Speak up for HR1187 Today!

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For those of us living with the daily challenges of a chronic gastrointestinal (GI) disorder (feel free to read my own personal journey here) or if you know someone who is, your voice is needed to create change! Today is IFFGD‘s Virtual Advocacy Day that was put into place to be our inspiration to make Congress aware of the importance of HR1187.

Here is the list IFFGD has provided to us to help share why we need to raise awareness for functional gastrointestinal and motility disorders (FGIMDs) and my added inputs for each……

  • Because FGIMDs are the most common digestive problems in the general population, affecting 1 in 4 people in the US.

Why are there not stricter labels and restrictions on our food? Why are there so many new GI conditions? This is not a fad this is an epidemic and it’s on the rise.

  • Because many are characterized by chronic and debilitating symptoms, often requiring a lifetime of care.

For me, a total colectomy was the answer to my colonic inertia and tortuous dead large intestine. But I still live every day controlled on how my body decides to react to things now that I have no large intestine, no gallbladder and developed adhesions and complications from my surgery.

  • Because some can be life-threatening, robbing those affected of their lives and their family members and friends of their loved ones.

Try living with the worst stomach ache that you have ever had and be made to live and function like a regular person. To have it happen unpredictably to you and control everything you do in life. Having to have your spouse turn into your caregiver and miss work to take care of you. Not being sure if you can make plans with others or travel because it all depends on how you feel. And when you do make those plans have to bring a purse full of medications to control unpredictable symptoms and your heating pad for overnight stays just to be comfortable. And let’s not forget how this effects those suffering with finding employment to not only stay financially stable but to pay all your medical expenses. Not everyone can be approved for disability, not all employers are understanding and there are not enough remote work from home opportunities for those of us who actually need them (I know cause I am still actively looking).

  • Because they remain poorly understood, and those affected are often misdiagnosed or mistreated.

I was misdiagnosed for 8 years and had every test imaginable. It was not until I traveled to Mayo Clinic in Minnesota and saw their specialist that I was able to finally get answers and the proper surgery I needed. Doctors here were telling me I had IBS and acid reflux and the whole time my large intestine was literally dieing inside of me. I was also told by one surgeon that I needed a colostomy bag to diagnosis what was wrong with me. Luckily I stuck to my gut (pun intended) and didn’t trust what these doctors were telling me. I literally had to go online and research my symptoms and talk to others who were also suffering to get answers. At many times after doing so I would have to ask doctors to perform tests on me that they didn’t even think to try.

  • Because no cures and few effective treatments exist

During my misdiagnosed years the doctors were trying to pump me with fiber and other medications that was actually making my symptoms worse. Many of us suffering can not get approved for medical marijuana for pain, nausea and to help with appetite because our conditions are not cookie cutter and on a list. Yet we can be prescribed narcotics/opiates that help with the pain but actually cause other organs in our body to fail, our symptoms to get worse, and are contributing to the rise of addiction. On top of all of that, many of us have new conditions (anxiety, depression, other organs issues) caused by the years of not getting treatment that we needed and trying to live and function like everyone else.

For all of these reasons, and more, we are taking a stand for the millions of Americans affected by asking our House Members of Congress to cosponsor The Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 1187).

Here are 3 ways you can take action:

  1. Find your House Congressional Representative and send an email (use this sample letter for inspiration).
  2. Call the U.S. Capitol Switchboard at (202) 224-3121 and ask to speak to your Representative’s healthcare staff member.
  3. Find your Representative’s Twitter handle or Facebook profile and share your message on social media with #HR1187.

Working together on Advocacy Day and throughout the year, we carry a clear, impactful message — that research needs to happen NOW! By speaking up, you can help expand critical research, initiate important legislation, and facilitate the development of new treatment options, cures, stricter food labels, disability/job protection, and doctors to be re-educated to stop misdiagnosing! If you share anything today let it be this post!

Stay Spooky & Supportive,
LDG Nicole

Creature Feature: Mutter Museum

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philly mutter (4)The Mutter Museum in Philly was mine and Frank’s #1 reason for wanting to go to Philly when we took our road trip with Mike and Heather back in March. Knowing how excited we were to go there Mike and Heather even paid for our admission as an added thank you for Frank driving the 11 hours to get us there (yes our friends rock!).

