Wednesday, July 16, 2014

You Can Stare and I Don't Care

For many of us who are chronically ill we come to learn people will always stare! And trust me they do that a lot. I don't think they mean to do it on purpose it's just human nature but it always turns out to be really annoying for those of us who are sick. Like is the person trying to be mean or are they just curious? I often find most people are just curious. They see something different and they automatically have to know more. Sadly more often than not these people are actually afraid to ask. They don't want to be mean to that person they are staring at but to us who are the ones who are being stared at it is more mean to not ask at all. Being the person I am I tend to raise awareness and educate those about my disease. I'm pretty positive if you have ever read my blog before or even just know me as a person that statement would be pretty accurate to you.

Obviously if I go to the beach or the pool and wear a bikini people would stare. Heck people stare even when they see lines sticking out of my shirt or my feeding tube pump beeping! I mean trust me I have noticed it causes quite the disturbance at the mall, school, or even church. I don't mind the stares at all. You learn to overlook them and just mind your own business. It is just my life not theirs. I know what I am doing and if they really cared they would ask me themselves. Some people actually do and I basically just explain well my stomach is broken and I just can't eat like you. So these tubes help me eat and I have to get food into my heart/veins plus that feeding tube that sticks out of my stomach.

Yes I have gotten some very rude people and those who are just idiots. Like apparently my tube is just headphones? YES I really got that question! They help me hear my stomach juices... (SARCASM)  Well you actually CAN plug headphones into your feeding tube...Yes I have tried!

People always tell me they are embarrassed about showing their tube. I personally don't find it a big deal but I know many are scared of being judged by others because they do have a tube. They don't want to draw attention to themselves. Or they just don't like the feeling of knowing they need tubes to keep them alive and they don't want people to know about it. My personal feeling and I guess motto is never be ashamed of something that keeps you alive! That's what I've stuck with! My tubes are my life line without them I would literally drop dead. I have been very open about my disease if people ask me about it. No I am not going to publicize it that I am sick but if you ask that's up to you! There are many friends of mind who don't even know I am sick or just never even realized that fact that I am connected to tubes which is weird to me because I mean it's quite obvious!

I guess those of us who are sick don't know how to tell others who just randomly ask and they feel uncomfortable but we also have to remember those who are asking feel uncomfortable about asking too because they aren't sure about our response. Just keep it simple usually they won't try and go too in depth they just want to know the basics and not everyone has the brain of a doctor or nurse! The general it's just a feeding tube because I have so and so disease is enough. Little kids really don't care. I have noticed they stare less than adults! They just take one look and basically ignore it or they ask what it is and you say it's a feeding tube bc I can't eat like you and they are totally fine with it! While many adults are sadly disgusted by the fact that I even have a tube. It must suck to have a twisted mind that is appalled by anything different! I think I could probably teach them a thing or two about acceptance and today's society.

Anyway what I say is let people stare I don't care! It's my life not theirs they can row a boat and get over it!(Isn't that the saying?)  Anyway what I am basically saying to those who are ashamed of what their disease has done to their body is never be ashamed of something that keeps you alive! That's just the way God made you and if that is fine with him then it better be okay with everybody else! Also to those who are the ones who stare and ask questions. Just be respectful about it! Most of us don't care if you do ask questions because all that means is that you want to know more about our struggle and hey getting a quick science/medical lesson never  hurt anybody!







44 comments:

  1. You are amazing. Rock that bikini and let those tubes stick out all you want!!

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  2. Thank you for the inspiration. I will read your blog to my 27 month old grand daughter

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  3. You are amazing! ! I love your self confidence and courage and positivity. Question: where does one get those cartoon character donuts you have around your tube? I'd love to get some for my nephew.

