Wednesday Wonderings

So, I've been doing a lot of thinking lately about the future and realistically how these problems are going to pan out in the long run. I just have different thoughts about if this or this happens, then what?

In regards to being on TPN with no idea when I could come off of it and not do it anymore. TPN has to be given through a central line. Well anytime you put a foreign object into the body it has a good change of becoming infection since it is foreign. It is the body's natural response to fight off things that are not supposed to be in it. So, I started off with a PICC through which the TPN was given. That became infected and I really had no other place for them to put another one, so they had to put in what's called a broviac. That line was placed in my subclavian (chest) area. So what's going to happen when that one becomes infected? Where will they put the new line? I figure I will eventually run out of places for them to put the lines for me to get the TPN. If I don't get the TPN, well then......(let's not even go there.)

In regards to treatment options and Temple. Things have gotten worse since I have been at Temple. My bowes have since gone bad. There was talk about the gastric stimulator. Well, if they are able to stimuate my stomach and I am able to eat, then it will just back my bowels up and cause more/different probem. It seems like it's a no win situation.

I've also gotten to the place that I have been dealing with this for so long with no improvements, that I have pretty well lost hope of ever getting better. By that I mean through medical and spiritual intervention. I know God is the Great Physician and can do miracles, but I feel like he can do that for everbody else but me. Then it seems like everytime the doctors refer me to great places that specialize in treating this, that I just fall through the cracks. I found out last week after 3 months that my insurance will not cover me to get the first test that I need done at Temple. So now I have a bunch of phone calls to make, but with no real hopes of getting anywhere which doesn't make me in a hurry to do them.

Now for something on the cute/funny side of things. I was talking to my nephew Taylor on the phone the other day and was asking him what he wanted for his birthday which was last month. Here is how the conversations went.

Taylor: " I want a gun that will shoot real bullets and when you pull the trigger the bullets come out and kill people."
Me (in shock): "Who do you want to kill?"
Taylor: "Drugs"
I was shocked because Taylor is the sweet one and it just surprised me that he would even say something like that. Then when he said drugs I realized what he was trying to get at since drugs are a big issue where they are at.

Hoping to be able to sleep good today and be well rested for work again tonight.

Taking it one day at a time!!!

Update 6/8/2011

Nothing too exciting has been happening lately. I've been keeping busy with work.

I went back to work right away as soon as I was done with IV antibiotics. Work really takes a lot out of me, but my main problem is that I can't sleep. I usually don't get to sleep until 10:30-11:00 and then for some reason I am up by 2:00-3:00 and then I'm done sleeping. I sometimes will try and take a nap again before I have to come back in, but most times I think it makes it worse. I don't know whats with my body. It seems weird to me because at home I can't sleep, but when I was in the hospital it seemed like all I wanted to do was sleep.

I had a doctor appointment yesterday with the family doctor for a follow up from my hospital admission. I scared the PA a little because at first she thought I had a fever, but when checked via a different route the reading was better. She did mention she would like me to keep track of my vitals to make sure I'm not spiking any fevers or anything like that.

My next appointment is not until the end of the month and that is with GI nutrition to see if my TPN needs adjusted or anything.

Taking it one day at a time!!!