What became of the girl who went to europe to get treated ?

[Colin_T]

Well I'm glad you are safe (safe-ish not a word but sort of safe) and trying to be positive (which is better than I am) and I hope things with the ex work themselves out sooner rather than later. That's not really something you need in your condition and the state needs to get this sorted asap.

Wishing you all the best and hoping the ex issue gets dealt with quickly and the go fund me gets the money to send you in so you can be fixed up.

 

[JuiceBox52]

Well I'm glad you are safe (safe-ish not a word but sort of safe) and trying to be positive (which is better than I am) and I hope things with the ex work themselves out sooner rather than later. That's not really something you need in your condition and the state needs to get this sorted asap.

Wishing you all the best and hoping the ex issue gets dealt with quickly and the go fund me gets the money to send you in so you can be fixed up.

Much appreciated and I am so thankful for this little community on TFF, I love it here even if I have been less active

 

[Fishmanic]

It's good hearing from you after a few months that you have been away from our site. You have one big thing on your side...a positive attitude. I hope 2025 will be a better year for you, both mentally and physically.

 

[JuiceBox52]

It's good hearing from you after a few months that you have been away from our site. You have one big thing on your side...a positive attitude. I hope 2025 will be a better year for you, both mentally and physically.

I hope to be more active in the coming months! I can already tell it will be better mentally

 

[WhistlingBadger]

Thanks for the updates, Juice.

 

[JuiceBox52]

2025 has been a rollercoaster!
On average I’ve had 2 ambulance rides per week, with 3 admissions to the ICU since the first of January. I was in a short coma (not medically induced) that lasted about 14 hours a week or so ago. I’ve been fired from three doctors for “being too complex” they said they no longer want me as a patient and dropped me.

Currently I’m in the PCU and have been since I got out of the ICU on Saturday (arrived on Friday)

We don’t know why it’s getting worse, but every attack now paralyzes my diaphragm and I stop breathing. On Friday they couldn’t get venous access and had to drill an IO catheter into my tibia in order to sedate and intubate me and get me on a ventilator. so now I have a broken bone lol. That one hurt, no numbing or anything.

I was going to be discharged yesterday until I coded again, but hopefully tomorrow or late tonight they’ll let me go.

On the plus side of things though!

•I started a foundation for people with rare diseases like me

• I’ve been working closer with other organizations like connective strength and the NW rare disease coalition.

• I got to meet with a bunch of the state representatives and senators to discuss policies surrounding rare diseases, how they impact the general population etc, and I was invited to Washington DC to meet with congress

•The second medical book I’ve illustrated is coming out in May, very excited for that!

• I was given the honor of being crowned Ms Wheelchair Northwestern USA and will be competing at the national level pageant in July which is exciting

• And my next art battle and birthday are coming up this month!

 

[jaylach]

2025 has been a rollercoaster!
On average I’ve had 2 ambulance rides per week, with 3 admissions to the ICU since the first of January. I was in a short coma (not medically induced) that lasted about 14 hours a week or so ago. I’ve been fired from three doctors for “being too complex” they said they no longer want me as a patient and dropped me.

Currently I’m in the PCU and have been since I got out of the ICU on Saturday (arrived on Friday)

We don’t know why it’s getting worse, but every attack now paralyzes my diaphragm and I stop breathing. On Friday they couldn’t get venous access and had to drill an IO catheter into my tibia in order to sedate and intubate me and get me on a ventilator. so now I have a broken bone lol. That one hurt, no numbing or anything.

I was going to be discharged yesterday until I coded again, but hopefully tomorrow or late tonight they’ll let me go.

On the plus side of things though!

•I started a foundation for people with rare diseases like me

• I’ve been working closer with other organizations like connective strength and the NW rare disease coalition.

• I got to meet with a bunch of the state representatives and senators to discuss policies surrounding rare diseases, how they impact the general population etc, and I was invited to Washington DC to meet with congress

•The second medical book I’ve illustrated is coming out in May, very excited for that!

• I was given the honor of being crowned Ms Wheelchair Northwestern USA and will be competing at the national level pageant in July which is exciting

• And my next art battle and birthday are coming up this month!View attachment 363416View attachment 363417View attachment 363418View attachment 363420View attachment 363421View attachment 363422View attachment 363424

You totally amaze me Juice! Most in your situation would give up but not you. If you were a boxer you would be World Champ as there is nothing in you but fight. Even if only through these forums I consider it my honor to have met you.

 

[CaptainBarnicles]

So proud of you girly, what an inspiration you are keep fighting

 

[JuiceBox52]

Fun little update (well, not so fun, but fun at the end!)

I am no longer medically cleared for surgery in Spain until we get my periodic paralysis attacks under control. This is difficult as there are very few specialists and multiple doctors and hospitals have turned me away for being too complex.

In the past three months a lot has happened.

-on average 1-2 ambulances per week
- I’ve had three ICU stays
- I went into an unexplained coma
-I coded probably 5 times
- I am severely anemic and nobody can figure out why
- I ended up in full respiratory arrest and was intubated in the back of an ambulance in a parking lot

- they drilled an IO catheter into my leg in the back of an ambulance with no numbing
-my cardiologist fired me as a patient “because I’m too complex”
- the university of Washington hospital turned me away for the same reason
-another major hospital discharged me while medically unstable and said “she’s too complex, if she ends up in another coma, put her in the car and drive her out of state because maybe someone there will want to deal with her”

I’m being referred out of state in the hopes we can get some help. Every attack now has started to paralyze my diaphragm and impact breathing. I frequently am bagged by the medics in the ambulances because I cannot breathe on my own. It’s very discouraging having so many doctors say they have no idea what to do

Despite it all, I am keeping on going. The near death experiences are only motivating me more to fight and make a change before my time is up on this planet. With such scary things happening I never know what day will be my last and I want every day to count.

