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Wednesday, November 2, 2011

It's been a while...

Yesterday it seemed I was destined to have “one of those days”. You know those days. I had a full schedule at work, not knowing how I would get everything finished before I had to pick up my daughter from basketball practice which was ending earlier than usual. My phone was not holding a charge, so even though I had it plugged in all night and on my drive to work, it would die after about 20 minutes of use.
Nothing serious, just the little things like that to annoy me throughout the morning (if I let them).  Then I drop my phone in the parking lot at work. I shattered the screen. Ok, not the best way to keep the positive attitude going, right? Then on my drive out to take photos of a home in Greenwood, I miss my turn onto the service road and end up driving to Stanton before I can turn around. Seriously! I did that! I actually ended up doing it twice, in a row! Yes, I was living the dream yesterday. I walk back into the office prepared to let everyone in on my misadventures when I notice a letter on my desk. I was expecting a check in the mail for a VIP ticket (for the Black and White night) and I thought this letter must be the check. I open the letter and sure enough there is a check, but not for the VIP ticket. It is a very large check from an anonymous donor. I was floored! My day did a 360 degree turn around from the time I saw the letter on my desk to the time I read the enclosed note. One moment made all of the difference.
Generosity is defined as a generous act. It can mean bigheartedness, openhandedness, openheartedness and unselfishness. The past year has introduced me to so many people that are all of the above and more. I am in awe of the good that can be done by people who are willing to make an effort, willing to take a risk, willing to make a difference. So turn off this computer. Get out there! Make an effort, take a risk; it will make a difference in someone’s day. You may even turn it around. 

Saturday, September 17, 2011

We can't give you cash, but we'll give you water...

Soooooo.....
In tomorrow's Midland Reporter-Telegram I issue a challenge to all college football fans. I'm challenging everyone to make a donation to CCFA in honor of your favorite team. You have to include gratuitous smack talk in the comments section if you make a donation online, so I'll know which team gets the credit for the donation. I'll also be making a donation myself for the LSU Tigers and adding my own smack talk, just to get everything started off on the right foot! Geaux Tigers! If you would like to read Sunday's column or any of the columns I've submitted you can find them here. The football column will not be available until tomorrow (9/18/2011).

On to fundraising. I received my first no yesterday. Not an all out no, more like a "we can't give you cash, but we will donate bottled water" kind of no. Which is helpful, I am going to have a booth at the Midland Memorial Hospital Healthy U Fair on October 22nd so I can definitely use the bottled water, but I was really hoping for the cash. So if anyone is actually reading this and you want to make a donation, please click on the Team Challenge logo and it will take you to my fundraising page. I'll also say thank you for the bottled water donation, I'm sure everyone at the fair will love it! People do get thirsty!

TTFN

Friday, September 9, 2011

You're going to the gym? Now?

This morning I woke up early. I say early because I actually got up about 2 minutes before the alarm, got out of bed and didn't hit the snooze button 100 times or tell Matt, "Wake me up when you leave." I woke up, put on my gym clothes and headed for the door. I hear Matt in a sleep muffled voice, "You're going to the gym?"
"Yep"
"Now?"
"Yep"
"ok, I love you"
"Love you too"

He sounds surprised. Well he should be! But after skipping my morning run on Wednesday (thinking I would get it after work, what a joke!), I have decided to get my butt out of bed and as the Nike commercial says, JUST DO IT!

It doesn't hurt that some co-workers and I are starting a biggest loser contest today and there is money on the line. Plus the fact that I am in training for another half marathon in just 3 short months. Now I've just got to get up before the alarm (aka 5 am or as I like to call it ~ the butt crack of dawn) every day until the race. Wish me luck!

Wednesday, September 7, 2011

Girls LOVE shoes...


Since August, 29th (the first official day of training) there have been several conference calls with our virtual trainers, Melissa Spooner and Dave McGovern. We’ve discussed how to fit regular training into an already hectic schedule and the importance of shoes and apparel. SHOES? Now we're talking!

I started out in March of this year (training for Kona) with my regular old shoes. I soon found that the coaches were right when they explained how important the right shoe is. I headed to a local running store (the only running store), Run This Way, to get fitted by an expert and get the right shoe for me. Austin was great! He had me walk and asked questions about the type of training I was doing and determined, well I’m not quite sure what he determined, but he explained it to all me and then brought out several shoes for me to try. I made my choice and loved the shoes immediately. I could tell a difference on my first run. My shoes are so great I just went back to get another pair. Austin helped me again, but no foot analysis was necessary this time. I stuck with the same shoe, different fabulous color of course. The Team Challenge walk coach, Dave, suggested alternating the old shoe with the new shoe to help build foot strength and increase the life span of my new shoe.
Funny thing about me and shoes, I love them. At the race in Kona I saw so many bright colors and fun styles of running shoes. I especially wanted a pair of neon orange and blue shoes (the Team Challenge colors). According to both Mel and Dave, I'm not supposed to buy my shoes based on color. DANG! Some people love gagdets, some people love purses, I love shoes.

I love my Mizunos, so I'll just stick with them ~ for now...

Sunday, August 14, 2011

Back in the saddle again...

A lot has happened since my last post in July! Sorry to keep you all waiting in suspense for my next post! All 2 of you!!!

Ok, you all (and by all I mean 2) know that I signed up for my second event with Team Challenge. The next race is in December in VEGAS BABY! As a side note ~ it's my second TC (Team Challenge) event and the second time I will be going to a brand new place! I know, shocker, I've never been to Las Vegas. I also applied to be a mentor for this event and I GOT IT! WooHoo. I told Matt that I would be pretty busy last weekend. He asked, "For the rest of the day?' My reply was, "NO, THE REST OF THE YEAR!"
I'm really looking forward to being a mentor. I've sent my first official email introducing myself to my "metees". And training and conference calling starts on August 29th. This time I want to run at least 6 miles. Then maybe by my third event I'll be running the entire 13.1 miles. By the end of the year (when I reach my fundraising goal) I will have raised almost $10,000 for the CCFA. That thought blows my mind.

Please consider making a donation to the CCFA. Someone you know probably suffers from one of these diseases and you don't even know about it. If you know of a company looking for a tax deduction for the end of the year, send them my way! 100% of your Team Challenge donation is Tax Deductible. What's not to like about that?

Even MORE exciting than that...

wait for it...

My youngest daughter, Baylee, is home for the school year. There isn't a large enough font in this program to express my happiness! So I've been doing the mom thing again: Registering her for school, tracking down the girl's coach to find out the scoop on the sports available at her Jr. High, school shopping, and staying up waaaaay later that I'm used to, just so I can spend as much time with her as possible! For those of you that don't know, I have 2 daughters. Their dad and I share custody of them and sometimes they live with me and visit him - and sometimes they live with him and visit me. Being away from them is one of the hardest things I'll ever do, but we are both their parents and they need us both equally. I wish more divorced parents would realize that.

Anyway, back to me, me, ME! I've also been kicking around the idea of catering again and actually done a few events. So much fun, but so time consuming - especially because I work full time too. I think I'll submit a request to officially extend the number of hours in a day...

~Robin

Saturday, July 9, 2011

Here I go again!

It's official! I'm signed up for the Team Challenge event in VEGAS in December! Woot! Woot!

So why don't you just go ahead and make a donation now so I can just concentrate on training?

http://www.active.com/donate/vegas11national/VegasRKingha

Saturday, July 2, 2011

A video of the weekend's festivities!!!!

Just click here to view.

Y'all enjoy!

There are no words...

It has taken me a while to log on and create this post. Every time I think about the weekend I start to get teary eyed. Seriously! There are no words to describe the weekend in Hawaii, but I will do my best to recap it for you anyway. So, here it goes.

I arrive in Hawaii and I am supposed to take a shuttle with the team from Oklahoma to the resort. I'm also supposed to be with Sarah, whom I've never met but we have spoken on the phone and via email and facebook. Sarah's schedule changed so she won't be arriving until Saturday. I'm looking for a shuttle and 4 people that I don't know. I find the shuttle driver talking to the guy that was sitting across the aisle from me on the plane. I walk over and confirm that this is my shuttle also and introduce myself to the guy from the plane. He's part of Team OK! What?! You were sitting right across the aisle from me. So I meet all four members of Team OK: Clayton, Chris, Diane, and Amanda. This is AWESOME! Clayton and I chat all the way to the resort. Check into our rooms and head to the meet and greet in the team manager's room. It's pretty late at this point so the "party" is wrapping up. But I get to meet all of these people that we have been phone conferencing with over the past 16 weeks. Besides, we have an early morning work-out with everyone. There will be time to visit then. 

