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. 

Behold the Bearded Lady

source

A bit of an update…

I’m in the midst of doing testing to see which particular kind of Episodic Ataxia I have. Because of this I am now off my beloved baclofen and it has sent my gastroparesis flaring up.

Just a little reminder Gastroparesis is when the muscles in your bodies digestive system work poorly or not at all. I am very lucky I have good kind of GP I just stay away from certain meats and whole grain foods and random things here and there and I’m fine.

However when I am off the baclofen it does get worse and I have to resort to a liquid and baby food diet. Every now and then my body will let me squeeze in a chicken nugget or processed hamburger but for the most part it’s applesauce and protein shakes for me!

The reason why they took me off the baclofen for the testing is they want to see how my body does at it’s “natural state.” Then they will have a few blood tests and hopefully we’ll have things narrowed down even more.

I’m also very excited because the doctors have agreed to let me continue to do the hormone therapy that swings my body into menopause. They do this because with Episodic Ataxia and many Autonomic diseases menstrual cycles can become very dangerous because symptoms get so much worse.

The down fall is that I’m starting to see signs of becoming a bearded lady, and I sometimes cry because the sun is beautiful that day.

The powers at be are intimidated by my disease still and say I shouldn’t work, but I’m still volunteering consistently at least 6-8hrs a week. I’m a lucky girl. For all I have been through it seems so small in comparison of what it could be if I were going through it alone.

Xo joami

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.

Update- What is Upbeat Nystagmus?

So it sounds like I got water on the brain.

 “I’m shocked.” She says in a monotone voice.

I also have a cyst in my brain stem. We’re not quite sure what or if it's messing up anything but I’m sure it up to no good.  I’m not really concerned about it. A lot of people have cysts in all over their brains. Right now they are more worried about the excess fluid.

Also a recent test has shown that my neurons are doing wacky things sending singles to one another in my brain stem.  During the test I blacked out and almost fainted, and my body did it’s beautiful contortions.  It’s not really new, news. We’ve known for years my body doesn't make enough of the correct chemicals to make my neurons communicate correctly hence the Parkinson like drugs.  However its cool I can point to a particular spot and say I’m broken there.

Also I got these sweet sexy glasses that are oh so ugly. A six year old told me I should try to wear them as little as possible. I got them for when my upbeat nystagmus is acting up or I have one of my fun migraines. I recommend them highly! They work so well I don’t care what I look like! They are these special pink lenses. So bizarre.

What is an upbeat nystagmus you ask? I’ll find ya a good video.

What is Mindfulness?

Work It Out...

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Embracing Meditation

Meditation is one of the best methods for healing.

Growing up if you would have told me I would be an advocate for yoga and meditation I would have laughed in your face. Two of my best friends used to love to meditate we’d go to a park by my friends house that had a beautiful little pond. They would sit with their legs crossed close their eyes and drift into their inner la la lands. First I’d fidget then I’d start singing in my head and within min I was up and throwing rocks in the pond.  Frankly I thought it was silly, but the joke was on me.  

Meditation is not for the “wo wo” tree huggin flower children of the world.

When you think of meditation if all that comes into your mind is a bunch of Buddhist monks on top of a mountain your not alone. However there are a many different types of meditation and “mindfulness” exercises as there are songs on your playlist. Here are a few of my favorites but I recommend you google and find the exercises that best fit your personality.

First thing is first. Always set an alarm if you are going to meditate. This way you can let yourself go and not have to keep interrupting yourself to check the time.

MUSIC

My absolute favorite type of meditation/mindfullness is “centering” myself through music. Don’t be scared if the phrase “finding your center” basically it just means find that spot in your mind where your body and soul are completely at rest and it’s like a cool breeze is running through your soul.

I turn the music up as loud and just rest myself into the music. Whether you just sit and embrace the song or let yourself dance as long as you are completely lost in the music and thinking of nothing else then guess what? You’re meditating.

If you find your mind wandering then focus on the melody or a particular instrument etc. Then just let yourself melt.

