Speak up for HR1187 Today!

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

5 Years Without A Large Intestine!

This isn’t a typical art update but to me, it’s an important part of my life journey. As mentioned in my past posts, I have a digestive motility disorder and today happens to be a very milestone day for me. It marks 5 years since I cut off all ties to my large intestine.

The photo I requested after my 10ft+ Beast Of Large Intestine was removed 01-18-13

It came down to life or death and I just couldn’t keep it anymore. It gave up on what we had and caused me many years of agony and pain. It was sad to see it go. We had been together our whole lives. But I couldn’t hold on to something that wasn’t committed. Sometimes I look back at the photo of my large intestine and think of the better days we had. The days before my 20s when things ran much more smoothly. But I also know those days were over and it was time to move on. As you all know it was far from easy. As a matter of fact, my small intestine was not ready to let go. Went into a depression and then called for multiple strikes. Even tried to block things up a few times in protest. Confused the surgeons and went into full-on life or death riot mode. I guess it inspired my gallbladder. Because that thing decided to give me a year of temper tantrums following my surgeries. That was until my pancreas finally had enough and very painfully convinced me to put the thing out of its (and our) misery too.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.

For those who still follow this because you are living with the same issues I had or a similar idiopathic digestive motility disorder don’t give up! When a doctor closes a door, open another one! I opened and closed 14 of them! Don’t allow them to tell you it’s just IBS or GERD like they did to me. You know your body better than anyone. For those contemplating a total colectomy with anastomosis surgery, I am not going to lie to you. It won’t be easy. You know because you’ve read my journey here. It’s far from easy. You may or may not have complications the way I did. You may not develop adhesions the way I have. But the one thing that is for sure is that you will need to learn to cope with the hard recovery and accept the whole new body you are given. The reward is that you get to sit on the toilet thanking your lucky stars that you can take a dump and most importantly are alive to tell everyone about it! Ha Ha!

Stay Spooky!
LDG Nicole

More surgery for this living dead girl!

So I really am becoming more and more like the bride of Frankenstein. First I marry my high school sweetheart Frank on Halloween and now I am collecting a beautiful collection of surgery scars as doctors keep taking parts out of me and piecing me back together.

That’s me being humorous about the stress I am facing now. 🙂

So Monday we put Sabbath to sleep. Thursday I am being rushed to the ER.

To sum things up I now have gallstones and pancreatitis (and yes Sabbath had pancreatitis too). I was in intense pain that has subsided to aches and pains here and there. More less a lot of discomfort versus me being keeled over in a ball like I was on the way to the ER. I get these fun nausea spells as well. Also just very tired and very weak. I can’t do much without feeling drained. Part of this is also do to the fact I have been on only liquids for 4 days. That is until today. I met with my doctor and I can eat as long as I stick to a very strict no fat/low very low fat diet from now until I can get back in to see a specialist. This is to avoid me getting another attack and ending up having surgery in the ER. Needless to say when I meet with the specialist it will be to set up an ERCP. This is a procedure where they knock you out and go down your throat with a camera and tools and make sure your bile ducts are clear from any gallstones. This is the leading cause of people who get pancreatitis from gallstones. If they are not clear they will clear them at that time. Once I recover from that then I am back to the operating table to have my gallbladder removed. I really am not leaving much for the zombies to consume anymore. I mean no large intestine, no appendix and now soon to be no gallbladder. Guess they will just have to have whats left of my brains. And that isn’t too well these days either.

Just giving everyone a heads up. The reason for the heads up is because if you want to get anything from my Etsy shop now would be a really good time to do so. Not only cause of the financial burdens but because I may have to temporarily “vacation mode” shut down my shop once stuff starts rolling for me. Similar to when I had my previous surgeries.

Also I am still updating my GoFundMe page . This is the best place for you to get updates on how I am doing. Also if you share the page with others I would greatly appreciate it as I had to set some a new goal on there.

Stay Spooky and Healthy!
LDG Nicole

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

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.

 

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