I find out at the morning work-out that the course is not as flat as I had been lead to believe. I can understand if you live in the mountains how the "rolling hills" on the coast of Kona might be considered flat. Honey, I live in West Texas. You don't know FLAT until you've lived here. SO it was at that point I decided to walk the half. I wanted to be able to finish and I had not trained to go that far on rolling terrain. Honestly the farthest I had gone during training was 6.5 miles. So I was pushing it thinking I could finish 13.1 in the first place. Those of you who know me well know that I can be stubborn and I have more determination than brains sometimes - so not finishing the 13.1 miles was really not an option anyway.

After the morning work-out and the "all participant" photo op it was time for a little breakfast provided by the resort. I sat with Jodie, who's story you can find here, and Krystal, who's story you can find here. We were also joined by Team Oklahoma. We all discussed our plans for the day - Jodie and her children were touring a coffee farm, they invited Krystal to join them. I was planning to get on the resort trolley and take a loop to all of the trolley stops and then decide where I wanted to get off. My plans were pretty similar to the OK team's plan so we decided to go it together. What an awesome day!!!! Team OK adopted me that day as an honorary member!  We just hit it off. We went to farmer's markets and retails shops, had lunch and then this crazy good ice cream/coffee blended drink. They volunteered to take some photos for me (so I would have proof that I was actually in Hawaii) and I took photos for them. They laughed and caught me when I tried to grab a real estate magazine and put it in my bag with out anyone noticing. It was just a fun care-free day.

At 4pm we had a team meeting to discuss last minute race details and also recognize team members who have participated in multiple Team Challenge events. Then it was time for me to get some quiet time. I went to my room and uploaded photos to fb so all of my friends could see what I've been up to. I called Matt and took a walk around the resort. I also booked a massage for after the race. Later that evening was the Inspirational Pasta Party for carb loading. The funny part about that is for those of us with Crohn's or colitis, we can't really "carb load", but it's the thought that counts right? There was Hawaiian music playing in the background and we were entertained by hula dancers. The M. C. recognized the top 10 fundraisers - people that raised over $7500. Then the coaches gave tips and a little pep talk. Next, Mr. Sosnik from the Long Island chapter gave our first inspirational speech. Wow! What this man has gone through. Everyone was a little teary-eyed by the end of his speech. Then Frank Shorter (Olympic Gold Medalist) gave an inspirational speech about running in general and tips about finishing the course (he has run Kona almost every year since it's inception). The evening was beautiful. I sat with the peeps from OK and also Krystal, Sarah (my mentor), and April, who's story you can find here, and April's husband.I headed to bed after the party. The shuttle to the race start would be there bright and early to pick us all up and I wanted to get all of my race gear together before heading to bed.

My alarm went off at 4:00am. I got up, got dressed and headed down for some coffee and a banana. I knew I had to eat something but I didn't want to make myself sick. Everyone got together for a Team Challenge photo op and we headed to the race start. I had Jodie write on my arms "In memory of" and "In honor of" to recognize and honor requests from several people that made donations. Jodie liked the idea so much she had me write her brother's name on one arm and her son's name on the other. Jodie was planning to run the marathon but she injured her back a week before coming to Hawaii and her doctor told her NO RUNNING! Especially a marathon! So I asked Jodie if I could walk with her. She said sure but she planned to walk at a pretty fast pace. I said if I can't keep up just go ahead - that's fine. Another Team Challenger heard us and said she planned to walk too. We could walk together - she planned to walk a 13 minute mile pace. That sounded good to me! I didn't know if I could keep that pace for the entire race but I really wanted to try.  So we all started out together. Jodie, myself and our new found friend Barbara from Seattle. We talked, we laughed, we cheered on every single person that passed by or that we passed. We cheered for the marathoners, the other half marathoners and especially for the 87 other Team Challengers that were out there participating. I felt good! I mean really good! I got to the half way point and I still felt good. Mile eight - still good! But by mile 10 I was losing a little steam. These ladies kept me going and they didn't just take off - but they also didn't slow down to accommodate me. They gave me a kick in the can! At first it was, "how are you doing?" Then it was, "You better get up here, we are finishing this race together!"  It was perfect for my first half marathon! I was given exactly what I needed to be able to finish the race. Being able to walk with these ladies was a blessing. We held hands and crossed the finish line together. Unforgettable!

I picked up my finisher's shirt, finisher's metal, grabbed some water and a snack and then sat down to stretch a little. I was so glad I had decided to schedule a massage after the race. I know, I know! You are not supposed to get a massage after a race. I realized that if I hadn't scheduled the massage, I probably wouldn't be able to walk to the After party that evening. LOL! My hips were on FIRE!!! And not like Shakira's are on fire! I also decided to book a helicopter tour of the island for the next morning. So I had a pretty relaxing afternoon. I sat at the resort bar for lunch and met Page and Dana from Philly. What a riot those two are! Page and I were discussing getting tattoos before leaving the island. I ran out of time, but I am still considering the idea. That evening was the after party. They fed us again and there was a DJ and dancing. I was moving pretty slowly but I still managed to get out on the dance floor (More determination than brains!). I met Brian from Long Island who also brings groups of volunteers to my home (Louisiana) to help rebuild after the hurricanes 6 years ago. I had to give him a hug and sincerely thank him for his efforts. I mean people from LA weren't even helping to rebuild!!!

Several Team Challengers were planning to extend the evening by heading out for a night on the town. I was planning to head to my room to go to sleep. I had an early morning tour booked so there's no need to party it up, right? WRONG! Team Oklahoma had a different plan for my evening. Diane was heading to the room, she was beat. So Amanda said I just had to go with them , I was an honorary member of Team Oklahoma. So of course I went. Didn't take much to get me to say yes! At the bar we met up with other Team Challengers. I met Sally and Jen from San Diego (awesome ladies!) I also met Chris from Seattle (Barbara's team mate). We drank and had fun and finally went back to the resort giving me about 3-4 hours sleep before my helicopter tour.

I'm just going to say it: I got air sick! DANG! I should have gone to bed earlier, I should have had some breakfast and coffee, I should have taken some Dramamine! I don't know what exactly it was, all I know is that the combination of all of those things plus the helicopter pilot doing a maneuver to turn the copter around so we all could see a rainbow in a complete circle did me in! He said that was natural, many people get sick because of moves like that one. Thanks! And I have it all, on DVD! WooHoo! It's a good thing I'm not easily embarrassed!

I went back to the room asked for a late check-out so I could get some sleep and try to relive my queasiness. I got my stuff together, checked out, left my bags with the bellman and went shopping! My last afternoon in Hawaii I spent alone. It was awesome! I bought gifts for everyone and walked around and hopped on the trolley. I  called my parents and Matt. I ate some pizza (I needed something familiar to ease my tummy) and just soaked in everything! I sat on the lanai for dinner before catching my shuttle back to the airport. It started to rain - it was the perfect ending to a perfect weekend.

I know I haven't done a good job here conveying the emotional impact this weekend has had on me. I've given the details without the feelings produced by the events.  I can only say that I am forever changed by this experience. FOREVER! It was - i don't know- to be around so many people that are going through and have been through exactly what I've been through. To not have to explain what colitis is or how it changes lives. The race in Hawaii was the perfect beginning for my journey with Team Challenge and the CCFA. Team Oklahoma was my perfect introduction to the experiences I would share over the weekend. Barbara and Jodie were the perfect race mates. There are no words...

THANK YOU TEAM CHALLENGE! I'll be seeing you in Vegas in December!

So anyone that wanted to make a donation for Kona but didn't, you will have a chance to donate for Vegas! Lucky you!

Thursday, June 23, 2011

One more sleep!

I leave for Kona tomorrow and I haven't been feeling well this week. I'm so excited. I'm not going to let a little upset stomach get in my way! I can't believe it's already here. 16 weeks have flown by. Wow! Wish me luck!

Monday, June 20, 2011

Next Adventure?

So I haven't even finished Team Challenge Kona and already I'm thinking about what's next. What's on the horizon? My husband asked me if we could put major projects on hold for a while. I think I've worn him out with all of my activities.

There is another Team Challenge event in December in Las Vegas...

Or I've seriously been considering starting a small business.

I'll have to ponder it and wait until after the half in Kona before I make any decisions. Four more days until I get on the plane...

Sunday, June 19, 2011

Attitude of GRATITUDE!!!!

