Today Is My 2 Year Tubie-Versary!

Just realizing today is my 2 year tubie-versary ūüôā Lately I’ve been finding myself discouraged by setbacks…but looking at these pictures I cannot help but smile seeing how far I’ve come since then! Love that my dad captured the pure joy on my face when I woke up from anesthesia just in time for pet therapy (and before I realized just how tough my recovery would actually be, lol). Here’s to pressing on & continuing to make the most of the life I’ve been given!

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Feeding Tube Change # ?

Getting a new J tube today at Duke Raleigh! This time, they are going to sedate me– hallelujah. I have second-degree burns around my stoma (from bile), granulation tissue and ulceration around/inside of the tract. Plus PTSD from previous changes…yikes. Here’s to hoping the sedation…well…sedates me!

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BE BRAVE

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Feeding Tube Change #3

I am scheduled to take my Medical Terminology final exam today, so doing the procedure without any sedation!  Definitely not excited for the procedure (last time was really painful), but l am certainly looking forward to leaving here with a brand new, clean, fully-functioning tube!  Trying to study prefixes and suffixes for the exam and not let my nerves get the best of me.  Hoping all goes smoothly!

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Waiting for a feeding tube change at Duke Raleigh Interventional Radiology

 

119lbs??!

Guess who now weighs 119 lbs?? ¬†This girl!! ¬†Wow. ¬†I haven’t weighed this much in years. ¬†None of my pants fit anymore!! ¬†But hey, I’m not complaining…that is a great problem to have. ¬†I’ve been working so hard to get to this point. ¬†I’ve had this feeding tube for 9 months now, and it has slowly but surely given me my life back. ¬†So thankful!

Why Your Reaction To My Feeding Tube Makes Me Cringe

When someone sees or hears about my feeding tube for the first time, I tend to get a lot of questions like,

“What is that?”

“What happened?”

“Are you okay?”

The questioning doesn’t bother me; I don’t mind explaining. ¬†I smile and reply that I have Dysautonomia and¬†gastroparesis, at times even thanking the person for asking.

Sometimes I also get the question, “Are you recovering from an eating disorder?”

When I answer no, I get reactions such as:

“Phew! ¬†I was afraid you were one of those girls trying to starve themselves!”

“Oh, so you¬†actually have a problem. You have a¬†real illness.”

I know they are probably well-meaning, but I cannot help but cringe a bit at their response.

I myself have never suffered from an eating disorder. ¬†However, I have had my struggles with major depression, and let me assure you: mental illness is a big deal. ¬†To constantly battle your own mind is something I wouldn’t wish on my worst enemy. ¬†It’s isolating, painful, and absolutely exhausting.

I cannot even begin to imagine how hard it must be to respond to the questions I’ve gotten while actually having a mental illness like an eating disorder. ¬†People have gone as far as apologizing for making an assumption about my tube, as if the very idea of having a mental illness should disgust me. ¬†No wonder people are so afraid to seek help…

The mental illness stigma in our society needs to change. ¬†An eating disorder isn’t simply a girl or boy who wants to look like a model. ¬†Depression is so much more than being sad. ¬†I have watched mental illness destroy the lives of dear friends and tear apart my own family, physically and emotionally. ¬†It’s very real, very serious, and much more common than some like to think…

No, I do not and have never had an eating disorder. ¬†My feeding tube was placed because of severe autonomic dysfunction and a paralyzed GI tract, and while my tube can drive me crazy at times, I am not one bit ashamed of the thing helping to keep me alive. ¬†But those in treatment for mental illness should not be ashamed either. ¬†As a matter of fact, they should be proud of the courage it took to seek out that help! ¬†The only people who need to be ashamed are the ones who have the audacity to belittle someone else’s fight.