I have tagged to other topics here for several weeks on my fight with having pain swallowing and trying to eat things, getting frustrated, giving up, trying again, etc. I was and am still having some mouth pain on this one part of my tongue--actually on the opposite side from where I had surgery, it seems to rub against a tooth back there.

I thought what I should do is start my own topic on this because I think its going to be a long hard journey for me to get back to eating enough calories that I don't need my tube. And I really would appreciate whatever encouragement it moves you to give. I'm relying on my husband for that right now and it's not working--he's kind of burnt out as a caretaker unfortunately.

This week, finally, I got off oxycodone, kind of by accident. I thought I had one more little bottle of "oxydose" drops left but I didn't. My mouth pain had decreased to the point where I was taking (if anything) tylenol during the day and only using the oxy at night when the pain is worst because my mouth dries out--when I realized I was running out of oxy, I switched to tylenol at night too. I thought since I had already cut down on my use during the day, I wouldn't have withdrawal symptoms but after two days of thinking I was getting the flu because I has the chills all day long and a little nausea, it dawned on me that it was probably withdrawal. I've only had minor chills today so I think I'm past the worst of it and it has made me decide I really want to stay off that stuff if I can--though my tongue still has this irritated spot that hurts--and it also still hurts somehwat to swallow. I'm torn because it might be easier to eat if I took a stronger painkiller beforehand. But I hate that I was dependent on it and I had been taking it for several months.

So anyway, today, my oral nutrition has consisted of about 1/3 of a tall glass full of soy milk/banana smoothie. I can take about 5 gulps at a time and then whatever that part of my tongue is doing rubbing against the teeth starts to hurt and I have to stop. It also hurts in my throat every time I swallow but when its a smoothy with ice in it, the ice actually seems to soothe that. Eating at this rate is not going to get me off the tube but I'm actually proud of myself for just trying the smoothy. I've had so many really painful and aversive experiences trying to eat it's like I have to force myself at this point.

I'm planning on going back to it and at least getting another third down today. Its a start.....anyway, I'll check back here and just post updates on how I'm doing. I feel like I need to keep on myself about this if I ever want a chance at being able to eat again.

Nelie