How TPN saved me.

In honor of HPN Awareness week, our editor Samantha shares some of her life on TPN, and what it was like. Read her story below!

Hustle & Heart

Two years. It’s been two years now on TPN. That’s 730 bags of TPN! I don’t even want to know how many needles or syringes were used in that time.

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I was terrified when this all started. I remember the months leading up to the start of TPN. So many days I was afraid to sleep feeling like I wasn’t going to wake up. I felt my body shutting down. I was malnourished, tired, and no matter how much I wanted to keep fighting, it was becoming more and more obvious my body wasn’t able to keep up anymore.

I remember telling my endocrinologist I thought I was going to die. I was leaving the hospital after much needed calcium infusions and fluids, and my blood pressure was so low, the nurses didn’t want me to leave. My bloodwork was atrocious. My body was dragging and I was barely functioning.

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What is H.R. 1187?

What is H.R. 1187 – Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017? Pact Blog writer Nancy explains just what this bill is, and how you can get involved!


You may have noticed posts on social media about H.R. 1187. This bill is important for those of us with gastrointestinal diseases and is something that you may want to write to your congressional representative asking them to co-sponsor the bill. H.R. 1187 is requesting expansion of research into functional gastrointestinal and motility disorders (FGIMDs). It is an amendment to the Public Health Service Act that requires the National Institutes of Health (NIH) and other public health institutions to expand activities related to FGIMDs.

It’s no surprise to those of us who suffer from Digestive Tract Paralysis (DTP) conditions, like Gastroparesis, that research related to our conditions are underfunded. It sometimes takes years for patients to get diagnosed and often physicians are lack knowledge on how to treat patients with digestive diseases. This bill supports education for health care providers and provide the funding for research.

This bill was introduced February 2017 and was referred to the congressional subcommittee on health. It’s been sitting there since February 2017. There are currently fifteen co-sponsors.  The International Foundation for Functional Gastrointestinal Disorders (IFFGD) is supporting efforts to obtain more co-sponsors and move this bill along. To get involved, contact your congressional representative.

Here’s how you can take action:

  • Identify your congressional representative. Visit US House of Representatives site and select your state and district. This will take you to your representative. If you’re not sure of your district, your Voter Registration card lists your congressional district. Or contact your local election registration office.
  • Call or email your congressional representative. Be sure to include your name and address information in any correspondence.
  • Ask them to co-sponsor and support H.R. 1187.
  • Tell them your story and how your digestive disease has impacted your life.

For additional information visit IFFGD advocacy page https://iffgd.org/advocate-for-digestive-health/legislative-issues/fgimd-act.html

Resources:

https://www.congress.gov/bill/115th-congress/house-bill/1187

https://iffgd.org/advocate-for-digestive-health.html

https://iffgd.org/advocate-for-digestive-health/taking-action-in-washington/congressional-bill.html

 

 

Malnutrition Awareness Week

Malnutrition Awareness Week

Date: September 24-28, 2018
Website: http://www.nutritioncare.org/maw
Contact Information: (301) 587-6315, info@nutritioncare.org

Join the American Society for Parenteral and Enteral Nutrition (ASPEN) September 24-28, 2018 for their seventh annual Malnutrition Awareness Week™. Malnutrition Awareness Week is a multiorganizational, multi-pronged campaign created by ASPEN to: • Educate healthcare professionals to identify and treat for malnutrition earlier • Educate consumers/patients to discuss their nutrition status with healthcare professionals • Increase awareness of nutrition’s role on patient recovery.
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It’s a week filled with valuable educational webinars and sharing of informational materials.

In addition to the webinars, ASPEN will facilitate a Malnutrition Awareness Week Twitter Chat focused on the role of nutrition on falls, fractures and patient safety, provide support materials, and host a live, virtual lunch with the experts on legislation for malnutrition prevention. Join the conversation online by using the hashtag #MAW2018.
For more information and to register, visit http://www.nutritioncare.org/maw.

Reach out to Congress with IFFGD

Interested in working on your advocacy? Read below what IFFGD is doing this month and how you can help!


