Gastroparesis

One thing that I tend to do is to get stuck on the same thing.  The same outfit to wear, the same food to eat, et cetera.  I remember eating cooked chicken skins for dinner for forty-five days in a row, followed by another binge of macaroni and cheese and hot dogs.  Usually, I don't really care for macaroni & cheese but during this time, I couldn't get enough.  For the most part, the foods I crave are healthy.  I eat a lot of fruits and vegetables.  I eat a lot of chicken, but not a lot of other meat.

A few years ago I started losing weight but didn't know why.  I was eating healthy.  In fact, I had just started a new job in which I had a longer lunch break and I was actually able to consume a whole lunch AND have extra time.  I got hooked on salads and chicken, bacon, ranch grinders from Subway.  I ate these every day.  I even ate soup as well.  Lunch ended up being my bigger meal of the day as I wasn't too hungry by dinner time.

I went to the doctor about the weight loss and the other symptoms that I was having to try and find out why.  I didn't weigh a lot to begin with and I definitely didn't want to lose any of the weight that I had.

First off, the doctor suggested stress, depression, major lifestyle changes (new job) as the culprit.  I assured him that I was absolutely positive that wasn't the case.  He wanted me to come back in two weeks.  When I returned I had lost some more weight.  I was really worried.  the doctor wanted me to try some antidepressants.  He assured me that when I went back in two more weeks I would have not lost anymore weight and that I would eventually start to gain the weight back.  I was frustrated, but I did as I was told because he was the doctor.

I went back in two weeks.  I religiously took the antidepressants.  Still lost more weight.  By this point I had dropped under one hundred pounds.  He told me that if I dropped below ninety pounds that he would have to admit me to the hospital.  He wanted to switch the antidepressant that I was on to another antidepressant.  This made me upset because I knew this wasn't the underlying cause.  I wasn't depressed.  I was fine except the weight loss.  The only thing stressing me out was the weight loss.  I agreed to the switch in medication if he agreed to send me for a second opinion with a gastroenterologist.  I also went for a psychiatric evaluation that he wanted me to do.  That came back fine, as I knew it would.  I took the new medication and went for my evaluation with the gastroenterologist.

My first appointment with the gastroenterologist really aggravated me.  They asked me if I made myself vomit.  They asked me how I felt about my self image.  I reminded them nicely that I was the one pushing for the evaluation to get to the bottom of the issue because I was worried and that if I was doing it to myself then I wouldn't have been the one to ask for the referral.  They backed off a little saying that I fit the stereotypical profile of someone with an eating disorder, yada yada yada.  They asked me again.  I was pissed.  They went over history, diet, symptoms et cetera and suggested that they could test for things like Celiac Disease, Crohn's, IBS, among others.  I was like great, let's find out what it is.

My mom had accompanied me to the appointment.  On the way home she was starting to believe the doctors about the depression and eating disorders and such.  I reassured her that I knew there was something else going on.  I knew I would just have to wait until we had the results and hoped that I wouldn't lose too much weight before then.

The test for Celiac Disease came back negative.  Another test that I had to take was a gastric emptying scan.  I had to eat food with radioactive material in it and then have my stomach scanned every hour for four hours to see how my stomach was emptying.

The results of my test came back just as I dropped below ninety pounds.  Luckily, I didn't have to be admitted to the hospital.  I learned that I had gastroparesis.  Idiopathic gastroparesis to be exact.  I understand why this wasn't something the doctors would initially consider.  It is usually a condition that affects diabetics.  In fact, about 50% of diabetics have gastroparesis.  I am not diabetic.

To help the gastric emptying process and gain the weight back, I was put on four doses of Reglan a day.  I took that for about six months.  I do not take it now.  I am able to manage it by watching my diet.  I need to limit the amount of raw vegetables I eat (not a lot of salad) and stay away from lots of fiber.  There is more to it than just that little piece, but it is the part that bothers me the most. 

For instance...getting stuck on things...I like prunes.  I just bought a couple small bags of prunes.  I could eat the whole bag right now.  Between the three prunes I have eaten and the raw baby carrots that I have consumed this past week, I am starting to suffer from stomach pain, nausea, loss of appetite and some others that I won't mention.  This really bites because all I want to eat right now is a prune.  Prune juice is okay, but I don't care for prune juice. 

A lot of people say there is a correlation between autism and stomach issues.  I wonder if gastroparesis is one of those.  I have tried to research this online but my findings are inconclusive.  Does anyone else out there know anyone that is autistic that has gastroparesis??

My Secret

I may as well reveal another piece of information to help you understand my story.  I am on the autism spectrum as well.  It wasn't until adulthood that I was diagnosed, but I have struggled all of my life dealing with something that I didn't know I had.

