Dear Deni circa 2001

Day 6 assignment asks us what we know now that we wish we knew when we were first diagnosed.

Again it's different for me because I was so young, 14, when I was diagnosed. So there are a lot of things I know now that I wish I knew then! 

Such as, there IS such a thing as too much lip smackers cupcake lip gloss, Dr. Martens are not the height of fashion, and having 648 butterfly clipies in your hair isn't as ravishing as you think. 

But I assume the question is in reference to our Ic. In which case there's even more I wish I knew back then. So if I could go back and pass a perfectly folded note to 14 year old Deni, I'd write to her these 10 things. 

1. You are not weird because you're sick. Well... You are weird. But not cuz your sick.

2. You didn't do anything to cause all of this, it's not your fault.

3. The friends that are true will stay by your side, forget about the ones who leave you behind.

4. Cling to your family more than anyone, they'll be with you every step of the way.

5. One day you will get a myspace (you have no idea what that is but don't invest too much in it when the time comes, it's short lived) message from a boy that you know now. I won't spoil the surprise but he is one of the kindest boys you know and he will try to support you through this diagnoses but you'll push him away. Don't worry. He won't hold that against you in 5 years. You will marry him and he will be your best friend. 

6. As much as you feel like your body is turning against you and torturing you during your period. It's going to be the means to a beautiful, blessed child one day! 

7. Don't try to wear clothes that flare up your pain just because you think you have to be trendy! Also, believe it or not leggings will come back into fashion! 

8. Ask Dr. Brown for zofran! It's a miracle drug that helps the nausea. You'll eventually become allergic to it but enjoy it while you can.

9. I'm so proud of you for working so hard to keep up with other kids in school even though you're doing it mostly from home! Keep it up and you will graduate with your class, I know that seems impossible now.

10. Last but definitely not least- you are not IC. You have IC. You are beautiful. You are smart. You are faithful. You are kind. You are hilarious. You are loved by your family and God. 

Day 3, 4 and 5 of IC Awareness Month!

Day 3's assignment for IC Awareness Month was to pick a theme song for your IC... Which is funny because a few months ago I wrote this little ditty to the tune of the chorus of Last Kiss by Pearl Jam...

"Oh flare oh flare would ya leeeave me be? Lord please take this away from me. My Pain's eleven and I know it's not good... when I just want to saaaay bad words!"

Haha I crack myself up!

Day 4's assignment was to write what IC has taught you about yourself... We have to submit our answers by midnight of the day and I posted it at 12:03 this morning so it's short and sweet but so true about myself!

I’ve heard a few times how lucky I am that I was diagnosed with IC so young because I don’t know what life is like without IC so I don’t miss it as much… Interesting theory…

The truth of the matter is I have no idea who I would be today without IC… it has molded me into the person I am… in good ways and bad! The bad seem obvious and hardly worth mentioning but the many positive attributes I have gained by serving my sentence of life with IC have been surprisingly beneficial.

I would say the biggest gift IC has given me is my ability to laugh and smile through whatever life throws at me. It’s funny because I feel like people underestimate my pain because I’m a cheerful girl usually with a smile and joke nearby but they actually have it backwards! It’s because I am so sick that I can smile and laugh every day.

Some days I have to laugh so I don’t cry… some days I laugh in the midst of level 10 pain… some days I make jokes to convince my family that I really am doing okay… some days I just don’t know what else to do.

No matter the reason, the ability to smile through the pain has benefited me in my everyday life more than I can even say. Keeping my heavy life lighthearted and fun isn't always easy but it reminds me that I am so blessed. I have a loving family who understands my craziness and self proclaimed hilarity but many people just don’t understand.

What would they have me do? Constantly moan and cry out protests from the pain? I’ve tried that… it doesn't work!  

So I laugh and I joke. I joke about my interstims being trackers, fax machines, iPods, and garage openers. I joke about wetting my pants: “if peeing your pants is cool, consider me Miles Davis”. I joke about being on Medicare at 26.

I guess my favorite part about this unique gift is the peace it gives my loved ones. It is a lot of pressure to know what to say and how to act around someone who is chronically ill but when I smile and laugh, I give them permission to do the same which breaks down walls around them.

IC is a part of me and in some ways I’m thankful for it. The gifts it has given me almost… ALMOST… outweigh the pain and agony of the disease.

Then today was Day 5 and the assignment was to make a list of things that your thankful for and then hang it in the bathroom (where a lot of our pain happens) to remind us that we are blessed. So I did this...

Yes that's written on toilet paper... I thought it would be fitting! :o)

I'm enjoying all these challenges that make us think outside of ourselves and our IC while spreading the word about IC! 

One more thing I want to share... my husband works for a big company in downtown Seattle and they put a bit article in their monthly newsletter about IC Awareness Month, complete with an awesome description of IC and the official slogan with  picture! So cool!