During the month of September, join IFFGD and advocates across the nation in making your voice heard in Washington! Write a letter or draw a picture sharing your personal experience with a chronic gastrointestinal (GI) illness and the need for greater research funding into treatments and cures through the Functional GI and Motility Disorders Research Enhancement Act, HR 1187. (To learn more about bill HR 1187, go to https://www.congress.gov/bill/115th-congress/house-bill/1187).

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Then, send your letters or pictures to Peter Herzog by email to herzog@hmcw.org or by mail to 507 Capitol Court NE, Suite 200, Washington DC 20002 on or before Friday, September 21st. On Wednesday, September 26th, IFFGD will hand deliver your letters and pictures to your House Members of Congress. By all taking action, together we can maximize the impact of our message and raise critical awareness for the millions of Americans living daily with the challenges of a chronic GI disorder. 

 

Learn more at  https://iffgd.org/advocate-for-digestive-health/taking-action-in-washington/sample-letter-to-congress.html

Champion Patient: Roxanne

During Awareness Month, we shared stories each week of a Champion Patient. Each had a unique story to tell, and wanted to share their story with the Pact Blog, and the rest of the DTP Community. This week, we feature another young woman’s story. Read about Roxanne below.


I want to say the first thing people notice about me is my great skin, my smile, or even my clothes. Instead, it’s my tubes. When my dog tangles herself around a tree, I’m usually right there beside her with the same problem. We just stare at each other and sigh.

roxanne1My name is Roxanne and I have gastroparesis, slow colonic transit, a neuromuscular disorder, migraines, fibromyalgia, chronic respiratory failure, hypokalemia, polycystic ovarian syndrome, metabolic disease, chronic GERD, chronic gastritis, sun allergy, diastolic dysfunction, and of course, the various side effects these all bring. I didn’t have all of these when I was younger, and honestly, I have no clue which of them came first and triggered the others. All I do know, is from the time I was born, I was not okay.

I have very fond memories of my childhood. I played outside, made cars out of old q-tip boxes, rollerbladed, and circled all the toys I wanted in the Toys r’ us catalogue. I swam, I ran, I even had green eggs and ham; yet, in the shadows, I never felt alright. The earliest memory I have is of me throwing up before preschool. I have pictures of school outings where all I remember was coating the grass. I loved vacations, but every long car ride I was nauseous. My mom said when I was a few months old I had the same issue. The doctor suggested I was lactose intolerant. As I got older, it became motion sickness, gastroenteritis, ulcers, gastritis, cyclic vomiting syndrome, IBS, food intolerance, growing pains, porphyria, and insanity.

roxanne2I’d come home from school and collapse into my grandma’s arms from pain. She’d rub my back and make me tea. In high school, I mostly ate Lucky Charms my junior and senior years. I lost weight. In college, I found myself unable to attend most of my morning classes; I couldn’t concentrate. I got a job as a manager, and right before my promotion, I fell to the floor. I’d spend my nights throwing up in the bathroom while my husband slept. I started throwing up on invoices at work, in the bathroom, in the pharmacy, in the car, in my office, on books, and even on myself. I had to quit. My husband was as supportive as he knew how, but it wasn’t what he had signed up for. Before long, we divorced. Then, finally, during my hundredth hospitalization, I was diagnosed with gastroparesis. I was 24. I was fat. I felt alone.

When I stumbled upon the G-PACT page, I finally started to understand this condition. My years of frustration, confusion, loneliness, sickness, and anger finally made sense! I wasn’t the only one who’s been told, “for someone who throws up so much, you don’t look like it.” I wasn’t the only one who hated those radioactive eggs. I wasn’t the only one who had so much abdominal pain for a condition I was told that “caused no pain.” I wasn’t the only one who had to stop working, who took twice as long to graduate due to hospitalizations, who now has a useless degree, who lost relationships, and who lost themselves. I found a community and hope. roxanne3