First of all, let us talk about focus.  At any given point in my life I have always had something to hyper-focus on.  Playing music, progressing at the bank, the three hours I spent watching and then researching this praying mantis that caught my eye...if it sparks my interest I need to know all about it.  If it is something that I could care less about, forget it.  I dislike reading but have read almost every good book about autism because I wanted to learn everything that I could.  Television to me primarily exists to learn about animals and other non-fiction topics.  Except for the History Channel...never really liked history.  Drives me nuts when the television is on for an extended period of time without any valuable content.  Doesn't sound all too bad, does it?

Let me talk about some of my quirky behaviors and 'things'.  First of all, thankfully I have a husband that will do the dishes.  I can not for the life of me touch a dirty dish.  It feels horrible.  Saliva, I can't stand the smell of it.  The sound of someone drinking is like fingernails on a chalkboard.  I always have to walk with Craig on my left.  I have a keen sense of smell and find it almost intolerable to smell things I dislike.  Strong perfumes and flower scented candles are horrible.  I can't stand cigarette smoke either, but that is just disgusting anyway.  I use the same shampoo, conditioner, soap, deodorant et cetera because I don't like dealing with the different smells.  The other day I bought new shampoo and conditioner and I decided to try a cheaper selection but I couldn't get over the different smell.  This is a very small list of things that, well, I dunno, are normal for me but apparently others find odd.

Also, I think I appear to be a 'normal' looking person and don't really ever notice that I am not.  I am happy with myself so I don't notice things all too much, but today, for instance, something popped out to me again.  I was waiting at the kids' gymnastics class, among a bunch of other moms.  I was quietly sitting on the couch reading a book about another family's story on autism, trying to blend into my surroundings as the moms were gathering in front of the observation window anticipating the end of class, when I noticed their feet.  Which prompted me to inspect their hair, dress, makeup, et cetera.  Apparently all of these moms just had pedicures, dressed the same, stylish flip flops, pants and shirt.  Hair done as if they had just walked out of a beauty parlor and about all were wearing make up.  They were all gathered together, talking, looked the same.  They seemed nice.  Part of me envied them.  Part of me wondered why they weren't including me in their conversations, but if they were to talk to me I wouldn't know what to say.  Maybe they all went to school together?  One mom that was sitting on the couch next to me did attempt conversing with me.  She asked me how old my kids were.  I asked her the same back because that is what the polite thing is to do.  I was grateful for the conversation, but didn't know how to keep it going.  The easiest thing for me to do was to hide behind my book and blend into the couch.  Is it me?  Am I not approachable?  I am never mean or rude to anyone, as far as I know, I don't mean to be and haven't been told that I was.  My anxiety would take over anyway and I wouldn't be able to function.

I've worn makeup maybe six days out of my whole life.  I don't have long enough fingernails or toenails to worry about painting.  I wash my hair in the shower and don't brush it until I am in the car.  I don't shower until right before I leave the house, but shower I must before I leave.  I can't go into Subway because I can't stand the smell.  Going into one would require that I shower immediately after.  I do love their grinders, though.  I wear what I like and what feels comfortable.  I have exactly one pair of jeans that I can tolerate wearing.  

I have a lot of anxiety.  Mainly, I want to know what people think of me.  Honestly, no sugar coating.  I am not good at reading in between the lines, but I am totally happy with direct, straightforward information.  If I am confused by something, I am not afraid to ask.  Likewise, anything I say to you is complete honesty.  I don't see the point in telling untruths.  If you ask me if I like your haircut, and I don't, what purpose does it do if I tell you it looks great?  What I think about your haircut doesn't matter anyway because I'm not the one who has to wear it.  If you like it, all is good.  If you dislike it, go get it fixed.

Socially, I love spending time with my family.  I don't have the anxiety I do when I am with other people.  Everytime I am at playgroup, storytime, gymnastics, baseball...I am riddled with anxiety.  I just recently went back on my anxiety medication and it seems to be helping a little bit, but it doesn't want me to go 'hang out' with zillions of people.  It helps me get through what I need to.

Parenting...how does this affect my parenting?  Well, housework could use a lot of improvement.  That is something that I am not interested in at all.  The kids?  I love them so much and they are the source of my focus right now.  I would say I am an A+ mom.  Sometimes I feel that because I am the same as the two on the spectrum, I can see where they are coming from and understand them a bit more, but most of the time I feel as if I am in a world of my own and each of them in theirs.  I am so focused on their lives and their growth that I lose track of myself.  This is becoming more apparent as time goes on.  In less than a year and a half Caitlin will be in kindergarten.  All of the kids will be in school.  Time to focus on myself and my career.  But that is the thing, I feel lost.

