It’s 2020 Y’all

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.

Dos Equis Meme: "I don't always get sick but when I do, I get some shit no one has heard of"
“I don’t always get sick but when I do, I get some shit no one has heard of”

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.

WARNING: Might just be one long rant…

        Okay… so I wanted to touch on a bunch of different things that don’t have another home. I’m feeling very brain foggy/disorganized so if none of this makes sense… then it’ll probably at least be entertaining.
#1: How long it takes to get anything done in the medical world
Let me preface this with I ABSOLUTELY know this is not all on the medical professionals. There’s shit with insurance, documentation guidelines, hospital rules and regulations, and just overweighted caseload that influence this issue. But seriously, it gets ridiculous.
Some examples:

  • I met with a new GI July 22nd. He seemed on top of his game, familiar with my conditions, and agreed that action needs to be taken to get by nutrition etc back on track. He had lots of medical history, former testing, current summary… everything he needed. He ordered a SmartPill test (camera pill you swallow and it takes pictures and does testing as it goes through your GI tract… pretty cool) and an upper and lower scope (sticking cameras up your arse and down your throat…yum). I had already had a gastric emptying test to diagnose gastroparesis (delayed stomach emptying), but we had no idea the motility of my intestines or if they absorb any of the nutrients. Fast forward 4 weeks until my scheduled SmartPill test swallow. I had to go off all GI meds for a week (which means not only more of the daily yuck but near constant acid coming up my throat), get a ride to the hospital, fast beforehand, take off work etc etc. I get there and they’re (nurses) doing the pre-procedure checklist. They get to question #3 “do you have any implanted devices?”… “yes… but the doc knows about it… we talked about it”  “Let me give him a call”  *comes back 10 minutes later* “I’m sorry, the implant disqualifies you from doing this test, I have to cancel it… the doctor will give you a call (lol jk)”. Okay, so waste of time. I messaged my doc later (shock and awe… he never called) and asked if we could schedule the only other test one can do to get the same data as the SmartPill. His response: we will talk about it next appointment. So you’re thinking aight… that’s okay. Wrong. Not only is his first available not until mid-November, but his office won’t schedule any follow-up appointment until after I complete, and get the results back from the scope scheduled for September 14. So basically I’m SOL until at least December timeframe…. assuming that visit won’t just mean going over EGD results and him ordering the same test I asked him about months earlier. Don’t worry guys…it’s only nutrition.
  • It took my PT 3 weeks to write and sign a sentence saying “patient needs new custom wheelchair back to maintain posture and for support”.
  • It has taken my doc 5+ weeks (he was on vacation for one but still) to write and sign a prescription, note, and LOMN saying “patient needs custom bilateral AFOS”.
  • I’ve been waiting for records from one doctor for 13 months despite several verbal and written reminders to him and his staff.
#2: My two cents on the Epipen bull:
          As someone who is literally allergic to life (sunlight, heat, cold, stress, talking, meds etc) and must always have Epi on my person and has unfortunately had many uses of the autoinjectors I am pissed. But not just by Mylan (jerk face mcugly butts) jacking up the price of Epipens (500%), but the fact that I have multiple friends who have to make the choice between life-saving medicine, therapy, and treatments and feeding themselves or their kids.
And we aren’t even talking about those without insurance. Most of my friends are lucky enough to have some form of health insurance (even if its crappy) and are still drowning in bills and medical debt. There is not a single day that there isn’t a medical bill arriving at my house and that is just ERs, hospitals, and doctor’s bills. Plus medicine, devices, PT, testing, surgery, and prolotherapy (not covered by any insurance as it is “experimental”). I have been incredibly blessed with kick-ass insurance (although still a PITA) and to be able to stay afloat in the bills. Despite all kinds of preventative and prophylactic treatments, there is still only so much you can do to keep ahead of things and emergencies still happen. Epipens also only are viable for a year. They come in a 2 pack but most need more to keep one at school, one in the car, and one on your person. For most, it is now cheaper to go to the ER for anaphylaxis treatment than to use their Epipens. Honestly, all I got is “fuck you Mylan”. No excuses, epinephrine is cheap, autoinjectors are relatively cheap. Not to mention their tax evasion strategies.
#3: Depression
Since the people who 1) even read this blog and 2) read all the way til now and aren’t asleep from boredom are probably the people who care, I saved this one for last. As some of you have noticed, I’ve been dipping into another depressive phase. Depression and me are buddies now so it’s cool. It is also normal and a big part of chronic illness so don’t go panic on me. So don’t be alarmed if I’m a) super clingy and annoying or b) super avoidant and grumpy gills … that’s kinda just how it goes. See previous post RE: things you can do to help.
Aight. That’s all for now….

