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?