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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