Ft. Lauderdale Take Steps Walk 2017

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Last weekend, we participated in the annual Take Steps Walk for the Fort Lauderdale area.  This family-friendly event is always such a treat, as it is casual, welcoming, supportive and EASY.  By easy, I mean that it is not an event that drags on for hours or feels restricting.  Our family was on time and stayed until the end, however, you could show up for thirty minutes if you chose!

I would like to thank our personal donors for contributing to this year’s walk!  No amount is EVER too small!  So far, over $100,000 has been raised from Saturday’s walk. Research alone costs millions of dollars, and with your help and the leadership of the Crohn’s & Colitis Foundation, we are getting there.  Go to their site to see the latest advances in scientific research.

Below are a few photos from the event.  Thank you again, for your support!

 

Photos: Book of Hope 2017

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As promised, here are a few photos from this year’s Book of Hope Luncheon benefiting the Crohn’s & Colitis Foundation.  The event was a huge success and I would like to congratulate all who were honored as well as those who had a hand in making this event so incredible!

 

Special thanks to  all of the sponsors, volunteers, families, and friends for their support!

27th Annual Book of Hope Luncheon

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The Crohn’s and Colitis Foundation will be holding their annual Book of Hope Luncheon next week, March 13th, at the Boca Raton Resort.  If you have not already purchased your tickets, you may do so online  at  www.bookofhopeluncheon.weebly.com

If you are new to the organization, newly diagnosed, or support a loved one with either disease, I encourage you to attend this event!   This is not just a fundraiser.  This is not just a meet-and-greet.  The Book of Hope Luncheon is an opportunity to get a deeper glimpse into what these diseases do to a family, to form relationships with those who may be able to support you emotionally and educationally, AND celebrate survivorship all in one setting!

Raffle tickets for baskets,   high ticket items (including a BIRKIN BAG) are available online as well as on-site.

I look forward to seeing you next Monday!  Photos to follow!

Baby Steps

I cannot believe how time seems to just slip through my fingers now.  The last year has been a whirlwind!  Everyday,  life for myself and my family is hectic and there are always stressors.  But the hospitalization of my daughter really turned the household upside down.   One crisis can affect  every thing and every person around you.

Normalcy, or I should say, our new normal is slowly coming back.  I need you to know that no matter what disaster befalls you, in time, you will recover.  I won’t lie to you and I certainly don’t lie to myself….things are not the same.   Your guard is up.  Perception is different.  What you value has shifted, and tolerance for nonsense, if you had any before, is all but lost.

I am so thankful that during all of this, I have had no flares (knock on wood).   I remember family and friends telling me to “try not to get sick”, which I find humorous.   My IBD family knows what I mean.   Crohn’s patients don’t try to get sick.  Stress is stress, and when big stuff happens you just buckle up and hold on tight.  It is a wonder, but I have been gut-well.  However!   The weight gain has been infuriating and forces me to be creative in my closet.   While teaching fitness classes and running, I gained nearly 20 pounds! Why am I the only one of my friends who GAINS weight when stressed?!!

It’s  alright though.  Much of it is unnoticed, AND,  I have bigger things to deal with!  I will tackle the weight issue one day at a time.  As life lightens up for us, I will be able to focus on myself… a tiny bit.   It is certainly easier to work on physical fitness than to recover from a crohn’s flare, so   I feel  blessed every day.

 

 

 

 

 

 

 

Staying Positive in a Negative Situation

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How do you respond when life seems unbearable?  When all that surrounds you feels painful and coping is all you can manage to do?  Exactly what you do isn’t particularly important (let’s just hope it’s safe and legal!!).  However, each one of us is built to handle things differently.  Our coping mechanisms are different and likewise, our immediate reactions to crisis.

Yes, there is a reason for this post.  I woke this morning, thinking, “This has GOT to get better!”  It doesn’t really matter what the problem is, just know it’s there.  BUT, instead of anticipating more of a downward spiral, I enlisted hope.

