|
|
||
|
|
As of December 18, 2000: Today was my first day out of the house in a week. I have not been feeling well, so I have not gone out. I made it to the drugstore to pick up some more medication. My tube pain has returned full force once again, and I am experiencing extreme nausea in spite of the fact that I am not eating anything at all and haven't for over a month. Most of my time I sleep and watch TV. I don't really like TV, but I don't have enough concentration to read, or enough energy to do much else. I'm still holding on to my grad school dreams for next fall. I'm also asking for everyone to pray for no snow or bad weather the week of Jan. 8, so I can keep my appointment in Rochester, NY. Hopefully I will get some answers to some questions at this appointment. My parents left for TN this morning where they will stay for over a week and celebrate Christmas with the family. I was not able to make the trip this year due to my health problems. I will spend Christmas with my friends around here. As of December 7, 2000: My tube pain has finally become bearable. The increase in the medication seems to be helping. However, one of the side effects is decreased stomach contractions and therefore worsens the gastroparesis symptoms. However, tube feedings are more important than eating at this point, so I have to endure the trade off. Another side effect of the medication is increased thirst. Since the placement of the j-tube I have had very little to drink by mouth because I have no thirst. However, with this medication I do have occasional thirst now. This is problematic because when I drink even two ounces of fluid, I get very sick and throw it back up for hours. I think I have decided to endure the dry mouth. The nausea is still around almost constantly, and I am still pretty drugged on my meds. I am hoping that I hear back about my SSDI claim soon, because my work hours have been very limited. I am also still suffering from severe generalized muscle spasms. I have no explanation for those at this time. As of November 20, 2000: Things have been pretty tough for the past few weeks. I am suffering from nausea 24/7 and a lot of pain from my tube. My doctor prescribed a drug to slow the contractions in my intestines because he thinks the contractions are contributing to the pain. I am also having a lot of back pain which is associated with my tube pain. I usually have to get up in the middle of the night to take medication for the pain. I'm also on a strong anti-nausea drug which makes me sleep a lot, but I don't mind cause it helps me sleep through the pain. The medication is not helping thus far, but my doctor increased the dose today. The problem with this medication is that it also slows down the stomach, which worsens the gastroparesis, and adds to my nausea. It seems to be an endless cycle! I am going to Ohio for Thanksgiving to see my niece and nephew, and hopefully it will be a good break. I applied for SSDI on Sept. 29 because I am unable to work a regular schedule and only work 6-8 hours a week. As of November 13, 2000: I have been through several rough weeks. Last week I threw up all the time, even when I wasn't eating anything. Sometimes I am throwing up my tube formula, and other times I throw up my own stomach juices. I have also been suffering from severe pain related to my tube, so have had to rely on some pretty heavy pain meds. I am discouraged because I seem to only be getting worse. I have had to slow my tube feeding rate down significantly, so now I am hooked up 21 hours a day instead of 18. I have constant nausea and a lot of vomiting and I am not able to get out of my house much, which is difficult for me cause I'm such a social bug. The Bobsey Twins B-day party was a blast though. We had so much fun, but were both exhausted afterwards. As of October 15, 2000: I started working for my gastroenterologist part-time at Hershey Medical Center on October 3. My plans are to start volunteering in the Child Life Department a few hours a week. I love those kids and I'm really excited about it. I'm still struggling a lot physically. My stomach is not happy and won't let me put anything into it without bringing it right back up. For that reason, I am still on tube feedings 18 hours a day in order to gain or at least maintain my weight. I lost down to 88 pounds this summer, so I have a lot to get back. My tube is causing me a great deal of pain at times, but for the most part is is working out much better than my first j-tube. My most recent concern with my tube is that I am throwing up a lot of my formula, which is a cause for concern because apparently my formula is backing up into my stomach. I am not sure yet what will be done to correct this problem. I am still making plans to begin my graduate work in the fall of 2001. I really miss taking classes, but also know that realistically it would be impossible for me to do that anytime soon. My 23rd birthday is on October 28, and my friend Karen's 40th is two weeks after mine, so we are planning a big huge combo b-day party. We are known as the Bobsey twins (quite humorous if you look at our pictures) so we are developing our birthday theme around that. I'm excited about this because I love birthdays!!! Too see pics from the b-day party, click here.
|
|
