Long Days :: Busy Mind


Please excuse the rambling, it’s been a long day.

There’s some days where I get a little bit down about having Crohns Disease.  It drags on my head, sticks in the back of my mind.  I don’t even have to be feeling all that sick.  Sometimes all it takes is a little reminder, like visiting my GI doctor for a check up, or scheduling a Remicade appointment.  Of course there are the days where I feel sub-par, and the days where I flat out feel like road kill… and ironically, those days I don’t get down at all.  I spend those days focused on making it through, it’s not until I feel better that I get down about spending that time sick.

It’s difficult sometimes to think that this is a disease that I’ll have for the rest of my life, it’s even more difficult knowing that I could be in remission for years, and it could spring back up.  Just that alone makes me a tad depressed.  However, those days that I feel 100%, which thankfully are more and more now, I feel like I can continue to take on the world.  It takes the good days to remember that I will and have gotten through it.  Crohn’s Disease will not get me down.

What really kicks me in the ass is when I have a down right horrible Crohn’s day, or if I’m just particularly down, is coming home.  I’ll be driving home from work/school/the moon and be in near tears.  Yet, when I get home, open the door and shoo away the dogs, I feel better.  Now, once I get home I realize how lucky I am.  I am proud of what I’ve done for myself and for Noodle, and now that my house is more like my home it’s an example of it.  My home is an example of what I’ve been through and what I’ve overcome.  So I may not be over the moon happy, but knowing how far I’ve come despite having a chronic illness, it shakes more reality into my busy head.

So I may have Crohn’s Disease, but that’s part of who I am, and part of what’s made me strong.


Crohns Disease: what I’ve learned from it




Crohn’s and Colitis Awareness Week
December 1-7th

I’ve been sick since June of 2007.  I was diagnosed with Crohn’s Disease (after several misdiagnoses and the almost dead-part) in April of 2008.  It’s been 4, almost 5 years now living with Crohn’s.  It’s been years of grieving what Crohn’s has taken from me, what it’s put my family and myself through.

The drugs are almost the worst part.  6mp and Prednisone have been the worst for me, although the multiple allergic reactions to Humira come close.  6mp and Pred alone caused moonface, hair-loss, weight gain/loss, joint pain and inflammation, migraines, nose bleeds, paranoia and mood swings, and PAIN.  (I’m currently only on Remicade, I am now refusing Prednisone, PERIOD)

I looked at it like this:  So I have this life long disease, that makes me feel like someone is chewing their way out of my stomach, from the inside, with a pack of rabid dogs.  So while my weight yo-yos 40-60lbs I have to take these drugs that make me even MORE miserable in an attempt to go into remission? Greeeat.

The only other thing that really got to me, is when I would have really bad days, days where getting out of bed was a challenge, it really hurt me inside to know that I could be in the forest preserve with my daughter, or working on my house, or hell, anything.  The bad days were brutal.  They would get me in such a funk, I’d think about how if I didn’t have Crohn’s I could be such a better mother, girlfriend, employee.

I focused so long on the things I had “lost”, the things I was “missing out on”, the pain I was in, that I missed the things that living with Crohn’s Disease has given me.  Sure, I have to deal with being sick and the drugs and doctors, but you know what, it’s given me a different perspective.

It took me a few years, but you know what?  I finally realized that I’m a better person because of my battle with Crohns.  I’ve learned that I can still be a great mother even if we don’t play outside EVERY day, I’ve learned that my daughter is very understanding and bright, and her experience with me getting sick (and the hospital stays), has helped her understand another sick little girl and befriend her.

My being sick has forced me to rely on my family and friends, even though it’s against my nature, and in return I learned how much the people I care about, care about me, and how lucky I am to have the people I surround myself with.

I have learned that my self worth is not based on how many days I feel like utter crap, but how many days I don’t let it get me down.  How many good days I have, and how many days I go out and do what I do regardless because FUCK CROHNS.

Because of this disease, I learned that I can have a relationship with a very understanding man who will stand by me and support me through every step I have to deal with, a forced step or not.  Because of this disease, I’ve learned that it’s okay to lean on people and let them know I hurt.  It’s okay not to be super woman all the time.

Most importantly, with this disease, I’ve learned how strong I really am.  There have been some moments where I have been terrified, where I didn’t want to face it, where I wanted to trade in my body on the black market.  Lets face it, I’m going to have more of those days, it’s inevitable.  I’ve learned that I’m strong enough to get through it, make it.  There is a difference between Living Life and Just Living, and I refuse to miss out.  This disease has taught me that I can make it through and enjoy life regardless.

I’ve come a long way with this disease, as many of my “Crohnies” have.  I’m proud of us, I’m happy to see awareness of both Crohns and UC spreading.  Now maybe one day we can find a cure.  In the meantime, I’ll be right here.  :)