This is it! Time to celebrate! I reached my fundraising commitment on June 16th. I raised over $5600, I know I didn’t reach my personal goal of $7500, but when I started this I had no idea what I was getting myself into! This has been the most amazing journey. It has completely changed my life.

The race is scheduled to start 6:00am a week from today, Hawaiian time. My teammates and I will have to be ready to go by 4:40am to catch the shuttle to the race start. I’m excited and nervous all at the same time. I’m excited to finally meet my teammates that I’ve been emailing and visiting with via conference call over the past 16 weeks. I can’t wait to share all of the details from this weekend with all of you.
But today I need to take care of something, giving thanks. I always tell my daughters that the most important trait they can possess is an attitude of gratitude.  As you all know I am the real estate account executive at the Midland Reporter-Telegram and I have the most amazing clients any one could ask for. Thanks goes out to Sandy Scott, Holly Cohen and Jon Short of Real Estate One; Pat Chancellor, Alvin Collins, Teri Vestal, DeLaura Gammage, Amanda Siruta, Gina Lann, Romona Lopez, Thanda White and Jane Wolf of Legacy Real Estate; Lance Brock of Lance Brock Realty; Lisa Kelly of Kelly Real Estate; Patti Woolard of Keller-Williams; DeeDee Brown of Re/MAX 1st Choice; Steg Stegall of Ajani Hair Salon; and Astrid Farley of The Ivy Cottage. You honor me with your support and I enjoy working with all of you.
I’d like send a very special thank you to Fran Billingsly. Fran you are my Fairy Godmother. Because of your assistance and guidance I was able to add so much more to my weekly column. I took all of your advice to heart and it helped immensely. The fact that you made a donation didn’t hurt either! You reached out to your friends on my behalf; there are no words to adequately express my gratitude.
A huge thank you goes out to you the readers, my family and my friends. I received emails and phone calls. You told me your stories and shared your pain with me. Some of you even felt so strongly that you made donations. If not for your support and encouragement I would not have reached my goal in time.
Finally, I have to thank my amazing co-workers at the MRT. Megan, thank you for turning my request for one article into a weekly column, I didn’t think I could do it, I am grateful for support and encouragement. Shalayna, my fundraising guru, thank you for all of your guidance and suggestions, the dance party was a success because of you.  Everyone here at the newspaper is more than a co-worker, you are all my family. You bought candy bars EVERYDAY, you bought tickets to the “determined to Dance” party even though you knew you probably wouldn’t attend. You asked me how training was going. You posted my fundraising link on your facebook pages and asked your friends to support my cause. To top it off, when you found out I only had $50 left to go, you got together and handed me $105 in cash to beat my goal! I don’t even know how to begin to thank all of you. Your support and generosity is overwhelming. I am honored to work with all of you. THANK YOU.
Check back next Sunday for all the details from race weekend! I promise not to leave anything out.


What was I thinking?????

The Trail run was incredible! It was hard! But the girls and I finished about 1/2 hour faster than I expected.

The race started with a pretty steep incline then "leveled off" then down hill to the 1/2 way point and turn around. Back up the side of the mountain sized hill, then the relatively flat section then back down.

I am still in awe that I finished! I was sore for the next three days! As I was running down the trail to the finish line, I had a horrible thought, "Slow down! You don't want to break a leg and miss Hawaii!" So I had to slow down.

In 5 days, I'll be on my way to Hawaii!

Sunday, June 12, 2011

Here goes nuttin'...

I originally started my blog and this column as a way to track my progress through the 16 weeks of training and fundraising for my Team Challenge event on June 26th. It has certainly evolved into so much more than a glorified diary of sorts. I’ve been able to share other’s stories as well as my own.  I hope that I’ve informed and educated some as well. I’ve only got 2 weeks left until I’ll be completing the half marathon. Time has certainly flown by. But I’m not finished. It is definitely not time to coast to the finish line. I’ve still got to raise almost $350 to reach my commitment of $5600. And even though tapering will begin soon I’ve still got 2 weeks of training.
This morning I’m completing a 10K trail run/hike in California. Even while on vacation, I’m training. If I plan to finish the half, I can’t take a vacation from training. So, you enjoy your morning coffee and think about me trying to hike 6 miles on a mountain trail when I’ve been training in flat West Texas and on a treadmill. If you think I’ve gone crazy, you just might be right!
During my travels over the last few days I’ve been thinking. Travel with Crohn’s and colitis almost takes strategic planning.  How many bathrooms are on the plane? Where are the airport bathrooms located? Will I have enough time to use the restroom? And ultimately, “Please turn off the fasten seatbelt sign so I can go!” I don’t know how many times I couldn’t wait until the little light was turned off. I’ve learned over the past eleven years that travel days are days to eat and drink as little as possible. I know we are supposed to drink lots of water when flying, but not this girl.
We flew into Sacramento on Wednesday and drove to the coast of California on Thursday after my daughter’s eighth grade graduation. The drive from outside of Sacramento to the coast takes about three hours. The prospect of driving long distances proves to be even more of a challenge than flying. At least there are bathrooms on planes. When driving through unfamiliar territory,  a bathroom can seem like an oasis. Don’t laugh, it’s true. Ok, you can laugh a little. I’m picturing palm trees, neon lights and arrows pointing to the female symbol for bathroom. Sure GPS can let you know where the closest bathroom is but if it’s an hour away, that is not very helpful.  When my family takes road trips my husband and children are awesome. They all keep an eye out for rest areas and truck stops. My husband will ask every time he sees a rest area sign, “Do you need to stop?”  I’m very grateful that he so understands, because we really like taking road trips. 
I’d like everyone reading this article to take some time to think about this today. Before I got sick, I’d be the first to tell anyone traveling with me to use the bathroom before we left the house. I remember my parents and grandparents saying that to my brothers and sisters when we were younger. My children didn’t have to grow up with me enforcing that very often. I was the one we usually had to stop for.  We all accept the fact that we will have to stop, probably more than once, and that is Ok. Take that into consideration the next time you are traveling with family and friends, someone will have to take a bathroom break, don’t stress, the trip will continue no matter how many times you have to stop.

I’ll let you know how the 10k goes. 

Until then…

Column from May 29th

Not long until race day. Am I ready? Will I finish? It doesn’t matter. Of course I will finish! I’ll probably end up doing a run/walk/stop to take photos combination. That’s what one of our team mentors, Leigh, did during her very first Team Challenge event. Leigh has completed seven Team Challenge events to date. She is an inspiration to me and to the rest of the team. Then there is Jodie. She is also a mentor with 3 events under her belt. She was diagnosed with Crohn’s about 12 years ago, and then her brother was diagnosed with Crohn’s, now her 12 year old son has recently been diagnosed with Crohn’s.  And my personal mentor, Sarah, from North Carolina. A few years ago her 8 year old daughter, Grace was diagnosed with Ulcerative Colitis. Grace has had 3 surgeries so far and she has not reached her 10th birthday yet. She will be 10 in August. Grace’s first hospital stay lasted 49 days.  49 DAYS!   All of their stories are posted on my blog. Please take a moment to stop and read their stories. Like I’ve said before, don’t forget the Kleenex.
Since I started this journey, I’ve had numerous people come up to me to tell me they know someone with either Crohn’s or colitis. Last Saturday, May 21st, I held a garage sale for the CCFA. During the garage sale a couple from Midland walked up and asked if this was the sale benefiting Crohn’s and colitis. Through the course of our conversation I found out that their niece has Crohn’s. We must have talked for 30 minutes. We exchanged business cards and I hope they keep in touch. I know I’ll be sending and email soon.  Shortly after the couple left a young girl walked up with a couple of friends. I approached her said hi and she asked about the Crohn’s and colitis foundation. She has ulcerative colitis and she just wanted to talk to someone that knows what she is dealing with. She told me that she has to get blood transfusions regularly because of all of the blood loss due to UC. Her doctors are talking surgery, but she wasn’t sure. I was able to tell her about my experiences with UC with my surgery, having an ostomy and life after surgery. I also told her about the foundation and the web address.  I hope that I was able to give her some hope. I was able to raise over $300 from the garage sale. But I can honestly say that even if I had sat there all day and hadn’t sold one thing, it would have all been worth it just to meet and be able to share with those three people.  Please help people like the couple’s niece and the young girl. Make a donation by visiting my fundraising page today. I have 15 days left to reach my fundraising goal. If you’ve considered making a donation but haven’t done so, I urge you to do it today. Go to the computer and visit my fundraising page: http://www.active.com/donate/kona11national/konaRKingha
If we all work together, we can make a difference in all of their lives and the lives of their families and friends. IBD doesn’t just have an effect on the patients it effects everyone around them.  Send me an email, visit my blog, make a difference, be a part of the answer.