The EDS Bible

Finally it’s back in stock! This book is really the EDS Bible. It is written by Dr. Brad Tinkle who is largely considered one of the fathers of EDS and is very well respected in the EDS community.

http://www.amazon.com/Hypermobility-Handbook–Management-Ehlers-Danlos-Syndrome/dp/098257715X/ref=sr_1_1?ie=UTF8&qid=1458184415&sr=8-1&keywords=joint+hypermobility+handbook

I have been waiting for months for the book to come back in stock (no idea why) and it is finally here! I did my first breeze through it and it looks amazing. It not only details EDS, the many conditions that are comorbid (come along with), and research but also treatment plans, PT options, medication and supplement suggestions and much more! Highly recommend for EDSers and caregivers as well as medical persons who want to learn more about EDS. I will post again later once I have read more.

When Your Wellbeing Gets Lost in the System

          I have been very fortunate to have a some brilliant minds working to keep me alive and improve my quality of life. Two of my specialists are so good at what they do that people come from all over the world to seek out treatment from there. I merely have to get a 30 minute ride. I honestly don’t know where I would be without them. That being said being a patient of these doctors who are at the top of their game and are leaders in their field has some serious downfalls.
Here are just a few:

  1. Months if not years of wait time for a new patient appointment, if they’re even accepting new patients
  2. Long periods of time in between visits after becoming an established patient
  3. They’re stupid busy between conferences, surgeries, case load, and teaching
  4. They don’t communicate with the rest of your team whether due to their schedule or their ego this can become a big problem
  5. I can’t remember the last specialist who was knowledgable about my rare diseases who took insurance
  6. Their offices are usually administrative nightmares
  7. You usually have no one to go to (with cases like mine…rare meets complex and misunderstood) for a second opinion. You’re second opinion become Google which can be dangerous.
  8. You will wind up having to try and get urgent medical care from Emergency Departments which are neither equipped to deal with your…”specialness” or too open to the concept of you knowing more than them about your conditions/ treatment needs.
        As great as it is to have some brilliant minds treating you, you wind up bearing a huge load on your own. Anyone with rare/chronic illnesses can relate to the feeling of their care getting lost in the system. I have been utterly dumbfounded by how unequipped our healthcare system is to deal with the chronically ill. According to the CDC, as of 2012 about half of the adult US population had one or more chronic illnesses. Thats roughly 120 million people. One in four Americans have two or more chronic illnesses.
      I wanted to write about this for a couple reasons, but the main reason being in response to an incident that happened a couple of weeks ago. Over the years I have slipped through the gaps in the system here and there but most of the time no major harm resulted in it, just frustration and longer waits. This time was different.
      It started like many incidents nowadays do, I had passed out in the shower and woke up in the ambulance three hours later (it was also 3am) with IVs and monitors galore and a big shrug given when I asked what happened. Upon my arrival to the ER I was fairly quickly assed by a resident and hooked up for monitoring by a nurse and left there. Anyone who has spent enough time in ERs knows that the worst thing that can happen is still being there during shift change. 0600 roles around after a couple of hours staring at the ceiling (I was in a cervical collar and left lying flat on my back) and one tech coming in to take an x-ray I realized there was no way I could fly the coup before shift change. The doctor comes in to tell me my ECG was abnormal and they’re waiting on blood work results (which they never drew). He told me my new doctor’s name and that he will come in when he gets here and repeat the ECG. If its abnormal again they’ll admit me but if it’s normal they’ll send me home to follow up with my cardiologist. 0900 rolls around, no doc, no repeat ECG, no bloodwork. I call the nurse. She takes the blood seemingly pissed off that I was checking up on things trying to get answers. 1130: nurse comes in and hands me my discharge papers saying she can’t find any of my four doctors to talk through them with me but they need the bed so they’re discharging me. I ask about the repeat ECG. She shrugs. I get frustrated and leave.
          I call my cardiologist and he agrees to see me later that day. He does an ECG and it was once again abnormal. He reviews my medications and asks me about one that I started the week prior per orders from my GI doctor. “This medication has a blackbox warning for causing a prolonged QT interval which is very dangerous. Your doctor should have never prescribed you this. You should not have been discharged. You need to stop this medication immediately and go see an electrophysiologist.”
Note to self: need to find new GI doctor.
Note to self: call cardiologist when before taking any new meds
Note to self: stand up for yourself in the ER
Note to self: you need to be on your toes, you’re health and safety is your responsibility

        Several doctors appointments later and the issue was addressed with relatively few repercussions (lucky compared to what the situation could have been). I now have to get a heart monitoring chip inserted above my heart to collect data and try and figure out if there is another underlying condition.
        It scares me to say I got lucky because that means things could have gone way worse. I’m constantly worried for the day that I won’t get as lucky. When will it be? Will I be alone? Will I get to the ER but have it be dismissed?