LIVING

With EoE, Allergies, Asthma and a G-Tube

How CURED helped me

As you know I spoke at the CURED 2017 conference last week. It opened my eyes. I knew that we were in our own little bubble world of EoE at my house. What I didn’t realize is that I also had a wall up around that bubble.

I was aware of what I thought CURED did. Attending this conference really brought me back to reality and showed me CURED is so much more.

CURED brought together professionals from all over the globe.

20171025_212054.jpgDo you even realize how amazing that is? Because of CURED doctors from all over the world are able to gather to share and learn about eosinophilic diseases. They are gaining knowledge and that means they are coming closer to a cure.

On Thursday I listened to many doctors and researchers discus different aspects of eosinophilic diseases. What really stuck out to me was hearing others in the profession stand to ask questions when the speaker was done. It made me realize that not everything is known. Doctors are still learning. They were there hoping to hear answers just as I was.

Friday was the same. What really brought me back to reality was hearing just how rare my kids still are. We are under 5% with how extreme their diets are and even a smaller percentage being that we have so many with EoE in our family. It opened my eyes, reminded me that I need to be fighting more for them.

I never realized the amount of research that goes into finding a cure. Do you know? It’s not just about finding a pill. They have to look at environmental factors. Is something triggering the disease to flare? How about genetics? My family has 5 people with EoE, other families have 1. They look at what the cells are doing and why they’re doing it. How food allergies play a roll, including environmental. I could go on and on. All of these different doctors are digging in at every aspect. It’s much, much more than just finding a pill.

Speakers at the conference.

Photo credit :Ting Wen

I left that conference feeling amazing. Just knowing all that is going on to help my kids eat one day. This group of people is really trying. I know this because they came to CURED to share and learn more. The amount of compassion they showed me after I gave my speech really reinforced that. They don’t really know what goes on at home, and I really pray that after hearing my speech it will push them to work harder.

Monday after the conference we visited our GI for an in office check up. I had a lot of questions to ask. Questions I wouldn’t have had if I hadn’t been to the conference. What I realized was that a lot of the information I had gained is still unknown to many doctors. It even came to the point during our appointment that our GI sort of released us. She told me if I wanted to get a 2nd opinion she would understand. If I hadn’t been to the conference that never would have crossed my mind. I was stuck in such a rut with Gage and Tinleigh that I never imagined seeking the advice of another doctor. We’ve done a blood draw on Tinleigh to check her cortisol levels while being on the steroid. Gage is having one as well. Our GI told me that if Tinleigh’s levels are low she really won’t know what to do with Tinleigh at that point. I think it is time to move on.

So we are starting a sort of new adventure. I am now GI doctor hunting. That seems so scary to me. I truly believe our GI cares for us and really goes out of her way for us at times. How will I ever replace that?

I am a believer that everything happens for a reason. The opportunity I had to go to the CURED conference was two-fold. It opened my eyes to move forward and find a new GI that can help my kids come closer to a cure. It also showed me how important CURED really is. CURED does much more than raise money for research. It brings people together in the industry from all over the world that want nothing more than to find a cure. It allows patients and family members to join together in person. They have a chance to hug, cry and feel like they’re not alone. It allows children suffering from Eosinophilic diseases come together to meet others going through the same tough life. Because of CURED I left feeling a renewed hope that seeing my kids tube free in the future will be a reality, not just a dream.

So from the bottom of my heart,

Thank you, Ellyn, for creating CURED and bringing this mom back to life in the fight to help her kids. Thank you Shay, and everyone, that makes the CURED conference possible.

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October 26, 2017 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , | 2 Comments

CURED 2017

A few short months ago Ellyn Kodroff, CEO of CURED, asked Nathan and I to speak at the upcoming conference in October. We had no plans to go, but something told me I was going to do this.

So Nathan and I went back and forth on making it happen. I had planned to take the kids to Ohio the weekend before to visit family then Nathan would join us in Cincinnati for the conference. Then everything got changed around and it ended up that I would be the only one going. Once I accepted this change, I happily embraced the fact I would have approximately 48 hours kid free.

I watched some of the previous speeches that parents had given at the conferences years before. Nothing was really coming to mind of how I wanted to present our story to a group of doctors, researchers, patients and parents. As the end of September quickly crept up I knew I needed to get busy, Ellyn wanted a copy of my speech as the October calendar rolled over. So one evening I sat down and just went to it. The speech just flowed out and by the time I was done I had 5 pages of what I wanted to share.

There was a problem though, I was only given a 15 minute time slot so I had to trim down this 25 minute long story. That part may have actually been harder than figuring out what to write. Then I had to add a slide show. Once I remembered how to use Power Point, the perfect pictures came to mind so plugging them in was no problem.

Writing the story ended up being no problem, practicing it deemed to be a problem. I could not make it through with out coming to tears. Okay, sobbing. I finally worked up the courage to read it to Nathan. We were both a mess. Day to day I’m really fine. I don’t really ever cry. Once I had our whole story laid out in front of me, all smooshed together in one bucket, it was very hard to face. I’m not sure if it’s the disease and everything the kids have faced. It could be all the crying I have suppressed over the years. I don’t know. Just a few days before the conference I decided to read it to the kids. What was I thinking?! I didn’t read it all because some of it would have been too much for them. What I did read though brought Charlie to tears. He asked me if that’s what it was really like going through all of it. So maybe it’s just that our story is sad.