Catching up with past articles...

I recently received a text from someone that thought an article I submitted to the newspaper about Krystal Carbone was about me. Wow! That story was about one of my Team Challenge teammates, Krystal. But the text got me thinking-there are a couple of similarities. I too had my large intestine removed. I was fortunate enough to have had the right surgery. I did not have the complications from surgery that Krystal did and I was able to be “reconnected” a year later. But every day for the past ten years, whenever I go somewhere, my first thought is, “will there be a bathroom?” I can’t be too far from a bathroom. If I’m going to a place that I’m not sure about, I’ll probably not eat anything so I won’t have to go to the bathroom.  When you go through something like I went through, like Krystal is going through, you never forget what it felt like at its worst.  After my first surgery, my tissue was sent to the lab for a pathology report. I had been diagnosed with Ulcerative Colitis, but my intestine was the consistency of wet toilet tissue when the doctors finally got in there to take it out. I was a lot worse than my doctor suspected. So a pathology report had to be done. The results were inconclusive. The doctors couldn’t tell if I had UC or if it was in fact Crohn’s Disease.  If I had Crohn’s, that was a problem, the surgery I had just undergone was not reversible. They removed 5 feet of my large intestine. All I had left was about 10-12 inches at the end. If I had Crohn’s it was bad because there is NO cure for Crohn’s. It can affect your entire digestive track: mouth, esophagus, stomach, small intestine, large intestine, everything. If I had ulcerative colitis, my original diagnosis, I was cured. With UC the ulcers only affect the colon: no colon - no ulcers in my colon - means no ulcerative colitis.
The test results were hard to take. My surgeon and I had discussed all of my options based on my UC diagnosis. I was going to have a pouch built, a J-pouch. This pouch is built from the small intestine to act as a make shift reservoir.  Because of the test results, that wasn’t possible any longer. If the doctor built the pouch and the Crohn’s came back, I’d be in a very bad situation. At that point I had only 2 options. The first one being keep my ileostomy. This is a bag on the outside of your body to collect waste. It’s the same as a colostomy, but the doctor used my ileum (small intestine) because I had no colon left. The second option was to risk reconnecting my small intestine to what was left of my large intestine. My doctor assured me that if it didn’t work, I would just go back to the ostomy, no problems. I’ve been “reconnected” for 10 years now. It’s true, I go to the bathroom more than one person should, but I’m here and I don’t have an ostomy. There may come a time when I will have to choose that route. Hopefully never.
So many people suffer with these diseases; so many people suffer in silence. We need to find a cure

Friday, June 10, 2011

I Love WATER!

This morning I woke up to a view of a marina with hundreds of sail boats! Then my lovely husband and I walked down to the beach and found a coffee shop right on the beach. Grocery shopping and sweatpants shopping (It's chilly in the mornings here) and now getting dinner on the stove for later. My girls and I are going exploring a little later. I want to run on the beach - maybe this evening. The 10K trail run/hike is on Sunday. My girls and I have to pick up our race packets tomorrow. I'm a little nervous, It is pretty steep here. I don't think the incline on the treadmill has prepared me for this!

Wednesday, June 8, 2011

I'm baaa-aaack...

I know, I know. I haven't posted anything in a while. I've been working hard and fundraising even harder. I've almost reached the amount I committed to raise. I still need a couple thousand to reach my personal goal but I need less that a grand to reach my commitment to raise $5600. I'm seriously excited about that!!!!

My training has been hit and miss. When I do this next time I will definitely be more committed to my training schedule. I let life get in the way more often than I should have.

This week I'll be training on the BEACH! Yes, i said it, the BEACH!!!!! It is soooo dry in West Texas and I'm looking forward to the chance to re hydrate!!!

I'm on vacation starting today, so I'll be making several posts over the next week and I'll also post the last few articles that I submitted to the newspaper.


Happy trails....

Monday, May 30, 2011

All the help I can get!

I've had my own "fairy godmother" for the past couple of weeks. Mrs. B. has sent me several emails making suggestions for my column and my blog. Suggestions about what information is important to the public. She asked me to send her my story. You can see it here.

I'm getting so close to my fundraising goal. I've raised just shy of $3000. If you've taken the time to read my blog, won't you consider making a donation.

One month to go!

One month! I'll be in Hawaii, running/walking my little heart out.

Monday, May 23, 2011

Today is wear purple day!

Wear purple today! Support the Crohn's and Colitis Foundation's efforts to find a cure for IBD!

Saturday, May 21, 2011

Garage Sale Day!!!

Today turned out to be a great day! I've been collecting donations from friends and co-workers all week to sell at my garage sale to raise money for the CCFA. Even though the day was gorgeous, the sale got off to a slow start. "Y" a representative from Thirty one gifts set up a table in my drive-way too. So at least I had someone to talk to. But I ended up with a few hundred dollars to send in this week.

The highlight of my day was a couple that came because they saw my flyer and their niece has Crohn's. They said they would make a donation even if they didn't find anything to buy! I also met a young girl that has UC (like me). She came just to find out more about the foundation and to talk to someone that has been through what she is going through now. I gave them both my card, I hope they keep in touch.

If I had not sold one thing today but those three people still stopped by, it would have been worth all of the effort and time. Just being able to share experiences and give a little hope.

Tuesday, May 17, 2011

April's Story

As many of you know, I have been through quite a bit with Crohn's Disease.  I was diagnosed in October of 2001 after being sick all summer and then having an emergency appendectomy.  Then something wasn't quite right so they went back in three days later and took out a foot of my small intestine and part of my large intestine.  They came in the next morning and told me I had Crohn's Disease, which I had never heard of at the time.  Well, after 2 emergency surgeries within 3 days, and alot of prayers, I remained in the hospital for about three weeks or so and then recover was another two months after that.  It was not fun.  I was living in Northern Virginia at the time and I missed my cousin's wedding, in which I was the maid of honor, which was devastating to me.  The sadness of not being with my family and the guilt of feeling like I was letting my cousin down were the toughest part of all.  I never complained that I went through all of that but I did let God know that I was upset about missing Anne's wedding.  I had to learn that heartbreaks will happen but God is still in control and has a plan to use everything for good if we allow it.  

Well, that was October of 2001.  About 15 months later, in Jan of 2003, I ended up with a massive ovarian cist that had to be removed via another emergency surgery.  I've never had to worry for too long about any surgery because almost every surgery in my life has been emergency.  They removed the cist, my left ovary and fallopian tube, and left the right ovary and tube damaged.  Crohn's made the entire surgery and recovery more difficult and we left the hospital on my mom's 50th birthday.  The recovery from that surgery was about a month.

I got married in October of 2003 and my Crohn's seemed fairly under control.  About three years into our marriage, we had no children so I went to the doctor to have some testing done to see what could be getting in the way.  Well, it really was no surprise when Dr. Garcia explained that my fallopian tube was blocked and recommended that I have the surgery to remove the adhesions from the tube to increase my chances of getting pregnant.  Well.......let's just say that didn't go so well.  I woke up from surgery with Dr. Garcia explaining that it was unsuccessful and that he had never seen anything so bad.  He said I had no chance of getting pregnant, nor should I carry a baby because it would actually be a danger to my life with the mess that's inside me.  I had adhesions everywhere and he couldn't get near where he needed.  One of the places he removed adhesions from was my intestinal wall.  Well, I went home because I seemed to be doing ok.  That night things took a dramatic turn but I begged Craig not to take me back to the hospital because I just thought my Crohn's was making my recovery more difficult.  That was Friday.  On Monday morning he put me in the car and took me back to the hospital because I was beyond sick and miserable.  As it turns out, my small intestine had burst open Friday night so needless to say, on Tuesday night I had lifesaving surgery.  What I would learn months later is that the surgeon was not confident that I would make it.  He still didn't expect me to make it through the following weekend.  During the surgery, they had to give me an ileostomy which lasted 10 weeks.  That go around was much worse than any other one and by this time in my life, most everyone I knew learned that I had Crohn's disease if they didn't know already.  

