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.