Answers for Indy

28/12/2025

I love it when an elderly person sees me in my wheelchair and gives me unsolicited advice like “You’re so lucky to be alive, do things that bring you closer to God while you still can”

First of all, I’m going to hell in every religion. Second of all, doing s**t that brings me closer to God is exactly why I’m in a wheelchair. Hell, I almost met that MFer in person. I don’t think I could possibly get any closer to him than that.

15/12/2025

Happy holidays from Blu and I!

06/12/2025

The way this resonates with me as I fight with specialist after specialist and deal with my medical trauma is something I don’t think many understand.

Somehow every single person in the world understands as long as they’re not in the medical profession. I find it hilarious that it works like that. From Specialists to my Caseworker from Insurance, these words seem to have no meaning.

I am strong, but I’m so fu***ng tired at the same time.

27/11/2025

In better CVS community news, March 2026 will be the very first year that Cyclic Vomiting Syndrome Month will be official in South Carolina!

Big help to the Cyclic Vomiting Syndrome (CVS) Network Support Group for this as that’s where I found out about it! I highly recommend you join the group if you haven’t done so already because it’s such a great resource for our warriors!

27/11/2025

I hate making these posts, but I’ve just been told that our community of CVS Warriors has lost yet another warrior. Her name is Amber Milnes and she is one of the youngest warriors to die from the horrific complications of this disease. She was five years old.

We need change, we need answers! We need for our warriors to stop dying from complications of CVS!

Rest in peace to this magical little princess, we will carry on your fight earthside. 💙🪽

https://news.sky.com/story/girl-5-who-was-magical-little-princess-died-four-days-after-tonsils-were-removed-13476015?fbclid=IwQ0xDSwOVkvxleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEe62OWZBPiJue_CqPG38Rg__P6MgD5TYsaRevfRz9gC7PL37ZHn2r6weQhChc_aem_xydkTgpJMLOi8UiSymyvqA

The Royal Cornwall Hospital sent Amber Milnes home after her operation and told her parents to "wait and see" when she fell ill, an inquest has heard. She was eventually readmitted but pronounced dead on 9 April 2023.

26/11/2025

Before I start this post, I wanted to say that this isn’t usually the kind of post I would make, but I have a platform and as an awareness speaker for those with Disabilities, I feel like this needs to be further posted because I am blown away at how cruel people can be, especially towards people they don’t even know.

Today I was scrolling Facebook as I usually do, when a video of a girl with an NG popped up on my feed and she was explaining that she is currently on trial for the crime of “stealing” chickens from a factory farm and if she goes to jail, she will be forced to take out the medical devices that are actively keeping her alive.

Now whether she is in the right or wrong remains in the hands of the court and I’ll let you decide what you believe as the reader because this isn’t about her, but rather about many of the remarks made about her devices.

Almost every comment had something to say about her devices and how she shouldn’t have taken action. After one commenter laughed at her and said “What’s the tube for? Do you shovel the chicken s**t up there?” I snapped…

I don’t care who you are, I don’t care what you’ve done, I don’t even care who you are, but this is unacceptable behavior for grown adults (most of them Men) to have about the ability to be able to eat with assistance by a feeding tube.

That said, here’s my response to him from me. Actions do not equal having one of your vital bodily abilities forcibly removed, taken or compromised otherwise.

So enjoy and have the day you deserve based upon this post…

21/11/2025

Another day, another appointment! Wish me luck!!

20/11/2025

Wish me luck guys, I have an appointment with Pain management tomorrow for the first time since 2021….

I have a history with pain management doctors and giving them hell, so hopefully this new guy is prepared for it.

30/10/2025

Step one of getting answers: Fighting with the printer to be able print out over 10 different pages of evidence from different hospitals across the country to give to the doctors.

All information obtained on this was taken from websites of some of the most famous hospitals in America including Cleveland Clinic and Mayo Clinic…

Every single thing is critical, acting as a puzzle piece. Each paper connects to each other…

Let’s fu***ng do this!

29/10/2025

So holy s**t do I have an update for all of you guys!

One that I genuinely didn’t think I’d ever get to write, but that’ll be at the end of the post.

First of all, it’s been a year since my Epilepsy diagnosis and man, time has flown! This day last year I was diagnosed with Epilepsy and I’m 99% sure there’s still some glue in my hair from the EEG test.

Now as for my wellbeing I’ve been good. My sleeping went from being bad, to being really good in the span of a few weeks which again is good. Unfortunately my Bridget Bug isn’t feeling good and I don’t know why that is. She threw up yesterday all over my mom, all over herself and all over my mom’s bed and last night she proceeded to throw up on my bed while I was asleep and then lay in the puddle of vomit for the remainder of the night.

So she’s currently banned from being in my bed until she feels better. Poor Bridget, I hope she starts feeling better soon.

AND NOW THE MOMENT YOU’VE WAITED FOR!-

Actually the moment I’ve waited for….

The one my whole team has waited for….

Are you sitting down? You should be…

Ready?…

1…. 2… 3….

We may finally have answers for everything. After 8 long and hard years of no answers, we think we may have finally uncovered what has been going unseen this entire time. We suspect that this whole time I have had Mast Cell Activation Syndrome (MCAS) and that it is the cause of everything from my organ failure, to my potassium issues, to my cardiovascular concerns and a whole list load of other things. It’s gonna be a long road of testing to find out if this is it, but if it is then we will officially have answers and know that what happened isn’t mitochondrial cell related, but instead related to my mast cells…

Please send every ounce of support to me, my mom, John, Blu and the rest of the family as we go through this next chapter of testing, because we may finally have Answers for Indy….

07/09/2025

Medical Update Time!

Honestly there’s really not been much to update on. However I did see yet another new specialist and of course, they didn’t have answers. In fact, this doctor was genuinely shocked by just how many rare conditions I have.

It was my new hematologist. He was wonderful and it was great to get established with a new one since I’ve now aged out of CHOP and can’t see my old one anymore. However I did find out some things that I definitely did not want to hear.

The first of which is that our Pharmacies here in Delaware (as well as our hospitals) do not carry factor. So that means that if I go to the hospital here in Delaware and need transfusions of factor, I’ll be out of luck. In fact, he told me that for anything major like upcoming surgeries that I should go to either University of Penn in Philly or Johns Hopkins in Baltimore. It’s really scary because if I have any emergencies I’ll need to be airlifted out of state. But that’s life I guess, and so I’ll run with it.

I love you guys!!!

31/08/2025

Sooo it absolutely sucks to say this but unfortunately my Instagram accounts (including my medical updates one) as well as my personal FB) were launched into a void of uncertainty due to a glitch in the system for M3TA that unfortunately has wrongly suspended millions of accounts. I’ve filed numerous appeals and I’m currently pursuing my next steps to recover everything.

I’m currently typing this from my old FB account from 2019 that is under my mom’s name due to FB trying to take that in 2018ish because of their age restrictions. That account is still linked to this one, as well as my mom’s account itself meaning that I have multiple backup options for this medical blog.

I love you all and I’m so sorry for not having a sooner explanation! I wish everyone the absolute best and I’ll be here soon with an update! Also for everyone who came over from my currently suspended Instagram account or FB account, please spread the word of what happened so people can find me again!