So off I went to Ohio. I could write a whole blog post on my first time ever renting a car. I’ll save you the details and let you imagine how that went. 20171023_001320.jpg

I made it through Thursday listening to doctors presenting. I noticed that a few did seem a bit nervous. Why not? They’re human too. Though, it really didn’t help me relax any. Friday morning arrived. I was up at 5:30, 4 hours and 15 minutes until I had to speak. I arrived at the conference and found a seat, then a muffin and coffee. I ate a few bites noticing my mouth was already dry as the desert. I decided to get up and head out to meet some people. Maybe that would loosen me up a bit and make me forget about having to present. I met a few moms that I knew only through facebook. It was so exciting. It’s sort of like meeting a celebrity.

I made my way back in to sit down to try and force my breakfast down. As more people came in someone placed their belongings in the seat in front of me. That someone was The Dr Marc Rothenberg, one of the world’s foremost authorities on eosinophilic disorders. Yep, breakfast was over.

As the morning started and the first speaker was announced I was focusing on my breathing. I kept trying to relax. I kept reminding myself how important it was for me to share our story with a sold out room filled with doctors, researchers, pharma, patients and parents. I believe there were 200 people there. 20171022_233920.jpgI recently came across this scripture, it came at just the right time. I saved it as the screen saver on my phone. I think I read it a thousand times that morning before my speech. Maybe this scripture is meant for something much larger, but it definitely helped me that day.

As each speech ended and the time grew closer I really thought my heart was going to jump right out of my chest. I’m pretty certain the guy sitting beside me must have thought I was crazy as I kept taking huge deep breaths trying to calm down. Before I knew it, it was my time to shine. I already had tears in my eyes, my emotions were so high.

I made my way up on the stage, asked the lady who introduced me how to work the clicker for my power point, she showed me then left me to present.

As I opened my mouth the tears started coming. I took another deep breath, and said “Phew! Let’s switch gears for a moment as I share a patients side of things.” Then I went right into it. After thanking all the doctors for coming to share and wanting to learn I thought I was going down. I don’t know how I pulled it together, but I did. I could hear myself talking, I wasn’t rushing and I had magically memorized my speech. I was able to look at the crowd that I had feared and shared my family’s journey with every ounce of my heart. As I clicked through the power point I would glimpse at the pictures on the small screen in front of me and every one reminded me why I was doing this.

When I finally made it to the end I was crying. Getting those last few sentences out was the toughest. But, I did it. All I can remember is that I said thank you. Picking my papers up off the podium is a picture that is burned in my head. I didn’t wait for questions from the audience. I walked off the stage and gave Ellyn the biggest hug. I felt SO good knowing I did it. What I didn’t notice though was that everyone in that room was giving me a standing ovation. WOW! How did I do that with our story? I’ve also been told there wasn’t a dry eye in the room. 20171023_001346.png

So many people approached me and thanked me for sharing afterwards. A few speakers that followed even mentioned me. It was amazing. I have never felt so accomplished. I know I did the right thing by accepting Ellyn’s invitation. I had opened the eyes of the medical professionals. I let them see just a glimpse of life in a family with EoE. I hope I lit a little fire under them.

There was one gentleman, who I didn’t get his name. He approached me and thanked me for sharing. He then told me I am an amazing woman. To handle what my family has gone through and is going through I must be able to handle anything. He told me I am very strong and that I am a super mom.  It was like what all of you, my cheering section, has always told me. You know what? It felt good to hear it again after giving that emotional speech. Like maybe now I accept that title.

Thank you to all of my supporters who cheered me on! This was definitely an experience that isn’t over. I feel it maybe the start of something new.

Stay tuned. I am going to share more on the conference!

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October 23, 2017 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING, Nathan's allergies, Tinleigh's allergies | , , , , , , , , , | 4 Comments

What I got from The Lorax

I took all three kids to see The Lorax. I’m not going to go into all the messages it was sending like save the earth, industry is bad, people just want to be rich and are greedy. I’m sure my 3 and 6 year old didn’t pick up on that.

Anyways, at the very end of the movie there was a Doctor Seuss quote

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

I thought yep, that’s why I blog.

I care so very much and want to raise awareness.

I want others to care and I want everyone to donate to help find a cure.
Take time today and donate a little, or a lot!
It’s up to us to help.

CURED

March 24, 2012 Posted by | LIVING | , , , , | 1 Comment

Please donate

http://www.vivint.com/givesbackproject/charity/1633

Vote for Cured on vivint and donate!

They’re giving away $1,250,000 to charities . The charity that has earned the most overall votes will then be awarded $250,000. The remaining charities that earn the most from each of the regions will each receive a $100,000 donation. On August 27, they’ll announce the winners.

$1,300 – total donated to this charity

$1,200 – donated of the $5,000 goal

$50 – amount we’ll match from you

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July 22, 2011 Posted by | LIVING | , , , , , , | Leave a comment

   

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