A chance to survive and rebuild

Hello everyone! I’m sure most of you know me, but for those who don’t, I’m Amy. I’m 26, I love to draw and play my violin, I have a beautiful daughter, and listen to too many podcasts. When I’m healthy, I like to play video games and stream on Twitch. I enjoy nothing more than spending time with those I care for. I’m also medically disabled - and have been living with Ehlers Danlos Syndrome, POTS, and a few other not-super-fun conditions. However, I’ve been making the most out of what my body can do and thankful for each good day.

Unfortunately, good days have been hard to come by lately, after getting hit out of nowhere and very suddenly with multiple debilitating health problems. Due to how drastically my situation has changed in so little time, I’m finally reaching out for help, as ashamed as I am to do so.

Back in October 2021, I got very suddenly sick. I continued to develop scarier and scarier symptoms. I went from believing I had simple food poisoning, to vomiting blood within days. I had back to back hospitalizations, and also lost my housing around this time. I was lucky enough that a close friend came to help me get my things into storage, and also offered to fly me out to stay with them temporarily so I had a safe place to recover… both of us thinking that would happen relatively quickly.

After another hospitalization here right after getting off the plane, I finally had major surgery in January where I had my appendix removed as well as over a foot of my colon, and a feeding tube placed through an opening in my stomach.

Unfortunately, things took an even worse turn after the surgery when I became unable to tolerate anything by mouth or by the feeding tube they put in, and had complications with the tube itself. No amount of nausea medication would begin to help, not even paralyzing my stomach. This resulted in nearly constant hospitalization from then to where we are now at the end of March.

Now: I have been hospitalized for the last 24 days after losing so much weight that I reached an unbelievably terrifying BMI of 10 - yes, ten. The doctors in charge of my care have put it very simply - that I am dying, and if nothing changes, I will not live to see the next 6 months. We still have no answers as to what started this chain reaction, we have only been treating all of the symptoms and new diagnoses that are happening as a reaction.

Skipping over a lot of the finer details, during these weeks I’ve been hospitalized, I’ve had the defective feeding tube removed, and gained one serious complication from it and the lack of nutrition called SMA syndrome, or SMAS. This is a rare but life threatening illness caused solely by my malnourishment, and is separate from my existing problems, including the aftermath of the feeding tube complications.

However, it’s also nearly the nail in the coffin. All therapies to treat SMAS have failed in my case, and believe me, I’ve been through a lot of trial and error. I’m currently getting my nutrition through TPN which is a type of IV feeding that is done through a central line (a more permanent, long IV fed to your chest). Simply being on TPN has its own risks and is considered a last resort. Most notably, the risk of infection with the central line is great, and I am so sick that my body would be unable to fight it off.

I have watched my body fail me in so many ways but I have been fighting so hard. Each time I have said that “I can’t take anything more” and something else has happened, I’ve learned how to keep on going. On days I can’t keep going for me, I do it for my friends who are my family, and most importantly my daughter. And I’m not ready to be done fighting yet.

The hospital I am currently at has made the final decision that I am beyond their ability to treat - there is nothing else for them to do. I need a major surgery to fix the SMAS since all other treatment has failed, but no surgeon here feels comfortable operating on me, fearing I am too sick to make it through surgery or to recover from it. As of today, the next plan of care is to stop the TPN (my only form of nutrition), and send me to a hospice facility to have my pain managed until I die from this. The words of the doctors being that simply my illness may just be too advanced to treat.

But I’m not ready to give up here.

I want to make a plan with the doctors to help me safely fly back to Michigan, which we’ve been discussing. Both so that I can have a support system close by that I absolutely need at a time like this, and also to get a second opinion at U of M (who the hospital I’m currently at have been in contact with) and hope that they may be able to help save my life. And at the very least, be near to those closest to me in the event that there isn’t, so that I may pass as comfortably as possible surrounded with love.

I can’t imagine giving up here - not without even trying to get another opinion. All it takes is one doctor who could potentially have an idea that may be the difference between life and death, or one surgeon willing to take the chance to operate to see if it saves me, rather than signing my death certificate by sending me to hospice without even trying.

Since I have been unable to work while going through this harrowing experience (and getting on disability is a very, very long and complicated mess), I have had no form of income whatsoever. During this process as well, becoming homeless, I will be truly having to rebuild from scratch if and when I do make a recovery. I can’t express in words how badly I’m dreaming of having a space to call my own again and feel like I can finally breathe and relax after so many months of medical, financial, and housing instability.

My more immediate needs are to afford the plane ticket back to Michigan (which one-way will be roughly $400-$500) after a transport plan has been established here very soon, any costs associated with filing a formal will, and paying my two essential bills I have left - my phone, and my storage unit. My account is currently -$60 as a starting point due to 2 missed payments.

If I am able to recover from this, it is going to be a long road, even long after I am discharged. I’d love to think that as soon as I’m out of the hospital I can snap right back to working and supporting myself, but simply… this will take a lot of time, especially if more major open surgery is involved.

This fundraiser will be used to hopefully help me be able to take some of the stress out of that recovery, be able to comfortably maintain my very basic expenses, and hopefully towards helping me get a roof over my head again as well, as I’m sure I will continue to need home health care again after this and I just do not have anyone that is able to take me in and let me stay with them, understandably. All the while, I will be following up on the disability application and process, and praying that it goes through so I have some income to rely on.

In the event that I lose this fight, the funds received in this GoFundMe will be used by my power of attorney to pay for my funeral arrangements, and whatever remains will be put into an account for my daughter to access when she is older.

Whether you donate, share this fundraiser, or even just take the time to listen to a small chunk of my story - I appreciate you and your time. You never know how fragile life truly is. I have so much left of my story to keep writing, and I sincerely hope that by posting this fundraiser, it may give me a better chance at truly taking my life back - or at least make me more comfortable and at peace before it ends.

Please hug your friends and family, always say “I love you,” don’t wait until it’s too late to take control of your life. Wishing you all the most health, and that you never take it for granted.

This story is long enough even in its condensed form, so if you have any questions, please feel free to ask me. If I think of anything important I’ve missed while telling my story here, I will post updates as needed.

If you feel more comfortable donating through Cash App or Venmo (both usernames are amhoney95), PayPal, or Facebook pay - I will happily manually update any donations I receive in those platforms as well.

Thank you. ❤️

-Amy Honey

What funds will be going towards:

-Flight back to Michigan ASAP

-Medications/medical supplies not covered by insurance

-Last remaining essential bills

-General expenses (medical supplies, sanitary/personal care products, gas to/from appointments, reestablishing car insurance when the time comes, etc)

-Saving funds to secure housing after a possible recovery (security deposit and rent)

-Any legal costs pertaining to filing an official will

Again in the event of my death, all funds will be redirected to funeral costs and anything remaining to be saved in an account for my daughter.