Still Sick and heading home

I'm in the midst of getting ready to head back home to Idaho. I am nervous and excited. I made this decision for many reasons. One of which is that I am doing better. But when I say that, I don't mean that I am better. I am reminded daily of how sick I still really am. Take today for example, I really needed to wash my hair, that is one task that I can only do every 3-4 days because it takes up so much of my energy. So taking a shower, washing my hair, and if I want to try to dry my hair and put any make up on... well I'm pretty much spent the rest of the day. Forget any plans I had, they all go down the drain. So I end up laying in bed looking "pretty" and can't move because I'm too tired and in too much pain.

My liver is inflamed again and my spleen feels enlarged and painful, which isn't unusual since my Epstein Barr Virus titers were high and when a person has active Mono, you usually have an enlarged spleen. Either way, it has been painful. I am on a lot of heavy duty medications that can damage the liver, and I am also on a lot of supplements that are trying to help the liver clean itself out, so I keep praying that I won't permanently scar it in the process. My last blood tests showed high liver enzymes, but that was about 3 months ago. I'm awaiting new results to see what they say. I'm also having more and more acid reflux and can tell my stomach lining is taking a real beating from the minocycline. My yeast is coming back (even though I'm taking Diflucan and Nystatin to fight it), I see it every morning very clearly on my tongue (thick white patches and bad breath in case you are wondering). So there will be a lot to discuss at my next appointment with my Dr here in Seattle. I have delayed increasing my dose of Biacin this week because of my liver pain, seems I need to give my body a few more days to rest and I figure waiting till I get back to Idaho where I'm not in a car, is probably a better place to be when I increase my antibiotic dose again and await any herxheimer (die off) reactions.

There are many things having to be put in place in order for me to come home, some things I have to do when I get there, others like ordering my own wheelchair so we have one at the house when I need one is an example. Also ordering some pre-made meals from companies like Schwanns, that delivers to your home, looking for someone to come help clean the home once a week or so, etc. Until I can get back to doing it myself. The hard part is not knowing how long it will be before I can do all those things on my own again. Until then, life at home is going to be very different for us and very simplified. I have to be very aware of what my body is telling me at all times. For example, if we are out and about at church as a family and my body is telling me "you need to lay down" then I need to listen, leave, go home, and rest. I won't be able to have people over to visit often at my home for quite awhile until I can handle it. It's just a lot of adjustment for all of us.