Now, you may call hope, “prayer”, “faith”,  “optimism”.  In my book, it is all of these things.  Sometimes, it can be hard to muster for those that have fallen or been kicked down repeatedly by life.  I am here to tell you that even if you were not taught to have faith, were never shown optimism, nor practiced prayer, there are examples of it all around you!

Stop for just a moment and think beyond your current situation.  I DETEST the phrase, “Things could always be worse.”  It does not make anyone feel better.  Yet, it is true!

I thank God often for the health I have been given.  Yes!  I have Crohn’s Disease, and yet, am thankful for NO surgeries nor recent hospitalizations like my peers.  I weep for my child’s recovery, while I thank God she and her brothers are alive!  Our country is at odds and people fear the future, but we do have the power to change perception…one at a time.  Some have struggled with the loss of a job, only to be blessed with a better career around the corner.

Look around you and search for the positive things.  The call you were expecting, an apology long overdue, the test result you were waiting for.  It may be hard to see, but those few small miracles will be enough to fuel you through the next obstacle.  AND…if you can’t see it, fine.  Be a miracle to someone else and create an air of positivity.  It won’t fail you.

Ritz garden

 

What About the Kids?

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Having Crohn’s and Colitis as an adult brings with it a host of additional worries compared to  that of a child.  Sure, we all hope to get better, find a cure, and have minimal procedures.  But as an adult, you also wonder:

“Will I be able to have children?”

“Will this illness affect my dating life/relationships?”

“If this is hereditary, will my children have the disease?”

“What if I am unable to work?”

There is SO much!

I was diagnosed at 25, and 19 years later I can certainly tell you this:  DO NOT WORRY ABOUT THE WHAT-IF’s!  So much of this is beyond our control!  Focus on the things you can control.  Meal plans tailored to YOU, exercise if possible, reducing  stress (I know…), and getting hands on help are key.

I think that my biggest fear, regarding my children, was that they would one day be diagnosed with either Crohn’s or ulcerative colitis.  Only because the more people I met with IBD, I found that  one or more of their children also had active disease.  It never occurred to me that there might be something worse out there.  Unthinkable.

I mentioned in an earlier post that my middle child, my daughter, was diagnosed with UC back in January 2016.  Her diagnosis is secondary to testing we conducted to find the cause of her renal failure.  Ten years old.  A gymnast.  A dancer.  Full of life.  In end stage renal disease and looking for a transplant.  Unthinkable.  DSC01952

But she is a champion.  Her mother’s daughter.  A soldier and a child of God.  She will be alright.  In the midst of all the why me’s, rest assured that you have been groomed to deal with whatever life throws at you.   When the worst days are over,  her resiliency and determination are remarkable!  Much like many of us with Crohn’s & colitis, this horrible experience is shaping her to be something greater than ever imagined.

It has been difficult these last few months.  Trying to be strong for her and my boys while keeping myself sane.  I am thankful for the intense workouts I squeeze in, incredible friends, my pharmacy knowledge, and the countless people praying for my family!  Every day is up in the air and draining, yet we remain optimistic.   As patients of an unforgiving disease, I know you get this.  We focus on what needs to be done and KNOW that there will be a positive outcome!

Fundraising with Team Challenge 2016

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I had  taken some time off to not just rest but also handle life at home.  Last year, I kept saying “I need a break” from training and fundraising.  It can be quite a challenge constantly asking for money even when the cause is undoubtedly a great one.   Well, at the end of 2015, I  commited  to running the 2016 Rock n’ Roll New Orleans Half Marathon to benefit the Crohn’s & Colitis Foundation of America.  It is my pleasure and a blessing to be ABLE to run in the midst of my diagnosis!  As I repeatedly share with you guys, every day is a gift, and on my good days I will make the most of this life!  (See link below).

http://online.ccfa.org/site/TR/TeamChallenge/Chapter-SouthFlorida?px=1426528&pg=personal&fr_id=5035

The last few months have been horrible!   My daughter has fallen terribly ill, and her least troubling issue is ulcerative colitis.  That’s right.  I said her least troubling.  Now, I don’t just run for me or my countless friends affected.  She is bold, dramatic, compassionate and born to make an impact on this world!  Now more than ever, I have to show her that labels and diagnoses do not decide your future.  So, maybe we have a few detours in this life, but I’ve got your back and you can still be remarkable.

