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    Community Voices

    I’m done… I have peace

    This is going to be long…. But I found my peace
    This is to my ex-GI:
    There’s probably no point in sending this. But I tried since Aug 16th to get the supplies I would need for the tube I got on the 20th. Every time I ate I threw up, the g tube was such a f*** up I could barely use it. MBP (cancer center) should have never been involved, you were my provider and should have had my best interest. It was your responsibility not their’s. I didn’t even know how to use the tube. I been using google and facebook to figure this out. Draining into a sink is anything but sanitary. You went to school for this, not me. I was without adequate nutrition for five weeks. My seizures got worse, I have multiple infections I am fighting because my body has like zero immunity (which was already limited) because again no nutrition! I called in tears Friday, begging for a way to get nutrition because how awful I felt and your d*** colleague’s nurse just wanted to argue it was up to MBP! But it wasn’t! Never was and never is! It was your responsibility! My seizures are worse and I can sleep for up to three days, no one can wake me. Then there are times I don’t sleep at all because my body is in pain and hungry. I haven’t felt hunger in years, but my body knows it now. I trusted you…. You failed me. And all you can say is good luck? Had I not switched teams, no telling what would have happened to me. I passed out a little over a week ago because I was so weak and now have a ligament injury because I fell… but all you say is good luck….

    Part of a email I sent this to my Reverends:
    I keep thinking why this happened to me? This surgery was supposed to save me but my dr failed me and never got me the equipment I needed to be able to use the tube that was going to give me more time…. It never got here. Time is running out. Maybe I was meant to teach others about advocacy and medical staff to realize that we aren’t a textbook scenario but people with complexities and not the same as the next person, to have compassion for the people not the money…. But I trusted my dr and now I’m d*ing…. I don’t want to be a lesson. I want to experience more things. I want to help Tink transition to rainbow bridge. Not ready to cease being twin. I don’t want my dad to lose me. I want to see my niece blossom as a teacher. Just not ready. But I can’t fight any longer… too tired, too much pain. I’m ready to be at peace, I’m ready to be done.
    Does all this make sense? I’m not sure. And not sure why I am writing y’all. But my end of life plan may be coming into actions. Please be there for my family if they need it. My dad will need a companion. He will need help with groceries. Maybe help him find resources so he doesn’t lose my condo. Joe will shut down, but he’ll need to talk. He is bitter towards religion because it hurt him. But he’ll come around. He’ll seem strong and pushing matter of fact, straight to business then he’ll get angry and explode. He’ll need someone after that. That is when he ready. Mom, she’ll fall apart. She won’t know how to go on. She lost Mike (stepdad to divorce) her life is already dark. She is already lost. She will question so much. Help guide her. Make sure she is safe, please.
    These are my people I am so scared to leave. I am their person. They are my people, imperfect, hurtful, but my heart. Don’t leave them behind please.
    Don’t leave me behind please. I am terrified. I don’t know how to be strong here. There’s a plan, but not ready to put it into action. It feels like giving up but honestly I can’t fight this hard every day. Pain management and being comfortable sounds nice…
    Be there with us, please.

    To my mom ( health agent ) and family:
    I know you don’t understand my choices. But I really do not want texas, trials, extra procedures outside of tube changes, no more new gi/motility specialists, I am done. But!
    I get it is hard. It’s different and not what you want for someone you love. You want them as whole as they can be… but sometimes quality is better.
    I have gained a lot of perspective in the last few days and I just know what and who is important to me, and that is where I want my energy going… not more medical.

    I Tagged my family but also made this public. Gastroparesis is a rare disease, but not as rare as the medical system would like you to think. We are often mistreated, thought to be drug seekers, attention getters, mentally unstable, ignorant of our health issues and needs, ignored, belittled… there isn’t much research on it either. And without researchers there will never be a cure. Most treatments just mask symptoms and did little to alleviate the disease or symptoms, sometimes (more often than not) causing their own problems which only make the person feel worse than not treating the disease at all… we need awareness, we need research, we need an empathetic medical community who is willing to help instead of demonizing the patients. Please share my journey.
    #Gastropresis #tubie #peg -J #covid #longcovid #starving #living2die #death #chooselife #bestill #justbe #malpractice #uu #family #support #qualitynotquantity #igotsupplies

