Wednesday, August 15, 2012

The Peaks And Valleys

I cannot get plastered with my friends.

Ok, so I may have exaggerated a bit. What I mean is, I cannot drink a "normal" amount of alcohol and/or enjoy a meal amongst friends without getting violently ill.

It was my best friend's birthday tonight and we went to a nice microbrewery the next town over. He bought me a beer. I normally do not drink. I normally do not drink because it is hell for people with gastroparesis since it slows peristalsis. But hey, we're young, having a grand time, and like an idiot I accept. I mean, what can it hurt...?

A lot, apparently.

I have been encouraged to take bites of food "for pleasure" since having to go through the whole NPO (no food or drink by mouth) earlier this year. This has caused a lot of unpleasant feelings and dips in my self esteem as a 25 year old young woman who really, REALLY, wants to be like her friends and appear as normal as possible after being labeled with so many and such a wide range of pathologies since early childhood.

So I sip the beer and I regret it three drinks in. This is not going to end well, says Rational Danielle. Remember what happens when you drink ANY BOOZE AT ALL? shrieks Rational Danielle. You are sick for at least a day, if not more. Your meds for your bipolar are snuffed and you go a little nutty. You forget about the sleep thing for awhile. Then you can't get out of bed. You don't run your feeds. Prepping them takes too much effort. You tell everyone who tries to contact you that you are sick, but you do not tell them why. You do not tell them that trying to keep up with your friends as far as drinks and snacks, etc have made you this way.

That really, you knew better and did it anyway. You did it to yourself.

Right now I am in therapy twice a week with two different therapists using two different modalities (DBT and CBT) trying to cope with all of "this". I do not have it NEARLY as badly as many people do. However, since I am not "the sickest one of all", I feel this enormous pressure to perform. The fact that I am not working (I am on disability) or going to school makes me feel like an abject failure. The fact that I cannot drink safely with my friends or eat without getting really makes me sad.

After I came home from hanging out with friends, I tried every anti-nausea remedy I could think of

2 (50 mg total) Thorazine
25 mg Phenergan suppository
I-don't-know-how-much Compazine
A random Reglan tablet that I crushed and put through my tube
A rescue Klonopin just in case I was anxious

Ginger tea
Ginger candy
Peppermint gum
Warm salt water (with Celtic sea salt)
Sea Bands (waste of money!!!)

Just Strange:
Chewing on pretzels I randomly had in the house
Eating a pack of cracker sandwiches from a gas station we stopped at on the way home
Dissolving Celtic sea salt under my tongue

Non of it worked.

But you know what? Life is a journey. The really important thing is that I made it to my best friend's small get together with two new friends of mine. And besides the whole "I feel like a freak" escapade due to my challenges, I really enjoyed myself.

Now on to some really good stuff!

I am trying to get all of my tube feeds overnight. Now, I am J tube fed. What does this mean? That my feeds go straight into my small intestine (jejunum, hence the term 'J tube'). Since the jejunum is not a holding tank like the stomach is, it can only handle so much of an drip at one time. It is not uncommon for some people to only be able to tolerate 30cc/hour (1 oz/hour) being fed this way. If I am on 24 hour/day feeds, my feeding rate has to be at 60cc/hour to get all of my calories in (1500cc/day=2250kcal/say). Just running them overnight and not during the day at all I am maxed out at 90cc(3 oz)/hour. Which is 1350kcal/day. However, I have some cushion (I'm not hurting for weight right now), and it's a slow process (like increasing by 1cc/week kind of deal). We'll see how it goes. I will keep you all posted

My whole goal for this is to normalize my life as much as possible. I have a MIC-KEY G/J button and part of the fun of that is that when no extensions are plugged in, no one knows you have a tube! However, if this method of feeding creates problems then I will switch back to continuous feeds. I have some really cute backpacks now anyway ;)

It's midnight. I guess that means I should try to sleep now. Going to a live performance of The Lion King at the Fox theatre in St. Louis. Should be fun, but busy day! Deuces <3

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