Please take a look at my fundraising page and feel free, as always, to share with others you think may be helpful!  Wish me luck!!

IBD Awareness Week

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It’s Day 4 of IBD Awareness Week, and I feel somewhat guilty.   As if all that I do,  in terms of raising awareness and fundraising isn’t enough if I forget to post something smart each day!   Maybe I’m too old or have too many kids to keep up with the social media!  But I’m trying!!

In any case, I don’t know many details but there is a medical research study for an investigational medication  for patients living with moderate to severely active Crohn’s Disease, and that have NOT responded well (or at all) to anti-TNF  (biologic) therapy.

If you are interested, or think you or someone else fits the description check out their link at CelestStudy.com

I attempted to get more information for you in advance 😉  but interest requires registration for those who qualify.  I do not qualify.

ALL WEEK….the goal is to share information, uplift someone, and  educate yourself about IBD.  This disease is tough to handle alone and someone could really use your help.

CCFA Turkey Trot

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Race with friends and family!

Team Challenge is getting ready for Thanksgiving with our second annual “Turkey Trot” to benefit the Crohn’s & Colitis Foundation of America! On Thanksgiving Day, run or walk with us anywhere in the country. We promise it will be a great way to start — or finish — your Turkey Day!

The Team Challenge Turkey Trot is a “virtual” race, so you can run or walk the distance you choose. Register for only $35, and receive an awesome die-cast medal (see medal at right) and your own bib to personalize! Your Turkey Trot can take place anytime, anywhere on Thursday, November 26th (Thanksgiving Day). Many of you may have local Turkey Trots going on in your area — you can do your Team Challenge Trot and your local Trot at the same time! If you’re gathering with family, everyone can race before or after dinner. You can even coordinate a short distance run with some of your friends and Team Challenge teammates. And if you’ve had too much turkey to Trot, you don’t even have to run or walk to receive your medal and bib (but we certainly hope you do).

Let the world know you’re doing the Team Challenge Turkey Trot. Tweet or post to Facebook a photo of your personalized bib using the hash tag #TCTurkeyTrot. Use the custom profile photo you receive upon registration to help us spread the word!

Join us and trot for Crohn’s & colitis CURES!

 

**This post is a shared message from Team Challenge.

 

 

 

 

 

 

Summer Catchup

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Summer steamrolled by and now I’m standing in the midst of Thanksgiving! It is truly not just a saying, that “Time flies when you’re having fun!” Especially after 30!

I did go on my annual birthday trip this summer. Meds have been working, so all has been stable enough for me to actually DO things and make plans. I do NOT appreciate the extra 10 pounds that came on with my immune suppressant! But I suppose it’s a small price to pay for LIVING.

This year, we hit the Baltics via cruise. I am not a big cruiser. The pros would be not having to change hotels for each city and dragging luggage onto ferries and trains; lower cost; food and drink readily available; transportation to the next location is automatic. Ironically, my cons are the same. I like the hecticness of running for the train, the excitement of changing hotels… hoping they have wash rags, and I love almost getting lost! But it was my travel partner’s idea to cruise, and she was right, cruising is easier.

Here are a few shots of our stops in Russia, Finland and Stockholm.

Absolutely amazing places! What we could be as a society by learning about other cultures! St. Petersburg was probably my highlight, as who gets to say they visited Russia. But as far as the grandeur and pretty photo ops, it is all limited to the center of the city and palace grounds. Most of the city is a mess… as in shambles. Finland, as well as Stockholm, was inviting and while staying true to tradition you could see their modern progression. I would love to go back to either! We also visited the Berlin Wall and a few small towns along the Baltic. So much history! Aside from the obvious history in Berlin, it was fascinating to sit and talk with locals who grew up during the era. To hear their stories, relive the time through their words, was incredible. I am so grateful for the experience!

As always, I hope that you are well or on your way to healing. Seize every moment and live your best life!