New Experiences

I think we could all do with some new experiences in our lives – it’s always great to try new things, go to new places, meet new people, etc. I’m a creature of habit and try to avoid anything “new” except when it comes to travel and it means a new stamp in my passport. Lately though this hasn’t been an option, so I have to find my fun elsewhere. A few weeks ago Pat was traveling for business (he gets to do that these days – though not quite as exotic as my trips) and I found myself at home all alone. This was my first few days and nights in the house by myself. I didn’t get much sleep the first night because I had to keep getting up to make sure all the doors and windows were locked. It got a little better as the week went on, but I am certain now that we will need a dog – someday. Anyway, by Saturday I had had enough “me” time and was ready to see some people so I joined some friends (Mark, Yvonne, and Steph) at the rollerderby. A friend of a friend sort of thing and next thing I know I’m in a Shriner’s Auditorium in Wilmington, MA routing for the Cosmonaughties. It was women’s flat track roller derby and by the end of the evening, I had not only figured out the scoring process but had a favorite jammer - "GO Full Metal Jacque...." ,and yelled cheers that I never in my life imagined I’d be saying. In between periods there was live music and a very enthusiastic crowd. It was a lot of fun - I’m glad I went and I’ll gladly go again!!!

House stuff is fine. I’m hoping to finish painting the last 2 bedrooms over the weekend; I planted some mums to add color to the front walkway, bought a rake to start cleaning up the leaves, and have been picking fresh raspberries for the past 2 weeks. It’s all good and I’m even getting ready to start adding some personal touches, like artwork for the bare walls and maybe even unpacking a few of the knickknacks that I used to have – at least the ones from some of our travels. It’s a little scary to see bare countertops and tabletops everywhere, I need a little clutter. Pat’s been very busy with work and has had a few nights away from home, but I found I could handle just about everything by myself (including making my own dinner). It was a good test and we are both glad things worked out – now he can travel more and not worry too much about me, just as long as its not garbage day – or at least not until we get a can with wheels. Ahh the little things that make us happy.

I want to briefly bring everyone up to date on the health front. I’ve been doing OK for the past few months, though not making the progress I would like and not feeling great. I have many, many bowel issues, which has resulted in my weight loss. I thank everyone for their offers of extra pounds and believe me if I could take it from you, I would. This has contributed to my lack of energy, desire, anxiety about food, inability to do physical therapy, fatigue, etc. It’s a vicious circle and I needed to find a way out of it. I finally gave in and called one of my doctors. Dr. Nauta, my surgeon from Mt. Auburn who has the most knowledge about my gut and has been a source of information and answers for me from the beginning.

He was glad to see me moving around (last he saw me was about 2 weeks into my stay at BI) and we jumped right into my issues. He didn’t pooh-pooh anything I said, knew what my fears were, and immediately made some suggestions. We sat and talked for a good half hour and I walked out of there with a plan and feeling better. I now have Short Bowel Syndrome because I am down to about 5 feet of small intestine (from 20 feet). This is a condition that people with Crohn’s disease suffer from as well as some infants who are born this way. There isn’t a whole lot that can be done, but there are a few things. Immediately I felt better knowing I wasn’t “all alone”.

First and foremost, I need to gain some weight. Since I can’t eat anything without having it fly through me, we are going to bypass a few organs. I am going to try intravenous feeding for a few months to try to gain about 10-15 pounds. Guess I will finally have to go and buy a bathroom scale. Once I have put this on, I should start to feel a little better and stronger. And from there I have a plan as well. I’ll talk more about this when I get to that point. Right now I am happy to have a plan for the next few weeks. I should be able to do the feeding at home and at night without too much interference in my daily routine. We are going to try to avoid any hospitalization and with visiting nurses this should be possible. I still have my port, so access won’t be a problem and since its IV, I don’t have to worry about getting up to go to the bathroom a dozen times a night.

Pat, as always, was the driving force behind pushing me to make this appointment and I am forever grateful. As usual we are attacking this as a team and while I’m the one who has to be hooked up each night, I know that he will be the one stabbing me with the needle and making sure I’m comfortable.

Stay tuned for the food diary and my future complaints about all the foods I can no longer eat!!!

Posted by jean at September 27, 2006 11:06 AM