I finally saw the motility specialist on Wednesday! She was really good. She spent a long time with me, gathered lots of history and just listened. Turns out my GI knows this doctor because GI #1 studied under GI #2. Small world. Anyway, I checked in using a super-fancy touch screen system that I will now be lobbying all of my doctors to invest in.No more writing out answers that I know no one can read. I got called back fairly quickly. The nurse was really patronizing, but they rarely aren't. A few minutes later, a cute guy came in. Cute guys always make a new situation easier. He introduced himself as a med student and started taking my history. A lot of history. Not just mine either, my family's too.
After about 15 minutes, the doctor came in. She took more history, including the more recent stuff. I told her as much as I could remember, which was a lot since this has been a really traumatic time for me. She didn't have the results of my first gastric emptying study, which are kind of crucial to confirming the diagnosis. She said she trusted GI #1 and believes that I have GP. She also thinks I'm a good candidate for the gastric stimulator!
Unfortunately, I need three more tests to come back negative before I can see the surgeon. So, a week from Monday I will head downtown to feast on radioactive eggs again. Only this time I will get to freak out for four hours instead of two. Fun times. The surgeon requires this study. I have no earthly idea why, since the motility doc said only one delayed study is needed to make a diagnosis, but whatever. The next scan I will have is an MRI of my brain. This is needed to rule out a neurological cause for my symptoms. I will have that done a week from Tuesday in the afternoon. My brother will be coming with me for that one. The third test I need is a study of the arteries of the stomach to check for nan obstruction. It is very rare but some with GP symptoms actually have an obstruction. If this were the case for me, then I'd have surgery to remove it and all my symptoms would go away, which would be awesome.She said not to get my hopes up since it is so rare.
I'll keep you updated!
Saturday, March 17, 2012
Book Review Eight: The Flying Carpet
Hala Jaber's memior of love, loss and war was very engaging and powerful. She, a BBC war correspondent, and her photographer husband spend a lot of time in Iraq at the outset of the U.S. invasion. During an asignment to find a child whose story was compelling enough to help garner donations to a fundraising drive they meet Zahara.
Zahara and her little sister are the sole survivors of a road-side bomb that turned the family car into a fire ball that claimed the lives of their parents and eight siblings as they were fleeing to the safer out skirts of Baghdad. The girls' grandmother sits vigil at Zahara's bedside, while the girl fights to live despite severe burns. Through connections with aid organizations, Hala gets Zahara transferred to a better-equipped hospital. Tragedy strikes.
What follows is a beautiful story of a woman trying to find a way to care for Zahara's family while balancing her life as a war corespondent, wife, and aunt. Good stuff.
Saturday, March 10, 2012
Suffering?
I don't like to think of myself as someone who suffers. I live with the challenges of life with CP. I manage my asthma, and sometimes my depression, when needed. Sure, there are days when I want a break from my chair, want to be able to run, or even just stand for five minutes comfortably. Those are the days when I remind my self that. all things considered I'm pretty lucky. I'm able to care for myself both physically and financially. I do not have seizures or any cognitive issues at all. Other might look at my life and think that because I use a chair, I must suffer. In fact I even had someone look at me once and say "I pray to God every day not to to end up like that!" I'm pretty tough, but that comment brought me to tears. Truth is, I don't suffer.I might struggle and fight a lot of the time but I have a pretty good life. Or I did... Enter gastroparesis.
I know I've written a lot about living with this new companion. I have tried to be upbeat about it. The truth about this disorder though is it makes people suffer. It makes me suffer. The constant nausea, lack of appetite and even the lack of the sensation of hunger, are awful. In order to function I force a limited number of foods down. I rely on my Zofran as a crutch to make it through the day. It only works to turn the volume on the nausea down from a 7-8 to a 5-6, It only works some of the time, and even then it only works for two hours of the six it's supposed to. These symptoms wear on my emotions as well,
On the other hand, I know I'm still lucky. I have never thrown up. I can still eat by mouth, even if it's limited.I have never had an ER visit for this. I've still got some weight I could stand to lose. All of those things work in my favor.
Work is a challenge. A social life? Forget about it. I am so tired after work every night that I can only muster the energy to shower about three times a week. Weekends are a time when I eat much less than I can afford to during the week.
This week, I had an appointment with Dr. Lungs. All's quiet on the asthma front for once. Near the end of my time with him, I started venting about how awful I felt otherwise. He was attentive but I realized somewhere mid rant that he was not the one I needed to talk to.
After the appointment, I called my GI's office and asked them to have her call me back. A couple of hours later, she did. I told her the Zofran wasn't working, but we agreed that because I need to work there really wasn't anything else to try because anything else there is makes me too out of it to function I was surprised by what I said next. I asked her how other people don't go crazy. I told her that I was swimming in my clothes. She asked when I was seeing the next doctor in the string, the motility specialist. When I told her I was seeing her in April, she got very upset. She got off the phone with me, called the motility and called me right back with news that I would be seen Wednesday or Thursday of this week.
I was so happy I told her that I loved her and that she'd made my day. If I do as well with the stimulator as I hope, she may even have saved my life. At least my quality of life.
Time will tell.
I know I've written a lot about living with this new companion. I have tried to be upbeat about it. The truth about this disorder though is it makes people suffer. It makes me suffer. The constant nausea, lack of appetite and even the lack of the sensation of hunger, are awful. In order to function I force a limited number of foods down. I rely on my Zofran as a crutch to make it through the day. It only works to turn the volume on the nausea down from a 7-8 to a 5-6, It only works some of the time, and even then it only works for two hours of the six it's supposed to. These symptoms wear on my emotions as well,
On the other hand, I know I'm still lucky. I have never thrown up. I can still eat by mouth, even if it's limited.I have never had an ER visit for this. I've still got some weight I could stand to lose. All of those things work in my favor.
Work is a challenge. A social life? Forget about it. I am so tired after work every night that I can only muster the energy to shower about three times a week. Weekends are a time when I eat much less than I can afford to during the week.
This week, I had an appointment with Dr. Lungs. All's quiet on the asthma front for once. Near the end of my time with him, I started venting about how awful I felt otherwise. He was attentive but I realized somewhere mid rant that he was not the one I needed to talk to.
After the appointment, I called my GI's office and asked them to have her call me back. A couple of hours later, she did. I told her the Zofran wasn't working, but we agreed that because I need to work there really wasn't anything else to try because anything else there is makes me too out of it to function I was surprised by what I said next. I asked her how other people don't go crazy. I told her that I was swimming in my clothes. She asked when I was seeing the next doctor in the string, the motility specialist. When I told her I was seeing her in April, she got very upset. She got off the phone with me, called the motility and called me right back with news that I would be seen Wednesday or Thursday of this week.
I was so happy I told her that I loved her and that she'd made my day. If I do as well with the stimulator as I hope, she may even have saved my life. At least my quality of life.
Time will tell.
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