Dystonia MOVES Me: Reaching the Un-Diagnosed

September is Dystonia Awareness month and therefore I feel compelled to share my story about living with dystonia.

I was in college when a doctor scribbled ‘dystonia’ on a post-it note. Although they said it was just a fancy word for ‘jerking’, I held on to this scribbled note as if it was a winning lottery ticket. I tucked it away in my wallet and pulled it out anytime I met with a new doctor. Whenever I felt cheated by my body because it wouldn’t behave, as I desperately needed it to behave, I would pull out that scribbled note and cling it tightly to my chest. If someone said harmful words about my head bobbing or mockingly mimicked my neck contracting, I found comfort in the word on that was scribbled that note, and would whisper to myself, dystonia. I held on to hope, I held on tight to a crumpled post-it note, because that scribbled note helped me feel in control when physically everything felt out of control. At the time I had no clue that dystonia was actually Dystonia with a capital ‘D’, a body movement disorder. No, it wasn’t until my late 20s that I finally found out about Dystonia and was shortly after diagnosed with Dystonia.

My doctor confirmed my diagnosis of Dystonia in the same conversation that she confirmed I was pregnant with my daughter. For me, the two actually go together, dystonia and pregnancy, because my form of Dystonia is genetic. Shocking, yes, the news was alarming. The day it was confirmed that life was forming in me was the very day I began to more clearly understand how I was formed.

A diagnosis is affirming. It’s a revelation into how your body works, or doesn’t work (either way that you want to look at it). I am incredibly thankful to have a diagnosis. After receiving my diagnosis, it’s been a dance of embracing the diagnosis and yet not being defined solely by the diagnosis.  I am a member of a few online communities related to Dystonia. It’s unfortunate to hear that for most, including myself, the journey to a diagnosis is long and full of many detours, much time, resources, and energy spent chasing a diagnosis only to have it fall short and become a misdiagnosis, repeat, and repeat, and repeat. In fact on the road to my dystonia diagnosis I was surprisingly diagnosed with an autoimmune disease, prescribed many prescriptions that caused a slew of unfortunate side effects, one that temporarily altered my vision (yikes!), and had a few medical professionals proclaim, “its all in your head.”

Most people who talk with me about my dystonia genuinely care for me. They are kind people and they are ignorant people. I write ignorant in the simplest way, I know it is more often used in a condemning tone – that is not my intention. Maybe, uneducated would be a better word. Obviously Dystonia Awareness Month exists because the vast majority of humanity doesn’t know that dystonia exists, including and unfortunately many medical professionals. Therefore, I try to remember to not take personal offense when people acknowledge my dystonia, whether they are plain curious or unfortunately hurtful. Dystonia has taught me that humanity (all people no matter their religion -or no religion-, race, or status) can be extremely kind and considerate. And therefore, Dystonia has helped me to remember to also be kind and considerate, for that I count myself fortunate to be diagnosed with dystonia.

I can’t say that dystonia is difficult to overcome because unfortunately there is not a cure for dystonia – albeit there are great treatments, not many which are available to me due to how my form of dystonia manifests and my stage in life. However, I am extremely fortunate compared to other people with dystonia, which is why I hesitate to say that having dystonia can translate into something completely and wholly good. The saying goes, when life gives you lemons then make lemonade. Not everyone with dystonia has the opportunity to make lemonade. They are lacking treatment and vital support from their community. Even more, many do not even know that they have dystonia, they continue to walk in a dark fog. Treatment and inclusion could be an inch away from where they are standing but they don't even know to reach out and grab it.

I continue to struggle yet I do not need as intensive treatment as others, and I am fortunate to have many supportive people in my life. For me, making lemonade would mean living in a body that remains to struggle physically yet choosing to be brave and include myself in society. When I consider this challenge, I continue to return to an article titled, Dystonia Collateral Damage by Noel Valero. Among a few other things that drive me to openly write about dystonia (which is a mountain of challenge, one that I put off last year) and to insert myself into a society that knows almost nothing about dystonia, is the drive to fight against furthering this collateral damage. I long for others with dystonia to know that they are not alone and even more I hope that one day soon dystonia is easily recognized and accepted by all humanity.

“Many people with dystonia are caring, wonderful people but are virtual recluses because of dystonia and lack of awareness. They are out of sight and out of mind and their isolation makes us all collateral damage. We are deprived of their company, creativity, love, and friendship because they struggle alone with dystonia. We need to remember that they are our friends and family who should not face dystonia alone.” (I highly recommend the reading full article - click here.)