Now, every morning I wake up, I’m more exhausted than the day before. It takes an hour or so to get back some feeling in my hands and legs. I set up my feeding pump, take my medications, empty last night’s bucket and Farrell bag, start my infusion, and slink back into bed. There are days I’ve literally ripped my own skin from pain; days I can barely talk or stay awake, and days when it’s both. There’s a deep thick layer of depression and anxiety that comes along with being chronically ill. It’s extremely isolating and draining. I had no idea how much of society is centered around food and the gazillion commercials on TV are almost mocking. I don’t know what to tell family members or my boyfriend when one day the smell of them making eggs doesn’t bother me and the next it’s enough to send me to my bucket. How do you even explain to friends about having multiple buckets to begin with, and emesis bags everywhere? How do you handle conversations where the other person is telling you about their promotion, having children, etc and they ask, “how are you?” How do you tell them your biggest accomplishment was using the bathroom, projectile vomiting into the bucket on the floor instead of the bed, getting up to shower, that there’s no longer blood in your urine, that you actually managed to get 600 calories today, or that I’ve got more tape on me than what’s available at Office Depot? Yes, I could, but I don’t want to bring down the mood. I don’t want to be “that person.” As supportive as everyone is around me, I don’t have the heart to tell them how I truly feel because I hate seeing that helpless sadness in their eyes.  I say “fine” so they can be. In the online groups, I don’t have to do that. I don’t have to hide or be afraid I’ll be pitied. If I joke about putting a mini fridge in my bathroom, instead of having to awkwardly explain, I get an entire community of people laughing and saying it’s a great idea.

roxanne5I’m learning to accept the cards I’ve been dealt but that doesn’t mean I’ll ever surrender. I have so many amazing role models to admire. I know if we all made it this far, I can go further. I wish I could hug every single person going through any of this. We’ve all had to experience so much I can’t fathom anyone being called less than a warrior. I know my journey might have been difficult, but there are plenty of other stories out there just as harrowing, or worse.

I just want to make sure that I thank every last one of you for being a well of information and comfort.  I cannot stress enough how much you’ve all helped me through tough times. We can never give up, even when our bodies have. Just remember, there’s someone out there if you’re struggling and need a hand. You are not alone. You’re loved no matter how broken you feel. In those moments when you’re screaming in silence, you have an entire community who can hear.

 

Do you want to share your story with the Pact Blog? We’d love to hear from you! Email Samantha at smiths@g-pact.org

 

Champion Patient: Dalia Chokr

IMG_7482It’s the last Friday of the month, and our last Champion Patient of awareness month. This week, we feature Dalia Chokr. While Dalia is no longer with us to share her story in her own words, some of us who had the honor to call her a friend have gathered some thoughts and stories to share.


I haven’t been able to find the words to truly emphasize what she meant to me, and to so many of us. When I found out Dalia was gone, I did the only thing I could think to do. I ran. I ran on this cold, damp day with tears falling fast. Not long ago you and I were talking about life, illness, and you were encouraging me to keep running. Today, I ran for you. Tomorrow, I will run for you. I will continue to run for you. No matter how tired I am, how tough it gets, how much it hurts, I will continue to fight because you never gave up.

There isn’t any amount of consoling that can make this better. Death is final, and words just feel empty. A selfless, beautiful soul has been taken from the world WAY before her time.

IMG_7484In the online community of those dealing with chronic illness, you were the center. You were the glue that held us all together. No matter what you were dealing with, you always went out of your way to help others. I will forever remember our chats, your advice, and what a FEARLESS WARRIOR you were. The world may have lost a valuable voice, but we all gained an amazing guardian angel. This year has been great with loss in our communities, and I encourage each and every one of you out there to hug your loved ones tighter tonight. Tomorrow isn’t promised to any of us.

Fly high, soul sister. I’m still running for you, and I will continue to for as long as I can.
–Samantha


I don’t have the time or the vocabulary to accurately describe who Dal was to me. In short, she was one of the best friends I have ever had.

We helped each other through a lot from the day we met.

image2A couple months after the first fundraiser I attended, the day we finally got to meet and connect in person, she was running late and I was sitting in the corner of baggage claim at the Detroit airport. I was so nervous, it was like first date jitters. I briefly considered ditching and flying somewhere completely random.

I kept thinking, “what the hell am I doing? I’m almost 20 years old, sick as a dog, going to stay in a house for a week where I’ve only met the people over facetime and briefly at an event a few months prior.”

