Monday, September 23, 2013

Welcome Home!

Homecoming. Nothing is sweeter than returning home after a long visit away, whether as a Marine serving months overseas or a college student escaping the demands of university for the holidays. For me, though, my house never looked as welcoming as it did yesterday afternoon when my hospitalization finally ended.

Right before I left the hospital - YAY!
Before I write any more, I want to say thank you. Thank you to GlutenDude, a strong voice in the celiac and gluten free community, who spread my story all over the globe. Thank you to the hundreds of readers who have flooded my blog and his site with funny, thoughtful, emotional, sincere, inspirational and every other type of comment imaginable. When I started this blog as a way to release my frustrations and share my successes with celiac disease, I never imagined people would read it.

I never imagined that people would connect with me, and have me connect with them in return. But you guys did.

Okay, back to the important stuff. Me! Kidding. Overall, I'm feeling decent. As painful, challenging, and emotionally draining as my hospital stay was, they transformed the zombie that walked into their doors to a hopeful college student walking out. I've spent most of today sleeping, milling around, and reflecting in pure disbelief on all the news I received in the last 72 hours. But, as much as I already dislike the feeding tube and missing school, I see a light at the end of the feeding tube. How can I not when literally hundreds of people are lighting up my world with their digital support?

I'm sending love back!

In the days ahead, as I slowly start to recover with my parents at home and plan for my return to college next Monday, you will hear from me again and I will keep reading the comments pouring in. Some of you say I'm an inspiration or that I made you cry. My response? Ditto.


Love you guys! Isn't the celiac community awesome? Comment below!

14 comments:

  1. Yes, the celiac community is just awesome. Hope you recover real soon. I'm really glad you are home already. Hugs from Mexico!

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    1. Thanks for the hugs! I'm making a map where all my commentators are from, and you are on it now! :)

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  2. Love your blog! I was diagnosed 7 years ago (as an adult) and it is tough! I know you feel like an outsider. My niece was diagnosed as an 8 year old and it is awful for her as well. So much of our world revolves around food. You are an encourager. I love your great spirit. Good luck Monday!

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    1. I hope your niece is doing well and feels the support of the celiac community! Thank you for the support and the blog love! I will be thinking of you when I start school on Monday :)

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  3. Welcome Home!! The support you receive from the gluten-free community is absolutely incredible. It's hard to explain to others that you have "met" friends though blogging, and twitter, and by become "email pals," but I can honestly say that the people I have met (some face to face, others only through a computer) are some of the nicest/ most supportive people,and helped me through some of the really tough times. Rest, focus on your recovery and keep sharing your story!! I'll be thinking about you and praying that your body gets a little stronger each day.

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    1. I totally agree with you! I have been stunned with the waves of support that swept over me in the last few days, and have enjoyed every second of the ride. Thank you for the well wishes and prayers! :)

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  4. Hang in there! My son was diagnosed at 7 years old, he's now 11, it's really only a minor inconvenience usually - Cheetos are glutenfree so that helps him a lot. :) I was diagnosed at 42 years old and cannot tell you how much I wish I had been caught at an earlier age but at least your generation's celiacs are getting the attention and care they need! Neither of us has walked around with a feeding tube, granted, so that's a level we haven't gone to but I have been hospitalized a couple of times for various things and can now finally say that I feel much better than I did before diagnosis. I hope you recover swiftly and well! Keep telling your story! (Also this is the third time I've tried to post a comment so please forgive if I duplicate...)

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    1. I'm glad your son is doing well - thank goodness for Cheetos! Thank you for the well wishes and no worries about any repeats. I'll take the love twofold :) Keep feeling better and tell your son a fellow celiac is wishing him well!

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  5. I just wanted to say that though I don't know exactly what you're going through, I can definitely relate to being a college student trying to cope with gluten intolerance. I haven't been officially diagnosed; the second my blood work came back positive my doctor gave me the horrible advice to go off gluten before further testing. I wasn't willing to go back on to complete the endoscopy. I know beyond a shadow of a doubt that gluten is a major problem for me though, and it's been disrupting my life for years now, left untreated.

