Kingdom of Spoons

Hello, my name is Emet and welcome to my blog. I'm non binary ftm, Jewish, chronically ill, rabbinical student. This is mostly a spoonie blog, with some social justice and other stuff thrown in. Dont forget to check out my YouTube: http://youtube.com/user/emtau1

[lgbtadvocate]

Missing you more than ever today. Life feels very unfair sometimes. 😩💔 — view on Instagram https://ift.tt/3bp4fye

[lgbtadvocate]

11 months and you are still so very deeply missed. ❤️ — view on Instagram https://ift.tt/2v6HMGU

[lgbtadvocate]

8 months. What a strange thing to think about, starting 2020 soon and I can’t help but think about how unfair it is that Emet will not experience the new year with us all. I guess some people can make their impact in a much shorter time than the rest. — view on Instagram https://ift.tt/2XNkcsv

[lgbtadvocate]

Without fail my brother always woke up with very thick deep lines on his face. I’d always point them out to him when we were on our way to school. He really hated when I did that, but for whatever reason I thought it was funny. The little things make me feel closer to my brother in his absence. I hope you guys have your little things too.... #6months 🦋 — view on Instagram https://ift.tt/2mG5fdn

[lgbtadvocate]

It’s Rachel checking in.... Today is 3 months since. Emet asked me to be on top of responding to his friends (which I haven’t been great at) and posting and what not... It has been hard because I’m not so sure what to post or what to say other than I am still very heartbroken as I know you all are too. I also just needed a break, and had to grieve. I’m checking in today because I know Emet would have wanted me to, and I just wanted to remind you all how much love he had for you all. I hope everyone is hanging in there. This is not easy, but my brother was the kind of person who wanted us to celebrate his life rather than be sad... so I’m doing my best, I think it’s safe to say we all are. Sending all my love. ❤️ — view on Instagram https://ift.tt/2RxI4NC

[lgbtadvocate]

I have posted every single story that emet has ever made into his highlights so you guys can watch them whenever. ❤️ I hope that everyone is holding up ok. Emet is now our guardian angel 👼 he is looking out for us, just as he did before. — view on Instagram https://ift.tt/2K0diN4

[lgbtadvocate]

It is Rachel again, emets sister, we just said goodbye to emet. He passed away at 7:39pm (today).... we are heartbroken and devastated. Information to follow on funeral arrangements and shiva. — view on Instagram https://ift.tt/2uvgt58

[lgbtadvocate]

Hi all. This is Rachel, emets sister. I just wanted to update everyone that he is essentially comatose- and will not be responding to messages or phone calls any longer. If you wanted to say goodbye now would be a good time to come on over to keystone hospice. Emet has appreciated everyone’s love so much. He is so very lucky to have all of you. ❤️ I will be taking control of his social media and will do my best to get back to everyone as fast as I can. ❤️ thank you all for the amazing support thus far. Emets so very lucky. — view on Instagram https://ift.tt/2OvNpnj

[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

[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]

All my life I thought I just didn’t like showers. But now I think it’s an autistic spectrum sensory thing. #autistic #actuallyautistic #asan #spd — view on Instagram http://bit.ly/2Fmvxsm

[lgbtadvocate]

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

[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]

I’m death making a comeback — view on Instagram https://ift.tt/2PsIXnY

[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]

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