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    1. They are cloth G tube pads many places to get them. There are many more then what I am posting Just search on FB or google

      Patchwork peddler *
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      Tubiewhoobies *
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      tummy tunnels *
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      TuFe Boutique
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      Feeding tube awareness G/GJ pads
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      Feeding tube awareness clamps and med port covers
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      Feeding tube awareness belts
      http://www.feedingtubeawareness.org/Gtube-belts.html

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    2. Thanks for the extensive list! Now for sure I will find them. If they have disney princess I am going to be world's greatest auntie.

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  4. I just am into my first year living with gasteroperieses I have multiple gallstones and massive hitial hernia. I'm not a surgery candidate. Your so brave and your story touched me and I know if I needed to get the feeding tubes there are ways of dealing with it in your positive light.

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  5. Michaela! YOU ARE AWESOME!!!!

    I am the mom of a 6 year old little boy with a g-tube and this is the first time, in four years, I decided to allow him to swim without a shirt on. He just wants to be like everyone else, but he has a lot of delays and a speech disorder, so he can't really speak for himself (yet!) so I knew that explaining his tubie would be my job. I've been surprised that, so far this summer, no one has been particularly curious- or even asked a question. I imagine that is due to people like YOU who have been out there spreading awareness already! Thank you for being you, I am totally sharing your post today. I love your positive spirit!

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  6. you inspire me:) we are all different and the same in so many ways. it is just that some of us show our uniqueness while others are hidden and that is difficult too. Because when they cant see your pain they expect you to do all the things they do when you cant. I I dont have a feeding tube but can only eat about 5 foods and when in public I get so many questions about why aren't you eating ect and then people make assumptions about why you dontl eat . no one should have to go through life explaining to the world why we are the way we are. I applaud you that you are not letting anything or anyone get in the way of living your life the way you want to. never hold back and you will never have regrets. you go girl! :)

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  7. I love you!! Thank you for raising awareness!

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  8. You would not look so good without it. I know I have a beautiful 16 year old with a mickey button.Keep it out there and donot worry about it. Bless you.

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  9. I love your attitude! My daughter Annabelle is almost 5 and has a g-tube as well. She's also very proud of it and I've noticed that when she feels comfortable with someone she will sometimes say "I have a tube in my belly, want to see". I hope she will always feel confident and proud of who she is.

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  10. My daughter spent her first year with an NG tube after her heart surgery. Thank you for telling your story. People are often rude and comment on her multiple scars, but she rocks her bikini too! :) You are a hero! Thank you for showing her she isn't the only one! :)

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  11. You go! And keep writing -- you have an honest, funny, sweet, intelligent voice. It made my day to read this post, on many levels. :-)
    - Mama to a former tubie

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  12. I've had a tube for 8+ years, and I'm still nowhere near as comfortable about my port site as this. Brava! Thank you.

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  13. You have a great attitude! Thanks for sharing. I hope my 4 year old tube is able to be as positive as you.

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  14. I don't know you but I am proud that you can stand up for yourself and keep living life! Too many people just survive.

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  15. Omg! You are such an inspiration, I am a mom of a 5 year old with gastro paresis, g-tube feed dependent.... God bless you :)

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  16. Hey, thank you so much for providing a voice for our son. He has two tubes (g-tube and trach tube) and I've often wondered what's going through his head when there are wide-eyed stares in public. Given his reactions, I'm pretty sure his thought patterns are somewhere close to yours. The problem is, he's non-verbal, so it's often been a bit of a challenge to know what's really going on. You helped put the pieces together for me.

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  17. What a giving, strong, positive spirit you have. your outlook on life and living with a tube Is something people of all ages and ways of life can benefit from! Thanks for sharing.

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  18. Great post I often get the stares with my port and feeding tube as well. I've learned to adapt to it and let it go.