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    Community Voices


    Hi, I’m new to #MightyTogether
    The mighty has published a handful of my articles. I live with a handful of chronic conditions that are really painful and debilitating. I’m looking for others who get it.
    Thanks for having me here. # EDS #BrainInjury #Gastroparesis

    4 people are talking about this
    Community Voices
    Community Voices

    I need a packing list

    Hi! I’m chronically ill and it’s looking like I’ll be in the hospital for the fourth time this year and I still don’t have a packing list, if y’all could help me out that’d be great! #Gastroparesis #tubie #SpoonieProblems

    3 people are talking about this
    Community Voices
    Community Voices

    Back when I was 18 i started to have symptoms of nausea and stomach discomfort and pain. I ended up going to the doctor and I went through a few tests. During the time I waited for tests and for the doctor to find out what was wrong I stopped eating.

    It felt like it was easier to not eat so I didn’t have to go through the discomfort and nausea. Sometimes vomiting.

    Next thing I knew my doctor sent me to an eating disorder clinic. I really just went along with it as I thought my doctor knew best. I mean I was in the right age range for an eating disorder, I was in an activity that could create eating disorders (figure skating) and I was already diagnosed with depression and anxiety since I was 10 years old. so why shouldn’t I trust the judgment of my doctor that it was an eating disorder.

    At the Clinic I remember looking through the application and I just couldn’t think that any of the questions applied to me. I ended up not going for any of the programs. Thankfully my symptoms went into remission around 19 years old.

    By 2021 Summer the symptoms started to get worse again. And I went back to the doctor. Throughout the fall and winter I went through doctors appointments for many things including all symptoms related to my stomach.

    By the spring, I was back at the eating disorder clinic to see if there was any programs I would join. I decided once again to back out and go to a dietitian.

    Summer of 2022 I worked with the dietitian and I was put on a trial gastroparesis diet. Turns out it was helping me. Thankfully the dietitian pushed my doctor for a stomach emptying test to rule out gastroparesis.

    Finally in September 2022, at 22 years old I found out I had gastroparesis and not an eating disorder. I’ve been so thankful that the dietitian had helped me.

    It’s been a lot to process that I was right about something physically was wrong and it wasn’t an eating disorder all along.

    Community Voices
    Community Voices
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    Community Voices

    How do you bring yourself to dill out an end of life packet?

    I got mine in the mail yesterday just in case I turn critical before I can get to an out of state hospital with a specialist…. I got COVID in May and developed QT Long Syndrome so all psych meds stopped, except Elavil. June I had a stroke that left me weak on one side, not able to write or speak properly, or even more around well. Few weeks later I had a Dystonia episode that almost killed me. Elavil was stopped. My Gastroparesis was continually getting worse since COVID and because my heart meds are not option at this point. I now I have a PEG tube but still pleasure eat some. In two weeks I will be getting a PEG-J to completely by pass my stomach. I am in the hospital more than I am home so it feels like it. All I do is sleep. Life is hard and a long life just isn’t the cards anymore. My end of life packet came in the mail yesterday. Five Wishes. This is my PARENTS know my final wishes and planning a memorial service. It seems so backwards. I am only 33…. How did I reach this point? What did I do or not do? How in the world can I fix this when my state won’t even help me?! No idea how long I have to wait for Houston but my body is giving up and I am afraid I won’t make it to that appt. But I cannot bring myself to fill out this packet. Feels like giving up but my parents need to know these things….. #Gastroparesis #FeedingTube #CriticalCare #scared #how #why #doesitgetbetter #endoflife #longcovid #Stroke #LongQTsyndrome #HeartHealth #MajorDepression #Schizophrenia #Schizophrenic #Anxiety #PTSD #MedicalPtsd

    Community Voices

    Sprint PNS questions

    Hi all, I was wondering if any has had a Sprint PNS? If so, how did you do with it? My new Dr. gave me 3 options, 1) Sprint PNS, 2) LDN, 3) more blocks. I have had CRPS 1 for over 25 years. I just feel the LDN is a bandaid and I have done many blocks and it always comes back pretty strong after a few weeks. Reading about the Sprint PNS it sounds like even though it is a 60 day treatment, after they take it out I can stay pain free or have a better quality of life. I just feel that would be my better option. So just seeing if anyone has any experience with the Sprint PNS? Thanks for any input!
    #eds#ComplexRegionalPainSyndrome #Gastroparesis #multipleTBI ’s

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