Al's Crohn's Related Roundup

Take Steps 2012

I think it's time for a recap of whats going on with me and my crap -- anecdotally, events wise and medically. So here you go.

1. Our CCFA Take Steps walk this past Sunday was a success. Our team, the Poo Crew, has raised nearly $12K and counting (donations are accepted through September) and I personally have raised just short of $1500. Over the past three years our team has raised over $30K and when I think of that my heart swells with pride. We are making a difference, a group of used-to-be strangers, who've come together to fight against diseases who threaten to overtake us every day. Take that Crohn's and colitis.
2. As of yesterday, I am now inflicting harm via injection of Humira once a week. I saw both my GI and my rheumy for regular followups and both agree that since I'm seeing a slight improvement on days 2-7 and then back downhill day 8-14, upping my dose to weekly is the next step to trying to get this to really make some progress. I'm praying this helps, because as much as I hate the injection, I want it to work so bad and I will do whatever it takes. Especially since the last week has been a little rougher, I can feel the deep within starts of something ominous and I just do NOT have time for that this summer. So weekly injections it is!
3. I was talking to our insurance provider (home owner, car, life) reviewing policies and he asked why hubs has a life insurance policy and I do not -- we had a different agent when hubby got his policy. I explained just simply that I have a number of autoimmune diseases, but didn't say which ones, which prevent me from even getting a small policy. He went on to say that except for diabetes and heart disease, he didn't think it was a problem to try for a policy, oh accept for Crohn's disease too. This is where I laughed and said, "ding ding that's what I have." He just said, "Oh" and we moved on.
4. I've been attempting to regularly attend "therapeutic yoga" at our local studio. The description of the class is for those with limitations, that's me:) So anyway, while there the other day we were laying on our backs and were hugging our knees in. The teacher says, now feel your ascending colon being massaged (ok I know sounds crazy, but go with it) and in my head again I'm laughing because if I could feel my ascending colon that would be a miracle since it's in a medical wasteland somewhere;) 

I guess the moral of this post is, IBD pops up in my world so randomly but regularly, a reminder of just how forever this disease is. But thankfully I can laugh about it, spread awareness about it and accept my reality knowing that I can choose joy in my life's situation and I am happy. 

A Visual Representation

I honestly can't stop laughing at this picture, probably because it's the most simple explanation of me vs. a "normal" person. LOVE it.

Hope you get a good giggle out of it.

Tonight, we will be walking to for a cure so hopefully someday, pictures like this will just cause confusion not laughs of understanding. If you want to help in that fight, click here.

A Need For A Cure

(click the pic to visit my Poo Crew page)

Last night as I sat mentally gearing myself up for my Humira injection, as it tends to do at random moments, it hit me again just how important finding a cure for Inflammatory Bowel Disease really is. It's become second nature to me to live in this dysfunctional body, only really getting me down mentally here and there (especially when I have in inflict pain on myself!)

But something that I never can accept is the new people being diagnosed and living through this hell every single day. Now that makes me mad. And because of that, I will not stop volunteering, raising awareness and vital funds for the Crohn's and Colitis Foundation of America.

CCFA is dedicated to finding a cure for IBD, but until that day, they are also completely focused on patient programs of support, education and empowerment. Every day those of us involved in CCFA are focused on reaching the 1.4 million Americans who suffer, in one way or another.

This Sunday, I will be walking again in the Take Steps for Crohn's and Colitis with my team The Poo Crew. It is a wonderful and inspiring event that I'm proud to be a part of. Our team has a goal of raising $10,000 this year and we are just over 80% of the way there.

If you would like to support us again in this journey, please click here. So many of you who read this blog faithfully, have continued to support the hubs and I in so many ways over the past five years and it continues to amaze us. Thank you just isn't enough.

You all help us continue to Take Steps to flushing IBD down the toilet by reading this blog, spreading awareness and helping to fund research for a cure.

Marching

Today was a hard day, a really hard day. I'm still trying to process that it has really been five whole years since my dad passed away.

I've been trying to figure out why this year seems especially hard and sad, more raw like that first year, and I think it's for a number of reasons. One, because five years is a significant amount of time, a milestone, half a decade, and it really hits home how much has happened without him here. Two, I think for me because I'm so weird about numbers and dates, having the dates fall on the actual days of the week they did when he passed has made it near impossible not to let my mind go to the dark place of reliving those days, which I really try not to do because no good comes of it. And three, it just seems again that life is changing so much and not having him here to give us a pep talk or an "everything is going to be all right" hug, stings just a little bit more in these times. The weight of today is very heavy.

Not being with my mom and brother today is gut wrenching, but thankfully over the last week I was able to spend a lot of time with both of them and our sweet niece, Super G. And in those moments, with the hubs there too, all seems peaceful and right. And I'm thankful.

At any rate, I let myself be sad today and miss him like crazy and wish for things that can not be, because I know tomorrow will be another day to do just what he'd want us to. We'll keep marching forward, navigating this life without him, but holding tight to the feeling of having him by our sides.

Read posts from the last three June 11ths here, here and here.