A Whiny Rant… Cuz it feels good to let it out

I haven’t posted in a while. I’m still following a mostly-liquid diet, but the past two weeks have been mostly flare-up free. That changed last night… I was working in the art building, singing cheerfully (and badly) to my iphone playlist, when nausea, bloating, and lightheadedness hit all at once. I literally fell to my knees and was too disoriented to realize what had happened for a few seconds. I spent a few minutes slow breathing and trying to hold down the contents of my stomach before regurgitating some of my banana-protein smoothie from four hours before. I half-crawled down the stairs to the snowy outdoors, where I sat for 15 minutes praying the spell would pass. The cold shock helped a bit with the nausea, but I felt queasy and stuffed all night. Stomach churning and reflux kept me up till 4am. At least I didn't hurl.

I felt better this morning and had a fairly productive first half of the day, but my stomach swelled up again in the late afternoon, and I’ve been battling nausea and reflux since. It’s so frustrating and lonely that nobody around me understands what I’m going through. This is partly my fault, because I don’t talk about my illness very much, but the handfuls of people whom I have shared my stories with usually forget about it or avoid the topic like the plague. Their reactions make me feel so uncomfortable and awkward. When people see me “off” or in pain, they don’t know how to react, and they turn away or change the subject. Nobody wants to hear that it’s not getting better and that there’s nothing they can do. I wish they could understand that all I really want is a little sympathy… a hug, or a “that sucks”. IT’S OK TO TALK ABOUT IT.

My mom is too stressed out with Christmas guests and party plans to talk, so I don’t have my usual long-distance support either.

I hate times like these.

 

I feel sick and fatigued, but I’m too symptomatic to sleep. My mind needs to shut off so time can soothe my digestive tract, but the stubborn derps are too busy shooting up gastric acids and leftover lunch to allow me to rest. I can’t concentrate on anything—even movies—and I’m constantly dissatisfied with the temperature—it’s always either too hot or cold. It will be another long, bad night.

 

That said, tomorrow will be better. I’ll wake up and sip at baby food, Boost, and smoothies. I’ll try to walk around a bit. Hopefully my stomach will get with the program and stay functional all day. My parents ask what I want for Christmas, and the only thing I truly want is my health. I don’t care how sappy or melodramatic that sounds. In less than a week it will have been a full year since my full-time onset of gastroparesis, and my greatest wish is that this unwelcome idiopathic visitor won’t stick around for another year. You’re not welcome here, gp and gerd.  

Giving Thanks

Last night was awful. I was in pain for two hours, acid reflux and stomach sensations kept me awake till 3am, and I threw up undigested pieces of my lunch. I felt hopeless, depressed, and lonely.
      “This can’t keep happening.”

      “I can’t take much more of this.”

      “Will I make it to the end of the semester?”

      “Will I be able to come back next spring?”

 I woke up feeling rejuvenated and hopeful. It’s Thanksgiving Day, and corny as it might sound, there is so much I have to be thankful for:

1) A family who loves me unconditionally, and sympathizes with what I’m going through

Gastroparesis makes it difficult to have a life. One minute I’m fine, and the next I’m nauseated, vomiting, refluxing, and crying. Flare-ups are terrifying, and they're lonely.

 

I am so blessed to have parents who hug me instead of finding me disgusting.  Parents who read books about my disease and help me find good doctors. Seeing me sick all the time has got to be a huge burden on them, but my parents smile and tell me that they're there for me. Their loves means everything--I couldn’t function without my mom’s support and encouragement.  

2) I am in school, and about to finish another semester of college

Before my doctor put me on domperidone, I couldn’t do anything. My brain was in a constant fog, my stomach in a constant, writhing knot, and it was all I could do to get out of bed. Being back in school and being able to live like a normal college student feels amazing. There have been a lot of rough patches, but I have made many great memories over the past few months, and I’ve come a step further in my education. I’m proud of myself.

3) I can still eat and enjoy food

To the average person, my diet looks ridiculous. I eat like a baby.

What people don’t understand is that some patients with gastroparesis can’t eat at all—there are patients with feeding tubes, patients getting surgery, patients who can’t even tolerate the minimal amount of saliva a person swallows each day. I’ve only had a taste of what these people experience—I’ve only had short weeks of time where I couldn’t keep anything down. These kinds of weeks taught me to appreciate the foods that I can tolerate. Purees, soups, and smoothies can have awesome flavor profiles, and I’m lucky to be able to enjoy them without getting sick afterwards.

Today for Thanksgiving I made chicken soup, sweet potato puree, and blueberry-cranberry jello. It was terrific, and I feel great. 

I'm so thankful.

Parties and Spoonies

Today was another good day!! I accomplished 8hours of homework and performed again (big success!). Now the show is over.

There's a party tonight, and people are asking why I'm not going.

"When you’re chronically ill what you want to do and what you should do very rarely coincide, and no chronically ill person should ever be made to feel guilty for choosing what they feel is best for their health, both mental and physical, at any given time." --anonymous Tumblr post

 Does this mean I never party? Of course not!