But the minute she saw me, something clicked. From that moment on, she became my big sister. Now, I have an older and younger brother, and also a younger sister, but I don’t have an older sister. And I don’t have anyone in my family who can personally understand what being chronically ill is like. And although I had my best friends at home, something about this was different. I didn’t know it yet, but her strength would help me survive so much more than just physical health issues in the next 3 years.Image-2

I would go into detail about all the times we spent together over those next few years. My 20th birthday, starting Vials of Love, making and selling shirts, spontaneous road trips to Chicago, countless ER visits and planning fundraisers, but like I said, I really don’t have that kind of time.

I want to share with you two specific memories I have with Dal that I like to revisit when the going gets tough. The first was the week of my 20th birthday. We had just started our business and were headed to a conference of medical professionals to educate about the importance of rare illness. Dal liked to say “when you hear hoof beats, don’t just think horses; sometimes it’s zebras.”

That night, at the hotel, we celebrated a conference well done by taking to the dance floor. At this point in our lives, we were both completely fed by IV’s and had a very difficult time remaining upright for long periods of time, but we danced the night away without a care in the world. That whole time I kept thinking, “this is where I belong. I’ve found my place, I’ve found my family.”

IMG_7546That summer, our best friend Sarah and I road tripped back to Detroit for another fundraiser. I don’t remember much of the first few days because I started having seizures that week, but I do know those girls saved my life. I spent some time in the hospital up there and the second I got out we hit the road to Chicago. That was the thing about the 3 of us. If we wanted it, nothing was going to hold us back. We walked around that city for hours and I don’t remember feeling tired or sore at all, although I’m sure we did the next day!

Something about her will, her strength, her ability to know what limits could and should be pushed was something I admired most. She often liked to say that she was determined to LIVE, not just survive, and I sure as hell think she accomplished that.

Of course, I miss my best friend every day, but her memory, her zeal, her strength beats inside me forever.
-Tori


IMG_7538When Tori and I visited Dalia in Michigan it was a trip of non stop laughter. Even though that trip also consisted of a few hospital visits, the three of us connected that week still over hooking up our TPN together at the same time, filling our meds together, and joking all while doing it. We took a spontaneous trip to Chicago for which I’ll always be grateful for. The three of us walked around that amazing city, visited a firehouse from one of my favorite TV shows, and saw all the sights. Dalia, she was an amazing advocate for Gastroparesis, and did what she could to raise awareness. She was always there for others even when she didn’t feel good because that’s just the kind of person she was.
-Sarah


cardalDalia was the very first person I met with the same chronic illnesses as me. I remember posting in an online support group and she befriended me right away. She was with me through every step of my journey. From helping me adjust to life as a gastroparesis warrior, to encouraging me to push myself and overcome hurdles I couldn’t have gotten over on my own. Dalia was there ‘round the clock through text messages and phone calls when I got my feeding tube. She walked me through it all. But our friendship didn’t stop at health related things. We bonded over a mutual love for the lead character of a short lived show called Twisted. We put together care packages for each other usually in themes of green or blue, the colors for gastroparesis and dysautonomia (two illnesses she advocated fiercely for). She was there full of love and support when I came out as a lesbian to all of my friends and family and she was among the first to tell me my girlfriend was a keeper. She cheered me on as I went back to college to finish my degree, something no one ever thought I’d be able to do. Dalia was one of those friends who would be admitted to the hospital, sick as can be and still send you a text to see how you were doing.

If you ask anyone who knew Dalia what type of person she was, they’d tell you she was the glue that held us all together- individually and as a group. She created this family of warriors. Not a family by blood, but a family by strength. She was a mentor, a friend, and a big sister to not only me, but to all of us in the chronic illness community. In every way she supported me, she also supported tons of other young women and men battling the same illnesses as her. I always joked she was an “en-sick-lopedia” because she had an answer to every question when it came to chronic illness. She touched so many lives.
-Carolanne


image1Dalia and I met by chance; connecting over shared illness but more importantly, our interests. Suddenly the dark road I was walking alone became much brighter; no matter how dark I felt things around me, her glow always surpassed it. More than our dreams, we were incredibly realistic people; we didn’t sugar coat our bad days and frustrations, we sat with each other in our pain, day or night, simply knowing we weren’t alone.