During the first few weeks, I struggled more during that time than ever before with the disease.  It was definitely a dark time for me.  Craig wouldn't allow visitors because I was in CCU and was still so sick that I couldn't handle visitors.  One thing I did learn during that 4 month struggle was that I was beyond blessed.  I wouldn't wish Crohn's on anyone but I learned that I worked with some amazing people, all who wanted to help in any way they could.  I went to church with an even more amazing group of people who did anything they could to help us.  They mowed our lawn, brought us meals, sent encouraging cards.  The love that was poured out on us was more amazing than anything I could've imagined.  

Since then I've done ok.  I go through ups and downs with Crohn's.  In the fall I learned that my Crohn's is active so I've worked very hard at remembering my medicine.  My GI doc warned me that I run the risk of more surgery if I didn't get better.  Needless to say, I started remembering to take it and I've been doing well since then.

One of the things that I love about this fundraising challenge is that it's a half marathon.  Most of you know that I love to run.  My dad got me started running in elementary school and I've been running ever since.  Someone said to me in the last six months that they did not enjoy running and couldn't understand how I run so much.  I explained to her that I run because I can.  I remember being in the hospital in the past and wondering if I would be able to run again and if so, how long until I could.  I thought I'd just about give anything to be able to run again.  Starting all over to get back in shape and feeling like your body has defeated you is never fun but running is simply something I can't live without.  I'm not letting this disease take running away from me.  Now I might often run along Blanding so that I have bathrooms close to me but I'm not going to stop running.  So that's all the more reason why this half marathon is so important to me.  I understand that not everyone is in a position to support me but even $5 helps.  I'm not just running for me.  I'm running for all my friends I've met through CCFA who suffer with Crohn's disease.  Some of them have it so severe that it blows my mind what a positive attitude they have.  My friend Dani deals with more than we'll ever understand on a day to day basis, especially after recently having her little boy.  She has such a sweet and positive attitude and disposition.  She never complains and just keeps pushing through.  If only we could all be like that.  I find myself wanting to just throw a temper tantrum from time to time over the frustrations of Crohn's.  I have another friend Jessica that I went to college with who has dealt with so much over the past 10 years.  She doesn't complain either and just keeps doing everything she can to take care of her husband and adorable little boy.  These ladies are my heros and neither of them could finish a half marathon and so I'm doing it for all of us. 