I recently became aware of the spoon theory, a model used by a lot of chronically ill people ("spoonies") to describe their daily life. Spoons are an intangible unit of measurement which represent how much energy a person has to spend in one day. Healthy people do not feel the impact of using spoons. Chronic illnesses tend to take a huge toll on one's energy, so "spoonies" have to be careful to plan and keep track of the number of spoons they use each day. When they run out of spoons, they need to rest and recharge.

Today I ran out of spoons. After the last show I pushed myself, partied till 3am, and was sick the whole week afterwards.

Tonight was fun, but I'm going to take care of myself and get some rest so I can enjoy tomorrow too. I'll party another weekend when I have more spoons left to spend, and keep getting the most out of my college experience.

Feeling... Normal!!!

Today's the first day of the week where I was able to attend all of my classes. I didn't collapse in exhaustion during the middle of the day, and my food (liquids only) went down like it was supposed to. I just got back from acting in a circus-like entertainment production where I manipulated poi, ran, and laughed like a normal college student.

These kinds of nights are the reason why I grit my teeth through the bad days and push myself to stay in a rigorous out-of-state college.
#Feeling pleased, proud, and normal

Life's all about the little things

Today I ate cornflakes. No pain, no nausea, no reflux. They’re the first solid food to stay down symptom-free in two weeks. I finally feel like I have some energy, and I can’t stop smiling. Perhaps this is the start of better days... :)

 

 

Invisible Illnesses

 “You don’t look sick.”

“You look great!”
“You’re okay now right?” 

“It could be worse!”
“I wish I had no appetite!”

“Ew. That’s so weird.”
“When are you going to be normal again?”

  

I smile a lot and look normal, but I wish people could understand…

 

(Photo Modified from an idea on Molly's Fund)

 

No appetite, no energy, and curled up in pain again. I missed my last two classes today. People can tell something’s off, but talking about my illness makes them uncomfortable/awkward, so most quietly turn the other way.

I need a hug. :(

Introduction

My life right now:

-I'm a college sophomore with a 3.9GPA

-I'm the President of my college's chapter of Toastmasters (an international public speaking and leadership organization)

-I spin fire, I speak German, and I raise awareness about public health issues

-I have Gastroparesis

I try to live by Carpe Diem, but my health is a roller coaster. I don't want to let my college years pass me by, but a lot of the time that's what feels like is happening.

 

Medical History

-After six months of dealing with severe GERD and SIBO, my stomach stopped working. In January 2014 I was diagnosed with idiopathic gastroparesis--my stomach digested FIVE TIMES SLOWER than a normal stomach. And it got worse... over a matter of weeks I went from only being able to eat soft foods like rice and porridge to barely being able to keep liquids down. Most of the time, I couldn't leave the couch, my head was in a fog, and everything felt BAD.

 

-After my gastroenterologist prescribed Domperidone I was able to leave the house and live a little. I could meet friends for short periods of time, and I even managed to take a class. Eating was difficult and I was sick a lot of the time, particularly at night when symptoms tended to be worse.

-My health yo-yo'd every few weeks--sometimes I felt ok (almost normal!), and bad days were marked by reflux and nausea--other times I couldn't eat at all and was stuck in bed with severe abdominal pain.

-After a low point in June where I was throwing up and seeing black like I was going to pass out, a course of Xifaximin and Neomycin drastically improved my SIBO and made me feel more energized. I was able to go to parties, hike,and enjoy spending prolonged periods of time socializing. Things were looking up when I returned to college for my sophomore year. 

-Managing gastroparesis in college is difficult--college life revolves largely around food, and smells alone can make me nauseous. Most people were uncomfortable hearing about my illness, and even those who tried to understand couldn't fully grasp it. I had to miss classes and skip out on numerous social opportunities during my "bad days." Overall, however, I was happy and managing well.

-in October I took a trip to the Mayo Clinic to find out if there was anything more I could learn about or do to improve my symptoms. The week itself was awful--I had to go off Domperidone for them to run some tests, and I spent a lot of the time throwing up and in pain--but I came away feeling positive: the doctor said my stomach emptying study had improved drastically since January!!--a positive sign I would recover from this evil plague! He said I may always have sensitivities to certain foods and should be careful with my diet, but we expected continued improvement. I returned to college with renewed hope.

-two weeks after the trip, BOOM. Gastroparesis reared its ugly head again and knocked me flat. I woke up at 3:46am throwing up buckets, and I haven't been able to keep anything solid down for the last 8 days.

That brings me to the present. I missed a lot of class last week, as well as rehearsals for a big show this Friday. Nothing I consume--even liquids--sits well. I have bad reflux, nausea, and periodic severe stomach pains. I feel so weak, just getting out of bed is a challenge.

But, I'm doing it. I don't know how much longer I can keep it up, but at the moment, I am extremely proud of myself and redefining what it means to be strong. I've put so much work into this semester--I refuse to let it all fall apart with the end so close in sight.. 

I'm praying things will turn around any day now… I’m craving real sustenance and in desperate need of energy and a clear head… and I’m starting this blog as an outlet for my feelings. I hope I’ll someday be able to look back on this first post and marvel at how far I’ve come in this journey.