TPN continues to go well also. I decided that I would weigh myself each Friday, thereby avoiding potential disappointment by checking my weight every day and seeing no progress. Well, I was still disappointed this past Friday when, after one week, there was no significant weight gain. Perhaps I'm expecting too much in such a short period. I can't be entirely certain about the accuracy of my bathroom scales but I may have gained a pound, possibly two, in which case I would be delighted. At worst, I have stayed the same which I can also live with. I should also mention that I have not, as suggested by my dietician, done any G-J tube feeds in this time period, nor have I been drinking boost every day. The reason is that I am simply enjoying not feeling bloated all the time and, even better, I am taking food orally on a regular basis and my bowels are handling it just fine. I've even stopped taking the pariet and have not had a single bout of reflux. This makes me think that it may have been my formula which was causing the problems previously.
Need I point out how much I am enjoying eating real food again? Today, for example, I have had scalloped potatoes and meat loaf which my daughter brought over. For dessert I had Oh Henry bar pieces and I have also had tea, hot chocolate and just finished a coffee. And I am still hungry but will resist eating more as I don't want to overdue it. A couple of weeks ago this would have been unthinkable.
So, in summary, I am feeling much more positive about life again and that's got to be a good thing.
Hello!
ReplyDeleteI came to find your blog from your sclero.org posts. I wanted to thank you for sharing your story, but also let you know I was a little disappointed that there was not a yearly update in 2010.
I thought it was very interesting to read a first hand account of a year synopsis dealing with scleroderma. I was diagnosed about a year a half ago, and have limited symptoms. I found physical therapy to be the most effective treatment and have stopped all of my perscribed medicines. Now, with winter coming, I am dealing with raynaud's significantly as well as arthritic pain. It's burdensom, but I am so appreciative that it has stopped advancing as rapidly as it seemed when I first received the diagnosis.
I hope you see remission soon, you seem like a wonderfully positive person making the best out of life; it's a refreshing change to the normal posts by people dealing with chronic conditions. I hope you never change that.
Elizabeth, thank you for taking the time to leave a comment. Much appreciated. I realize I haven't updated the sclero.org info this year abut in light of your remarks will do so soon.
ReplyDeleteI am happy to hear that you are doing well and keep those hands and feet warm.
Best wishes,
Bill