Sunday, May 15, 2011

Jodie's Story

My Story
By:  Jodie DeLay

I was a lucky kid.  I was born into a fabulous, loving family; grew up in a tiny, idyllic town in Montana and I was rarely, almost never, sick.  I was pretty good at everything that I tried and I tried a lot of things. I was constantly burning the candle at both ends and had HUGE dreams.  I never really knew failure of any kind.  That’s kind of a bold statement, but I say it because I know now what a gift it was.  I wasn’t GREAT at everything by any means, but I never really struggled.  Even so, because I had great parenting, I learned to work really hard.  As they say, failing to prepare is preparing to fail…so I was always prepared.
I decided pretty early on that I was going to be a Supreme Court judge handing out justice on behalf of good people everywhere.  I was focused and disciplined and powered my way through college with that goal in mind even though somewhere around my sophomore year I was positive I did NOT want to be a lawyer.  There wasn’t really anything else that came to mind so I just kind of closed my mind to it and kept going.  I graduated in May of 1993.  I was completely, utterly lost.  For the first time in my life I really had no idea what was next.
I had some money from a scholarship that I received after my grades were turned in and I literally just lived from happy hour to happy hour, both struggling with the concept of “free time” and really enjoying it.  I started drinking pretty heavy.  On my 22nd birthday I was blessed to have many friends visit me to help celebrate and started the day early with a road trip to find a bar with “Juke Box Hero” on the playlist.  I ended the day completely hammered and living out the song, “Jose Cuervo”.  I kissed some cowboys, danced on the bar AND got in a fight.  And I woke up with a really cute acquaintance who I vaguely remembered crying with… I did not remember being intimate with him.  Even for all the drinking I’d been doing, I really had stayed more true to my values than that, until then.
Six weeks later I had to admit to myself something was wrong.  The pregnancy test was absolutely devastating to me.  My dad wanted to disown me, at least for a while.  He was so disappointed. I was so angry at him and so hurt at how he treated me when I told him the news.  My mom was sweet and supportive, but I was truly raw from the emotion and retreated.  It took me a LONG, LONG time to realize that my anger really was toward myself.  But that is another story entirely! 
On the day that I heard my baby’s heartbeat, my life changed, fundamentally, forever.  I fell madly in love with my child and knew beyond any shadow of a doubt that I would spend the rest of my days doing everything in my power to be a good mom.  My life suddenly had incredible purpose.  I got a job processing real estate loans, cleaned all the crap out of my fridge and started swimming again. I lived SO healthy.  I exercised, ate very nutritiously and slept, a lot. I felt great and advanced in my job, getting promoted to loan officer in a short time.  The day I was induced I got up and swam a mile before checking into the hospital.  I was in labor for two hours and gave birth to my beautiful daughter, Jacquelynn Michele.  My whole family was there and for the record, my dad was the most amazing grampa from the first instant she joined the world!  Her birth dad was not interested in participating and I decided that I’d rather parent myself than have someone around her who made her feel like a mistake.  She was most certainly not.  She was a blessing straight from God; my angel, my saving grace.
I was determined to give Jackie the best of everything and not to be a burden on anyone.  I took a better job, with full benefits, as a Real Estate Loan Officer for a local bank, got my own apartment and found a loving home daycare nearby.  I worked hard, built my portfolio and nursed during my lunch hour, pumping during breaks.  In the evening, I’d stay up late holding her and reading to her and singing to her and just watching her with awe. 
I had some pain with eating and bowel movements but figured it was just everything getting readjusted from the pregnancy.  I’m tall, and due to changing my partying ways and exercising had actually lost weight in my pregnancy. I’m one of those people who could have hid it the entire time – I never needed maternity clothes…she just fit around things.  I thought maybe this was why I felt all scrunched up all the time.  I started noticing blood with my stool, but chose to believe that it was from the hemorrhoids I’d developed in  part cause she was born SO fast – and I had some tearing and things, too. 
By the time Jackie was six months old, it was pretty painful to eat – and it was time consuming, too, so I just kind of quit doing it.  Bowel movements were very few and far between and I dreaded them with my entire being as they were excruciatingly painful.  The bowl was full of dark blood each time.  I was exhausted but determined that I could do it myself. I did not need help. I quit nursing as I just couldn’t keep up the volume of milk needed.  Jackie went straight to regular food and thrived.
Once a few more months passed, my mom was on my case – sure that I was anorexic.  Every time I ate I had such horrific pain that it doubled me over.  I went to some doctors to find out what was up and they tested me for things like worms; but generally dismissed it as postpartum depression. I must be depressed being a single mom after all!  This annoyed me tremendously and basically strengthened my resolve to take care of my daughter myself – NOBODY gets to label me!  When I think about how scared I would be as a mom if Jackie was so sick, it makes me really mad at myself for putting my mom through that time. She cared so much and I kind of pushed her away.
One day when Jackie was about 15 months old I was walking over some property with a developer who was interested in putting in a new subdivision.  It was an important meeting with terrific ramifications for my career.  All the sudden I could hear the commercial loan officer and the developer talking to me, asking if I was okay, but I couldn’t answer them or respond. I passed out right then and there.  This was the push come to shove moment when I realized I had to find out what was wrong. The bank insisted on it!
A general practitioner in town thought a good place to start would be a colonoscopy so he sent instructions to the hospital and I did the prep and showed up to have the tests.  The next day the GI office called. I wasn’t really even sure what a GI was at that point! I’d been healthy my whole life!  And it wasn’t like now when you jump on the internet to research something…I know that ages me, but it wasn’t!  I was exhausted and sick and trying to take care of my daughter, and frankly scared to know the truth so I was completely na├»ve when the lady on the phone said to come in because they had news for me.  It sounded grim so I said to her, just TELL me!!! And she did.  She said, “You have Crohn’s Disease.” I said what is that?  She said, “well I don’t really know – I’m just a temp.” I said well you have to give me something more than that! She said, well let me look it up… “it says here that it is debilitating and there is no cure.”
I was devastated.  Horrified.  I think she knew then that she had said way too much and she started mumbling all this crap to make me feel better and then trying to cover her butt so she wouldn’t get in trouble.  Anyway, at that point I did the research.  I learned as much about it as I could and knuckled down to get it under control.  It was a lot of medication and a lot of time getting better, but I managed. 
During this time I met my husband.  He was sweet and made me laugh.  He made me feel like a human again and he was wonderful to Jackie.  It felt good to have someone to talk to and be an adult with.  We dated for two years and got married when Jackie was 3.  He adopted her and we were pretty happy.  I will say that even before I married him, I knew he was an alcoholic.  I don’t like to admit this, but it has been part of my healing.  I let it go because I had gone through a time when I drank too much and I quit. Part of me just believed he would, too.  And also, I believe alcoholism is a disease.  I too had a disease.  He was helping me cope with mine, and I would in turn help him cope with his.
Once I had been in remission for about a year, we decided to have a baby together.  We became pregnant right away.  I was so excited.  At 10 weeks I had significant spotting and an ultrasound revealed that the fetus was lost.  I underwent a D&C and thought I would die from the sadness in my heart.  I didn’t think I would ever recover.  I was able to become pregnant again pretty quickly and I know now what an incredible blessing that was.  My sister told me later that she thought Dylan just needed a little more time…I like that.
Unfortunately, I started having Crohn’s symptoms again and a trip to the GI revealed that I was indeed out of remission.  I was devastated.  I was having to take hormones to keep the pregnancy viable as it was.  Within a few months the Crohn’s was raging.  I went to the doctor in November of 98 and was told that I needed to stop all activity if I was going to carry the baby to term.  I quit my job on the way home.
I was NOT going to lose this baby. It was months of extreme pain, lots of medicine I didn’t want to take, but no real options. I was terrified that I’d either lose my son, or he’d be born horribly disadvantaged because of me.  Financially, I had to find something to help with the bills and I was fortunate to get hired by an internet ad tracking company out of New York.  Weird, and random, I know. I consider it another amazing blessing.  After a couple weeks I was promoted to full-time and started receiving benefits.  I lay in bed and worked and it helped some of the stress.  Poor Jackie would cuddle with me and we’d do our best to play and read and have some happy times.
Dylan was born on February 12, 1999, almost 6 weeks early but healthy and with all his fingers and toes.  He was beautiful and such a perfect little angel.  Once again, I had been blessed immensely.  He had to be weaned off prednisone because of my meds and had a little jaundice, but his lungs were strong and when he looked in my eyes, I knew that he and I were going to be fine.
From the beginning poor Dylan had GI issues.  He threw up every single time he ate for a year.  Because of research I had done about nursing and its relationship to Crohn’s, I was adamant about nursing and my milk was the only thing that he could keep in enough to be able to grow so for a year, that was all he had. 
I continued to struggle.  I lost weight, lost strength, lost energy.  My husband turned to drinking.  Jackie grew up a lot.  She ended up taking care of Dylan and I quite a bit at the tender age of just 5 – 6 years old.  She would get my meds for me and make me tea.  We continued to spend a lot of time playing in bed – games, reading, telling stories.  Going to the park – impossible; even though it adjoined our back yard. 
When Jackie was at school and Dylan was sleeping, or often in the middle of the night, I’d work my internet job.  This is an important part of the story because I don’t think people always consider the toll that chronic illness takes on ALL aspects of a family.  Financially, we were devastated.  Though I had insurance, the company was based out of New York and I lived in Montana – everything was out of network.  I worked throughout my illness and we held things together all the way up until the divorce when ultimately it all collapsed around me.  It’s a horrible “side effect” of chronic disease!  And frankly, it did not help Scott in dealing with his alcoholism. All these things  - financial insecurity, my fears and physical pain, having two small children, not being able to CURE me OR to fix any of it OR to just get away and have a break once in a while, added up to way more than he could handle. So he drank the pain away.
My family helped how they could through this but they lived five hours away.  And once again my fierce independent streak reared its ugly head.  I didn’t want to admit that I couldn’t take care of my family, OR frankly that I had not made a good choice when it came to my marriage.  To be fair, I think Scott tried.  He made dinner, grocery shopped, helped with laundry and things.  He still could make me laugh.  I did love him.  I wanted it to work.  But ultimately, I let it go on too long.  I didn’t reach out to my family and I think in retrospect that hurt them, too.  They needed to be able to help and I didn’t really allow it much.  Shutting them out made it harder for everyone.
By the time Dylan was a year I was so sick that I started obstructing on a fairly regular basis.  Dylan was weaned pretty much overnight.  I went to the hospital, he went on regular food.  Fortunately, and here’s another blessing, he finally took to it – just when it really was a must.  I should explain that I have never had diarrhea with my Crohn’s.  I go the opposite way – my bowels don’t spasm, they stop. Nothing goes through – they just swell shut.  I’ve had dozens of obstructions.  I go to ER, they put the NG tube up my nose and down my throat and basically rotoroot the blockage, then its lots of meds, IV nutrition…it was a vicious cycle for quite a while.  Around Christmas that year I noticed this large lump on my abdomen, it was like a baseball.  It was an abscess.  That took a couple weeks to drain. That was followed by a rectal fistula.  On Dylan’s birthday I was let out of the hospital to celebrate with him.  I remember all the family being there and how I looked forward to his party.  And then how heartbroken I was that my pain was horrific, I was too weak to lift him up.  I was back in the hospital with another abscess the next day.  After several days I was sent home, again.
Somewhere in this time I got a call from Jackie’s best friend’s mom.  She said, I don’t know how to ask you this, but Jackie’s been talking to Brooke and she’s pretty upset….Are you going to die?  It was horrible.  I had to sit down with Jackie and look her in the eye and tell her that I and the doctors were doing EVERYTHING we could to get me better. I told her we just had to pray with all our hearts. 
She was at school one day shortly thereafter and I was home with Dylan by myself.  Scott had gone to work just down the road (another blessing as he often worked out of town). I started having horrible, horrible pain.  I was blacking out.  I couldn’t find the phone.  I was worried about keeping Dylan safe.  He was just crying and crying.  I couldn’t stand up or crawl or move.  I just kept trying to calm him.  I had been working so had a piece of paper and a pen and started writing a “goodbye, I love you” letter to my kids. Then the phone rang and it helped Dylan to find it.  He brought it to me and it was my mom.  She was calling from a meeting in Helena to check on me.  THANK GOD, what a tremendous blessing!  I’m sure I scared her half to death.  She got a hold of Scott who had me in the car on the way to the hospital within minutes.  My mom met us shortly later – man she had to have flown to get there so fast.  I remember it hurting so badly and my mom trying to get someone to help me.  They had me drink some dye and were waiting for it to get down where they could see it and I was hurting so badly – the morphine didn’t begin to cut it.  Finally someone realized the dye wasn’t going through because it was spilling all over my abdomen, I had perforated.
So, it was emergency surgery.  I remember my doctor telling me that I may wake up with a bag.  I remember telling him that he could cut off my arm as long as it stopped the pain and kept me alive.  I ended up with two resections at the same time totaling about 3 ft.  I had another surgery a couple weeks later to repair a rectal fistula.  After that it was about a year before I felt human.  I went through depression and actually got on meds for it which I highly recommend.  It gave me the boost I needed to get through the worst and I was able to get off it quickly once I had my footing.  I saw naturopathic doctors and put together a whole package of nutrition, massage, homeopathic meds and traditional meds, along with exercise and finally Remicade infusions which ultimately led me to remission.
Since then, I have been grateful for every good day. I have had no more major flairs, though like so many I experience significant fatigue and have had many times when I get minor issues.  I have arthritis like pain in my knuckles, elbows and knees especially.  I got shingles. I had a growth on my eye that was Crohn’s related. I continue to get Remicade infusions every eight weeks and I’m so grateful.  I almost always feel myself breaking down near the end of the time and know that without it my quality of life would not be so good. I run because it keeps me regular and it frees my spirit. It’s my time. I run because I can.
I will stop here because I know that you are all probably exhausted from reading it!  You heard a lot of my story from this point on the motivation recording or you can read it through my blog.  I didn’t start doing Team Challenge or getting involved with CCFA for me.  I did it for my brother when he became ill and I’ll continue to do it for him and for my son and for all the people I’ve met on the journey.  My illness was very difficult for a very long time, but it gave me strength, taught me a lot of lessons and I believe paved the way for the very, very strong relationship that I have with both my kids.  It helped prepare me for other battles, including my eventual divorce, the pending foreclosure of my home and worst of all the diagnosis of my son with the same disease.  I still dream BIG, but it helped me reevaluate my goals, base them on things that give purpose to my life and to appreciate so much more than I ever did before.  I’m still a lucky kid…okay, well maybe not a kid!  But honestly, I’m way more a kid at heart than I was when I was constantly burning the candle at both ends doing everything I could just do to say I did!  I wouldn’t “give back” my Crohn’s if I could. It’s part of my journey. 

