A Different Kind of Different

Happy New Year all! I hope you all had a lovely first day of 2012 and are sufficiently recovered from whatever level of celebration you indulged in last night. I rang in the new year from my bed, asleep. This week has been just awful as far as GP symptoms. Constant nausea and pain. So I went to bed before the magical midnight hour. Anyway, this post is not really about New Years Eve. It's about difference.

I have been different my whole life. Growing up with CP I never fit in anywhere. I could never fully participate in the activities my peers enjoyed, I had some friends who very athletic. I obviously was not. Though I'm not sure if that was related to my disability or genetics, my whole family is not very athletic. We are theatre people. My friends and I had other things in common,  but I rarely hung out with anyone outside of school. The majority of  the houses in the small town I lived in were not very friendly for someone with mobility problems. This made my childhood and adolescence a rather lonely time. I desperately wanted friends who "got" me. I could not really find anyone like that in my peer group until college. I got along much better with adults. That makes sense when you consider that my only extra circular activity as a child consisted of the few hours a week I spent in OT and PT, I was surrounded by adults all of the time. I was too different from my peers to truly belong among them, but I couldn't relate to the adults in my life appropriately either. I was in limbo.

Then I went away to school. At 14, I asked my parents to ask my school district to send me to a residential school for kids with disabilities in my state. Yes, you read that right. I asked to go away. I remember the main thing I wished for when I spoke to my parents was  "not to be the only one" anymore. I wanted to be somewhere where there were kids who were struggling in the same ways I was. They agreed. I got to school, but I still never felt like I belonged. There were people there  with all kinds of disabilities. I had friends with all kinds of challenges, but I only met two other students whose stories were similar enough to mine that we grew close. Even in this environment I gravitated toward the adults.

As difficult and lonely as these years were, they taught me to accept that I would always be different. That things were never going to be as easy for me as they seemed to be for others. I developed various strategies for handling the probing questions and penetrating stares of strangers. I finally had living with a disability pretty well under control.

Then I was diagnosed with gastroparesis. This is a whole other ballgame. Not many people can relate to using a wheelchair, living with spasticity or blindness. Everyone needs to eat though. It is hard to be dealing with a disorder whose symptoms are largely hidden but that are so debilitating. I now must learn to be a different kind of different. I am not sure if I have it in me to do the 20+ years worth of work to accept this new facet of my identity.

Disappointed by the Mail

I was sorely disappointed by my mail just now. I  ordered a case and some other accessories for my e-reader. They were shipped from California, so I was not expecting for a few more days. I ingdom. am however expecting my one hope of gastroparesis  (henceforth GP) symptom management short of surgery. The non FDA-approved drug domperidone is winging its way to me from the United Kingdom. I have been  having horredndously bad GP days for the last few days. I cannot tolerate solid food so am forced to rely on a full liquid diet consisting of three nutrition shakes a day and water. Yummy. Today I have so much abdominal pain, despite resorting to all liquids.
I don't understand. I am on an antibiotic in hopes of helping the stomach empty faster. I take it like clockwork. I still feel awful. I need the new drug to come yesterday.

Back to the mail. I checked it tonight. After digging past a stack of junk mail, I saw three good sized mailers sitting there. My heart,may have beat a tiny bit faster.Finally, I could look forward to feeling even a little better. I ripped the packages open and they were not foreign drugs. They were e-reader accessories. I am sad now.

Come on drugs!

Edited to add: It CAME! I will start it tomorrow at breakfast. Hopefully my salvation has come in a small cardboard box sporting a customs sticker.

Meeting Gastroparesis Part Two: Ultrasound, Eggs, and An Answer

When last we met, I had been experiencing troubling symptoms for about three months anhd had been asked to undergo an ultrasound to rule out gallstones. I arranged to use Paratransit for the trip and got all the paperwork together.

The hardest part about that day was the fact that I needed to be completely NPO (Nothing by Mouth) prior to the exam. Not eating would not be a problem since I was doing so little of that lately, Not being able to drink, now that was a different story. I was up at 7 for an appointment at noon. I could on;ly drink enough water to take my morning medications. As a master pill swallower, this meant very little water for me.I distracted myself by playing online until Paratransit came to fetch me. I got to the hospital about an hour ahead of my appointment but luckily they were able to get me in early. After some finagling with techs who could not understand the idea that they'd need to help me get from my chair to the gurney and back again, the exam was done.

