Exciting News!

[JuiceBox52]

After writing to the Governor, Jay Inslee’s office, I was able to get the month of May officially declared to be Ehlers Danlos Syndrome Awareness Month in the state of Washington! Since having to drop out of medical school and as my ability to paint and draw are quickly deteriorating, I’ve been moving more into the advocacy field, and have since joined over 8 advocacy organizations for various rare diseases that I live with.

(Yes my neck is still injured, I took the brace off for the photo)

For Ehlers danlos awareness month I will be posting a fact about EDS every day, here, on my website, on my TikTok, YouTube, Instagram and Facebook as well! I’m always open to answering questions.

 

[Ceez]

Really respect what you're doing and the character it shows! There's a few different ways to handle things like this, the choices you have made and the smile on your face are gonna do nothing but give others hope and encouragement.

Huntingtons disease runs in my family. When my brother got diagnosed with it, it was hard to stay positive. Going to different events and becoming involved really helped with our awareness and ability to deal with it. Helping others when he needed help himself really pushed him through many of the rough patches so I applaud your efforts and even more respect them.

Prayers to you and your daily fight wishing you the best

 

[Colin_T]

Well done Juice

On a side note, whilst you are getting some awareness of the issue, is there anything happening with you in regards treatment, or are you still waiting to see the specialist overseas?

 

[JuiceBox52]

Well done Juice

On a side note, whilst you are getting some awareness of the issue, is there anything happening with you in regards treatment, or are you still waiting to see the specialist overseas?

I had a virtual consultation with him this Wednesday. He’s not comfortable operating on me without further testing, so we now have to make the decision between paying thousands of dollars for tests here in the states and being exposed to an obscene level of radiation, or finding a way to may two trips to Spain happen to get radiation-free scans at his clinic in Barcelona.

So for now, my head remains not attached. Unfortunately though, we can’t get my hips/abs/quads fixed until after my neck. We also can’t get both of my torn knees repaired until after my abs and hips. And my knees and hips are getting worse. The arthritis in my knees and spine are getting worse and causing immense swelling.

My MCAS is flaring incredibly to the point almost every food is causing anaphylaxis, exposure to heat, cold, or sunshine cause my body to be covered in hives, and medications aren’t managing it. I can’t even be in the same building as someone eating chocolate or my throat closes. And the joys of MCAS, is that anaphylaxis triggers are inconsistent and can change by the hour. The exact same food I had for breakfast can send me into crisis at lunch.

I have another CSF (cerebro spinal fluid) leak, and we’re waiting on next steps for that.

Heart failure has made no progress, but hasn’t gotten worse. No word yet on if they’ve decided on a port and feeding tube yet, but it would help immensely.

I’m so overwhelmed and don’t know what to do from here. I have about 2 useable hours each day, but even those two hours are spent usually in bed. Other than that I’m too tired or sick to do much. I try to slowly work on my laptop or phone when I can. I’ve been working a lot on growing my TikTok platform for awareness, and I’m going to have a book published at some point this year (hopefully I can finish it by then)

We are permanently moved in with my husbands parents now, as I need more caretaking than I can give myself while he is working. That comes with all the joys of its own lol

 

[Colin_T]

I had a virtual consultation with him this Wednesday. He’s not comfortable operating on me without further testing, so we now have to make the decision between paying thousands of dollars for tests here in the states and being exposed to an obscene level of radiation, or finding a way to may two trips to Spain happen to get radiation-free scans at his clinic in Barcelona.

How can they do radiation free scans in Spain but not in the US?

The rest of that post is bloody awful. I'm sorry Juice, I wish I could heal you. What a horrible thing you are going through.

 

[JuiceBox52]

How can they do radiation free scans in Spain but not in the US?

The rest of that post is bloody awful. I'm sorry Juice, I wish I could heal you. What a horrible thing you are going through.

In Spain they have a certain type of machine, not MRI, but a different kind of alternative for CT scans. It’s an upright scan similar to upright MRI, but can be used for other purposes.

If I was to get scans here in the states, I’d need to get:
- Two upright MRIs (there’s only one machine in our state, and that’s lucky even though it’s a crazy long drive because most states don’t even have a machine. Canada only has one machine in the whole country!)
- 6 CT scans of my neck/head all in different positions. Which is a lot of radiation, especially considering how many other CTs, X-rays, and nuclear medicine studies I’ve been exposed to. They’re already hesitant to do an X-ray with my current exposure levels, this would be insane.
- MRV (venogram)
- two prone MRIs
-two supine MRIs
- in depth ophthalmology exam
He also wants me to try a long cervical traction trial but there’s nowhere in the states to do that.

If I was to go to Spain, and instead of using the uMRI machine here AND all of those CT scans , use their uCBCT scan as a combo id only need one scan in a variety of positions. And it’s not radiation like it would be here, as it’s similar to MRI.

