#chronicdisease

VERY IMPORTANT PLEASE READ!!!

The answer isyes,they could if they don’t know you have AS. Click the link to read this article and make sure you have something on your person that says “Ankylosing Spondylitis: Brittle Spine Disease”.
And then volunteer to educate YOUR local First Responders on the proper protocol for AS patients.

I want to start off by acknowledging how fortunate I am. On top of being in a good place financially, I also have top notch insurance.

But I’d like to tell you a story about how that doesn’t make one shit of a difference in today’s America.

I have a chronic illness (rheumatoid arthritis), and coupled with the asthma I’ve had since childhood, this pair makes getting a cold or the flu a combination of pretty fucking terrible and terrifying. There are times when I’m sick that I worry at any given moment I suddenly won’t be able to breathe. Everywhere I’ve ever lived, the first thing I do is map out hospitals that take my insurance in case I have to rush there for emergency breathing treatments. Sometimes I wake up at 3am with a heavy, congested chest and wonder if I need to wake up my boyfriend to drive me to the emergency room.

Because of these issues, I applied for a nebulizer from my insurance company. A nebulizer is a heavy-duty air compressing unit for asthmatics that delivers an intense dose of medication. From the age of 7 to 24, I used one of these units. I used it so much that I wore out the motor. Getting this nebulizer cut my emergency room visits in half. It was a godsend for my family.

When I was diagnosed with RA, I applied for another unit. I was getting sick all the time due to my compromised immune system, and I wanted to have a nebulizer on hand in case an issue with my asthma arose. Since the age of 28, I’ve applied for a nebulizer 4 times. I have not once been able to get it approved.

Last year, I tried one more time. Why not?! I had brand new insurance! And happily, I managed to get the medicine that goes inside the nebulizer approved! A box of 150 doses of albuterol shipped to my house the same day I got a notice that the nebulizer had NOT been approved.

What. The. Ever. Loving. Fuck.

Why? I have a history of asthma. I have autoimmune. I have 150 vials of albuterol sitting on my front fucking porch! Why?!

The explanation I received was that it wasn’t deemed critical because I could receive a nebulizer treatment at a nearby EMERGENCY ROOM. An emergency room nebulizer treatment would cost me upwards of $300; an at-home nebulizer treatment would cost me 10¢.

Today, I’m sitting here with in the midst of a terrible flu, having finally broken through a 100° fever, and I found myself wondering if I should go to the emergency room for a nebulizer treatment because I’m having trouble breathing. And then, in a desperate daze, I find myself cleaning out my old essential oil diffuser and filling it with liquid albuterol doses and saline solution and sitting in the mist it’s spewing out while I do deep meditation breaths and try to inhale this weird patch of medication provided by a discount Amazon product because the insurance I PAY FOR won’t approve a life-saving machine I need.

This is part of why I care about socialized medicine more than anything else. The number one cause of bankruptcy in America is a bad medical diagnosis. But like I said, I’m fortunate. Unfortunately diagnosed, but fortunate. In a state of frustration and anger, I spent the rest of evening searching for a nebulizer, which I just paid for out of pocket - no problem. But that’s me.

But sure, tell me more about how we need tax cuts for the rich.

If you would like to hear my diagnosis story, please watch my video, but allow me to give you a brief explanation as to why I am trying to raise money. I have been diagnosed with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, chronic migraines, sleep apnea, Raynaud’s, chronic fatigue, and chronic pain, along with a yet to be fully diagnosed GI problem (basically I can’t eat anything without severe pain, bloating, and running to the bathroom every 10 minutes.) 

My mom has been doing everything she can to take care of me, but the unpaid bills are piling up, and I am now needing a power assisted wheelchair, a new set of ring splints, and I am trying to get a service dog for mobility assistance and medical alert. Being that we are already in debt from medical bills, our only option is to try crowdfunding.

I would greatly appreciate it if you would share my story.  I am trying my hardest to keep fighting this condition, but I need some help to get some very important aids that will greatly improve my quality of life, and my ability to participate in life again. 

Ihttps://www.gofundme.com/f/gqqv9b-help-me-fight-my-rare-disease?fbclid=IwAR2o-6qxbbGFA27n9CQhcxBv8TrlC8OILGFfVN8oyG0aFlh1Xd3OTQ7nWlI

Have you ever felt guilty for not talking about your diabetes with your loved ones?

Have you ever felt like they just wouldn’t understand if you talked about it?

You should talk about it anyway.