My last career, not my last job, was at the bank.  I hyper-focused on my work (to the exclusion of family) and grew in the company faster than anyone prior.  Being at the bank for just three years with no prior banking experience, I was promoted to Branch President of another branch.  My lending ratings and reviews were among the top few of the company.  My only shortfall was managing people.  I couldn't understand (and still can't) understand why others don't have the same drive and focus that I do.  I never understood why some people could get away with things that others couldn't.  And why were there rules if they weren't enforced?  I couldn't understand the social piece...I can't even explain it now.  I didn't want to be a babysitter.

I loved the bank.  I loved the customers.  Everything came easy, except the managing part.  Do I want to get back into banking when it is time to go back to work?  Probably not.  But what am I cut out to do?  I am a gifted musician, so I've been told, but my anxiety gets in the way.  Also, I am a perfectionist and hear every little mistake I make.  I always want to improve whatever it is that I am doing to the point that I find perfection.  Music isn't going to be that for me.  I like to play the piano for relaxation.  I sing because I enjoy it.  I play the flute because it is fun.  I don't want these pleasures to become my job.  I want them to be my refuge.

So, now I am stuck with nothing.  I love science.  Math and English are okay as well.  But what do I want to do?  I would like to go back to school, but first I have to decided what to study.  To decide that I have to take into consideration my 'unique makeup of abilities and disabilities' as my psychiatrist put it.  This is the first time in my life that I have felt lost.

Asperger's in Public

On Sunday we went to a local wildlife festival.  They hold this once a year and it is a very fun place to take the kids.  Everyone was excited to go, especially Kyle.

We arrived early but still had to park quite a bit away from the event.  As we walked towards the entrance we came up to a presentation going on about turtles.  A group of about thirty people were listening to the leader talk about turtles and watching him remove a couple painted turtles that he caught in the trap.  Kyle was so excited but very frustrated.  He loudly was proclaiming to everyone that he couldn't see and tried barging through the cluster to get a closer look.  I took him aside and tried explaining to him that he would get a chance to see and that these people were trying to listen to what the gentleman had to say about the turtles.  The rest of the world did not matter to Kyle, so I decided to keep on walking so that way the crowd could continue to enjoy the presentation.

We made it to the entrance, paid the admission, then set out to decide what we were going to check out first.  We followed Kyle in the direction he wanted to go to.  It was a presentation on creepy crawlers.  As we were heading in that direction we came upon another cluster around a huge tortoise.  Kyle runs up to start touching it...complete disregard to the people that were posing with it for a picture.  I came up right behind Kyle and explained that there was a line and that these people were trying to pose for a photograph.  To him, it was only Kyle and the tortoise in the world at that moment and that was all that mattered.  I gently removed Kyle from the tortoise.  The gentleman that was patiently waiting to take the picture of his family smiled and said 'thank you' which is always nice to see and hear.  As I was 'removing' Kyle from the tortoise he was loudly yelling, pulling away from me and causing a scene.  I tried holding his hand and he kept throwing himself on the ground.  I stood there in line bear hugging him (he likes deep pressure) trying to calm him and explaining that he would get a chance to touch the tortoise but that we had to be respectful to the people that were waiting before us.  The wait was literally only a minute, but the temper tantrum lasted the whole time.  No one said anything to me, but their looks said it all.  I usually don't speak up, but one lady was really bothering me with her looks so I said unapologetically, "Sorry.  My son has Asperger's."  She didn't respond but she stopped her staring.

I don't like situations like this.  Talking with Kyle's psychiatrist she said that there really isn't anything you can do about it but have a thick skin.  I agree with this, but wish that it wasn't that way.  I feel like the easiest thing to do (but obviously not something I would do) when I go anywhere is to make a public announcement so that way everyone is aware of the situation.  My son doesn't look any different than anyone else, but that doesn't mean that the struggles aren't there.

After the first hour, the rest of the day went rather well.  We actually were able to stay there five hours because things went that great.  After the initial excitement wore off, Kyle was more receptive to my instructions.  'More receptive' does not mean that we didn't have anymore meltdowns, just that they weren't as severe.

Also, if you are even thinking of suggesting that maybe this isn't somewhere to take my child...don't even say it.  Not only does my child have the right to be there and have as much fun as everyone else, how else is he supposed to learn?  All of these struggles are learning moments.  Learning for Kyle, myself and any bystanders.  How can anyone be expected to know how to stand in a line without doing it a couple of times?  It might just take my child a few hundred more times than the 'normal' child to do so.  But, I bet those 'normal' kids don't know half the stuff that my child does.  :)