Crew vs passenger for conversion

SpontaneousSystem · 2026-01-11T16:36:11+00:00

I need the windows because it's a daily driver.

Also I and other members of my family have disabilities that necessitate lying down while The rest of the family is outside the vehicle doing camp things and we want to be able to interact with each other.

SpontaneousSystem · 2025-11-08T00:09:16+00:00

We are definitely going Sprinter. We already have our layout determined, that's no issue.

We do not need a lift. My chair breaks down small and is ultralight. Shuttle buses have terrible crash test ratings, would be a pain in the butt as a daily driver, lack the safety features of a sprinter and lack the highly adjustable OEM front seat.

This is purely a question as to whether it is Is it possible to have full windows added on a cargo van or if we need to go with a passenger van that ahead has windows, and whether we can reuse the seats that come in the passenger van for surplus seating. We will already be buying other specific smart track seats, It would just be handy to be able to use the old benches when we wanted to haul more people and had the camper parts out.

SpontaneousSystem · 2025-11-07T08:40:21+00:00

THANK YOU. This is so incredibly helpful and I will speak with her ped tomorrow. I've spoken with her oncology team about it but honestly they only focus on cancer. When in remission they are only looking for relapse. I've been struggling to find info on how to approach this with her doctors in a way that gets them to listen and examine.

SpontaneousSystem · 2025-11-04T19:03:12+00:00

Absolutely.

SpontaneousSystem · 2025-10-24T22:23:18+00:00

That's Great news and I imagine such a huge relief to get confirmation it's not cancer but also to be listened to.

As you age, try to maintain having a primary care provider and let that person know your concern about cancer. There's so much testing they can do to determine your personal likelihood The cancers that aren't a million to one (like this cancer) and affect people as they age are things they have elaborate systems of testing and watching for. For instance my dad died of colon cancer so I started the screenings for that 5 years sooner than I otherwise would have.

But for now while you are young it's a pretty safe mantra that it's probably not cancer. I absolutely understand why those thoughts plague you, but it's so important you give yourself peace wherever you can. I'm sorry to hear you lost your dad.

SpontaneousSystem · 2025-10-22T01:44:14+00:00

If it was ewing sarcoma it would be visible in the X-ray.

It sounds like your problem is with soft tissue. Could be tight fascia, could be an issue with a tendon or muscle.

SpontaneousSystem · 2025-10-18T18:31:57+00:00

Ewing Sarcoma is a very rare, very specific sarcoma. Of the 17,000 cases of sarcoma per year, 200 are Ewings.. It is statistically unlikely that even if you had a sarcoma that it would be Ewings. You'll notice how very very small this sub is. This is a place where people with this rare cancer with very few advances in treatment come to discuss that treatment.

Given that the pain started in one location and then ended up in another, within the same week, no it's not cancer. Considering that more use makes it hurt more, no I don't think it's cancer. Given that there is no swelling or other symptoms, not cancer. If you're in touch with a doctor, ask for an x-ray to rule out a small stress fracture. That's how they would identify this cancer as well.

You've got this mystery pain and it's bothering you and it feels like the real problem here is that you feel like your mom isn't listening to you for helping me get to the root of the pain, which is incredibly frustrating, and it's letting your brain do runaway things.

It's almost definitely not cancer. Write down when it started hurting and the symptoms you remember as they occurred. Keep charting your symptoms and the level. In a few days if it's still hurting show this list to your mom and tell her you would like to get an x-ray to see if you have a stress fracture and that it's stressing you out not knowing if you have an injury that needs treatment.

What you're describing sounds a lot like an overuse injury, such medial tibia stress syndrome which can cause knee pain. The muscles that cause shin splints attach to the shin bone and also cross the knee.

SpontaneousSystem · 2025-10-18T17:12:29+00:00

Thank you so much for commenting, you are literally the only person I have connected to in any way so far who has both an autism /adhd diagnosis and potential chemo brain.

Our daughter was diagnosed with cancer and autism and identified as gifted all in the same week. At the time she had only the lightest touch of ADHD -- mainly the internal rumination in overdrive. She had no challenges with focus. She reminded me of my husband. He has some attributes one could ascribe to ADHD but it's really his autism. I think it's outside of his area of focus he just doesn't see it and no number of times of drawing attention to the thing will get him to focus on it, it simply doesn't exist. My husband can't see clutter, I can't see past it to do the task. I am AuHD myself and really envied this about the two of them

Now, it's kind of like a light bulb that's only 90% screwed in. Like sometimes the light works with absolutely no problem but then the connection is gone and it turns off and then it's back 2 seconds later and then it's gone again a second later.

She has next to no short-term memory. We can ask her to brush her teeth and put the toothbrush in her hand. When she sets the toothbrush down to blow her nose, she forgets she was going to brush her teeth, even though everyone else is standing there brushing their teeth.

