Side note: vanity sizing in implanted medical devices? Why can I comfortably wear a MIC-KEY 1.0cm G button and a 1.2cm AMT button is now too small? New AMT Mini ONE balloon button coming in today. Cannot wait. Already annoyed with this MIC-KEY.
I started having accidents four days ago.
I'm 26 years old.
I am now incontinent.
Many here may have felt stripped of their dignity. But when you and your BFF go to Wal Mart to buy Pampers Underjams (and she is so loving and supportive about it)...it is heartbreaking.
So is being admitted (again) and having a nurse clean you up...and you didn't even feel anything.
I was ok last year when I was diagnosed with neurogentic bladder. But fecal incontinence? Buying Pampers because adult brands are too huge? Getting odd looks because you don't look old enough to be buying them for your own kid (though I could have a kid by this age. But my growth was stunted) and you are wearing a kiddie face mask because it's cold and flu season and you have no immune system...limited T cell function...and youn are AT WAL MART.
They stare at you. They whisper.
When I was wheelchair bound I was pitied by strangers. Now? Now I am the girl people stare at in public places because I am obviously having problems. I am obvioisly ill...I look better as in not totally emaciated. But when you bend over or lift your shirt to let the nurse see your G tube she asks
"Is that a baby diaper?"
Yes you moron! It had TRUCKS on it! For crying out loud! Why does that bother you? You work in healthcare. It's part of the job. Your job.
In moments like that you MUST CLING, MUST NOT LET THEM STRIP YOU OF YOUR DIGNITY.
It isn't for anyone else to decide how you should feel about you. But here are some other ways to cope with embarrassing aspects of care and still feel confident:
Ask for support from anyone who you feel you can talk to. Initially you will probably be mortified. A good example is when someone gets a new ostomy bag. You feel like a part of you is lost (and it is!). You need to talk to someone about how you feel. What ever you do please promise you will not isolate yourself. You are still YOU! You are still as wonderful and your life is still important even if now you have new vulnerabilities. It's still ok. You are still ok...there is nothing wrong with you as a God given soul.
Just do it What do you need to do? Purchase Pediasure but you aren't a child? Drag a bile bag around? Anything in between? This is your self care too, even if you hate it. This doesn't define you unless you let it.
Be open when you are able. Just look at my photo for this post. You can see clearly that it is not an adult pull up. I'm writing about this on my blog! Do you think this is anything I ever wanted to happen? Do you think even this co.es easily to me? It does not. My bestie can tell you I was a mess. A wreck over it. My pastor knows how ashamed I felt...like it was my fault. But this is how I am choosong to deal. Confront it. Tell YOU. Still walking with YOU through this journey. Because I never want anyone out there who struggles to feel alone. You are hardly alone. Don't allow yourself to be bound in shame.
Stop taking yourself so seriously please. Don't make light of your feelings...but see the good in it. I mean, if I ever get my period back, I have a built in pad! These things have trucks on them! My new ones coming in are boxer short type and look more like panties and are solid colored. Pull ups...in vogue? Probably never. But imagine it: models dlwn the runway and some snooty french man introducing the name of some model from Italy wearing Huggies Redux by Armani Exchange. It's hilarious!
I cried over this while in hospital this past weekend. My doctor came in and she said "You are in hospital! This happens a lot. We know how to help and we want to help you. You have been through a lot. Where is your smile?" (I'm crying and she makes a goofy fac at me. Then a frowny face. "Don't you dare smile. Come on. Don't smile and don't laugh. Oh no!" I giggle at this time. Everyone needs a doc like Dr. O).
New issues. New struggles. There isn't anything I can do to make this go away. But...I can still make a choice. While I will order most of my stuff online, when I go to Wal Mart in a coordinated outfit and wearing a Mickey Mouse face mask...if I am stared at...I'll just wave. Give a peace sign. Or the bird.
Whichever I'm in the mood for.
Life is still beautiful