#digestivetractparalysis

[raseforcrps]

#Repost @chronically.christina with @get_repost ・・・ #chronicillness #invisibleillness #spoonie #fibromyalgia #AMPSawareness #amplifiedmusculoskeletalpainsyndrome #chronicpain #painwarrior #insomnia #chronicpainwarrior #childhoodpain #gastroparesis #digestivetractparalysis #morethan4 #nationalpriority https://www.instagram.com/p/BuiDosPH0JD/?utm_source=ig_tumblr_share&igshid=9oglhlbjvxrp

[lgbtadvocate]

After 4 months on hospice this is what I look like. Because I have had no nutrition, no hydration that I am fully able to absorb. But still I am alive and I don’t know why. And I don’t feel like it’s a miracle, but rather a curse. To be living like this with no hope of recovery and no clear path that to what comes next. This is dying, and as my mom says “it’s not for wimps” #digestivetractparalysis #gastroparesis #intestinalfailure #endoflife #dying #hospice #ehlersdanlossyndrome — view on Instagram https://ift.tt/2tU8Zbl

[sagejoya]

The cost to make a decision is TIME. Stay in pain or… Take action that pushes you outside your comfort zone. Sometimes the action is as simple as sending a DM or clicking the link in a bio. Stop 🛑 making everything complicated. That would represent a decision, action, progress and a solid step toward choosing you instead of pain. #chooseyou #chooseyourself #chooseyourselffirst #chooseyourselfeveryday #choiceisyours #choiceisyours💯 #choiceisfreedom #guthelp #listentoyourbody #listentoyourheart #listentoyoursoul #listentoyourself #listentoyourgut #listentoyourintuition #listentoyourinnervoice #listentoyourinnerself #digestiveproblems #digestivewellness #digestivehealing #digestivedisorders #digestivetractparalysis #digestivetract #sagejoya #exitcleanse #directhydration #mindgutconnection #healyourguthealyourlife https://www.instagram.com/p/CaabnUQpFYv/?utm_medium=tumblr

[asdfjklkaitlyn]

[raseforcrps]

#Repost @chronically.christina with @get_repost ・・・ I had jury duty today and I am DEADDDD it lasted from 9AM to 3PM!!! I brought my coloring book and probably looked like a 5 year old but that’s alright. It kept me entertained as I waited for nothing to happen😂 #chronicillness #invisibleillness #spoonie #fibromyalgia #AMPSawareness #amplifiedmusculoskeletalpainsyndrome #chronicpain #painwarrior #insomnia #chronicpainwarrior #childhoodpain #gastroparesis #digestivetractparalysis #morethan4 #nationalpriority https://www.instagram.com/p/BudR_I2nwnc/?utm_source=ig_tumblr_share&igshid=bhkg97inh5lc

[lgbtadvocate]

2019: the year I die. #hospice #digestivetractparalysis #gastroparesis #ehlersdanlossyndrome #endoflife #endoflifecare #happynewyear #newyearseve #nye2019 — view on Instagram http://bit.ly/2VtJyds

[lgbtadvocate]

Hello friends and family, it is with deep regret and a heavy heart that I write these words. This may be the hardest thing I have written in my entire life. As many of you know I have struggled for the past 5 years with complications of Ehlers Danlos syndrome, a genetic connective tissue disorder. In June, I was hospitalized when my entire digestive system shut down and I am now fed with intravenous nutrition (TPN). I had hoped that this would give me quality of life and help me accomplish more things and enjoy my time. However, an inherent risk of TPN is infection. I have been hospitalized with a blood stream infection 4 times in the last five months. During my most recent hospitalization, I decided with the help of my family and close friends that my body could not go on like this. I have chosen to stop treatment for these infections and go on hospice. My body simply cannot continue like this, nor do I really have any quality of life. I am not living I am simply existing. I want to make the most of the time I have left by spending it with all of you. The timing of when things will start happening is very unclear but it will be fairly soon. Don’t hesitate to contact me to see if we can find a way to see each other one more time. I want you to know that this was A very difficult decision for me to make and that I love all of you very much. Thank you for being there, giving me support, lending a hand, and showing me kindness. I would have not made it this far without all of you. I love you so so so much. I hope we all meet again someday.#digestivetractparalysis #hospice #gastroparesis #ehlersdanlossyndrome #endoflife #death — view on Instagram https://ift.tt/2PRhcKR

[lgbtadvocate]

Me. 4 years old. Sound of Music. My first production. I was sad because I didn’t get the part of Gretel. Right after my parents divorce. Before my mom got sick. Before she died. Before my adoption, transition, and before I went to college. Before I got sick. Now endless nights in the hospital and hospice,planning my funeral, and now death is an everyday thing. I wish I could go back. I wish I had more time. I wish I told more people I loved them, cared about them, and stopped having petty fights about things that didn’t matter. If you’re seeing this now I love you and I always will, I promise. #hospice #digestivetractparalysis #gastroparesis #ehlersdanlossyndrome #palliativecare #death #dying #endoflife — view on Instagram http://bit.ly/2BEg9Eb

[lgbtadvocate]

Doctors have decided to take me off tpn and move me to inpatient hospice as of 8pm tonight. After my most recent infection I sustained organ damage and my symptoms gradually became worse and I went to the hospital where they decided hospice was the best option. The hospice is at 1800 Lombard and open 24/7 #hospice #digestivetractparalysis #gastroparesis #ehlersdanlossyndrome #sepsis #endoflife — view on Instagram https://ift.tt/2SEce0Z

[lgbtadvocate]