    My condition has never gotten as serious as yours, and hasn't caused me near the pain that you've experienced, but regardless I know what it's like to have your entire life disrupted by this damn thing. Before my stomach issues started, during my own freshmen year of college, I was always on the go, always having fun. My friends and I would randomly decided to make midnight road trips out of town, go down to the lake at the dead of the night. I'd walk for miles and miles without even thinking about it.

    And then it changed. Then I became the girl who never wanted to hang out anywhere other then my own home, because I never knew what my stomach had in store for me. I never wanted to come on random outings, never wanted to be anywhere where I didn't know where the closest bathrooms were. I'd make my boyfriend late for work because I had to pull over three or four times on a three mile drive. No one understood me, no one understood why I changed. I remember my mother getting furious at me at one point for begging to pull over to a bathroom several times on a small road trip out of town. My doctors didn't believe I was sick, and because they didn't, no one else did either, and I was too embarrassed to tell anyone close to me how bad my issues really were getting.

    I'm still struggling gluten free, and many times I've wondered if I have other issues I haven't addressed. I have my good days though, days where I start to remember what normal might be. I know everyone's telling you to hang in there, and they're absolutely right; that's exactly what you need to do. But it's okay to be mad, it's okay to feel that it's unfair. And if you ever need to vent, now you know there's a community around to support you.

    Just like I know that there's others around who understand me.

    Sending tons of positive thoughts your way,

    A fellow college celiac,

    Anna

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    1. Thank you so much for sharing your story - hearing about others' issues and successes is one of my favorite parts about the celiac community. I hope that you continue and find a more healthy way of living, whether that includes discovering other health issues or doing better while eating gluten free. There are more college celiacs out there, and every time I find another one with a story to share, I feel more empowered. We can do this. Despite all of the challenges, we will make the most of college and the time after it. Thank you for the positive thoughts, and I'll send a dozen your way too! :)

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  6. My 15 year old daughter was diagnosed with Celiac Disease in April 2012. Your story seems so similar to hers and I'm just wondering what your doctors think is going on. We go through bottles and bottles of Miralax and the struggle to put on weight seems to be impossible with the stomach pain, cramps, gas, etc. Her 2nd scope in December showed a healed intestine (healthy villi) and the promise of feeling better, but the struggle continues and the feeding tube will be next for her...Is the idea behind the feeding tube that once you gain back the weight, the pain will go away and then you can feel good enough to eat again? And stop the vicious cycle? I am so confused about why the pain continues even once the intestine is healed and proven by scope and gluten free compliance (Gluten-free 18 months). Thank you so much for sharing your story because there are others out there who are searching for answers and desperately want to feel better and be "normal" again. And who are frustrated by the label "anorexic" when body image is not the issue, but stomach pain is. College is on the horizon for her and I am so encouraged to hear that it can be done and can be a positive and successful experience. My thoughts are with you and your family and I look forward to seeing your positive progress over the next month. You're a beautiful young woman and a wonderful role model.
    Jennifer Kealey

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    1. Yep, you are exactly right. The feeding tube is supposed to "stop the cycle." I was, and I'm guessing your daughter is too by the amount of laxatives and stomach issues going on, depleted in the vitamins and minerals needed for a healthy digestive system. Zinc, apparently, is extremely important for digestion and the nervous system and a person can never have too much of it. I would definitely check for vitamin deficiencies, and keep communicating with your doctor. For me, the tube will hopefully allow my stomach to recieve the vitamins it needs to work correctly and allow me to safely gain weight as I add solid foods back into my diet. I'm sending all the luck and well wishes in the world to your daughter, since I know how difficult these issues can be, especially during teenage years. I'm always here for questions and would love to hear more about how she is doing in the future!

      Casey :)

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  7. Hope you've had a relaxing and rejuvenating week at home, Casey!

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    1. Thanks Molly! I was very tentative to miss that much school, but it definitely was needed. Hope you're doing well - and I've LOVED your recent blog posts - so funny!

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