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  19. I love that you posted this! I am 21 years old and I feel the exact same way! I love wearing my bikini and whatever clothes I want that make me feel comfortable and beautiful because it is how I feel and not anybody else. I have gotten those stares and know exactly what you're talking about and have been ask if it bothers me but it really doesn't. I have learned to be completely comfortable in my skin because like you said, why be afraid to show off something that is keeping you alive and I think that is what some people forget sometimes. Having a feeding tube is nothing to be ashamed of, it's your lifeline and if you want to rock the bikini or crop top then do it and more power to you! I am so glad that at a young age you are able to understand something that many others haven't yet. You're one tough girl!

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  20. I absolutely love your blog ! It's awesome that you can celebrate your differences instead of being ashamed and hiding them away. My daughter was a 1 lb. preemie and had Necrotizing Entercolitis shortly after she was born. They had to remove a large portion of her intestines and she has had a feeding tube for almost ten years now. You are her new role model ! We always buy one piece swimsuits but now she may want to get a bikini ! Thank you for showing other people it's ok to be different! Thank you so much and God bless ��

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  21. My 3-year-old son has g-tube because of chronic GI problems that cause him a lot of pain. I'll share your blog with him, when he's older. Good luck with everything! You're an inspiration to many,

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  22. Very fun to read your blog! Keep on rockin!

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  23. You look beautiful!

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  24. Love your MicKey! Wear it proudly as I wish other would do so as well! God Bless and Rock it, Baby! Love a NICU Nurse

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  25. You're truly inspirational! My kids have lines and tubes too. Thank you for spreading so much awareness.

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  26. You are such an inspiration! YOU ARE BEAUTIFUL!!!!!!!!!! <3 <3 <3

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  27. What an inspiration you are to those with lines and tubes! And to girls in general! AWESOME!!!

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  28. you are such an inspiration , one smart cookie and a beautiful young lady !!!! 2 of my sons friends have G Tubes and i have nothing but admiration for them and theyre families !!! keep up the awareness <3 big hugs and thumbs up from gibraltar

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  29. My daughter gets some of the same looks because of her insulin pump and tubing. She doesn't care what others think either. LOVE your attitude, it's as beautiful as you are! Bless you and keep staying strong! P.S. She has the same bikini too!

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  30. I think this is awesome. My daughter is 4 years old and wears her 2 piece bathing suit with pride. It is the adults who seem to stare and ask "how long does she have to have that " or "why does she have that". Kids don't even notice. Keep up the positive good work you are an inspiration for my daughter and many others.

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  31. It is true and not only the staring but the strange or rude things people say because they are uncomfortable or just stupid.first i was hurt by it but now i think the same way as you do. It is like it is and i have accepted it. Don t let anyone put you down. If they can t handle it it is their problem.daisy

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  32. My girlfriend has GP. This has been, to say the least, the most frustrating and emotional event I have ever dealt with. I have found that she is embarrassed by her tube, camelbak and joey. She is a little closed off about the issue. Throughout the day, I do my best to assure her that I still see her as a whole person. I am slowly seeing results! I've dealt with feeling less than whole, as I am deaf. You're story has really helped me gain better insight about what she might be feeling, and I want to say thank you so much. She has had to quit working, due to her illness. As a result, she has started sewing her own tube patches as a hobby. She has gotten very good at it and might start selling them since they are so expensive to buy. Also, hers absorb so much more! On top of that, she is starting a non-profit for invisible illnesses. If you find the time, please check her out! She really wants to help educate and eventually help others with medical expenses.

    Facebook - Society for Invisible Disabilities (how i found your blog!)
    Silentillness.org

    You're an amazing inspiration and I hope your message reaches the furthest depths of the Earth! Good luck, girl!

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  33. I just stumbled across your story. You are one cool kid. Thank you so much for sharing. Now I must find your current blog posts! You go, girl! I don't know you but I'm so proud.

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  34. You are a beautiful, brave girl! I will show my daughter, who is five and sometimes feels embarrassed by her tubie scar, your story so she can see just how strong and unique tubie people are! Thank you for posting and giving others something to feel proud of.

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  35. You are beautiful! Thank you 🤗

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