Pic for attn Because my bff is hotter than. In the past few days whenever I have my jtube (doesn’t matter what it is) I start getting nauseous and dry heaving. I am not on any nutrition. I have chosen the route of hospice and I haven’t had anything except for ice chips and sips of lemonade since December 10. For the first month and a half I had iv glucose but not anymore. I weigh 75 lbs. I don’t understand why my jtube meds are suddenly bothering me. I don’t even want my meds anymore because it’s so miserable. The only thing that’s changed between then and now is I had a mineral enema which it turns out I didn’t need. I take iv Benadryl, Dilaudid, and Ativan and gabapentin, baclofen, senna, and bentyl through my j. Have any of you had this before? Is it a progression? But I’ve been on this regimen for months! Also my dr says I should have a bowel movement every 6 days but If those things are the only things I’m putting in how does it make any sense? #Dying #tpn #tpndependent #cipo #gastroparesis #intestinalfailure #digestivetractparalysis #endoflife — view on Instagram http://bit.ly/2T4WhEO

[lgbtadvocate]

Hi there again. I was hospitalized again for two weeks due to a fungal infection. It has decimated me. Emotionally and physically. My body is dysfunctional in every way, it’s failing me. Emotionally I’m a wreck. I changed anti depressants and I think the dose is too low. Everything sucks right now. I just don’t want to live like this anymore. The pain, the infections, the nausea, the medications. I don’t want any of it. I’m supposed to be receiving home based palliative care but I haven’t been able to start it yet. I’m really sad. Just sad. Please bare with me as I try to figure out what I want and need at this time. I update a lot in my stories and you can see it there. I also usually answer DMs. #tubie #intestinalfailure #depression #spoonie #endoflife #palliativecare #hospice #mentalhealth #gastroparesis #digestivetractparalysis — view on Instagram https://ift.tt/2Rk9m8G

[lgbtadvocate]

My mom and I ventured out tonight to see Lucinda Williams. Lucinda was a favorite of my late biological mother and seeing her has always been something on my list. I’m really glad we got to do this. #bucketlist #lucindawilliams #digestivetractparalysis — view on Instagram https://ift.tt/2RH4KK9

[sagejoya]

It cost $0.00 to make a decision. Stay in pain or… Take action that pushes you outside your comfort zone. Sometimes the action is as simple as sending a DM or clicking the link in a bio. Stop 🛑 making everything complicated. That would represent a decision, action, progress and a solid step toward choosing you instead of pain. #chooseyou #chooseyourself #chooseyourselffirst #chooseyourselfeveryday #choiceisyours #choiceisyours💯 #choiceisfreedom #guthelp #listentoyourbody #listentoyourheart #listentoyoursoul #listentoyourself #listentoyourgut #listentoyourintuition #listentoyourinnervoice #listentoyourinnerself #digestiveproblems #digestivewellness #digestivehealing #digestivedisorders #digestivetractparalysis #digestivetract #sagejoya #exitcleanse #directhydration #mindgutconnection #healyourguthealyourlife https://www.instagram.com/p/CaaaWRtJaC0/?utm_medium=tumblr

[lgbtadvocate]

Day 4 of #digestivetractparalysis month. This is my Hickman. It is a central line that goes to my heart to give me medications and TPN since I cannot eat, drink, or do tube feeds. This line is saving my life but also putting me at risk. I am currently recovering from a bout with sepsis from my line, and complications like clots anf breakage can also occur. However I am thankful for my line and that it gives me the independence to travel and care for myself. #gastroparesis may be a dick but it helps me to be in control. Also yes my top surgery scar is keloided. That's what you get with EDS. Ask me anything about DTP below! #chronicillness #spoonie #ehlersdanlossyndrome #dysautonomia #ehlersdanlos #digestivetractfailure #intestinalfailure #intestinaldysmotility #cidp #trans #femaletorobot — view on Instagram https://ift.tt/2LZzNSq

[lgbtadvocate]

Happy #digestivetractparalysis month. This is my new gtube for draining and venting. It was done via egd outpatient and it really hurts. I was given 1 dose of dilaudid and it did nothing. I need this tube to keep buildup of air and bile out of me. My digestive tract doesnt move so this is the only way to get it out. I hope that this shows some of the reality of what it's like to live with such an awful life changing disease. Please share so we can find more effective treatments, or even a cure. # #gastroparesis #spoonie #ehlersdanlossyndrome #digestivetractfailure #intestinalfailure #intestinaldysmotility — view on Instagram https://ift.tt/2vAcNQi

[lgbtadvocate]

Guess where I am? That's right! I came to DC for the #ncil2018 conference and ended up in the hospital with #sepsis so that's just my life. I had to leave roxie with friends, my stuff at the hotel, and I've now been here for 3 days. I feel relatively ok except no TPN because they pulled my line and crazy nausea/vomiting from the antibiotics. I also have been having a hard time getting my night meds. I guess because I take alot of sleep medication they dont like that but as a result I slept 2 hours last night. I'm hoping the resident comes soon so I can ask him about it. I'm also really bummed because I was supposed to see @panicatthedisco on Friday but there is no way that is happening now, plus I'm crossing my fingers my tethered cord surgery doesn't have to be delayed. This just sucks alot. I wish I could say that this is the last time or that I dont have to live in fear of trips because of stuff like this but I'd be lying. I just am so tired and ready for either a break or for something to change. #chronicillness #gastroparesis #spoonie #ehlersdanlossyndrome #dysautonomia #ehlersdanlos #cidp #digestivetractparalysis #intestinaldysmotility #intestinalfailure #sepsissucks #tpn #tpndependent — view on Instagram https://ift.tt/2OlaqJ4