Saturday, May 14, 2011

Getting ready for the GARAGE SALE...

Today I've been preparing for the garage sale that I will have on Saturday the 21st. Making trips to Midland to pick up donations. It's going to be a great day! I'm sending Matt off so he doesn't have a panic attack the day of the sale. Just the thought of me selling his things makes his eye start twitching. I'm worried he'll pass out from the strain.

Wednesday, May 11, 2011

Krystal's entire story...

Yesterday I posted the video that Krystal's mom created. Today I'd like to post her entire story. This is her story that she emailed to me yesterday. Krystal has suffered with this disease her entire life.

My name is Krystal Carbone and I’m a crohnie and this is my story.  



Mine is lifelong and I’m almost 29 (May 19th). I’m thankful that this year on my birthday I will not be in the hospital or in recovery. Get comfy because this will take some time.
First, although I have battled with this disease for a long time, I am new to sharing my story.

Ok here we go.

As a baby I had severe colic and tum problems that would come and go. I grew up in poverty and product of a broken family; I suppressed many emotions and would worry about adult matters. I was often sick with a cold, flu, or strep throat. By age 10 I had already seen many doctors and had several tests, all which were inconclusive. At age 11 a gastrologist discovered I had multiple ulcers in my large intestines and diagnosed me with Ulcerative Colitis, the same disease my dad has. I was introduced to Prednisone and continued to have more tests done. What kind of tests? Many, many blood tests, along with a Fecal Occult blood test (stool sample), colonoscopy, flexible sigmoidoscopy, barium enema, small bowel imaging, and CT scan. My ulcers eventually healed and I came to know what is called remission. My health being a roller coaster of peaks and valleys, or flare ups and remission. During remission I lived a fairly normal life, loved dancing, playing sports, being with friends, sunshine, laughter and most of all loved my family.

It was during High School that my symptoms of diarrhea, abdominal pain & cramping, bloody stool, ulcerations, loss of appetite (seemed like it was better not to eat at all), fatigue, and anemia increased, interfering more and more with my life. I quit playing sports, less social, became depressed and angry that I was forced to live my life this way, just did not seem fair. Felt alone, like no one understood, I would tell people “I’m just sick” and they would reply, “Why are you sick all the time?” I couldn’t possibly tell them I had a disease, I could barely say the words. My Senior year of high school was the most challenging, I spent most of the year in pain, I experienced ulcerations it seemed everywhere: my eye, my mouth (one doctor told my parents I had herpes, how embarrassing & not true!), my large intestines and would later find out also in my small intestines, and there was so much blood coming from my bottom. I kept changing Doctors as it seemed like no one could help me get this under control or knew how to fix this. One doctor I had during this time, kept giving me prescriptions and at one point I was taking 15 pills every day! On top of the symptoms from the disease, I was also experiencing many side effects and literally felt like I was going crazy. Felt like I was going to the pharmacy, to the hospital for blood work, to the doctor’s office or to urgent care regularly. I remember this one day in particular, I sat in my room holding my head and screaming cause it hurt so bad and with tears streaming down my face, I dropped to my knees and asked God to please end my suffering and take my life ‘cause I could not deal no more. My stepmom took me E.R. and I was hospitalized and taken off all meds and once again switched doctors and gained a new gastrologist. I was put on Imuran to help try to keep me in remission and put back on prednisone again. Upon follow up it seems the problems persist no matter what is done, the gastrologist ups the prednisone. I’m on prednisone for probably several months, my face is puffy and I don’t feel like I know myself anymore, my emotions are out of my control. I’m 18 and just barely graduate from High School. With my health being a concern I make plans to go to a local community college and continue living at home so my parents can help me take care of myself, so much for independent woman. That was the worst summer ever, I was not allowed to be in direct sunlight, I stayed at home alone ‘cause I was having to use the bathroom so much and in so much pain I didn’t want to be around any of my friends. My diet consisted of jello, popsicles, and occasionally a soup broth or some very plain mashed potatoes on a good day.

It was September 2000 and I was going in for a follow up and to discuss now what because nothing seemed to be helping and I was sick of the prednisone and still depressed. I still remember the look on the gastrologist’s face as he said to me, “I’ve done all I can for you and think you may need to have surgery. You’re on more prednisone than a full grown man can handle and showing no signs of improvement.” I asked him how soon I should go talk to someone about surgery and he replied, “Are you able to go now?” I felt scared and confused; I still didn’t even really understand what was wrong with me. It all happened so quick, next thing I know the surgeon is talking about risks with my dad and me. I’m told they are going to remove my entire large intestines and create a stoma, where my waste will come out. The scar will only be about 6 inches and eventually it can be reversed and I can essentially be hooked back up like normal. I wake up from surgery and feel like I have been hit by a train, perhaps twice. I look down at my stomach at the row of staples holding me together, it stretches almost the whole length of my stomach; so much for 6 inches and then I see the ileostomy bag attached to me…I began to cry, this is not how a 18 year old is supposed to look. Who could possibly love and understand me this way? My boyfriend of 4 ½ years had broken up with me just prior to being admitted into the hospital and because of the time frame of recovery from surgery I had to postpone going to college, had been let go from my job because they could no longer hold my spot, and had to reschedule being baptized (at some point during all this pain, I had a come to Jesus moment). The support and love from my family helped me deal with the changes. I remember my stepmom made my two younger sisters scrub outfits and dressed them up and they came and took care of me. J  Having the same disease as my dad was hard for him, seeing me go through all of this, but it also bonded us.

I had just got home from the hospital and the phone rang, it was my gastrologist and he tells me they biopsied my large intestines and he has good and bad news: good news is my entire large intestines wasn’t inflamed, the bad news is I had the wrong surgery, they shouldn’t have removed my entire large intestines and this also means I have Crohn’s, not colitis. This hit me like a ton of bricks, this also meant there was no reversing this surgery, this was me for the rest of my life. I was so upset; I wanted to sue everyone for ruining my life but was told I couldn’t because there was no way anybody could have known until the biopsy. Looking towards the positive, I can now eat whatever I want and I did not waste any time, starting with fettuccine alfredo with chicken! Yum.   

I work with a RN Nurse who helps me adjust to having and taking care of a stoma. I seemed to have an unusually shaped stoma and finding the ideal bag and system is quite the process and is frustrating, one bag after another either doesn’t work cause of the size, I have leaks, or a few times the bag altogether just pulled away from my skin, leaving a unpleasant mess. Then not even two months later, I have gut retching pain just behind my stoma and am rushed back to the hospital, it seems a knot developed in my intestines, making processing all the delicious food I was eating backed up and causing pain. Surgery was done and back home to recover. I remained on Imuran but am no longer on prednisone. I started over: I was baptized, re-enrolled in college, took a job working for my grandma, and made new friends. I kept my ileostomy and disease to myself the best that I could and besides the struggles with having a bag, I felt healthy but I wasn’t happy. I turned to drinking and partying and other forms of self-destruction. Just as seasons changed so did my life: changed majors multiple times, in & out of relationships, changed jobs and remained in remission. I still continued with my medication and regular trips to the hospital for blood work.

Years went by. Still in college, had moved back in with my dad after another bad break up, working two jobs, and began working on improving my attitude and stopping the habits of self-destruction. From that break up, I realized I needed to really get in touch with myself and figure out who I am and what I am about. At 26, I re-unite with someone I had met three years ago at a club with a mutual friend and before long I was helping her out of her bad situation and we both moved into my mom’s. I was so excited about this new chapter in my life, I moved all my stuff in one day all by myself and that night we were cuddling and all of a sudden I felt a feeling I had not felt in a very long time…that feeling you get when you have seconds to get to the bathroom. I rushed into the bathroom just in time, and gush! Let’s recap I’m 26 and nothing has come out of my rectum since I was 18. It kept coming; I looked in the toilet to see blood, my blood, and tons of it! I went into shock, pounding on the wall hoping my girlfriend would hear me; thankfully she rushed in and proceeded to get my mom. Within the moments that it took for my mom to come downstairs, I had passed out, fell off the toilet, and hit my head on the shower door. Lying in my own blood, my mom picked me up as I regained consciousness. My mom yells, “Call 911 now!” I pass out again in my mom’s arms, still bleeding. My mom gets me upstairs (thankful that my mom is a strong woman both physically & mentally). I come back and I’m sitting on the upstairs toilet, my blood is clotting but still coming out. It’s getting to be painful, feels as though all the blood in me is being drained out of me within minutes. My naturally tan skin is white as a ghost, I feel so cold, I begin to convulse and pass out again, and this time my stepdad catches me before I hit anything. The ambulance has shown up, I open my eyes and remember thinking I don’t have health insurance, I can’t afford this but upon passing out once again, my rights are over-ruled as I will be dead soon if I don’t get to a hospital now. I open my eyes inside the ambulance, I’m weak and despite the layers of blankets I’m still shaking, my girlfriend is by my side, holding my hand with tears in her eyes, repeats over and over keep your eyes open, keep looking at me. She was afraid if my eyes closed that they wouldn’t open again. I remember thinking I can’t die, I’m too young, I haven’t really done anything yet plus I don’t know for sure if bi-sexual woman get to go to heaven. This was in April 2009. I was taken to ICU and given several blood transfusions and put on steroids. I was so weak and in so much pain, I refused to go through the usual line up of tests. I was told a long time ago that with still having an anus, I was high risk for colon cancer, I was never told at some point it might erupt and I may bleed to death. They couldn’t figure it out so I was closely monitored and once I seemed healthy enough and no longer bleeding, I was released, it was Mother’s Day. I spent the rest of the day with my mom, who said that having me alive was the best mother’s day gift ever.

