The Post That I Wrote and Deleted a Hundred Times

This blog is not only about my design work, but my life as a mom, wife … and human being.

While sharing my work, I have also shared what inspires me, how I organize my home, what is on my mind, and why I do what I do, among … 60 or so other things.

I am the happiest that I have been in my life right now. I can genuinely look at where I am at and where I am going and say that I am proud. (That’s huge for me!) I guess that’s why I find it easy to talk about it all.

It took some work to get here, but I have learned to focus on the positive because that is what keeps us all going.

What I haven’t shared about my life is my health And that is because it is not exactly a positive.

If you start breaking it down, it kinda sucks, actually.

I have Ulcerative Colitis and have for the last fifteen years.

I never wanted to blog about UC because … well, I thought that paying it any mind would give it attention that it doesn’t deserve. (If that makes any sense!?)

My UC issues always came to others on a need to know basis. Like when Frank and I were dating for a few months and I came to realize on the plane ride home from vacation that I needed medical attention ASAP. “Hey, remember when I told you ‘my stomach hurt’ sometimes … when we land, you’re gunna have to take me to Hackensack Hospital, OK?”

The fact is, I do have a small voice out here in the virtual world. When I think back to 15 years ago when I was first diagnosed, I just wanted to hear from someone else with UC. I wanted to know what I was in for.

You can Google all of the wonderful symptoms of Ulcerative Colitis if you care to. What I’d like others to understand about UC that is often overlooked is that it is an autoimmune disease, much like Lupus and MS. In short, aside from the not-so-pretty symptoms that no one likes to talk about, it kicks your ass! Sadly, I have learned to deal with all of those painful and unpleasant symptoms. The regular ass kicking, however, is more difficult to get over.

My disease has changed over the years. It has gotten progressively worse. (Everyone is different.) I blew through 13-15 daily meds until I exhausted all but one … the dreaded infusion med. A cocktail of this, plus some other daily meds has kept me out of the operating room.

Every 9 weeks, my husband and I have our bonding day at the infusion center. It’s very romantic — he watches YouTube videos and I snore like a beast as I get juiced up for a couple hours. My nurse said we need to rethink our alone time. I say, it does just fine! He misses work to be there and I am thankful that he is there beside me.

As you could imagine, the medicine beats me up a bit, too. The meds that I am on are immunosuppressants. As the word states, they suppress my already compromised immune system. That comes with a few more ass-dragging effects all on it's own. When it’s almost time for a treatment, my body starts reverting back. It’s not perfect, but it gets me though.

If you know me, I hope that you didn’t notice any of this! I try real hard to live a healthy normal.

I can’t list for you the things that this disease has taken away from me without falling to the negative. That’s giving UC the kind of attention that I do not want it to have.

I will tell you that I am working from my home doing what I absolutely love. I invest in continuing my business and design education. I am an active volunteer for my lake community. I am a Girl Scout leader for both of my daughters. I am a functioning PTA member for my girls' school. I strength train and take kickboxing at my gym … And of course, I write this weekly blog.

I do these things because it keeps my mind busy. I do these things because they make me happy. I do these things to give a huge middle finger to Ulcerative Colitis.

UC can pop in uninvited whenever it wants, but with positivity, I feel that I will always prevail.

www.ccfa.org