Wow it has been a hot minute since I posted, writers block merged to flare which merged to a new job which merged into the worst flare yet which brings us to the land of rehab and falling through cracks because you’re diagnosed with weird illnesses. One of the things that can be extraordinarily tricky to navigate when you have rare/non big name disorders is the fact that you often don’t fall into a particular category, track, or program that will help you when you need it.

While some of my conditions have established organizations, few to none are large enough or have enough resources to help patients directly to navigate the system and you’re unlikely to be flagged by a hospital or government organization as qualifying for certain services/help. For example, many people who go from ambulatory to full time wheelchair user are those with spinal cord injuries. Starting a few days after your injury you are connected with case managers, support groups, rehab options, durable medical equipment suppliers, OTs, PTs, ATPs, organizations, and more. There are programs dedicated to these types of injuries which experienced professionals, community-based supports, and even charitable organizations (which is fantastic!). Similar types of “tracks” can be found for traumatic brain injuries, MS, ALS, cerebral palsy, strokes, memory loss, amputation, and more.

But what if you are facing similar types of situations/symptoms as the aforementioned but because of a rare disease? Who is there to guide you through that? Will you qualify for the same type of rehabilitation, supports, and guidance? How can you make the transition from your previous life of being sick but mainly independent to needing help, rehab, equipment, home modifications, or vehicle modifications? Where can you find information, resources, and options?

While I have used a wheelchair in college and for long distances/flares previously, it has been nearly 3 years since I have needed it more than a day. Prior to November 2019 I was working, rock climbing, walking and fairly independent. I wasn’t without significant health challenges but was fairly well managed. I was admitted in the beginning of November following a dystonic storm that sent me to the ER. Due to a variety of factors, I continued to decline in the hospital. By the time I was discharged I was unable to exert myself physically without going into full body dystonia, could not walk or stand for long unassisted, and took a major hit in the categories of coordination, balance, proprioception, and motor planning. Oh, and being in the hospital is just making it all worse so avoid that. Consensus was reached that I needed to be transferred to an inpatient physical rehabilitation program to retrain my body how to walk. Sounded like a good plan. Ha.

Immediately we were hit with barriers- many inpatient rehab centers require at least 3 hours of daily therapies, something my fragile little ecosystem definitely couldn’t handle. Additionally, it seemed uncertain whether the centers would be able to manage full blown dystonic storms or if they would send me right back to the hospital. Lastly, there was the issue of their ability to manage my medications, allergies, and reactions. So we tabled that thought and started trying to get me home with home health, PT, OT, and Speech. Sounded like a solid plan. Clearly we did not yet have 2020 vision. Ha.Ha.

So we spent a month or so getting creative at home with home PT. But we had to work with what we had, and all we really had was a gait belt and some therabands. We made calls looking for a day rehab programs that I would qualify for based on word of mouth suggestions, internet searches and home care recommendations. We essentially found nothing. And this was not because there was a lack of programs, but each program had an if and or but attached to it. So we pivoted yet again towards finding an outpatient PT center that would handle me. My previous PT is amazing but they were not a rehab center and lacked the equipment and staffing needed. Finally we stumbled upon a place that would see me, deal with complex patients and had some experience in the rehab world. The major downfall being that we would be constrained to the typical PT schedule: 1-3 times a week and 30-60 minute time periods but we are making it work. Thank god for the internet.

PT: check.
Now all that’s left is: figure out what is wrong with me, fix wheelchair, make 2 story house wheelchair accessible, stay out of the hospital, completely reorganize room, figure out transportation, schedule follow ups, find specialists, research, relearn how to walk, keep all my other conditions in check to avoid hospitals, try not to get the flu from these germballs walking around (PSA get your flu shot) and figure out what to do with my life now.

I would say in the past couple months I have interacted with over 50 medical professions, therapists, and service providers just to take care of the immediate needs. Doctors, NPs, pharmacists, nurses, PTs, OTs, ATPs, stairlift specialists, electricians, mobility specialists, DMEs, insurance, ramp builders, hospital bed suppliers, adapted driving/vehicle specialists, and more! It is complicated and exhausting and I consider myself to be a professional patient!

I can’t help but think about the barriers I faced and wonder how anyone manages to deal with all this. I have several benefits: good insurance, full command of the English language, a good medical knowledge, connections in the medical and rehab communities, internet access, communication skills, time management skills, organizational skills, financial assets, and many more attributes that have made this process easier for me that so many do not have. I have managed to fumble my way through the system and achieve a relatively decent outcome. Rare disease diagnosis should not translate to lack of support and options. These cracks in the system should not be so wide and so deep that the minute you step outside a few pre-drawn paths, you shit outta luck.

We need more advocates. We need broader reaching support for patients with complex and high need patients. We shouldn’t have to find all our own solutions, treatment options, and services. We need more help.

That’s all for now, hopefully I will come up with some post ideas and be posting more frequently. Feel free to comment or let me know if you have any ideas, I will be doing a post about accessible vehicles in the next couple weeks but after that I got nothing.