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.

Everybody's a Critic and Everybody's a Medical Specialist

Self diagnosis is bad enough-when you find yourself becoming a hypochondriac over every new oddity you find out about your body you can drive yourself crazy. Dude, sometimes a lot of mucus is just a lot of mucus, a skin tag is a skin tag, and a pain in your side just means you slept funny.  But the one thing worse then self diagnosis are “friendly diagnosis’”

Example 1:

THEM: “I don’t know, are they sure you have episodic ataxia, I was watching Mystery Diagnosis and a guy on there had your exact same symptoms!”

Example 2:

THEM: “Have you tried Esenssial Oils? I think the reason why you are so sick is because of all that medication you are on, you need to choose a healthier alternative, try it you’ll see a world of difference.”

The thing that drives me the craziest is when you become psychoanalyzed. If you’re tired cus you didn't sleep the night before and you are in pain, people think you’re depressed.

I understand these people all are sweet and most of the times have the best intentions at heart and for that, thank you, I really appreciate it. But unless you are a doctor that has access to all my medical records, let’s keep the conversation to the fun stuff shall we?

Within the Bended Light

So there is a story going around you have probably seen about a woman named Brittney who has chosen to take advantage of the death with dignity law. There is also a beautiful letter written by another woman who is begging Britney not to commit "suicide." It's prompted me to just say this:

The beauty life on earth brings to the spirit mind and body together as one, is one that if it were to be described as an action, I would compare it to that of the combination of the force of fission and fusion. Similarly, when the mind body and spirit begin to separate it is one of the most humbling, spiritually revitalizing experiences one could have.

The way life, colors, light and emotions were once perceived seem nothing less then stunted. You look back on life and realize you've been living in the first ten min of the black and white sequence of the Wizard of OZ. The every day life you once lived, now seems so silly, dark, and broken. I miss those times I lived in-between the light and was able to witness the colors and emotions with the greatest intensity of vibrations that one could imagine.

I miss being bathed in music the way one feels standing beneath a waterfall. I miss knowing, and understanding things and having that knowledge feel like a nice warm blanket next to a winters fire. But most of all I miss the love and freedom from pain. I guess that's why I sympathize with Miss Britney, loving the thought that she doesn't have to suffer the pain and confusion that comes before the light bends. And as Kara points out there is something beautiful that comes before death within the grace of our Heavenly Father.

I don't know which one is right, all I know is this: when it comes to that time in your life, whether you have warning or not, don't drown in fear. Release yourself into the arms of His love. How do you do that? Pray, and ask. The calm and peace that will eventually come over you, maybe not at first, but eventually, will be the most beautiful, breathtaking experience you will ever have. Every strong emotion, every oz of love you have ever felt will be rolled up into one big overflowing blanket of peace, heavens love will surround you, then you'll see the colors, and the light will bend. After that I do not know, but I do know it's nothing short of glorious.

Brittney's Side          Kara's Side

I Am So Smart...SMRT

I’m starting to realize more and more the most upsetting thing about my illness is not the pain, or the weird walking, or being limited how much I can work or even having to get a ride everywhere I go. The most upsetting thing for me is remembering what my mind once was, and comparing it to what it is now.

For some reason when writing I seem to be able to get my point across okay, and what I want to say comes out pretty easy…most of the time. However in verbal conversations, no matter how short or long, how deep or simple minded I find myself having so much more difficulty.

Explaining myself to others is sometimes pointless, trying to remember the names of certain things or spitting out a phrase when I need it has become like I have a mind stutter.

I either have a hard time getting it from my brain to my mouth or I have a hard time finding the correct verbiage all together.

Then there’s the intellectual side of things. This past week I had to do more Work Ability testing to see if my mind and body are ready to go back to work and school permanently. To think that I was once considered a genius makes me sick. I look at the patterns and puzzles and remember my old IQ testing and how simple it was for me to blaze through them with ease. Now I stumble through everything from the puzzles, to the fractions, to the memory testing, to the problem solving.

I have hope though, I know that if I continue writing and reading while I use Kahn Academy, it I’ll slowly rehabilitate to what I was.

They say the slices of Einstein’s brain they preserved showed neurons and pathways that were as healthy as a twenty year olds even though he was in his 70’s when he died. They think it was because of his constant “mind experiments.”

I’ll get there. I have to, it’s my Everest. My faith, my intellect, and my optimism and my quirky personality is what makes me, me. If I don’t find that girl again, I don’t know if I’ll be able to completely accept who I am.

Which sounds stupid, I know. I might as well be a twelve year old girl saying I’m not good enough because my eyebrows are plucked perfectly. But understanding the world only through feeling leaves you unguarded. Although intellect is by far the lesser of the two you must have both to truly understand this world and the life ahead. 

Love your Imperfections

"Imperfection is beauty, madness can be Genius, and it is better to be absolutely Ridiculous than absolutely boring."

When it's Time to Go

There’s another angel on the streets of heaven tonight, a little man who I knew from volunteering at Muscular Dystrophy camp.  Tonight on facebook I’m seeing many sad notes to our little guy, all sent with love and hope and condolences for his family.

The lingering clock over our heads is the hardest part of having a chronic illness. It’s something that every human has but we are more aware of it because we don’t have the pleasure of taking each day for granted. We don’t have to wait until an unexpected death of a loved one or a tragic act of terrorism to happen for us to realize this life is fragile. Our timer could erupt at any given moment.

This is a curse and a blessing.

A curse because for some you know you won’t live long enough to see certain events happen in your loved ones lives; graduation, marriage, becoming grandparents, anniversaries. And because of this you subconsciously or sometimes consciously distance yourself from others. You become one of those dooms day preppers getting your things in order, just in case.

I don’t know how to help you stop the worry and fear, but stop .

When my niece was born I was at my worst. This beautiful bundle of wide eyes and smiles was now in my life and I hadn’t loved anything that much ever.  She would stare at me with her great big eyes while she held onto my thumb and never looked away. I felt like her spirit was somehow talking to my soul and I would often find myself weeping.

Weeping because I was so grateful god saved my life all those many times my heart had stopped, thankful that I now had my pacemaker so I could have this moment with my ray of sunshine.

But I was also terrified. Terrified that every visit would be my last, because my body would give out or because I wouldn't be able to handle the pain anymore and I’d have to give up.

Those moments that should have been filled with happiness and peace were filled with frustration and anger and worry because I didn’t know if I was going to get to be with her long enough to see her grow into the sweet angel she now is.

It was a waste, I didn’t need to worry. And even if my time was to come and I wasn’t to see her grow here on earth I would still be angry I spent those moments with her with those feelings eating at me inside instead of just letting myself get lost in the beauty of her soul.

Plan if you need to, but don’t let those moments take over your life. Let yourself feel the fullness of love from the world and people around you.

 when it is your time to go you don't want to associate those sweet memories with your worries, you want to be able to take your bow and know without a doubt you loved, lived and laughed more then you ever feared. 

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.