More Tales of Insurance Nightmares

PERSONAL POST: This is a taboo subject but I’m going to talk about it because health insurance is and extremely important topic. As most of you know I have a neurogenetic disease. I am on about eight medications a day, a monthly shot, and Botox every three months for horrid migraines. My monthly shot is lifesaving, point blank. Without it I am bedridden. Without three of daily meds it’s the same, unproductive, bedridden, end your own life kind of pain, seizures daily. I’m not being over dramatic, it is reality and was a reality from 2008-2012 you can ask any of my friends from that time.

My monthly shot is over $1000 a month w/out insurance, my other three lifesaving meds are about $300 and $500 each without insurance. Then you can add on mandatory doctor visits to check on my pacemaker, and neuro stuff.

Since I am a full time student (13 credits this semester 16 next) and I intern and volunteer to increase my training; I personally can’t work with my illness on top of that. Even if I quit interning and volunteering I would only be replacing that with about 13-15 hours of work a week. Not enough to make insurance and the price of Obama care didn’t make it worth it, I would literally be working for insurance with change left over. (yes I talked with gov. advisors they told me not to work that it wasn’t worth it) If you are thinking that doesn’t make sense remember I’m single, and have no children. We don’t get the same perks you married parents do. They make more money off of us to spare you.

Yes, I could cut time at school, but I would lose my full ride scholarship. That kind of defeats the purpose of saving money. Instead I opted for being labeled a disabled dependent and be on my parent’s insurance. Now all together my meds cost about 200 bucks a month because my rock awesome insurance.

Today I got a call that even though we called the insurance twice in the last six months to make sure I was still on track and covered, that they ended my insurance coverage at the end of June. Just like that, without any warning… even though my dad paid for the benefits package that covered me all year. Thankfully, because of my dad’s position and our now ten-year history of dealing with insurance we know how to deal with this. We know chances are I will get back on insurance and everything will be okay even though it isn’t still certain. However, millions of American’s are not this lucky, I’m not saying universal healthcare is the answer either because my friends in other countries with UH aren’t allowed the lifesaving medications either because their version of the FDA does not allow them. It’s how they get around paying for chronic patients. What I am saying is our system is messed up, it’s in disarray and something needs to change. For instance, the company that makes the $1000 monthly shot I take has made a deal with select med, they only get charged $100 for it and I get charged $10. Why? How can they do this? Why does the cost of healthcare change depending on the people you know?

Here are some vidoes on Ataxia I have cerebellum ataxia type 2. 

This is mid to advance stage

I am oh so Thankful....

I am grateful for my disease.

Yes, you read that right, so very grateful.

It has taught me life lessons that God had been trying to teach me for many years and I wasn’t getting it. For instance, before I got sick, I wanted to be a powerhouse, dignified, kick ass, business woman. I was going to teach people with disabilities just long enough to get a feel of the educational system then move on to researching autism in the neuroscience field then go on to change legislation, education blah blah blah.

I wasn’t going to be a mom, I wasn’t going to stop and smell the roses, and I cared more about being known a bad ass then the people I actually helped.

I took everything for granted, thought homeless people were uneducated because they didn’t care enough to pick up a book, jobless, because they were lazy, and homeless because they couldn’t balance a checkbook.

Don’t get me started on healthcare I was ignorant as …well.. I’ll keep it clean.

I thought minorities needed to get over their fathers past and move onto the present and that if they weren’t getting what we so called privilege white people were getting it was their own fault in some way or another.

Fat people were lazy and didn’t take care of themselves. People with drug and alcohol problems lacked control. On and on and on.

I thought me and my fine brain with my superior, Mensa level IQ meant many people around me were simple, not worth my time. Belittling people to their face with a side handed shady
compliments were a pastime of mine.

I was fake, like many people I grew up around in St. George, I thought that behavior was normal. I didn’t know what it was to be completely genuine. And loyalty was expected of my friends but if I was unloyal, well, there must have been a good reason.

I was a horrible, horrible, person.