Empty Thoughts and “Post it’s”

My second favorite meditation is find a comfy place, someplace quiet, set your alarm and close your eyes. Relax

This is the hard part. Think of nothing.

Sounds impossible? Yeah I know. But every time a thought comes into your head imagine yourself writing that thought on a post it or piece of paper and then imagine putting it aside or the wind picking up the paper and have it dance away in the wind.

I know it sounds silly but I put the things I need to remember on post it’s and my negative thoughts on paper and pretend they blow away.

The more you do it the longer you will go without any thoughts. Then when your alarm rings you will be AMAZED at how wonderful and refreshed you will feel.

I recommend doing this before an important meeting or test if you can. You’ll perform so much better.

Ground Control to Major Tom (best way to manage pain)

Get comfy, set alarm, all that. The important part of this meditation is to relax and let your imagination take over. Whatever you imagine it’s right, each time you do it let yourself imagine more and more details. The first couple times you do this exercise you may want someone to read it to you.

Let’s begin.

Focus on specific parts of your body starting at your head, fingers or toes. Then focus on relaxing each part of the body. First your toes, then your feet, then your ankles then your calves etc. (if you are reading this to someone then specifically go through every part of the body)

If you don’t feel completely relaxed yet then imagine sand or water being poured into your body starting at your head or feet and is it fills up your body you feel the weight comfortably weighing you down.

When your relaxed imagine a staircase leading to a basement. Whatever you imagine, concrete stairs, wooden, brass whatever.

This staircase is leading to the part of your mind that controls every part of your body.

Imagine yourself walking down those stairs and with each step count down. 10, 9, 8…1

In front of you is a large door. Turn the handle and walk inside. This room is your bodies control room. Imagine all the levers, dials, and buttons. Each switch, lever and dial controls a different part of your body.

Where do you feel pain? Go to the dial, switch or button that controls that part of your body. Turn the lever you are now in control of that pain. Turn it down. Is your heart bothering you? Slow it down.

Let yourself spend time in your control room fiddle with your dials you are in control of your body.

Wait a few min.

When you’re done, go back to your door open it up and close it behind you. Now lock it. Only you are in charge of your body. Now walk back up the steps. Count every step and say to yourself “When I wake up I will be faster better stronger.”

10 when I wake I will be faster better stronger. 9 when I wake I will be faster better stronger….3 I am faster better stronger…1 I am faster better stronger.

Take a deep breath and open your eyes.

I have many more exercises especially ones that help center around pain. I will post them later.

In Honor of MLK Day

My Best Advice on Getting the Best Quality of Life with a Chronic Illness

Long story short, this is how I’ve stayed sane, healthy, and am coping with copious amounts of pain.

1.First I’ve memorized this poem/saying and say it to myself a hundred times a day:

“God grant me the serenity to accept the thing I cannot change, the courage to change the things I can and the wisdom to know the difference.”

2. I stretch every single day, no matter what.  Whether you feel like crap, or your body is going to break; or you have twenty places to be at one time. First things first. You stop, and get your stretch on. Stretching for people with Dysautonomia, MS, Parkinson’s, or people who just get leg cramps is extremely important. I can tell a huge difference between my days I stretch and those I don’t. I stretch consistently throughout the day. In the morning when I first wake up I go through each position. Then throughout the day when I get a moment to myself I do quick little stretches as much as possible.  My main stretches all come from this fabulous book called (bellow)

Stretching and Toning by Melissa Cosby

I love it because it’s spiral so it lays flat. It has instructions for several fitness levels so if my legs just won’t move like they should one day I can revert back to beginners and on my good days I can go to Advanced. I’m forgetful and ADD so I love that it goes into detail for each stretch but then in the back there’s a page that sums them all up. This way you can go back and make sure you haven’t forgotten how to do the stretches correctly and make sure you haven’t formed bad habits.

3.Exercise daily, no matter what. I see those eyes rolling. I know this is a hard one but here’s the thing. Even people with the most limited movements can find an exercise for them. For years I was told not to exercise because I would pass out. Then I was told to do it for three min at a time. And here’s what I’ve found. There’s this hilarious old lady that comes on PBS every morning at 9:00. She sits in her chair and exercises. Sure you feel dumber then a playboy playmate at a Mensa conference but it does the trick. Also I have this awesome machine. It’s like a bike but you can stay on your couch and pedal, and then you can lift it up on your table and work on your arms. It’s fantastic.