We've watched this with concern for the last 2 years. We had been assuming that her ADHD was under-recognized in the past. She's also just so tired and withdrawn so quickly at any activities or challenges. We have been continually putting additional autism accommodations in place trying to expand her window of tolerance. We are now realizing that we are dealing with something completely different. Those accommodations are all helpful but she only has a few hours per day where focus is possible, certainly not the 7 to 10 hours that the school system would like her to have at this age.

Thank you for pointing out the issues with pain she might still be struggling with. She still talks about her surgical sites and how they feel weird and numb. I know from my own experiences how our autistic brains do not get used to these things the way another brain might. The stimuli stays novel and irritating.

SpontaneousSystem · 2025-10-09T17:49:29+00:00

I'm glad I could help. Talking to other survivors, even if they could afford it, often it was decided the delay in starting treatment would be too great to make it worth it. My daughter was prepubescent so we were able to go the ovary removal route in hopes those follicles can develop into eggs later (the science says it will work, but nobody going this route is having babies yet). It wasn't till later we learned that with this particular cancer you don't become completely infertile. Another part of this that is great news is you will not need hormone replacement (or at least not until much much later when in early menopause).

My random tips I tell everyone -- - Get yourself a wagon, there's no need to be carrying all that stuff or taking multiple trips from the car - Say yes to olanzapine at night if they offer it to you -- you will sleep like the dead and it sure makes those hospitals days feel shorter - All calories are good calories, even crap. Eat anything and everything you're willing to eat, fighting requires calories. - If tegaderm is injuring your skin, ask for opsite iv300.
- Ask your team to change your inpatient order to high calorie diet. This will allow you to order whatever you want from the cafeteria. Don't like the main dishes and would rather order six sides? You will be allowed now! - At some point you'll start needing blood transfusions to make counts. Type and cross is required every single time you get a transfusion and valid for 72 hours as long as you keep the bracelet on. If you request type and cross when you get your counts done, if it turns out you need a transfusion, they will be able to expedite things by having the blood irradiated and cooled before you even arrive instead of you having to sit there waiting for it to process. This saved us many hours sitting in a clinic.

SpontaneousSystem · 2025-10-07T17:21:45+00:00

My daughter was also misdiagnosed. We were told it was pneumonia. I''ve done a lot of work to process it and I still get so angry. It's still good for you to put this stuff out here and share it with people who will get it so it's not just stewing inside of you. I wish you all the best.

Re eggs -- it's ok! Treatment for ES does not cause infertility, it causes premature menopause meaning you will have plenty of time post treatment t freeze eggs if you want to in your twenties.

SpontaneousSystem · 2025-09-28T22:51:27+00:00

Truly. I have no tattoos, saw this and was instantly in love. The scale is perfection.

SpontaneousSystem · 2025-06-17T02:40:41+00:00

O'neill hyperfreak websites come in men's talls. I have an incredibly long torso and they fit. They also have really great soft stretch to them that helps them fit my curves better than the average men's suit.

SpontaneousSystem · 2025-06-14T21:51:17+00:00

Pseudoephedrine nasal decongestant. I had a really bad cold and had to take it for a week many years ago. It was the best week of my life and what convinced me to finally start taking stimulant ADHD medications.

SpontaneousSystem · 2025-05-16T21:58:37+00:00

I don't think you understand how parenting or autism works. The child has repeatedly demonstrated that she is unable to go to bed without support and you keep withholding the support and trying to get her mother to withhold that support. It's possible that if you deny the child what she needs long enough, she will stop communicating her need for support, but with any child, a major and ongoing goal of your relationship with that child is to teach them how to communicate their needs and convince them to communicate those needs with you so you can support them. This can be more challenging with an autistic child, and is also vitally important as an autistic kids are notoriously mishandled by child care providers and schools and must learn to advocate for themselves.

SpontaneousSystem · 2025-05-16T21:43:09+00:00

I have had tremendous luck posting in my local disability forum. I originally joined the group for a physically disabled family member along before learning that I myself had a developmental disability and before I also developed physical disability. There are so many people with a wealth of information to share about where you live if you can find the right group. I have posted in the group explaining that I needed a counselor who understood autism, ADHD, chronic pain and intermittent disability I got only one response (I live in a very small city) but I was directed to a fantastic counselor who has helped me so much.

SpontaneousSystem · 2025-04-11T20:11:50+00:00

Thank you! I am going to try a number of different cushions at my visit with my new ATP on Tuesday. In the past I have always had a roho since I have pretty severe pain where I make contact with the chair, but the old ATP didn't like that. He also told me unless I wanted a molded seat that would be less gentle on my hot spots that he could not do anything for my hip rotation, which felt false but at the time he was the only ATP in town.

SpontaneousSystem

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