the "thrush" and even mentioned the rash. They said "probably GVHD" and "see you at your scheduled appointment". I couldn't wait that long so I went in earlier. They gave me a steriod rinse for the mouth gvhd which was not at all thrush. I started 40mg a day of mythelprednisolone (a powerful steroid) as well as going back on Bactrim.

So here I am, day 3 of the 'roids. I can hardly sleep. My mind is racing. I'm hot and my cheeks are flushed and i feel like I have so much energy! I'm fidgety and can't calm down. These steroids are kinda awful already and I haven't even gotten the water retention, weight gain and moodiness side effects yet! On the flip side, I can see great improvement in the rash and am less itchy. So now I sing "I can't liiiiivivveeeee with or without youuuuuuuu" to the 5 pills of steroids I take each morning. Another bump in the road but at least I"m still on the road!