 

I found mine at Walmart.com

4. I’m now a yogi. I do Yin Yoga almost daily. I should do it every day several times a day, but I don’t.  Don’t give me that look! I know it may sound crazy but if you really give into it and your body can heal itself between bad days. It’s amazing! Plus for the hours right after each session you’ll be standing up straighter then the Eiffel tower! Here are my favorite videos:

Yes I know they seem stoned...but doesn't that make it more fun?!

5. Learn to meditate. There are hundreds of methods out there, find one that’s right for you. I have a few favorites look HERE

6. On your bad days get out of bed! Even if you can’t move, your joints are killing you, and each vertebra of your spine screams out in a pop as you move upward. You got to continue to move your location. For instance, in the morning, move from your bed, to the couch. If you need to keep your favorite pillow and blanket, but just make sure you get out of bed. Then a few hours later move from the upstairs tv room, to the family room. It’s amazing how much better you’ll feel on those bad days if you push yourself to change your surroundings even if it is just from one room to another.

7. Try to get your mind off your pain while excersizing and getting ready. The reason why it is so hard to be motivated in the morning is you are dreading that pain. So instead of watching your favorite tv show while on your butt at night. TVo it or watch it on hulu as you are getting ready for the day and doing your stretches. I always have whatever show I love on while I stretch and I watch my horrible guilty pleasure, TMZ (you can get the episodes on their website) while I do my hair/makeup/and get dressed. It distracts me from how much it hurts to do those tasks.

8. Find your outlet. You have to find things you can do every day besides watching tv, no matter how you are feeling. Make sure these are things you love to do and make you happy. Here are some of mine:

• My music. It’s amazing how much music can uplift you and get you motivated. On days I don’t think I can do my stretches or go on a walk my music usually does the trick to at least get me motivated to walk to the mailbox and back!
• My “Happy journal.” I keep a journal of things that makes me happy. It’s an 8x8 scrapbook of random things that make me smile.  Scrap-booking and just looking at my scrapbooks can put me in a great place. If you don’t have the money or movement in your hands to scrapbook an easier and cheaper way to go is Costco’s online photo books. There are other websites that do great scrapbook pages but Costco’s photo books and scrap-booking pages come out to costing less than if you were to print out each of the pictures individually.
• Then I keep a normal everyday journal but I do more doodling then writing.
•  I send postcards to my friends. Letter writing is such an important lost art I think. So I write letters and postcards. It’s also a good practice to keep you grateful. Writing thank you notes and love notes to your friends and family really helps you focus on why you should keep fighting through the pain.
• On my good days I do photography so that on my bad days I can sit in bed or on the couch and have fun photoshopping them.
• I’m not a big fan of facebook, but I’m obsessed with this website called polyvore.com. It’s so fun! Basically you make little fashion sets. Sounds stupid I know but it’s my guilty pleasure.
• Some other Ideas are reading, blogging, painting, crochet or needle point, puzzles, brainteasers, soduku, playing card/dice/domino games with family or friends, cook, etc.

9. Get out and volunteer. As of right now I can’t work. My days are too sporadic and unpredictable so there’s no way I can hold a steady job. So I volunteer at a Women’s shelter a couple days a week for a few hours, and thankfully they are flexible when I have bad days. It’s perfect because for the most part I sit, but I’m still challenged to get up and help out the girls. Some days I’m on my feet the whole time. It’s hard but it’s good to push myself. Everyone there knows of my limits so if I say “that’s too much” it’s no problem. And since it’s volunteer work they are just grateful I’m there no matter what. I’m sure retirement homes, shelters, schools, and programs for persons with disabilities would be more than happy to have you.

10. If you know you can find a job that fits with your body and abilities go for it.Look for jobs you normally wouldn't, telephone operator, florist, receptionist. Even if you are worried that they will be put off by your illness. Even if they are at least you tried, but I think you would be surprised by how understanding some employers can be. 

