Friday, January 16, 2009

Is there anything else that can be done?

Well, I have started to take a turn for the worse again.

First off, the pain has returned with a vengenace. I am on my pain med, which is Dilaulid, and to give you an idea what kind of main med that is: it's about 10 times as strong as morphine. Morphine is what most people get after they have had surgery. I am on pills, and although I have requested liquid form from my Dr. he won't give it to me. If I had the liquid kind I could put it in my tube, and it would get entered into my blood stream and stop the pain faster. My Dr. said I could crush the pills and make it into a liquid by adding sugar and water, but didn't tell me how much of each to add, so fo now I will stay on the pills, till I go back to my Dr. in mid- Feb. for a check-up, unless I get worse. So, for that please pray that the Dr. will give me the liquid form.

I have had to cancel all my activites and other Dr. appts this week, because I can't drive on the pain meds, and I've been in to much pain to leave the house.

Second, the pain has been located in my intestines and stomach area, which means that something is wrong. I called to make an appt. with my gastro Dr. and the first available wasn't until Feb. 2nd. I was not happy, especially since I had spoken to the office manager and he said that he could get me in withing the next week. If I'm not better by Monday, I'm calling the office manager back. I had originally called the office manager because I wanted to switch Dr.'s because my GI had told me at my last visit that he doesn't know what else to do for me and that there is nothing else he can do. It's very disheartening to hear that from a Dr.
I have lost my appetite, and should be doing my tube feeds, but I can't motivate myself enough to connect myself to it again, since I have been doing so good for these past few months. I know that I will need to connect eventually to keep my nutrients up, but I just can't imagine going back to it.

Please pray that I can start wanting to do my tube feeds and pray that I can get an earlier appt. for my GI dr.

Third, the botox in my esphagus is starting to wear off, and it shouldn't be. The Dr. put double the dose in this past time, in July, and it should last 2-3 years, but it's only been 6 months. Swallowing foods is becoming increasingly difficult and more painful. My mom wants to go back to the Dr. who did it in St. Louis, but I remember him saying that if the botox didn't work, than he'd put a feeding tube in, and I already have that. So, I don't know what else he can do.

I don't know what else anyone can do. I have heard of 1 case of a person's esphagus being removed completly, and the small intestine being stretched into a new esphagus. That's very drastic, and I'm not there yet.

Please pray that my pain will either stop or something can be figured out. Pray that I can get in quicker to see my GI Dr. Pray for my body, as I being to start to relapse again, that it will stop and get better.

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