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