Join the Conversation on
21 people
0 stories
8 posts
  • Explore Our Newsletters
  • What's New in
    See full photo

    I'm a Warrior

    #chronicillnesswarrior #gastroparesisawareness #socialhealth #patientadvocate #TPN #rarediseaseawareness

    Yesterday I had several procedures done 3 hrs from home. This picture was taken on my way. I have Autonomic Dysfunction which causes many issues. I had to have my esophagus dilated again, an endoscopy to recheck a gi bleed, g tube for venting switched out, and colonoscopy due to polyp history. Thank goodness no more polyps this time. My throat is sore, but will get better. My g tube button was starting to become buried, according to the dr. My colon was significantly tortuous. Will be seeing a colorectal surgeon soon to discuss options. Make it a great day everyone!!


    I am a Gastroparesis Warrior

    It's getting close to the last few days of Gastroparesis Awareness. Had a telephone appt with my GI specialist. Time to schedule with a colorectal surgeon. Not saying that I need surgery, but I need some kind of help. It's all in the life of a Gastroparesis patient. 💚💪🏽
    #YourHealthMatters #gpwontsilenceme #oleyambassador #gastroparesisawareness

    See full photo

    Still in the Midst of Gastroparesis Awareness Month

    We are still in August. As such, I'm sharing a sad side to Gastroparesis. It's horrible when you have an actual grief and memorial group, but we do. We've lost 25 members this year. People can die from complications such as, but not limited too: line infections, tube infections, Sepsis, malnutrition or other difficulties that may arise such as liver failure from TPN.🥺💚🙏🏽


    Gastroparesis and Advocacy Awareness
    Check out this podcast, in which I was a guest on earlier Thursday August 11, 2022. #gastroparesisawareness #PatientAdvocacy #socialhealthnetwork #rarepatientvoice #TPN

    See full photo

    An Accomplishment

    Hi there. One of my illnesses is Gastroparesis. Well, it's Gastroparesis Awareness Month. I received the Gastroparesis Awareness Month proclamation from the mayor of my city on Tuesday afternoon. I was able to share my story and enlighten her on the disease as she'd never heard of it. I love bringing awareness. #gastroparesisawareness #chronicillnesswarrior #oleyambassador #TPN #patientadvocate


    Promising Research

    This is very good news. As someone with Gastroparesis and accompanying full body gi issues to include Dysphagia,
    this is promising.
    #gpwontsilenceme #chronicillnesswarrior #oleyambassador #gastroparesisawareness


    Hey Mighty wartiors! Hope you all are well. August is Gastroparesis Awareness Month. I made a video to show others part of my life. #gpwontsilenceme #gastroparesisawareness #chronicillnesswarrior #TPN #AutonomicDysfunction


    A Little About Me

    My name is Tonya. I am a chronic illness warrior and am passionate about advocacy. I love to share my story with anyone who will listen.
    I have been featured on my local news station and interviewer for our newspaper.
    I have numerous conditions such as Gastroparesis (g tube, port, gastric stimulator and on TPN) . I have Primary Immunodeficiency and infuse Hizentra. I have Ehlers Danlos, Autonomic Dysfunction and Mast Cell Activation Syndrome. I have Chronic EBV and had an Acquired Hemaphagocytosis due to being immunocompromised and catching Covid-19 earlier this year. I deal with migraines, hypotension and hypoglycemia as well.
    I'm currently writing for a migraine site and volunteer as an Oley Ambassador.
    My goal is to bring awareness of little known things about my conditions. I am always bringing new information to my doctors. They appreciate it.
    I hope to learn from you all and hopefully, you'll gain insights from me.

    #PatientAdvocacy #chronicillnesswarrior #gastroparesisawareness #GulfWarSyndrome