- I turned 22 yesterday!

- I am once again competing in art battle, the regional tournament is March 22 (info here)

- I got a 210 gallon aquarium which is exciting

- I founded an organization to provide resources for patients like me, something I wish I had when starting my rare disease journey (www.rarelivingfoundation.org)

- I was crowned Ms. Wheelchair Northwestern USA and will be representing the PNW at the competition for the title of Ms. Wheelchair USA in July. I am using this platform to advocate for rare disease patients

- I met with many of our WA state senators and representatives to discuss rare disease and how legislation can improve for patients and their families to help shorten the diagnostic odyssey

 

[Oldspartan]

You have an amazing heart Juice. Not many have the fight you have. Hoping you well.

 

[JuiceBox52]

You have an amazing heart Juice. Not many have the fight you have. Hoping you well.

I am currently hanging in there alright. I can’t sleep (it is 4:30am for me), and I’m resting in preparation of art battle tonight

 

[jaylach]

Fun little update (well, not so fun, but fun at the end!)

I am no longer medically cleared for surgery in Spain until we get my periodic paralysis attacks under control. This is difficult as there are very few specialists and multiple doctors and hospitals have turned me away for being too complex.

In the past three months a lot has happened.

-on average 1-2 ambulances per week
- I’ve had three ICU stays
- I went into an unexplained coma
-I coded probably 5 times
- I am severely anemic and nobody can figure out why
- I ended up in full respiratory arrest and was intubated in the back of an ambulance in a parking lot
View attachment 363858
- they drilled an IO catheter into my leg in the back of an ambulance with no numbing
-my cardiologist fired me as a patient “because I’m too complex”
- the university of Washington hospital turned me away for the same reason
-another major hospital discharged me while medically unstable and said “she’s too complex, if she ends up in another coma, put her in the car and drive her out of state because maybe someone there will want to deal with her”

I’m being referred out of state in the hopes we can get some help. Every attack now has started to paralyze my diaphragm and impact breathing. I frequently am bagged by the medics in the ambulances because I cannot breathe on my own. It’s very discouraging having so many doctors say they have no idea what to do

Despite it all, I am keeping on going. The near death experiences are only motivating me more to fight and make a change before my time is up on this planet. With such scary things happening I never know what day will be my last and I want every day to count.

- I turned 22 yesterday!

- I am once again competing in art battle, the regional tournament is March 22 (info here)

- I got a 210 gallon aquarium which is exciting

- I founded an organization to provide resources for patients like me, something I wish I had when starting my rare disease journey (www.rarelivingfoundation.org)

- I was crowned Ms. Wheelchair Northwestern USA and will be representing the PNW at the competition for the title of Ms. Wheelchair USA in July. I am using this platform to advocate for rare disease patients View attachment 363854

- I met with many of our WA state senators and representatives to discuss rare disease and how legislation can improve for patients and their families to help shorten the diagnostic odyssey
View attachment 363855View attachment 363856View attachment 363857

I feel for you Juice, possibly more than you know. Your situation just breaks my heart.

I can relate to the near death stuff as I have experienced myself. I pretty much died while in the Navy. My breathing totally stopped and they could not get me going. While this was going on I was having a conversation with... don't know what but beyond our understanding. I was asked if I had done what I was supposed to do and I answered no. As soon as I said no my body started breathing and I was out of the hospital in 2-3 days. In hindsight I wish I would have asked what it is that I was supposed to do but I somehow doubt that I would have been given the answer as that would have been too easy. I guess whenever I do it I will know...

Sort of weird things seem to happen with me. For example when I was hitch hiking from Ohio to Wyoming (my favorite travel method) I got picked up by an independent preacher. He asked me where I was going and I said Spokane Washington. He said that I would not reach Spokane. He said that there was a lot of strength within me but I was not ready for Spokane. Said I may end up there but not yet. Over 13 years later and I'm still in the eastern foothills of the Rocky Mountains and Spokane is on the Western side.

My life has been full of such odd things. For instance when I was 15 I was part of a group of twelve doing an extreme 750 mile canoe trip. We hit a set of rapids that we had to walk the canoes through. A guy in the last canoe was wearing the wrong kind of boots and hit a hole and went under. I jumped back in my 12 foot canoe solo and aimed for where I last saw him. I hit the spot and reached down and got a handful of hair and pulled him up even though I could not even see him in the rough water. It should have never happened yet it did.

You have a strength within you that is awesome. Many would just give up yet you fight. Somehow I feel that you will end up OK as there is zero quit in you. Keep fighting the battle pretty lady. Can't really say why but I have all faith that, in the end, you will stand with your hands in the air claiming victory.

 

[jaylach]

Hey Juice, I want to add your 'cause' to my computer help forums but I need some info. I need a link to your donation system and a name for what you have along with a few links that describe.

 

[jaylach]

I was going to drop another donation to your medical costs but can't seem to see a link to do so?

 

[MattW]

Happy birthday! It's amazing to see your work and perseverance on legislation for rare diseases. You are a lot braver than me! Any disease/illness diagnosis especially at a young age can be traumatizing so your foundation will be a massive help to others. I got Typ1 in 2014 aged 12 and felt like I was being swallowed up by my condition, but foundations similar to yours helped remove that feeling through support and being given access to newer tech to control my condition.