Part of the reason I was so intrigued by this place is because anatomy was my favorite subject in art school. Then you add on all my own “fun” ailments, my love for oddities and anything remotely macabre and that pretty much sums things up. Needless to say when we went there I was mesmerized by the place. We are both still so happy we got to experience it in person. Recently on an episode of Ozzy and Jack’s World Detour show we got to experience it all over again. As we were watching it we kept saying “ohhh we were there! We saw that!” ha ha.

I had been following the museum for many years before getting to go there and knew that every year they put up their Mutter Tree for Christmas. Often people send in ornaments to donate that go with the theme of the museum. Well this year I decided to donate one of my 2016 Santa Claws Christmas Ornaments to the Mutter Tree! Well go and behold I opened this post on Instagram this morning and could not be more thrilled!

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So thrilled it arrived in one piece and is now a part of this incredible museum’s holiday tradition!  See other ways my art and handmade creations have been featured and displayed on my official portfolio website! Also if you like this ornament, there are other versions of it available in my Etsy shop. They are one of a kind so once they are gone they are gone! Happy Holidays everyone!

Stay Spooky!
LDG Nicole

Back Bone: Walking For The Heart

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I’m walking in the American Heart Association’s 5K Heart Walk to raise funds for heart disease and stroke research and education. I have joined the team The Super Santori’s to stand by my friend Heather’s side as we walk in memory of her dad who recently passed away.

Dave Santori

Dave Santori

Events like Heart Walk make a difference. Through education and research, the American Heart Association is working to build healthier lives for all Americans.

Click on the link below to visit my fundraising page to make a secure, tax-deductible donation and find out more about why I’m participating in the Heart Walk. No amount is too small! Every dollar amount gets us closer to our goal.

Thank you in advance for your donation and support! Life. Life is why we have the American Heart Association’s Heart Walk.

http://heartwalk.kintera.org/bloomingtonil/nicolegarcia1031

Stay Spooky and Supportive!
LDG Nicole

Deadly Designs: South Suburban Food Co-op Sign on Display

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I made a stop at the local food co-op to get some organic and gluten free groceries and got to see the sign that I designed for them up on display in the store. I have to admit my heart smiled when I saw it. Not only to see my work displayed in the store but to know it is a store that supports healthy living including those with digestive disorders like myself. This place really is amazing and I am honored to be able to use my art to help their business.

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To see more of my design work check out the Deadly Designs section of my website!

Feel free to also contact me to inquire on prices to have work done for your business, band, venue, benefit, event etc.

Stay Spooky,
LDG Nicole

Stop Monsanto’s secret plan to Kill GMO labeling!

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As someone that has been battling digestive issues for almost 10 years, has had their large intestine removed because of it and still has to watch what I eat and the labels on food I ask you to PLEASE take a couple seconds of your time to go sign this petition online! I would really appreciate it. Passing it on would be fantastic as well.

We are what we eat!

More info:

Right now Monsanto and giant food companies are scheming behind the scenes with the Grocery Manufacturers Association to introduce a bill in Congress that would kill mandatory GMO labeling efforts and replace it with a gutted version of a bill that to preempt state’s rights and give the illusion of serious regulation.

This plan is so devious that it radically speeds up the approval process for new GMO crops, limits the FDA and USDA’s ability to extend premarket safety reviews, declares GMO foods “safe” and redefines genetically engineered foods as “bioengineered” in order to sanitize this deeply flawed technology for the American public.

Even worse, the proposed bill only requires a federal GMO “label on any products” from GMO plants “if those ingredients present a health or safety risk.” Something the U.S. government has refused to admit for more than 20 years! Think they’re going to start telling the truth about GMOs now?

This also allows them to label GMO products as “ALL NATURAL”

This is an outrageous power grab to deny Americans their basic right to GMO labeling and protect flawed GMO products and we can’t allow them to get away with it. We need your help today. Every voice counts!

http://action.fooddemocracynow.org/sign/stop_Monsantos_secret_plan_to_kill_GMO_labeling/

Every voice counts.