Not even 24hours later, early in the morning I was awaken from sleep by a familiar feeling, it was back but this time I knew what to do. I ran to my mom’s door, yelling “we need to go back; I’m bleeding, hurry I don’t want to die!” I have never seen my mom get ready so quick nor drive so fast, yet it seemed like the longest care ride of my life. Wrapped up in towels to absorb the blood, I fought to remain conscious. I walked into the hospital and refused to be taken lightly; explaining I was just here and basically walking myself back to one of the rooms and telling them how this goes. I get warm blankets, and I.V. and start a blood transfusion and please find my surgeon. Before long I was all hooked up again and talking with my surgeon, how’s that for efficient! We agreed that surgery to remove my rectum and anus was necessary and it was schedule for the next day in the afternoon. I always found it ironic that I’m severely bleeding yet nurses kept coming in and taking my blood. Then at around 1am, I went to the bathroom to realize the bleeding was becoming out of control, this time I was burning up, sweating and convulsing. I was helped back in bed and a team of nurses rushed to stabilize me as my surgeon was paged, we needed to do the surgery now, there was no waiting any longer. I remember holding a male nurses hand, I was so scared and asked him, “please help me, and don’t let me die ok.” Another blood transfusion was started, I was hooked up on oxygen and other machines and was being prepped for surgery now. My girlfriend, who I had only been seeing for about 3 months prior to all of this, never once left my side. I asked her to call all my parents so I could tell them I loved them and say goodbye, just in case. It seemed like forever for my surgeon to show. My family says it seemed like forever as they waited together in the waiting room, apparently there was some minor complications making the surgery go twice as long. After surgery I was no longer in ICU but did end up having another blood transfusion and nurses continued to poke me with needles. Oh and I had a pick line in my neck just as I had with my surgery when I was 18. I must say having staples pulled out of your ass has to be one of the most painful things I have ever endured! I was in the hospital for a total of 14 days after surgery and released on May 19th, on my birthday.

Being the perseverant and determined young woman I have become, I once again started over. My girlfriend and I moved out and got our own place, took a new job as a social worker, and eventually we adopted two kittens full of personality. Almost a year later I was still experiencing draining from my rectum and something was wrong. I went back to my surgeon and was surprised by his reaction, “hmm, that’s odd. I didn’t see that one coming”, did not reassure me what so ever. He ordered test and freaked me out by telling me of the same test that recently went wrong and permanently damaged a young woman. I decided to continue packing my bottom at home and not do the test. Can you blame me? Besides I had already been through so many evasive tests in my life time, really when would it end.? After seeking advice from my support team, a.k.a. family & friends, I decided to try a new primary care doctor who referred me to a surgeon who specialized in colon & rectum surgery and came highly recommended. She took one look and said, “I bet its fistulas and you have two choices, have them removed or not.” This meant another surgery. I had to go home and think about it. I realized I was miserable and could not live the rest of my life with drainage from my rear and the cost of gauze already had been costly, I would have to get a 2nd job to support my gauze habit.

This surgery was supposed to be simple, in and out in less than half of a day and recovery about two months or so. Surgery was complicated due to an absinth in between the two fistulas; all of it had to be removed. I was still able to go home the same day. Being determined that this surgery was not going to set me back and I was not going to start over, I only took 3 days off work. I went back and broke down big time right in front of my boss and was sent home. I was being too hard on myself and everyone knew it but me.

I lightened my work load but still kept pressing forward. A couple months went by and I went in for my follow up, no progress towards healing had been made. Now this surgeon was surprised and unsure of what to do. (By the way, from this surgery it was left open so that it could heal on its own from the inside out, to prevent another fistula growing behind the new tissue.) I was referred to a wound care specialist, it’s now October 2010. I’m hooked up to a wound vac machine and go into wound care every Monday, Wednesday, and Friday to have it changed, which is an unpleasant, painful process, literally a pain in the ass. I’m also seeing my primary care doctor who is managing my pain management contract, since I’m always in pain since removing the fistulas. Thankfully my job is sympathetic and works with me through all my appointments. I’m not the only one inconvenienced by the appointments, I also have to bring someone with me to help the nurse hold my buns a part (a big shout out to my younger sister, my mom, and my girlfriend for stepping up and helping). In November, around Thanksgiving I get a really bad flu. I get a break from the wound vac since I’m not able to go in for my appointment and also spend Thanksgiving alone because I was really contagious. Once I well again, wound vac is put back on. In December 2010, I get an infection which is common and was lucky to have gone that long without one. I’m put on antibiotics which don’t seem to be helping. I take a gauze sample of the neon green stuff that is coming from my bottom to the wound care doctor and he realizes I’m on the wrong antibiotics; I finish out December on antibiotics and pain pills but the vac is working my tissue is building and the giant hole is getting smaller. By the end of January the wound vac has done all it can for me and we switch to packing it with this protein silver. I should also mention my dedicated and loving girlfriend was my at home nurse and learned how to do all this detailed packing. I’m also taking several supplements, on a high protein diet, and when I’m wasn’t at work I was at home laying on my tummy waiting to heal. February 2011, I come to a standstill; my tissue isn’t healing any longer despite doing everything I can think of with the exception of still working my desk job. I take a short leave of absence and healing starts again. I return to work officially part time, at this point I’ve lost interest in my program at work that isn’t getting the support it needs anyway and am focused solely on my health concerns. The wound care doctor insists I need to have an extended leave of absence, desperate to be healed I do as I’m told and requested to take a month off. It was approved and not even a week into it, I was called into work and let go due to performance. They needed the program to continue. It hurt knowing I was once again going to have to start over with a new job and I had tried so hard to not lose this one. I pushed back the tears and focused on my health; day in and day out I laid on my tum, patiently waiting for healing. It’s now March 2011 and I’m severally depressed and questioning my life, wondering if I had cheated death and now I was to suffer for the rest of my life. While lying around, I came across a video on YouTube for team challenge and watched as all of these courageous and energetic people crossed the finished line and remember one crohnie saying, “If I can do it you can do it.” I laughed and asked my mom what she thought of me training to run a half marathon once I was healed, she didn’t think it was a good idea but soon realized I need this challenge. I signed up while still healing but I had a new found hope and sure enough two weeks later my tissue was completely healed. I was cautioned that I had to be careful with my new tissue and it could take up to a month for it to fully be healed, I learned the hard way after tearing it a little and having to go back to nothing but rest. By the beginning of April I was walking every day and felt optimistic about the future and excited to take on this challenge. It’s hard to explain but my outlook on life is forever changed, what is important has changed, and I’m thankful for my family and everyone that played a part in helping me get to this point. It’s time, time for me to share my story and to help others who can relate to my journey. Just in sharing this with you now, I have cried multiple times because it is hard to relive the things I have been through and have for so long tried to bury. I have also smiled because I know I’m a strong and a survivor. This June I will be embracing life, have raised money to help so many others, and helped myself along the way. I can’t help but wonder what will happen next, if in another 8 years my life will again be at risk but I cannot live in this fear and must do what I can to cherish my life now; starting by going to Hawaii and finishing a half marathon! I’m also doing this for my dad who still suffers from colitis and will never allow himself to go through any surgery after witnessing all that I have endured; for those like my father, we need a cure because remission is no longer enough.

 

Thank you Krystal for sharing your story.