Monday, December 2, 2013

Crohn's and Colitis Awareness Week, December 1-7

Hello! I'm back, after an unexpected 6 month hiatus.

Where have I been? Busy with summer, road trips, family affairs, and taking some time to heal. But I'll get back to that.

In 2011, the U.S. Senate designated December 1-7 as Crohn's and Colitis Awareness week, and I would like to take this opportunity to 1) Help raise awareness and 2) return to my blog.

I'll share here what I shared last night with my friends on Facebook:

Today is the first day of Crohn's and Colitis Awareness week, which was first established by the Senate in 2011 to encourage people in the U.S. to join in the effort to cure these diseases.

I was diagnosed with Crohn's in 2005. I've had one surgery, 4 hospitalizations, and several ER visits. I'm one of the lucky ones. I didn't "catch" it, nor did I do anything to cause it. "Eating healthy" won't fix me, nor is Crohn's limited to the digestive tract. Even when things are going well, I can suffer from pain, fatigue, and malnourishment, among other symptoms. Crohn's can present life-threatening, and even fatal, complications.

This photo was taken in 2011, when I was hospitalized and Chris brought the boys to visit. It was a bittersweet moment, but given the complications I suffered, I was glad to be alive.
If you have questions, I am happy to answer them, and am always thankful for people who inquire or provide support. Thanks for listening - Carpe Diem!


I hope this finds you well!

Friday, June 7, 2013

What is IBD (and what's the difference between Crohn's and Colitis?)

It's difficult to explain what IBD is, but this video does an excellent job of explaining the diseases in regular language, and with illustrations. If you have a few minutes, please take the time to watch:

Last Day of Kindergarten

Yesterday was W's last day of Kindergarten. Doesn't he look enthused about it?

W on a cool, rainy morning. Where is spring this year?
Actually, he was. He was also sad, because he had a great year, and loved his teachers and will miss them. What a lucky kid! We've really had such a great experience with his school.

I know that this is one of my child's milestones, but sometimes I am amazed at how quickly time goes, and how much life has changed in the past 6-7 years. We've managed to get our first baby through Kindergarten. How did that happen so quickly? Weren't we just painting the nursery? Wasn't it just yesterday that he cut his first teeth?

One of my favorite things about having children is the opportunity to see things anew through their eyes. This includes Kindergarten, and I am enjoying it so much. Life for our son is still so amazing; it's simple and new and fun. As adults we tend to muddle things up and over complicate things. Do we do that to ourselves, or is that just the way it is?

I know that next year will bring more homework, and I'm not looking forward to it, because the little we had to do this year was already a challenge to fit into our schedule. But we'll worry about that in the fall. For now, I'm just going to take in our son enjoying his summer, and learn as many new things along side him as I can.

Saturday, June 1, 2013

Inspirational

If you haven't heard of Zach Sobiech, his battle with terminal cancer, and his song, "Clouds," which has risen on several music charts, please take the time to learn about him. Zach died on May 20th due to a rare form of bone cancer. Here he is performing "Clouds," one of the songs he wrote and recorded in his final months of life. Listen to it, and then download it.
 

Because Zach's story has been covered by local media, I've been following it for awhile. To say that Zach is an inspiration somehow feels like an understatement. This kid was utterly amazing, and so is his family.

Today, I finally took the time to sit down to watch the entire "My Last Days" documentary filmed by SoulPancake. It's just over 22 minutes long, and I encourage you to watch it, too. Make sure you have some tissues handy, because it will move you to tears. But it will also make your heart swell.

Friday, May 31, 2013

Lucky Me

Today is the last day of May, which was Inflammatory Bowel Disease (IBD) Awareness Month. May was also the host of awareness campaigns for several other illnesses, including Cystic fibrosis, Celiac Disease, Arthritis, and ALS, among others. For each of these diseases, there is nothing that sufferers can do to prevent their illness, nor is there a cure.

 
All of these awareness campaigns are worthy of our attention, as well as those for so many other illnesses - those that can be treated, and those that cannot - that exist today. There are a lot of them, and they all suck. Cancer sucks. Arthritis sucks. ALS sucks. IBD sucks. No one who suffers any of these fates is a winner. By raising awareness for our plights, we can raise funding for research to improve treatments, identify preventative measures, or find cures. Breakthroughs in some areas may help make headway in others, and frankly, I support all of them.

And if you’re healthy, why should you care? What if it were you? What if your spouse, parent, or child became ill? What if through research we were to discover that there is something we could do differently to prevent some disease, such as autoimmune disorders, which are occurring more frequently, especially in children? Prevention is a savings for all of us, medically and economically.

As far as diseases go, I’m well aware of IBD, because I’m a lucky Crohnie. Yes, I said lucky. You see, I’m alive, and at one point, my life was threatened by this ugly disease. Did you know that Crohn’s complications can do that, sometimes without notice? I also have a job. Some IBD sufferers are so disabled by the disease that they can’t work. I’m also fortunate because my Crohn’s wasn’t diagnosed until I was an adult, giving me the freedom to grow up healthy and without disease. Currently, thirty percent of IBD diagnoses occur in children, some as young as toddlers. No child should have to be sick with any serious disease, ever.  

I consider myself lucky because I have responded fairly well to medications, making my symptoms more manageable, which isn’t the case for some IBD sufferers. I have health insurance, and can afford to pay for my care, which is costly. I have a supportive husband, who I love immensely and with whom I have a strong marriage (incidentally, it takes a LOT of work). I was able to get pregnant and have two beautiful, healthy children. I have a supportive family; parents who are willing to drop everything and drive 4 hours in an emergency; friends who are willing to pick up our kids; neighbors who bring us meals and ask how I’m doing. See? Lucky me.

I also know that it could be so much worse. My symptoms could be worse, my medications could stop working, or I could have another illness that would place much more burden on my life, or take it away.

I suppose it’s the devil you know versus the devil you don’t?

Any of us who are afflicted with a serious illness will have a different journey than we once thought we had set out upon. This is hard to accept, and at times can bring us to our knees. But we’ll get up, dust ourselves off, and forge ahead, because that’s all we can do.

We will also fight for better treatments, awareness, and cures. I have found my voice. I will speak up for myself and others with Crohn’s disease, because it is misunderstood, a fact that is incredibly frustrating. I will speak up for others who fight their own battles, because it’s the right thing to do – and we’re all in this together.

Happy <insert the name of your disease here> Awareness Month! Be well, my friends.