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

The Final Diagnosis!

I'm not Jinxing myself, i'm not. 

This is it. They have figured me out. 

I HAVE BEEN VINDICATED!!

Give me some Diamox and slap EA on my forehead 'cus this girls got Episodic Ataxia! Aren't those just lovely words?

After 9 years of my body getting more and more ridiculous the most amazing Nero Ophthalmologist has figured me out with help from my favorite Nero Geneticist. 2 powerful and amazingly brilliant women who put the men in their field to shame. Girl power!

Now what is it?

Episodic Attaxia is " is a group of related conditions that affect the nervous system and cause problems with movement. People with episodic ataxia have recurrent episodes of poor coordination and balance (ataxia). During these episodes, many people also experience dizziness (vertigo), nausea and vomiting, migraine headaches, blurred or double vision, slurred speech, and ringing in the ears (tinnitus). Seizures, muscle weakness, and paralysis affecting one side of the body (hemiplegia) may also occur during attacks. Additionally, some affected individuals have a muscle abnormality called myokymia during or between episodes. This abnormality can cause muscle cramping, stiffness, and continuous, fine muscle twitching that appears as rippling under the skin."

(you should see that muscle rippling it's AWESoMe!! so awesome it is almost worth the horrible pain it causes.)

They have been thinking this could be it for awhile but they had to take me off my beloved Baclofen to check if I still had a nystagmus and to see which symptoms came back.

I cried in her office I was so excited to tell her the changes i've seen, good and bad. And i'm so thankful for the hope i've been given because she was a doctor willing to listen and who refused to give up on me! The next step would be to get tested to see exactly which form of EA I have, (there are seven types) but I've decided against it. There are many reasons, one being cost, the other, is it won't change anything; but the reason why I decided not to get tested is because there's the good kind, and the not so good kind. I don't want to know my expiration date or learn that it will get worse. 

So i'm going to live my life day by day and strive to improve my quality of life with each breath I take. I'm at peace, and I'm happy and that's all that matters.

I was told it was in my head, that it wasn't real that it  wasn't as bad as I was claiming, that I wanted attention. There were days I felt alone, scared, terrified that the only way out was to end it all, but I knew. I had patience. And the pain is now managed and at a minimal because I didn't give up. Every time I wanted to I thought of my niece, of my brother and sister, of my cousins who are more like sisters, of my parents, of the education I have left. DON't GIVE UP!

And when you think you can't do it anymore just give it all over to your creator, your higher power, your peace-giver. 

This day forward I am going to refuse to let it beat me. Because I am a fierce powerful woman, who was given this oppertunity to prove that even when my own nervous system attacks me I push back and pull through. 

whatever your trials whatever your struggles you are stronger then you know. Go out there today, dominate, and kick some ass!

For more info (especially family members) Click here 
I plan on studding the genetic part more and will send all family more info once I get all the right information. 

Be Not Ashamed.....A little tale of why I overshare

Hey Friends!

Some of my family members have been getting questions about what’s been going on with me. And/OR how come I’m so open about my illness.

I’ve made the decision to be so open about what I have been going through because I want to take the stigma and shame away from having a chronic illness.

The stigma and shame is what causes a lot of the depression in our community. When things aren’t talked about people wonder if it’s normal for them to feel those feelings or experience what they are experiencing.

I have gotten over the shame and want to find the funny; because what we go through although some days is heartbreaking and irritating is pretty damn funny.

So instead of there being an army of us sitting at home in pain behind our computers I want us to unite and find the good we can bring to the plate.

We are as a whole an inspirational people, and if we keep what we’re going through a secret we won’t be able to help others who are not only experiencing similar problems, but people who are just struggling with the everyday ups and downs.

That’s why I have weird facebook status’, that’s why sometimes I over share. Because I have seen to many women and men going through what I am going through and they are ashamed about what their body has done to them. There is no need to be ashamed. 

Whether its Cancer or MS or Muscular Dystrophy or Dysautonomia etc. You are not your illness and you should not be ashamed of what you are going through.

The Best Lessons Come in Crappy Packages

I have a lot to be thankful for today. I’ve been on new medication since my diagnosis of episodic ataxia and it has been nothing but life changing. A literal fog has been lifted and everything is so clear again. I’m more active, I can stand longer, play harder, and be myself again. I had almost forgotten what that was like. This illness has been hard but it is also the biggest blessing I have had in my life. Without it I wouldn’t have been as compassionate, or understanding. I would have been arrogant, and felt little need to reach out to others for help. Before, I was too independent, to selfish, to close minded to understand what the important things in life really are.

This illness may have crippled my body at times but it has freed my soul.

I know what love is, what a true friend is and how to never take that for granted. I will now go to the ends of the earth before losing someone important.

I now understand that time is just a limit we humans place upon ourselves and although we should never take any second for granted, we shouldn’t be frustrated or rush those things that may need to take a little more time.

I have learned that family does not mean blood or family trees. I have cousins and friends, who are more like sisters, mentors who have become like uncles and parents who have become more like soul mates.

Last but not least I have learned what Gods eternal love feels like and how it can change a person. Growing up I thought there were more limits, if I was “sinful” or hanging out with others who “were a bad influence” he would slowly creep out of my life until I couldn’t feel him anymore. It has become the exact opposite. As I have embraced those who don’t live the way most deem appropriate, and ceased with judging others his love has radiated throughout my life. I am never alone on a bad night when my body is twisting and my head throbbing. I am not alone when I’m trying to push through the pain when I am with others and hiding how badly I really hurt. I am not alone when my mind is gone and I can’t remember simple things like the name of my dog or how to open a door. I am not alone when I find myself somewhere and I’m not sure where I’m at or how I got there.

Some may say why do bad things happen to good people. I’ve decided God doesn’t have control of the dice like we think he does. Sure, if he wanted he could change the outcome but then he’d be interfering with the laws of nature and free will. And as a God of science he just can’t do that, unless absolutely necessary. However he will hold our hands give us the tools and send us the people needed to get through those times.

My illness is a blessing, a nascence sure, but a blessing none the less.  If I were to say anything else I’d be kidding myself.