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Saturday, June 9, 2012

Invisible Illness Survey

Invisible Illness Challenge

1.) The illness I live with is:

Idiopathic Gastroparesis & Gastroesophageal Reflux Disorder

2.) I was diagnosed with it in the year:


3.) But I had symptoms since:

This is tricky to answer. I vomited A LOT in high school but it was contributed to ovarian cysts, since my pain response IS to vomit. However, in late February this year, I thought I had a stomach virus. Then, the stomach virus didn't go away for a few weeks. I was vomiting at least 8 times a day, if not more.

4.) The biggest adjustment I’ve had to make is:

Eating. Eating was never something I had to worry about. I have to watch what I eat. I can’t eat certain things and I can’t eat as much. I feel tired because I’m not getting everything I should from the food that I eat because it won’t ever digest properly. Also, adjusting to a gluten free diet is really hard because EVERYTHING has gluten in it. I also really like fruits and veggies and I can no longer eat those. =(

5.) Most people assume:

That this is all in my head. They think that I choose to stay home because I don't want to be social, but that's not it at all. This isn't in my head and I don't leave the house because it's embarrassing throwing up so much and in public. Although, I have gotten really good at vomiting out of a moving car.

6.) The hardest part about mornings are:

Waking up nauseated. I have to quickly shove down the antinausea pills and then pray that they work. It's also horrible to wake up and immediately vomit. Also, it's hard for me to sleep because of all of the vomiting so my sleep schedule is all over the place.

7.) My favorite medical TV show is:

Does Bones count? Also, I really like House and I'm sad it's off of the air now.

8.) A gadget I couldn’t live without is:

My laptop. It lets me talk with my friends over Skype and Facebook. The Internet keeps me distracted so that I don't focus on the pain in my stomach. One of my friends was hosting a movie night and was kind enough to stream it so that I could participate without leaving my house. I know some awesome people.

9.) The hardest part about nights is:

Esophageal spasms, stomach nerve pain, and stomach spasms. They are probably the most painful thing I’ve ever experienced. I have read that the pain is similar to a heart attack - often people mistakenly head to the ER with esophageal spasms because they think that’s what’s happening. It seizes my chest and it feels like a bunch of needles stabbing at once. I have to say that I've cried more than once because it's so severe. It's even more intense after I try to eat something or drink water. I'm on medication to control the spasms but sometimes I don't take it soon enough or it just happens too quickly.

10.) Each day I take:

Two nausea pills, two anti-spasmodics, an anti-anxiety pill, and an acid reflux pill.

11.) Regarding alternative treatments:

The medication isn't working. I haven't tried the electrical stimulator or the botox injections yet. I am also seeing a motility specialist next week to go over more treatment options.

12.) If I had to choose between an invisible illness or visible I would choose:

Visible. It’s hard to explain my illness to people. They don’t understand how crippling it can be. It's easier to have something they understand.

13.) Regarding working and career:

I haven't been able to leave my house for school or social reasons. I was hospitalized for eight days during Spring semester (I'm a student) and I will now have to apply for a hardship withdrawal. I'm not sure about the future. I might take one class in the fall while I try to sort everything out ... but that's up to my stomach.

14.) People would be surprised to know:

That gastroparesis actually isn’t even that rare, so it’s surprising that more people haven’t at least heard of it. An estimated 5 million Americans have it, and of course there are so many people out there that have it and have not been diagnosed.

15.) The hardest thing to accept about my new reality has been:

That it's permanent. I may be on this medication forever and it makes me scared that the medication will lose their effect the more I take them over time. I will have to permanently not eat like I used to. That’s hard to accept. I live in the South and in Southern culture, food is everything. Sometimes I feel ashamed for being so upset about that fact, because my gastroparesis doesn't compare to things like cancer.

16.) Something I never thought I could do with my illness that I did was:

I had one good day about a month ago and was able to leave my house for a drive to the pharmacy. I was really proud of myself!

17.) The commercials about my illness:

I haven't seen any. I never knew gastroparesis existed until I was in the hospital. I really just thought I was dehydrated with a stomach virus. I do see GPACT posts on Facebook though.

18.) Something I really miss doing since I was diagnosed is:

Where do I start? Hiking, hanging out with friends, going to the movies (I haven't been able to see MIB3, The Avengers, Cabin in the Woods, Snow White and the Huntsman, and I'm probably not going to be able to see The Dark Knight Rises or Abraham Lincoln, Vampire Hunter), eating chocolate, eating at my favorite restaurants, camping, drives to the mountains, going to the park, and going on dates with my husband, playing video games (they make me motion sick now).

19.) It was really hard to give up:

Chocolate, fruit, and soda.

20.) A new hobby I’ve taken up since my diagnosis is:

Blogging. It helps me vent about my frustrations and experiences with this illness. I hope it will also help people who have been newly diagnosed. They can learn from my mistakes.

21.) If I could have one day of feeling normal again, I would:

I would go and eat at one of my favorite restaurants and drink a cosmo! Then, I would hike around my favorite park and look at the geology. I would also hit up a movie with friends or go swimming. I can't tell you how bad I want to be at the beach.

22.) My illness has taught me:

That I'm a strong person and not to take anything for granted. You don't realize what you're taking for granted until it's gone.

23.) Want to know a secret? One thing that people say that gets under my skin is:

“It's all in your head." Or, they think I'm depressed and sitting in my house because I want to. Not true at all. I hate being guilt tripped for being sick, too.

24.) But I love it when people:

Actually care. They come over to spend time with me and bring games and movies to hang out. It really does mean a lot. <3 25.) My favorite motto, scripture, quote that gets me through tough times is: A poem by Richard Kipling, "If."

26.) When someone is diagnosed I’d like to tell them:

It's not in your head. Hang in there. You will be a stronger person because of this. Also, you're not alone.

27.) Something that has surprised me about living with an illness is:

I am amazed at how many people have gastroparesis! It wasn't as rare as I thought it was. It's also surprising that I can't leave my house because it's so severe. I never expected to be on house arrest.

28.) The nicest thing someone did for me when I wasn’t feeling well was:

My husband and roommates have gone out of their way to buy me food that I can actually eat. We take turns cooking and they're always considerate and keep me in mind when doing so. My friends have been supportive. They have offered to drive me to doctor's appointments so that I can vomit into a bucket. They also come over and keep me company. My husband stays home with me to keep me company as well. My family has been supportive as well. They're there when I need to talk and they have done research on my illness to make sure I'm asking my doctors the right questions and for treatment options.

29.) I’m involved with Invisible Illness Week because:

Raising awareness is key. People don't understand this illness and the more we educate, the more it might lead to a cure.

30.) The fact that you read this list makes me feel:

Loved. Thank you for taking the time to read my responses. It does mean a lot to me. I need to get this all out in the open to keep my sanity!
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