Dalia fought tirelessly for what she believed in regardless of what she was facing. Impossible was not in her vocabulary and she challenged herself daily to not only do better but be better .  Daily her body failed her but she never failed us. Even now, that still rings true. She chose to fight, to educate, to advocate, to find joy regardless of the pain and never ever give up. She choose to live, and my gosh did she ever. To sum her up is near impossible; she was a sister, daughter , godmother, friend, Tia, advocate, educator, artist… none of these, while all so very true, can capture her contagious laugh, her wit and blunt nature; her gentleness with her godchildren, how caring and supportive she was of others starting this difficult journey, how she’d scold me for not bugging her when I was struggling because as she’d say “we’re sisters, it doesn’t matter”, her deep admiration and love of her very best friend, her mother. Gastroparesis drastically affected her life and its quality . Tube feeds, visceral hypersensitivity, TPN, PICC lines and ports…it goes on and on. Each hurdle that came, Dalia faced. image2

I still cannot describe the immense loss and heart break her passing brought. I didn’t know if I could even do this and write about her. Above all else, she’d tell me to be brave and she’d be right there if I needed her. Everyday I carry her with me; her heart in my heart, my fight is now also her fight. Together we are stronger, we always were.
Ashley

 

If you haven’t already, there’s still time to sign up for our virtual race honoring the memory of this young woman. Go to http://www.moremilesraces.com to sign up today!

Exercise and Chronic Illness

There’s been some talk about exercise and chronic illness in the last few weeks. Before the fundraiser officially kicks off this Saturday, September 1st, our PR Director & Pact Blog Editor Samantha has some tips for exercising safely!


With the virtual run fundraiser coming up, I wanted to take some time to talk about exercise and chronic illness. I will always consider myself a runner; even on the days I’m unable to, due to whatever illness decides to flare that day. I remember my first run. It was over three years ago. I was still learning how to manage life with gastroparesis. (Plus, I’d never been a runner so there’s that) I had decided I wanted more, and I pushed myself a little more. I didn’t push hard, I went slow and steady. Slowly but surely I got myself moving; and my body responded positively. Don’t get me wrong. The recovery was painful as hell. I was in a lot of pain during, and after. There were many days I didn’t want to, and a lot of days I walked more than I ran. Did I give up? HELL NO. I knew that it wasn’t going to be easy, and I knew that I couldn’t get mad when I wasn’t able to do something as fast as a healthy person.

I’ve been running on and off for three years. While I’ll forever consider myself a runner, my health has certainly taken it from me more often than I’d like. There were many days I had to accept that I just couldn’t do it; my body just wasn’t able even though mentally it was all I wanted. The summer of 2016 I was at my best. I was at a ten minute mile, which given my health conditions, I was really happy with. I could eat a bit better. While this isn’t the case for everyone, I feel that my digestion truly benefits from being active, especially running. I was up at the crack of dawn at least five days a week to run. It was pure hell some days. Some days I hit snooze too many times. Some days, I said forget it! and slept in. It never got easier. I did my best to listen to my body. Running actually really helped me develop a good relationship with my body. I learned when to push, when to slow down, and when to stop. Admittedly, I’m still learning how to not push too hard, but hey, I’m human.

I post a lot about my running journey on my blog. I realize when I’m out and about, and manage to get myself on the trail, I’m having a decent day. But that’s not always the case. Just because I can do things some days, doesn’t mean everything is okay, or that I’m not sick anymore. It’s a struggle for me every time. I’ve had more than one person ask me “how do you do it?” and honestly, I don’t know. I just do.What I do know is that there is no feeling like finishing a run, especially when I didn’t think I could. I prove myself wrong every run that I don’t think I can finish. Just because you may not be a runner, or able to do consistent physical activity doesn’t mean you’re not capable of amazing things. We are all on different paths, and anyone who is fighting chronic illness is a WARRIOR.

So here’s my advice.

Start small. Don’t expect to do what you could prior to illness. If you want to run, start walking. Walking is one of the best forms of exercise, and a great place to start; even if you don’t go that far.

Let someone know what you’re doing. I NEVER go out for a run or walk without letting somewhere know when I’m leaving, where I’m going, and when I’m done. While it’s good for general safety, it’s also important for someone to know in case anything happens. If I pass out, and I haven’t checked in, my mom knows where I am to call for help if I can’t. This is also why I wear bright colors when I’m outdoors. I’m pretty sure someone would question the bright orange lump on the ground!