I don’t think god gave me this illness, I don’t believe that’s how it works, it’s the luck of the genetic roulette, however I do believe God does step in when he can and helps things along. He didn’t step in and help my family and I find the right diagnosis, or medicine sooner because I needed to go through hell. I needed for people to take my ego and rip it to shreds. To help me understand the realities of this world. I needed doctors to claim I had Munchausen’s and not believe the very real pain was experiencing so that later in life when someone came to me and said, “I am hurting, I’ve been through hell.” I would understand the importance of believing them. I needed night after night, day after day of excruciating pain to humble and heal the horrible prejudices that were inside my soul. I needed to have to wear diapers, pee my pants and all over floors in front of total strangers so that I could learn humility and not care what people think. I needed my heart to stop over and over and over again so that I could get chance after chance to visit the other side and be thought the things I learned over there. I needed it to happen so frequently so that I wouldn’t confuse those moments with the other moments of DHT release.  I needed to know what it was like to experience odd hallucinations and memory loss so that I would be able to understand what it was like for some many people I now work with today, from schizophrenics, to people with dementia. And I need my bad days, like I have had this past week where I am holding on with every ounce of self control not to burst into tears because of the pain so that all this comes back and I am reminded how much better I am because of this illness.

I now know being a mother and caregiver to another human is more important than any other carreer or political appointment. I now know better then to walk into someplace I volunteer and think that I have something to offer them that’s more important than what they will teach me, and I have abandoned the arrogance that would have clouded my ability to do that.

I don’t take anything for granted. I realize if it wasn’t for my dad’s hard work, and our good luck that my butt would be out on the streets.

I now realize I was a bigot, prejudice beyond belief and a borderline racist. I was so blind to my white privilege it makes me ache inside. How can anyone be so clueless?

I now believe people battling weight problems and addiction are some of the strongest people on earth. Every day they don’t reach for that poison that will ease their pain is a small miracle. And a waist size has nothing to do with how active or physically strong a person is.

My IQ dropped two standard deviations, and then according to my last test went back up a little. That was the biggest humbling experience ever. My words don’t come freely, they are trapped in my mind and I can’t get them to their mouth, like a prisoner I am trying to free them and organize my many thoughts so that I can learn more to further help others. It’s exhausting and taxing. Those that can find ways to progress and grow around those barriers are the true genius.

My family and friends taught me true loyalty. I’ve met people along the way who have taught me how to be truly genuine and the blessing that comes when you are truly one hundred percent yourself every moment of every day.

I am now a good, strong person.

And it’s all thanks to my illness and God waiting until I was ready to heal myself. 

So, if in this moment you are struggling, for whatever reason stop and think, what am I supposed to be getting? I'm not progressing because...and if you can't come up with the answer pray for it. Become vigilant in not yourself, but what is around you, the answer is there, waiting to smack you in the face. Make sure your paying attention or else you will miss a great lesson and chance to become greater.

It's all Shits and Giggles till someone Giggles and Shits: Dysautonomia & Ataxia's dirty little secret

Us folk with autonomic dysfunction sometimes have a dirty little secret. I’ve mentioned it before but after my ataxia and dysautonomia buds have been asking more questions about it I’ve decided to talk about it.

As we lose control over our bodies we can have embarrassing moments all the time. Swinging our hands in the air, people think were drugged out on GHB or some other heavy recreational drug. We walk funny, we sound drunk but one of the worse is sometimes we gotta wear a diaper.

Incontinence is a very real very common occurrence. Many men and women endure it for many different reasons. Having children, stress incontinence, overflow incontinence, and this can be just in otherwise healthy individuals.

Normal pressure hydrocephalus, which is caused by an increase in intracranial pressure and not enough of it absorbing in the brain can cause it. One of the late stage systems of Friedrech’s Ataxia is UI.  However from what I have gathered from my doctors, incontinence can be common in patience with Ataxia because the nerves aren’t working properly. This is why for some people they can no longer feel down there as they use the restroom and they kinda have to guess if they are using the correct muscles or not. I’ve never had a baby but I’m told it feels similar to when a woman has to push after an epidural.

Here is a link to some information from ataxia.org.uk A GREAT site for more info on Ataxia:

Ataxia and Incontinence