I waited the obligatory week, and called my GI's office for the results. She called me back the next day and said the ultrasound did not show any abnormalities in my gallbladder. As she always does, she asked how I was feelilng. I told her honestly that the nausea and pain were out of control. She said she had one last idea to try to solve the puzzle. She sent me an order for a gastric  emptying scan. After playing phone tag with the hospital's scheduling line, I got it scheduled for about two weeks later. This is where the real fun started,

Before having one ordered I'd never heard of a gastric emptying scan. So, being the compulsive researcher I am I immediately Goo.gled it. It turns out there is only one diagnosis to be confirmed or ruled out by the gastric emptying scan. I'll give you three guesses what it is. If you guessed gastroparesis, you win! For the test I had eat two entire scrambled eggs (a lot for me these days sadly). The eggs contained a small amount of radioactive tracer to allow their progresss through the stomach to be tracked. After I choked down the eggs, I was transfered onto the scanner table and strapped down six ways to Sunday. I have an irrational fear of scanner or X-ray tables that deserves a post of it's own, so I was very grateful for the extra security or at least the illusion of it. I freaked out for the first ten or so minutes of the scan which took place in a machine somewhere between a CT scanner and an MRI. After lying still for 90 minutes, I was released from my bonds and told to follow up in a week for results.

I did as I was told and called my GI first thing the next Wednesday morning. I spent the day anxiously awaiting the call from  my GI. Simultanously I was having pulmonary function tests done to check my asthma weary lungs. The GI didn't call that day. She called that night. From her home, or some other restricted number. I missed her call, but she left me a nice long voice mail. The gastric emptying scan was abnormal, meaning that the food sat in my stomach for much longer than normal and would certainly explain my symptoms. She wanted me to come in to the office to discuss next steps. I called the next day and made an appointment for two weeks later. I had a diagnosis!

Unfortunately my research was not really hopeful for a quick fix, Many people with the disorder struggle to get good symptom control and maintain adequate nutrition. There are only really two drugs shown to treat symptoms of gastroparesis. One has awesome side effects like dyskenias, the other is not available in the U.S. Great news! So that's where things stand right now. I am waiting for the non-FDA approved drug to get here from the UK. While I'm waiting I am on an antibiotic as a prokinetic agent. As proof of its awesome power to do absolutely nothing, I have eaten nothing  but saltines and Ensure since starting it. A week ago.

Lovely.

Meeting Gastroparesis Part One

I have felt sick for months. It began on an ordinary July day. I had stayed home sick from work to recover from an asthma flare, I woke up that morning feeling exhausted and knew that a sick day would be better than trying to work in that condition. I managed my asthma through the morning. It got to be lunchtime. I pulled out a yogurt and a string cheese and ate them. I was so tired that I went back to bed for about an hour. I woke up in a lot of pain and became ill. I was sick several times that day.

The next day I decided not to eat much to hopefully get my system back on track. I ended up needing to come home early from work that day because I was too sick. That was a Friday. I struggled through the weekend, relying on sports drink and saltines to get me through. On Tuesday, I broke down and called my primary doctor.

She thought that my recent round of steroids had caused some inflammation of the lining of my stomach and put me on a medication to treat that and instructed me to call her in a week. I dutifully took the medication and felt no better. I called her as instructed and she decided to refer me to a gastroentrologist. She even called and made the appointment for me. I was elated, now I would be getting better and could eat again! Boy was I mistaken.

Appointment day came. I felt awful that day. I rolled into a tiny exam room.  The doctor walked in and we went over my entire medical history. He wanted to know every medication, every surgery. We talked for 20 minutes before he laid hands on me. He eventually told me to eat more and increase my fiber intake. At this point I was desperate to feel better, so I forced myself to eat more food and fiber. Three weeks passed and I went back to that GI to follow up, having followed his advice and not feeling any better. We had a conversation during which I realized he had no clue what was wrong. He recommended I see a neurologist. When I asked why, he claimed that I may have a second brain   injury to blame for my symptoms. I did not buy this. The next day I made it my mission to find a second opinion. After some searching and calling around I found a new GI and made an appointment for the next week. I had hope again!

Appointment day came around and we went over my recent history. I told about the nausea and pain. I also told her how unhappy I was with my first GI. She was very understanding and did not buy the previous  doctor's theory.  She genuinely wanted to help me. Her first idea was to run a test called an endoscopy. She would sedate me very heavily and pass a flexible lighted scope from my mouth, through my esophagus and finally into my stomach to see what the structures of my esophagus and stomach looked like. Because of logistics, the procedure was scheduled for six weeks later. An eternity, but at least I was getting somewhere,

The day of the procedure was kind of a blur of rushing to get to the hospital on time and finally the procedure itself. The doctor was able to tell me that my stomach was inflamed but asked me to call her office in a week to get the results of biopsies she had taken. She also added another medication to treat any reflux that might be happening.  When I called for the biopsy results, the doctor called me back herself. She said that the biopsies were normal. She asked how I was feeling and determined based on my answer of  "lousy" that she wanted to get an ultrasound to check my gallbladder.

Now it's late and I will put this long story to rest for tonight. Stay tuned for part two, "Ultrasounds, Scary Scrambled Eggs and an Answer"