Have a plan. Don’t just jump in. Test your limits a bit first. Like I mentioned above, if you want to run, find a plan to help you get started. There are a lot of resources online, or you can start one yourself.

TRACK EVERYTHING. And I mean everything! How you felt, where you went, how far, what you ate, how you recovered, etc. I can tell you from experience there were so many days that I felt like I sucked, and nothing was changing, and I wasn’t getting better or stronger. I look back on where I was a few weeks ago, and instantly, I saw progress. Sometimes our heads can mess with us, and seeing it down on paper, (or an app) is a fantastic way to remind yourself how freaking amazing you are! And if you’re anything like me, you’ll bring those progress sheets to show your doctor with a huge grin on your face.

Find what fuel you need. Many runners, especially on long runs need fuel. With GP, and similar diseases, fueling your body is one of the most difficult things to do. If you’re not getting enough nutrition, expelling too much energy can be dangerous. If it’s hot out, and you’re likely to sweat a lot but can’t handle liquids, it may be best to call it a rest day. It’s a lot of trial and error for me to figure out what worked. I used to run first thing in the morning before I attempted any food or drink. I actually didn’t drink much, but would swish water around in my mouth and spit it back out. It was the only way I could get through it. I’ve also run while hooked up to hydration in a backpack! Now, I need to have something to eat prior to any exercise. I usually wait about 45 minutes after before starting. Adapting to what you need is key!

And the most important thing, find what you love. If you HATE to run, you don’t have to make yourself do it. Studies show that people are more likely to stick to an exercise routine when they love what they do. Like to dance? Try zumba! Like to lift? Pick things up and put them down! Like cardio? Run! Like to hike? Do it! Do what makes your heart feel good, because I can promise you, it will help take you further than you ever thought possible.

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Don’t forget, our Virtual 5K/10K race starts on 9/1! You have 16 whole days to complete your mileage! Do it where you feel most comfortable and safe. It’s not about how fast you get to the finish! It’s about doing what YOU can, and we’re really excited to have you join us. I’ll be doing the race on 9/15; let me know if you are too and we can cheer each other on! Sign up at http://www.moremilesraces.com

Social Media and Chronic Illness

You’ve probably reached this post on the Pact Blog through some form of social media. Writer Nancy talks about social media, and how it’s impacted the chronic illness community.


Social media is getting lots of bad press these days (for selling private information), but for those of us with chronic illnesses, social media is a lifeline to the outside world. Those of us who suffer from a chronic illness and/or chronic pain suffer from higher rates of depression than those without chronic illnesses. You may be isolated and not have a support system that understands your condition. Social media is a bridge that allows us to forge relationships with those who have similar conditions. Its also a great resource to find out information about digestive diseases and up-to-date information about the latest treatments.

Social media can also be a hazardous place; be aware of people who prey on vulnerable people, offering solutions or products. Understand the security of the media where you are sharing your posts. HIPPA privacy rules were established to ensure that your medical information is secured and that guidelines were set on who could review your health information. When you share your personal details on the social media, it is becomes available to be shared. Please note: advise given on social media should not replace guidance and advice from your gastroenterologist or primary care physician.

Below is a description of several social media apps and links to G-PACT content.

Facebook: There are hundreds of pages and groups available to those of us with digestive motility conditions, like Gastroparesis, Chronic Intestinal Pseudo Obstruction, or Colonic Inertia. Some are groups managed by G-PACT, but there are others managed by patient leaders throughout the digestive disease community. Generally, these Facebook groups are administrated by patients and not medical professionals. Be sure to review the specific Facebook page rules, pinned posts and announcements before you begin posting. Content posted in Facebook groups is normally for group view only; however, some groups may be public. For a list of Facebook groups sponsored by G-PACT, please visit G-PACT Communities.

Pinterest: This is a social media application where users can collect and share images with other users. The images can be organized into pinboards and shared amount the Pinterest community. Unlike Facebook, where you have friends, Pinterest has followers. To visit G-PACT Pinterest board, click on the following link https://www.pinterest.com/GPACTnonprofit/boards/

Twitter: This is a social media application where users post tweets to share information and communication. Tweets are 140 – 280 characters in length and may include links and GIFs. Tweets can be read by anyone unless a private message has been sent. Like Pinterest, Twitter has followers. Twitter hashtags allow the user to categorize and search for interests. Use #Gastroparesis  to locate tweets related to Gastroparesis. G-PACT is available on Twitter at https://twitter.com/4GPACT

Instagram: This social media application allows users to share photos and/or videos that are shared with other users. Like Twitter and Pinterest, the application has followers and individual users controls who can see their content. If you are on Instagram be sure to follow G-PACT and the GP Pieface Challenge.

