Answers for Indy

28/06/2025

The following post is an educational post, if you’re uncomfortable with seeing blood, life support devices or people that are more dead than alive, this post is not for you and I highly recommend scrolling while you have the opportunity!

So I recently rediscovered some “lost media” from my medical journey. When I say lost media, I mean that it’s an image taken during my journey that I thought was lost to time, but have rediscovered many years later. So let’s talk about it, and as mentioned in the slides, viewer discretion is advised, read and view at your own risk.

So in this image, you see me laying on a medical table hooked up to all different machines while doctors work on me. You may have seen other images from the same day. Now when I was on life support, I was on lots of machines to save my life. Apheresis, Dialysis, many monitors, and most importantly VA-ECMO which is the topic of this post.

Now what is ECMO? ECMO, or extracorporeal membrane oxygenation is a life support system that is used on extremely critical patients who are in heart or lung failure when conventional treatments do not work. It’s main purpose is to function ones circulatory organs so the body has time to rest and recover instead of using all of its energy to keep the patient alive. It acts as an artificial Heart and Lung. There’s also two different type of ECMO (which I found out while researching for this post) and they are

• Venoarterial (VA) ECMO: Used when both heart and lung function are compromised. Blood is drained from a vein and returned to an artery.
• Venovenous (VV) ECMO: Used when only lung function is compromised. Blood is drained from and returned to the venous system.

Now these machines are very advanced, and in the photo you can see this. Those tubes by my legs are clear. They are not that red color. That red color is the Blood that VA-ECMO was using to keep me alive. When I was placed on VA-ECMO, it was a last resort to save me. It was still considered very experimental at the time and not much was known about it or about the complications it would have on patients who had recovered, however I’m so thankful that this technology exists because without it I wouldn’t be here today! That’s it for today’s educational lesson and if you enjoyed this post or want to follow my journey, please like this page!

Thank you for reading!

23/06/2025

So I haven’t updated in a hot sec and honestly it’s because I’ve been doing really amazing! Therapy has been good and I’m making small improvements. As far as PT goes, I had to make the decision to stop it. My Avascular Necrosis in my left knee is at stage four, and it’s only a matter of time before it collapses completely and I don’t want to speed up that process by overworking the joint. I’ve also been have a lot of hip issues lately which is unexplained because according to my last set of scans, the avascular necrosis in my hips vanished mysteriously however I’m not buying it since I can still feel the bone popping in and out of place. Another thing is that I finished genetic testing finally and I should have results back in a few weeks. This is the closest I’ve come to answers since 2017, and I really hope this is the answer I’ve needed for so long! If only we could get my bio dad’s results from Baylor since his results hinted that all my genetic issues were inherited solely from him, but that’s gonna be impossible so we’ve given up on it. Lastly, I had a scare yesterday with my epilepsy. I don’t remember much, so I’m gonna tell you what I was told by Blu and by my mom.

I was sitting in my chair, and started zoning out. My mom was across from me and started yelling my name. I didn’t respond immediately and said I wanted to zone out because it felt good. So she asked me to go into Blu’s room and lay down. When I went and laid down, I kept pointing to a “Floating Orb” and couldn’t remember anything I did the day prior (which was odd because it was a house party for my work that I had been looking forward to) and we’re chalking it up to my epilepsy. However the good news is that Blu was able to pull me out of it by continuing to talk to me, ask me questions and do whatever they could to keep me from going unconscious. So yeah, I’m definitely gonna let neurology know that happened. But besides that I’ve been good, and I’m gearing up for more work events throughout the summer! I love you guys, thank you for reading!!

13/05/2025

Since I can’t verbally talk for the next 15 minutes, I figured I’d give you all a life/medical update,

Now you may be wondering why I can’t verbally speak and it’s because I just numbed my mouth because my broken teeth decided to get f**ky with me so that’s fun. I also got the results of my labs that I had taken not too long ago. My cholesterol levels are pretty high, I’m also Pre-Diabetic which again is fun. My doctor prescribed Wegovy for me since it’s easier to obtain than Ozempic and they both do the same thing and if the Wegovy does not work, I will probably be put on insulin (which I’m hoping I can at least get an Omnipod type of device for so I don’t have to lug insulin with me wherever I go). I also found out my left knee is at stage four of AVN meaning I need to find a surgeon ASAP. Otherwise life has been good! My partner Blu moved in a few weekends ago and last weekend we celebrated their 22nd birthday and Blu has helped me tremendously, and I’m so grateful for them along with my family. Other than that, not much is going on. I love you guys, thanks for reading!

18/04/2025

Let me start this off by saying I’m a f*cking medical oddity… I mean we already knew this, but let’s just add to the list of weird s**t.

I got my X-ray report back. I had to get regular scans to check the Avascular Necrosis in my hips and left knee. Now to put that in dumb b***h terms, basically my left knee and both hip bones are dying. There is absolutely nothing that could be done to fix it…

BUT THAT DOES NOT APPLY TO ME JUST LIKE ALL MEDICAL THINGS!

My left knee is still f*cked up. No idea what stage it’s currently at but it’s not doing good. As for my hips, both of them are perfectly f*cking fine and normal.

So we’re clear, my hips were dying and rotting away at a rapid pace and have been since 2018, but my yearly X-rays showed that they were completely normal and healthy…

All I wanna know is how the hell this even happened?! How?!

10/04/2025

Long time no see but I’m back with an update!

