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:
- Find your House Congressional Representative and send an email (use this sample letter for inspiration).
- Call the U.S. Capitol Switchboard at (202) 224-3121 and ask to speak to your Representative’s healthcare staff member.
- 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
I will admit I will forever be haunted by my missing organs. The rest of my system reminds me every day of how much harder it has to work without them around. I just try to remind myself of how much harder it was when those slackers were in there not doing their jobs. There are good days and bad. There are missed days off from work, ER visits, panic attacks, constant diet changes, blockage scares with bouts of liquid diets and turning down social events. I guess you can say every day is a new adventure because I never know what my body is going to do and how it’s going to react.
I learned to accept that this is my life now. It’s not perfect but I remember when it was worse. One thing stays the same. Saying goodbye was the scariest decision I ever made but it had to be made. It is also one of the hardest things I have ever gone through both physically and mentally (I still get depressed sometimes and even have some PTSD like symptoms) but I am alive to tell others my story. I am also blessed to have an amazing and very patient husband who has been my rock through all of it. Family and friends who care enough to check in on me to see how I am when I am not feeling well and to make sure I am able to eat when we are able to actually get together. Co-workers who understand when I can’t make it to work but acknowledge how I never fall behind when I do. And now that I think about it, this really does go hand and hand with my art as well. Because all of you that follow this blog, support or spread the word about my art or buy my creations help give me the support to keep trucking along and doing what I love to do.
Living Dead Girl Nicole 