Yahoo Groups: Before Facebook and other social media apps, there were Yahoo groups. Yahoo account members could search for browse or search for groups of interest and join. Visit G-PACT Yahoo group at https://groups.yahoo.com/neo/groups/gastroparesis/info

Inspire.com: This health and wellness community connects health care professionals and patients. Users can post questions or search for information. Inspire provides access to health topics provides the user access to post content or ask questions from the community. To join the Gastroparesis and CIP community on Inspire, visit https://www.inspire.com/groups/g-pact-gastroparesis-and-cip/

The Mighty: The Mighty is an online health community that connects people with similar health conditions and topics of interest. Users can follow topics and/or contributors as well as submit their personal story. The Mighty can be access through Facebook, Twitter, Instagram and Pinterest and users can receive email digests about topics of interest. Visit G-PACT Mighty content at https://themighty.com/author/4g-pact-organization/

YouTube: This social media site is designed to share video content. Users subscribe to online communities and post videos or video blogs (vlogs). You will need a Google account to access YouTube. G-PACT videos can be found at https://www.youtube.com/channel/UCqEs1YHLc8hlh-vCXa9bDwA

Resources:

https://simple.wikipedia.org/wiki/Twitter
https://www.gcflearnfree.org/pinterest/what-is-pinterest/1/
http://www.answers.com/Q/What_is_instagram

How does YouTube work?

Champion Patient: Lauren

We’re on our third Friday of Awareness month, can you believe it? Because it’s Friday, we’re featuring another Champion Patient story. This week, Lauren Reimer-Ethridge.  I (Samantha, Pact Blog Editor) have had the privilege to get to know over the last few weeks, and am excited for you all to get to know her as well! Read her piece on life and TPN below!


It seems to me that the biggest goal for everyone surrounding a TPN dependent individual is to get them off of the therapy. While this is an amazing goal for lots of people who experience the need for parenteral nutrition at some point in their life, this is not always the case. And I’m here to tell you that that’s okay.

lauren4I began my venture with IV nutrition support at 13 years old; not long after receiving my diagnosis of Chronic Intestinal Pseudo-Obstruction. At that point, my biggest goal with every doctor’s visit was to cut out one more day per week. At this time, this made total sense for my situation. I was still able to consume foods and maintain my weight and the days slowly dwindled down to 3 days per week.

For years I was able to maintain a somewhat healthy body on this regimen. But when my doctor asked if I’d like to see how I would do without it, things went downhill quickly.

If you had asked me then, I would have said I was doing amazing! I was off TPN! It’s all I’d ever wanted and it was my goal all along, right? I was doing great!

I wasn’t minding what the scale said. I wasn’t minding how my body felt. I wasn’t minding that there were days I could barely sit myself up out of bed. None of that mattered.

I made it about nine months without TPN before I found myself in the midst of the longest hospital stay of my entire life while on vacation in California. I was stuck inside of a La Jolla hospital for two full months. I had really gotten myself into rough shape. All because I was priding myself of being free from what I’d felt I needed to get away from for so many years. There, I was told I needed to get back on it. And this time, I was unable to consume food by mouth. My condition had worsened and I was unable to tolerate even the simplest of foods.lauren2

So I started all over; seven days of week of TPN. And you know what? That was five years ago, and I haven’t dwindled one single day off of my regimen.

And you know what else? That’s totally okay! Because I am the healthiest and happiest I have been since I was a child. TPN gives me the energy I need to thrive, and that’s exactly what I feel like I’m doing!

I have a wonderful team who makes my TPN to where it’s perfect for me and keeping me as healthy as possible. I am not surrounded by clinicians who try to pressure me to do things that could hinder my quality of life. They understand my disease state and can see that my body is doing exactly what it needs to do.

