whats happening

This holiday season was definitely a fun filled, family packed one and I am so happy that right before it all began my energy levels come up.
See here is the thing. It is really a love hate relationship with these steroids I was put on back in June (or was it July?!?!). No one tells you, I guess maybe you are supposed to just know, how much energy and how great being on 90mg of prednisone feels. Remember those posts where I was waking up at 5am and doing six bajillion different things throughout the day. My room was spotless...those were the days. Well the whole point of the steroids was to get rid of my Graft vs. Host rash and well 90mg of steroids I think will get rid of basically everything, including I now found out your bodies on production of natural steroids. So slowly....very very slowly they have been reducing the steroids and for a while it wasn't that big of a deal. It would take my body about a day to adjust and then I would be back to what seems like the normal now.
Well, right before the holidays and literally weeks before a friend came for a visit they cut them back again. No big deal right. WRONG. My body decided to just implode basically. I stopped eating (bye bye 10 pounds), was fatigued as all get out and just basically didn't feel like moving or doing anything, nausea of course made an appearance and life was not looking fun.
I was starting to feel guilty that my friend was coming to visit and the holidays were coming up and I was just going to be this teeny tiny lump on the couch the whole time unable to do anything.
But a visit to the doctors and things started to perk up. They gave me another steroid (I thought I was suppose to be weaning off of them!) that would help with the nausea, so that I could eat. They think I may have a small Graft v. Host of the stomach but in order to confirm that they have to stick a tube down your throat and pinch off a piece of your stomach - so I'm trying to avoid that at ALL costs. And I went back on acid-reflex medicine.
And just like that after two weeks of feeling like I could barely walk around the block my energy level was back up - (it really helps when you can eat!)

So all of that is to say I am a wee bit nervous about my next doctors appointment. The next logical step in my mind is to finally be taken off all the prednisone which means I might have another cycle like the one above... So here is my forwarning if I go MIA after next week. Also I think I'll invest in some reading time. A favorite blog of mine just posted about this book, When Breath Becomes Air, her brother in law wrote about facing his death. Looks like an interesting read, not necessarily a mood lifter.