First of all I’ve been doing alright. Not good, but definitely not bad either. I’ve been getting out of the house a lot lately which is rewarding but also has its issues. I messed up my upper arm on the playground, I think I just strained it a lot. My feet have been killing me from all the walking I’ve been doing too but if I don’t do it nothing will get better. Speaking of which, I’m planning to go back to PT soon to work on my balance and hopefully build up some muscle to make walking easier. As far as my physical health, I went to the doctor earlier this week. I’ve been gaining weight steadily, but that also comes with issues because once I gain, it’s impossible to lose. I have looked into bariatric surgery but because of my CVS, it’s not a great idea so that isn’t an option. My doctor also wants a bunch of labs done to check my levels, especially my potassium and I have those done on Monday (which I’m dreading) and as long as I don’t pass out while they’re drawing them I’ll be good. I’m also getting updated X-rays on my hips and knees because my AVN has been causing a lot of pain and now if I stand for too long my left knee just locks and won’t unlock which affects my ability to walk properly. Other than that, I’ve just been enjoying life. I’m trying to enjoy it as much as possible. I’m going to a concert in 39 days in Philly with a friend and then in August I’m going back to see MCR again in Philly so I’m excited for that, especially since I have long distance music family flying into Philly for it! Then in July I’m going to Wildwood for vacation and in September I’m going to my first ever music festival so I gotta enjoy everything I can while my health allows me to. That’s about it really. Love you guys, as always thank you for reading!

27/03/2025

13/03/2025

Sorry for a lack of an update, I’ve had a lot on my plate lately. Between losing Onyx, starting a new volunteer position, and going to therapy it’s been hard to find a moment to sit down and align my thoughts and feelings into a post. For one, I’ve been sick for about a week or two now. I tested negative for COVID so it’s gotta be a really nasty cold and it was up until a few nights ago when I developed a bad cough. Today I started nebulizer treatments which have helped tremendously. I also saw my case manager from my insurance company which was good too. Unlike most people from insurance, she’s not useless and she’s actually really nice so it was great seeing her again. Not much has changed other than that, it’s just trying to kick this cold once and for all.

Love you guys, thank you for reading!

05/03/2025

Happy CVS awareness day! For those who are new here, my name is Indy (or Indigo) and I’ve had Cyclic Vomiting Syndrome or CVS for 11 years now. Now for those who are unaware, Cyclic Vomiting Syndrome is a condition that is characterized by endless, unpredictable cycles of Vomiting, Nausea, Migraines that are triggered by various things. Everyone is different, but some of my main triggers are weather changes, lack of sleep and Anxiety/Excitement.

CVS is not a beautiful condition, instead an ugly, evil one. One that took my childhood away, one that has taken everything away from me on a whim, leaving me with the choice to stay broken down or to build myself back down. It almost took my life in 2017, just four years after my diagnosis and has destroyed everything. It took away my ability to eat, move, breathe, walk, talk, stay hydrated, maintain my body temperature, it took away my smile because it destroyed my teeth, it took away a huge amount of my mobility and most of these are all things that I have regained and lost on life support, which was due to complications of CVS. When I was dying, that light behind my closed eyes burned, it lit my path to survivorship and leads us to today! If there’s anything anyone should know about my journey is I didn’t ask for this life, this life asked for me and I am going tp use this life to save others; Bring awareness. I’m gonna own it and my hope and why i celebrate is so one day nobody will go through this again! We are rare like diamonds, so let it shine a spotlight on us today! Happy CVS Day!

28/02/2025

Happy Rare Disease Day! I am honored to share my part of the Gallery Of Warriors campaign for 2025! Enjoy!!

17/02/2025

I genuinely hate that I’m making this fu***ng post, I really hate it so goddamn bad and wish it was nothing more than a hallucination, but it isn’t so here we go…

A few days ago, I got some really fu***ng horrible news. Onyx is gone… she’s not coming back.

A few months ago, more specifically at the end of October she was cleared off her training. It was becoming very obvious that she unfortunately did not have the skills to do tasks. She was very smart but her loveable nature was what made us have to wash her. She was too friendly, and wanted to love everyone and everything. She went to live on a nearby farm at the end of October, and unfortunately at an unknown point to us she got loose, and she most likely saw a car and wanted to say hello in her typical fashion, and that is what took her from us….

I only just found out this information in the last few days, and I’ve been awful. I’m at a such a low, and I’ve either been extremely medicated and numb, or ready for revenge, and let it be known that if I was there, we would have traded places. I don’t even know how to end this post, but here it is. Thank you for hanging with me Onyx, the time I spent with you was the best time ever.

31/01/2025

Here’s today’s update since it’s been a minute since I made one.

First of all, Happy Survivorship Day to me! I have almost no energy to make a special post about it, so it’s in my update instead! So crazy that it’s been 8 years, it feels like yesterday and a lifetime ago all at once.

Now an actual update,

This week we sent out my genetic testing, which was exciting and we now wait 6 weeks for it to come back and I’m really hoping for answers, because in the last 8 years this is the closest I’ve been to having them! Additionally I saw neurology yesterday and that appointment wasn’t really so great. For one, I found out that there’s basically nothing we can do to prevent my seizures which is more annoying than anything else, so it’s basically now “We hope it doesn’t happen again, if it does use this rescue medicine and call 911” so that’s fun, and that’s basically the only thing that came from it other than being asked about my studies and if I found an adult neurologist yet (haha, we’re screwed in this department too because good luck finding any specialists here) so yeah, not really too great and that’s basically it. Nothing else to cover unfortunately.