Catching Up: Where Oh Where Could that MRI Be?

I'm still alive, I swear! A lot has happened in my little corner of Sick Girl Land as you'll soon see. Over the next week or so, I'll be catching you up. For now, jump into your time machines with me and travel back to March 26th and 27th. Today, we learn how MRI's can roam the world freely.


The day after my four-hour emptying study, I was scheduled for an MRI of my brain. This is done to make sure that there is no abnormality of the brain that could explain the symptoms of GP. This time I asked my brother to come with me for the scan. I didn't think I had it in me after the emptying scan to face the MRI on my own. It turned out to be a very good thing that he was with me.

I got to Big Academic Medical Center with little time to spare, having come directly from work. My brother was waiting for me already. I went to check in. The woman at the desk rifled through some papers for a minute. Then she told me I wasn't on he schedule. OK...where was I on the schedule? The woman gave me directions to a new location where she said they were waiting for me. I went and told my brother about the snafu, and we set off to find the right location. After some confusion about directions, we made it to our destination, a sleek office building. The security person said that there was an MRI scanner in the basement, and told us how to get to it. We took the elevator down and followed a hallway with a lot of twists and turns. We got to the MRI. I tried to check and the the tech told me that his scanner wasn't a brain scanner, that I must be at the wrong place. Was he kidding? Where the heck was I supposed to go? He gave us directions to a third place and off we went. At this point I had missed my appointment, and I was nervous that they wouldn't scan me.

I finally got to the right place, checked in and filled out paperwork. They finally called me back and promptly led me to a dressing room to change into a gown. Two things were wrong with this sitiation. 1. No way was I completely changing for this scan. This was not my first time at this particular rodeo. I had been smart enough to wear pants that I knew were MRI-safe that day. 2. The dressing room door was so narrow I couldn't fit through. So, after I asked whether I could just take off the things of my outfit that weren't MRI safe, and finding a bathroom I could use to do it in, I was ready,

The tech who would do the scan came to talk to me and seemed to want every last detail of my medical history. After what seemed an eternity, we were ready to get the show on the reoad. The tech looked like he would not have been able to lift me, so with some direction from me, he and my brother hoisted me easily to the table. At which point I started to panic. This MRI didn't have any straps to help me feel more secure on the Scanner Table of Death. I cried and begged to no avail, until I simply closed my eyes and they slid me into the magnet.

Typically techs talk to me before starting every series of images, I heard not a word from this guy. Every time I heard the telltale pinging signaling the beginning of a new set, my overworked startle reflex went a bit crazy and I jumped a foot. Fun. It eventually finished, A new tech and my brother put me back in my chair, I got changed and we left. I was so glad to be done!

A week or so later, my motility specialist called and said that the MRI had come back abnormal and they needed an old one to compare it to. I called Big Academic Medical Center where I used to live and got them to send me a copy of my five-year-old scan that I'd had done there. After some delay due to being admitted to the hospital (a super-fun time, I'll tell you about it in the next series of posts), I dropped the disc off with my motility specialist. She called and said that comparison showed no new changes between this scan and the old. I didn't think there would be. I mean, I have CP, which means my brain is screwed up anyway. Essentially that's all they found. Hooray for being normally abnormal!

Next up:The 2012 Coughlympics Begin.

Catching Up: Radioactive Eggs Take Two

I'm still alive, I swear! A lot has happened in my little corner of Sick Girl Land as you'll soon see. Over the next week or so, I'll be catching you up. For now, jump into your time machines with me and travel back to March 26th and 27th. We find our intrepid heroine about to take on the evil radioactive eggs once more....


I got to Big Academic Medical Center very early on the morning of my second gastric emptying scan. I checked in and waited for a bit. Then a nurse called me back. She asked if I'd had anything to eat or drink yet that day (I hadn't, as instructed) and if I was allergic to eggs (I'm not, thank God.The alternative food for the scan is usually oatmeal,blech.)  This time, I needed blood drawn beforehand, so we got that taken care of. The assumption of most of the medical world when it comes to gastroparesis is gastroparesisis equals diabetes.Not so for me, but I submitted to the blood draw peacefully. After that, the nurse showed me the way to the nuclear medicine suite where the scan would be conducted.

