Sometimes You’ve Got To Live

Am I the perfect example of a Crohn’s patient? Nope!  As I deal with this disease from day to day, I do not follow all the rules, diets, and advice that I should.  Why is that?  I feel like sometimes I want to live like a person that has nothing wrong with them.  Here are a few examples about what I mean:

Blood work

During my 371 day stint in Temple Hospital, blood was taken at least three times a day. That’s 1,113 times that I know of! So my veins are still shot, and this is about ten years later.  If we add another 300 for the many hospital visits afterwards, I am tired of giving blood!  I feel like a pin cushion.  Since I am on lots of medications, my doctors want me to get blood every month.  That’s at least twelve times a year.  I don’t think so!  Yes, it’s not the right thing to do, but I got to live a little bit.

Sundae twice a year

It’s like the “go hard or go home” mentality.  I don’t usually eat ice cream sundaes because of what it does to me.  But sometimes, you got to live a little bit.  So I spoil myself.  I get a big sundae with all the toppings.  And I pig out.  I only do this twice a year, once in the winter and once in the summer.  I do it on a weekend where I am not going anywhere.  Usually I choose a bad weather weekend, which forces me to stay in the house anyway.  I do have to run back to the bathroom a lot of times.  But I got to live a little.

Guzzling my drink

I hate taking sips.  The reason why I have to take sips of beverages is because I don’t have lots of room for food and drink to do what they have to do.  So I get full so quickly.  If I guzzle, I can vomit.  Also, lots of liquids with meals causes food to run through me quicker, and you know what that means.  But sometimes if I am very thirsty, I will chug a water. Sometimes, you got to live a little bit.

I don’t think forgetting about the disease that has controlled my life for the last eleven years is a bad thing.  I think that if you do things in moderation, it will be okay!  Am I telling you that what I am doing is right and you should follow my lead? No, please do not follow my lead.  I am just saying that I do let my guard down from time to time because hey, I am human.

As much as I love to help people cope with this horrific disease, at times the disease will get the best of you.  What do I mean?  Sometimes you will get frustrated.  It’s frustrating that we can’t eat what we want and when we want it.  It is terrible that we have to constantly look around and make sure that there are bathrooms readily accessible. So what do we do?

We got to live it up a little bit.

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4 comments on “Sometimes You’ve Got To Live

  1. Jludwig1175 says:

    I’ve had Crohn’s since age 11, 31 years… this is the way I’ve always done also! It sucks being in the hospital for wks(usually) & not being allowed to eat or drink anything, not to mention having you’re lips moistened with little pink sponges. Then to make matters worse when your not in the hospital & actually doing ok, you’re body decides what you can eat. I love food but food hates me! So like you,I indulge maybe once a month in food that I know is going to keep me home for the day & a few times/month,at least, I indulge in foods that might make me have to have my bathroom close for a few hrs,if at all…sometimes I just wanna eat what I wanna eat…

  2. TammyJ says:

    That is me through and through.

  3. Sickforever says:

    Well said and very true ! I do the same type’s of thing’s knowing I will pay for it but sometimes it’s just worth it !!!!

  4. Lisa says:

    Very good reading. You have to live…agreed! Thanks for sharing.

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