Since getting home

Well, I've been home for just about a week now...and realized I haven't entered anything since getting here.

Note that this is mostly a recap of bad stuff...as I try to understand what's been going on.

I started thinking why that was. There's lots of conflicting thoughts running around in my brain. When I first got to the hospital, I still felt pretty good and was blogging often. Even the worst days pre-RSV weren't bad. I was still on the Bone Marrow Transplant (BMT) ward, 7E, and everyone was incredible.

Once I got the RSV, I was moved elsewhere, spending 6 hours every day under a tent and unable to leave the room unless I was going for some x-ray or ct scan...and would then need to wear this horrible NIOSH N95 face mask. During that time, I was also cut off from a reliable wi-fi connection.

Now here I am, with all the comforts of home (literally) and I should be shouting from the rooftops how great it feels to be here. It really does.

So what's different? Health-wise, I don't feel better than I did. More importantly, I feel like a burden (Alice doesn't feel this...and will be mad that I put it in here). I've never been good at being dependent. I'm normally able to do whatever I need by myself. However, since being home, I am so dependent on Alice. More than that, she's already got her own pain but needs to do all my usual chores plus her own.

We've enjoyed cooking together almost as long as we've been together; now I get to sit in my recliner and watch. On top of that, Alice has always enjoyed watching me eat. I usually have a big appetite and am told I obviously enjoy whatever I'm eating. These days, one of my portions can easily feed both of us...and I'm only eating two real meals each day, unless you count my daily portion of ice cream and cake. :-)

Since being home, I've had more upper/lower GI "distress" than during the month in the hospital. I'm frequently short of breath and am using an inhaler to help my breathing. 4-5 laps around the inside of the house has me out of breath.

The Friday trip to the clinic sounded positive except that I discovered that I'd had a staph infection along with the RSV. Also, they were concerned about pneumonia, a not uncommon result of the RSV. I seem to have the signs of an oral fungus as well as the possibility of another bacterial infection. I received a few pills for the fungus and some IV anti-bacterial. Also, I was given a prescription for some anti-pneumonia medication.

Spending a few hours in regular shoes Friday has brought about an old foot problem. Having nothing to do with the Amyloidosis, it feels like some sort of sneak attack. The laps around the house, necessary if I ever want to rebuild my strength, have stopped. Seriously painful, I can't take the usual anti-inflammatories to control it. Ice and elevation are about it...and they're not helping fast enough. My trip to the clinic tomorrow may very well be on crutches.

As you can see, the list goes on and on.

However, I'm alive and will in time return to normal. I know this. Having written all this down has helped to bring this all back into focus. I realize it'd be perfectly normal to be suffering some depression. So it's all normal and to be expected. Too bad I set such high expectations when all this began.

So, enough rambling...it has done me lots of good and, if you've read this far, thank you for taking the time.

Also, thank you to everyone who's called, sent cards, offered to help with chores, and all the other wonderful things you've done.

Jerry