Hello everyone! I hope ya’ll are doing well these days. In this post, I would like to update you on some issues that have been going on with me. One of these days, I hope I can give you some out-of-this-world positive news!
The other day, my doctor’s nurse called me and told me my potassium and magnesium was pretty low. They told me from the looks of my blood work it looks as if I am dehydrated. I have had lots of diarrhea lately and I am losing a lot of fluids. They talked about putting me in the hospital to pump me full of each. I said whatever I could say in order for them NOT to put me in the hospital (I hate that place)! Instead, I suggested to them that I could go on the TPN every night instead of the every other night I had been doing. Just to let you know, I started out taking it every night and was working on tapering off the TPN until this incident happened. I took one step forward and two steps back! I also ask them to take all of the calories out of the TPN bag because I was doing 600 calories a night and I don’t need anymore calories, I’m doing fine on my own! I am already 12 pounds over my ideal weight from this thing. Sometimes I feel as if they just don’t understand or care if I get huge or not, just keep gaining that weight, it’s good for you!
Okay, I’m not sure how to tell you this but here it goes..a couple of weeks ago I sat down on the toilet to pee. All the sudden, I felt something fall out of my butt! Now those of you who follow me know that nothing should be coming out of my butt due to my ostomy. Anyhoo, I panicked and looked down. There is something at the bottom of the toilet that looks like a worm! Now I really panic and run into the living room to get my camera to take a picture of it! I finally got brave and fished it out – it was a rubber band or seton, the medical term for it. Once I picked it up, I knew right away what it was and I calmed down a little. After they hooked me up with an ostomy during surgery 3 years ago, the doctors placed this seton in my anus to hold things together. I don’t feel any different than what I did before this thing fell out, no pain or anything. I kept it and took it to my doctor to see if I need it replaced. She told me as long as everything feels okay and there is no pain or anything, I shouldn’t need it replaced. That’s one positive thing that came out of this whole experience!
Now for my jaw issue. I got an MRI of my jaw back in February and took it to my oral surgeon to get it read and see what he says about it. Not good news. He told me that he hasn’t seen anyone this bad in 35 years! Leave it to me for this too! Why not go big?? He told me that basically my ball from the ball and joint on each side of my head is gone. There is just a disk there, it has been worn down to the nub. Also the cartilage that should be between the ball and joint is no longer there, it’s only scar tissue. So what he suggested is that I wear a bottom retainer like thing and that should take the pressure off the muscle and hopefully bring my jaw forward a bit. Both sides of my jaw are dislocated. If that doesn’t work, I will need surgery to replace both ball and joints on each side. I don’t want to think about that option right now – only positive thoughts!
It seems to me that the older I get the more interesting my life becomes. Never a dull moment here! I just wish I could take all these bad things and turn them in to something good. I’m still trying to figure out what my purpose here on earth is. I try to live a normal life or as normal as I can but it just seems that the harder I try, the more difficult my life becomes. This disease has really kicked me in the butt but I try to take it one day at a time. Oh yeah, my doctor told me she was glad that I had another doctor helping her out with me because I was a handful. I just agreed with her, I know I am.
Chow for now!