Of course there are severe risks with a therapy as invasive as IV nutrition, but this cannot discount the full life it has given me and many of my friends. It is possible to live a healthy and fulfilling life on TPN, and I am so thankful for that every single day.

 

laurenAbout our Champ: Lauren is a 25 year old vintage-loving, wife and puppy mama. She lives in Fayetteville, Arkansas and works as a patient advocate for an infusion pharmacy. She was diagnosed with Chronic Intestinal Pseudo-Obstruction (CIPO) at age 13, and has been on TPN (IV nutrition) since that diagnosis. She has a blog where she shares her experiences and tips she’s learned through the almost 13 years she’s been on TPN and the ways she copes with CIPO that you can visit at Pretty Couch Potato.

Do you know of a DTP Champion? Or do you think you are a champion? Nominate someone, or yourself to be a spotlight patient! Email Samantha at smiths@g-pact.org

Beyond My Chronic Conditions

Today is G-PACTs 17th Birthday! Over seventeen years, one idea has turned into something so much more. G-PACT founder, and president Carissa shares a piece of her story, and who she is beyond her chronic conditions. You can hear more about Carissa and her story on our birthday Facebook video.

Those who don’t know Carissa, she’s one of the hardest working people I have the privilege to know, and call my friend. She built this G-PACT team from scratch; an idea that started before all our social media groups were so available. She helped open a door for many of us, became a resource for information; gave many of us a safe place to vent, ask for advice, and meet others who have similar conditions. For 17 years, she has worked hard, on her own and with a dedicated team to continue awareness efforts. G-PACT has become so much more than just a non-profit, and I for one, am honored to work along with you. -Samantha, Public Relations Director, Newsletter editor. 


I hear them talking outside my hospital door. I strain to try to catch a little insight into what they are saying before they all come in and look at me as I lay in a vulnerable state in my hospital bed. I’ve been here for a week and they are still trying to figure out how to manage my  combination of challenging problems. Words and phrases such as “complex patient,” “five organ transplant recipient,” and “gastroparetic” are commonly used to describe me. I feel uncomfortable as my case is discussed among the team of medical professionals caring for me. Is this how I’m identified? I’m already uncomfortable about being in a medical setting again, relying on others for so much, and losing my privacy. But the terminology being used makes me feel like I am a case being studied in a medical lab and not like I am a 40 year old young lady with a life outside of the hospital.

Although my chronic illnesses have had a profound influence on who I am and the direction in which I have taken my life, other aspects of my natural, developed, and learned identity have had an even bigger influence on the decisions I’ve made as I’ve had to change my dreams over the course of 23 years since my diagnosis.

In college when meeting new people, I never mentioned my health problems until it became inevitable. I did not want my new friends or professors to immediately identify me as being ill before they truly knew me. Throughout my Child Life Internship in 1999, I knew that I was working alongside one of the most highly expectant supervisors in the internship program. I wanted the full experience. I opted to not reveal anything about my health challenges in advance. This proved to be of great value. As she was doing midterm evaluations she noted that I had a unique sense of compassion for parents and children in the hospital setting. At the conclusion of my internship when I finally revealed my medical history, her jaw dropped. She said “That’s where that compassion comes from!” If she had known about my health conditions from the beginning, it would have muddied her ability to accurately see me as someone able to excel in that environment regardless of my personal experience.

My natural determination has pushed me to never give up on my dreams. The installation of good values growing up has helped me make decisions on how to take my challenges and use them in a way to benefit others. My education has provided me with a variety of skills which have allowed me the flexibility to adjust to new situations when my circumstances change. My creativity, art, and humor have provided me with coping skills crucial to survive extraordinary challenges. My experiences growing up created an identity which has led to the path I’ve taken throughout my adult life.

While the core nature of my identity will not change, other aspects influencing how I am identified now has, and will continue, to change. Had I not developed any health challenges, how I am identified now would not look exactly same. If people look back on my life and try to define it, some definitions will look quite different depending on who is asked and at what stage in life they knew me, but there will be consistencies with each definition as well.

I am not not a case, a body part, a medical record number, or a disease. I am so much more than my chronic illnesses. When medical professionals recognize this and treat me as a person with a unique and special identity, and not only treat my unique and special case, they will always be successful in curing me, even if they can’t cure my conditions.

 

 

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