11. My next piece of advice may turn you off but it’s really important you take it. Get yourself a councilor/therapist/shrink!  I will go into the importance of one in a later post, but for now look for  someone who specializes in chronic illness or disease. My therapist isn’t there just to listen to my problems, but teaches me ways  and gives ideas to improve on my quality of life. It is also very, very important that you have someone unbiased who you can really confide in when you have an illness, because they understand all 360 degrees of what it’s like to have an illness, be a caregiver to someone who has an illness and be a provider or physician to someone with an illness.  It may take trying out a couple of specialists to find one who fits your personality and what you are looking for but once you find it they can really be a great asset in your life.

If you can’t tell, I love my therapist She’s fun and sassy and reminds me of a high school guidance counselor. Her purpose is to make me realize if my health isn’t going to change then I have to. She gives me ideas on how to improve my life. I’ll let you in on a secret; most of the ideas on this list were hers.

Which leads to my next word of advice...

12. Read this book:

I have read my share of self-help books, to spiritual books, trying to find the best way to edify myself. Other than the Holy Scriptures I can one hundred percent say, for me this is the best book for self-edification.

It’s geared for people with high anxiety, but it works with people with illness too. For instance it teaches you to take those bad thoughts you have about yourself and turn them from a feeling into an object that you can analyze. In doing this you realize what a silly thought, why am I thinking that. And then you can take your forefinger and thumb and flick them away. I now view my pain this way. I view it as an object instead of a feeling and though it’s not so easy to flick it away, pain doesn’t have the power over me that it used to.

It also teaches you meditation. Something I have been practicing for a while and found extremely important in my quality of life. There are some odd meditation exercises in here but just do the ones you find are good for you.  I will also do a post on my favorite forms of meditation, so look for that.

I’ll be honest It’s a heavy read, and you’ll want to fish through it fast. The first five or so chapters are okay to scan through just as long as you feel like you are getting a grasp of what he’s saying because he is laying a foundation, but it’s really important to take your time on the rest of the book.

Don’t be afraid to redesign the little assignments he gives you to fit your situation.

13. Count and organize your spoons. AKA Energy I will go in a later post, but basically don’t over do it. If you feel good one day don’t freak out and run a marathon. Otherwise you’ll crash the rest of the week. Plan out your week and save energy for tomorrow.

14. Last but not least. Confide in a friend. Don’t be ashamed to ask for help.

I live with my parents and they know what I go through because they see it firsthand every day. However my brother, his family and my extended family not to mention my friends in the past were kept in the dark.

It’s important to open up to them so they know the details of what you are going through. I hadn't really told my grandparents exactly how bad things had gotten, and they got a rude awakening when I was left needing their assistance to help me to the bathroom. These two were in their late seventies and had to basically carry me to the bathroom because I couldn't move the right side of my body.  I’ll spare you the rest of the details but it’s one of my more awful memories. If I had been honest with them and had a conversation on how they could help me I don’t think it would have really traumatized me as much.

I usually don’t talk about my illness with my friends much either, it just doesn't come up. I won’t let it. Even if I’m on the couch slumped over in pain we talk about anything else.

However, I've learned I need to give up my pride every now and then and talk about it. Usually we laugh about the silly things that happen because I can’t make it to the bathroom in time or fall over because my legs give out or how I threw up on my dad in the Mexican restaurant parking lot. But we laugh about it because that’s how we have decided to view it. Not as sad events, but we force ourselves to see the humor in it.  So instead of, “oh (frown) It’s so sad you peed your pants, and then your dog peed on you.”  (Tear.) It’s “Oh my gosh!  That is so freaking funny I’m going to pee my pants right now thinking about it!” (Hyperventilating)

Here We Go Again

After a long hiatus I’m back. The main reason why I stopped writing was, well, when I originally started this blog I wanted to write because all the other blogs on Dysautonomia were so depressing.  Each entry from all my favorite blogettes were tear jerkers. So I wanted mine to be more uplifting and positive.