Also, I’d be able to do the traction trial. Testing for all the scans plus the traction in Spain is just under $3000 (plus flights of course)

Testing here would almost certainly be out of pocket, at least half of it. Just one of those scans could cost me 3k easily. So it seems like an easy choice, but it’s still a big decision and hard choice to make as it would mean two trips. Which means we cannot afford airlifting both times and commercial flight could be risky

 

[Colin_T]

Spain sounds like the better choice.

Pretty pathetic that the US, which considers itself the best country in the world doesn't even have modern medical scanning devices that don't harm you. Is there any chance the state government can invest in one of the fancy uCBCT scanners for the state? It would prevent a lot of people developing cancer from standard CT scans.

 

[JuiceBox52]

Spain sounds like the better choice.

Pretty pathetic that the US, which considers itself the best country in the world doesn't even have modern medical scanning devices that don't harm you. Is there any chance the state government can invest in one of the fancy uCBCT scanners for the state? It would prevent a lot of people developing cancer from standard CT scans.

I wish. Before they’d even consider that they need to get uMRI machines to be accessible not a priority. And they make money off people with cancer anyway so

 

[anewbie]

The US has some of the best doctors in the world but the hospital side of things have turn into **** mostly because of the for profit hospital and insurance companies throwing the whole system out of whack. You might contact mayo clinic or stanford as both are top notch. I personally was really happy with mgh (boston) but without a personal contact it will be difficult to locate the right doctor and i can't help there as my contact for such things died - there is a real problem with medical system in the us and it is because of all the $$$ floating around and the large number of unethical people who are only interested in $$$.

Stay away from run of the mill places the last thing you want is a quack making bad diagnosis (my sister ran into that issue and it probably reduced her life span by 20 years).

@Colin_T you think the problem with the scanner is a big issue but just take a look at the issue with common 'disease' of pregnancy. I bring this up because it was in the news recently but there are MANY cases of for profit hospitals turning away emergency cases if the lady is pregnant only to result in her or her infant death. The bottom line reason is $$$ as many rural hospitals have been taken over by for profit corporation and pregnant ladies can cost them money.

Anyway @JuiceBox52 good luck and hopefully you will find the right doctor who will treat you first class. If you do remember them and when you are rich and famous help fund their research.

 

[Back in the fold]

Very cool . Good job kid .

 

[GaryE]

Spain has socialized medicine, which cuts out the for profit aspect except for people from other countries.

Still, 3 grand seems reasonable compared to some things in private medicine. Travel would be the issue. I am going to Seville soon, on a short vacation, and we fly via Casablanca. You're six hours west of me (by plane), so Barcelona would be a tough flight. One of the scary things I've noticed about living out there in the wild places is the potential lack of resources, flight, etc. I imagine you would have to stay awake all flight if you went commercially. It would be the only way to protect the neck, from my experience. I doubt you're 6"3 like me, but aircraft seats are not comfortable.

If you got the right flight from a large airport it could be 13-15 hours.

Could you go a few days early and recharge before the tests and the consultation?

 

[JuiceBox52]

Spain has socialized medicine, which cuts out the for profit aspect except for people from other countries.

Still, 3 grand seems reasonable compared to some things in private medicine. Travel would be the issue. I am going to Seville soon, on a short vacation, and we fly via Casablanca. You're six hours west of me (by plane), so Barcelona would be a tough flight. One of the scary things I've noticed about living out there in the wild places is the potential lack of resources, flight, etc. I imagine you would have to stay awake all flight if you went commercially. It would be the only way to protect the neck, from my experience. I doubt you're 6"3 like me, but aircraft seats are not comfortable.

If you got the right flight from a large airport it could be 13-15 hours.

Could you go a few days early and recharge before the tests and the consultation?

That would be the plan yeah. Testing lasts three days, so I would probably have a total of 5 or 6 days there plus travel.

And yes! 3 grand is very reasonable for all of those scans, considering I’ve paid more than that for a single MRI before

 

[GaryE]

Flights from US airports are pretty good.
If this is your shot to get a firm diagnosis you may be able to work with, it's worth it. Start learning Spanish and Catalan now!

We try to travel every time my wife gets good news from her Oncologist. So far, so good, and we're hoping for a lot of trips to come.

 

[JuiceBox52]

Flights from US airports are pretty good.
If this is your shot to get a firm diagnosis you may be able to work with, it's worth it. Start learning Spanish and Catalan now!

We try to travel every time my wife gets good news from her Oncologist. So far, so good, and we're hoping for a lot of trips to come.

My husband is half Cuban and speaks Spanish fluently thankfully!

I also hope you have many trips to come!

 

[GaryE]

Ah, but if I am right about Barcelona, then he'll have to thpeak thpanish fluently. That s and th thing is there. It'th on my litht of places I want to vithit thomeday.

Hopefully, you can get things sorted out enough that you can visit such places for pleasure. Travel's a great education everyone should take advantage of. I'm always shocked when I talk to people content to see only one country or one part of the world. Now, you travel for word from the experts - but maybe in the future you can travel for the sheer beauty and learning of it.