A radiology resident came out of his hidey hole and we chatted about my history and diagnosis. He crept back where he came from just in time for the door behind me to open and for a tech to stick hios head out to ask what kind of jelly I wanted on my sandwich. Uh, JELLY? Whose bright idea was it to put jelly with scrambled eggs. Nasty crap. When the guy wouldn't take "None!" for an answer, I acquiesced and asked for grape. Soon, the tech brought me his magnificent creation. It was then that I saw the signs on the door through which he'd just come. "Staff must wear protective gear at ALL times" read one sign. Several florescent green and red bio hazard symbols were plastered to the door as well. I was supposed to eat something that came from there? Bring it on!

I refused to even acknowledge what I was eating and downed two thirds of the lovely sandwich. I then was transferred to the scanner table and put in my ear buds and closed my eyes. Joshua Radin's soothing voice took me away and the first 90 minutes of the scan sped by.

I was transferred back to my chair for 20 minutes while we waited for the two hour mark. At two hours. I was scanned again and then put back in my chair, this time to wait it out until the four-hour mark. I was still not allowed to eat or drink. I took my Kindle and my phone and hung out in the waiting room for about an hour and a half. Fun times! At four hours, I was scanned again and then left to meet a friend.

Fast forward three weeks. My motility specialist called to tell me the results. She said at two hours my  emptying time was nearly normal. I started to think she was going to refute the gastroparesiss diagnosis and that I'd be back to square one in terms of trying to figure out what was going on. Her next sentence put to rest any of that nonsense. "However, at four hours the scan was highly abnormal." OK, good! My answer wasn't changing. I could live with that.

Stay tuned for tales of roving MRIs, excellent doctors and a hospital stay.

Motility Specialist Update

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!

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.

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.

Book Reviews Five and Six: Critical Care and Bonobo Handshake

I am kind of a medical junkie. I love all the real-life medical shows on TV, movies about medicine and books about it. I think if I had two eyes that worked and two good hands, I migght have gone into medicine. Theresa Brown's Critical Care was a good way to get my medical fix. It's a recounting of Brown's first year as a nurse on a medical oncology floor. She had come to nuring late after teaching English at a majore university, so it was really well  written. It was sad, but she was writing about cancer paitents so I wasn't so surprised. It  was good.

Vanessa Wood's Bonobo Handshake was good too. It was about the author's time in Congo studying bonobos and chimps. It had a lot of history of the wars fought in Congo and Rwanda. Which was the best part for me.

I am woefully behind on these. I am current on book ten of the year. Stay tuned for more.

A Long, and Long Overdue, Update

I'm still here! A lot has happened since last we met. My lamp broke in my bedroom, making blogging tough, as I usually write at night, which is why I didn't tell you until now.

First, we lost my maternal grandfather on February 9. He'd had a good life, but I wasn't ready for him to go. He has had Parkinson's for my whole life. He and I had an unspoken bond. We both inhabited bodies that do not listen. He understood being "broken". He got that part of me better than anyone else in my family can. Now he's not struggling. I'm relieved for him. I haven't seen him in about a year and a half. Everyone says that's a good thing.

 I went home to attend the service. It was good to see everybody. My three-year-old niece was very excited to have me stay with her. We watched The Princess and the Frog a lot.We went to playgroup, where  she introduced me as "her" Emma. When one of her playgroup friends came up to say hi, she came and said again that I was hers. It was pretty cool.

As far as health stuff, I am kind of all over the place. I finally got the Zofran about a month ago. It takes the edge off the nausea, but I still feel awful. Side effects have been pretty bad and I am just starting a new medicine to counteract that. Crossing my fingers that straightens me out. In other news, it is 44 days until I see GI number two. I can finally see the end of this part of the tunnel. One day at a time.