After my wonderful neurologist left my area and went to Columbia University I went through a deep depression because my new doctor, well to put it nicely he’s like an old crow trying to keep all his eggs warm he hasn't realized they've already hatched.

I wasn't happy and I sure as hell wasn't in a place where I could blog about what was going on in my life without it coming across as slightly “Hope is emo.”

( If you don’t get the reference youtube it.) Priceless.  Oh how I miss 2007.

I digress, after a long journey, months of introspection with help of yoga, a reality check, and a kick ass therapist.  I’m back with what I've learned.

When nothing is going to change, no miracle is going to take place you can’t just say you accept it; you must mean it. I used to think I did mean it, but I didn't. I was still waiting for a miracle drug or my symptoms to vanish. And after five years they didn't so I had to figure something out.

I’m not going to say I figured it all out, but hopefully the following posts of what I've learned will somehow help you in your life too!

If not, I hope I’ve at least made you laugh.

Advice for Loved Ones of a Major Health Challenge or Change

My grandfather had heart surgery this week. While waiting in the waiting room we ran into some friends from my childhood. It was so strange, but totally meant to be. They were there because a mysterious ailment made their mothers heart stop. She was rushed to open heart surgery and then rushed to the best hospital in the state for more surgeries. After talking with my friend for a little while I decided I should write a  few things to help others experiencing the same situation.

1. Be as patient as you possibly can.
2. Don’t be afraid of prayer, whether or not you believe in God, circumstances like this a prayer could never hurt.
3.  Always make sure while talking to the doctors there are at least two of you. One person cannot pick up everything that is said. Bring a pen and pencil and a buddy to all doctor consultations about your loved one.
4.  Obey the visitor’s rules. It may get really frustrating at times because you want to see your loved one at certain times or you don’t want to leave them. But too many people in the room or staying past curfew or going in when you have a cold could seriously complicate the progression of your loved ones recovery.
5.  It’s common for people who have had big surgeries like brain surgery or open heart surgery to go through a sort of hard core depression afterward. Help them realize this is normal, bring the light back into their life and be a good support for them to lean on during this hard time, but don't get frustrated by their behavior.
6.  Their life may never be the same, tell them it shouldn't be. My biggest obstacle and sometimes still is, is remembering how much I used to be able to do and how little I can do now. It’s the most frustrating part of the journey. I have realized I only have so much energy every week and if I over do it one day I’m out the rest of the week. This is important for you and your loved one to realize. They will want to get back to normal, but it may take time, for me it has taken years and I’m still not even close to what I used to be. So this is my new normal. I’ve accepted it. But it took a lot of time a lot of tears and a few broken plates to realize this.
7.  Recovery may take longer than expected. Your timeline and the body’s timeline can be two totally different things. Push yourself but don’t get frustrated if you or your loved one hasn’t accomplished what you think they should by your standards. Your doctor will step in and let you know if something is wrong. Otherwise enjoy the journey and don’t get mad at yourself. Anger doesn’t help the bodies progression
8. Their personality may totally change. It is not uncommon when something like this happens your personality takes a huge remodeling. I am the first to admit who I am now, how I handle situations, and my views on life are totally different than they were before I first got sick. When you have a loved one who is going through this change it may be incredibly confusing and frustrating because they are not who you fell in love with, or grew up with, or love. But guess what, they are. We all change throughout our life’s but events like this just make the change quicken. I’m reminded a rock slide that happened in Zion National forest years ago. Before the slide it was well established in the scientific community that rock formations and canyons take hundreds of years to be made. But after this unique rockslide the entire areas look changed. The slide made unique formations broke an arch into a hodo, and a mountainous area into a canyon.  All these things that were previously thought to take years to happen took literally a few min. Your loved ones personality may be this drastic, but under everything, they are the same person, so embrace the new them. If they have traits that are now considered dangerous behaviors get them help, otherwise try to accept the new them.
9.  Let them know you are there but give them space. When your life changes like this, a new self-awareness occurs. Your loved one may need that alone time in the hospital and during recovery to help them find themselves again. Don’t take their dismissals personally. Their life has changed, let them find stable ground again. 

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