Today for the first time my daughter asked me a question that I always expected her to ask. Truly, I’ve been waiting for her to ask this question since before she was born. I’ve wondered at what age she would pick up on my dystonia. She will be four in 4 days and just today asked for the first time, “Mommy why is your head moving?” Kids are curious, in the cutest and silliest ways. Also, they are persistent. They want the long answer, they want the true answer, and they want the comforting answer to all of their questions. Adults are not that much different than children in that sense, especially when it comes to our physical health. Kids are just more courageous and verbally ask their questions. Today I was thankful that I was able to provide my daughter with an answer to her question that met all of the above criteria. The long-and-short answer is that I have a body movement disorder called dystonia. This diagnosis was confirmed after much testing and even more doctor appointments. As sure as I am that I have dystonia, I am sure of one thing, my form of dystonia is not life threatening, just life altering. And there you go, that is the answer I gave to my 3-almost-4-year-old daughter. As an addendum, I told her that there is only one other thing to which I am more confident, which is that God formed my body, He is my creator. Therefore, diagnosis or not, my identity is in Christ alone - BUT it sure is great to have a diagnosis, a gift which I thank God and my doctor for providing.

Picture of me holding the Dystonia Moves Me Challenge sign 

If you want to learn more about dystonia or are interested in furthering research for dystonia, go to the Dystonia Medical Research Foundation at https://www.dystonia-foundation.org. I found DMRF shortly after I was diagnosed with dystonia. Next month I will finally participate in my first dystonia awareness event with DMRF! Also, if you are a medical professional with offices near Des Moines, Iowa, I would be thrilled to provide you with dystonia awareness materials. You can email me at emilyafontenot[at]gmail.com

Heeding a "left-field" calling

Last spring it became unexpectedly clear that Jon would transition away from his current position at church. When something unexpected happens it can bring up a slew of emotions, fears, and hopes. This was the case for us, to the point that it was difficult to put into words all the emotions, fears, and hopes that were running through our hearts and minds. Therefore, even writing this blog is a challenge yet, a significant change has occurred for our family and it is something I want to share. Also, just wanted to clarify that Jon was not fired.

It is hard to explain what it is like for my spouse to work in ministry because I’m not a seasoned veteran. Yet I am sure of a one thing, my husband’s career transitions and job search process, is different than most others. Seriously. In what other field does the employer interview the spouse? This unexpected yet clear calling by God to transition away from our church impacted our family in many capacities.

The saying goes, where one door closes another one opens…but what do you do between the one door closing and then one door opening? Initially we thought that this unexpected transition meant God providing us an opportunity to return to the motherland, Texas! Fuel was added to the fire when our house sold after only ONE day on the market! We were trilled – selling our home was one of our biggest concerns! (Thanks to God doing amazing work through our realtor team we made a small profit from the sale too!)

Family and friends rallied around us during this in-between time. I knew people were praying for us, I heard people weep with and for us, I saw people genuinely concerned for the things we were concerned about – all of which comforted us. Additionally, our church provided essential support to us, which was a beautiful thing to experience. Where there could have been strife there was peace – something that I know is not always the case in these situations.

One day during this time I was skimming the headlines on CNN – something I do often. I came across an article about California, while I cannot recall what the article was conveying, after reading the article I remember light-heartedly praying, “Thank you God that we don’t live in California and please may you keep us from ever having to live in California.” Just being honest! (I think the article was on the drought and how it is systemically affecting the quality of life in California.)

Well, months later, here I am preparing to move to California! Jon will be serving as the pastor of a church in the San Francisco area starting in late August.

God opened a door and though it was not in the location we asked him to, we are grateful for the opportunity he has provided. We are excited to work with this church.

So what would compel us to follow a calling that I believe came completely from left field? The people of course!

All along I have prayed specifically for God to lead us to a church that would value and support us just as much as we would them. I know this will be the case! Diversity was another aspect of the community that caught our attention. This day it is common for churches to claim to be diverse yet this church genuinely is diverse and is a reflection of their community – something we deeply respect and desire. Another critical aspect about this church, something that we really wrestled with, is that it sits in area of the country that is very opposed to the Gospel. Surprisingly in the end this drew us to the church. We have learned quite a bit about the community, the good and the bad, and look forward to form relationships that we pray will glorify God.

It is difficult to again leave behind family. We really were hoping that the pain of leaving Chicagoland prematurely would be eased by a long-awaited return to Texas! And yet, here we go, back out to an unknown area, and this time we are further from family. Leaving the familiar does not come without grief.  Yes, excitement too, but that is easy to talk about! On the cusp of so much change, I find these lyrics comforting.

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
(Hillsong)

I am reminded of the Dr. Seuss Book, Oh The Places You Will Go. I imagine God reading it to me and then asking, “Whom Shall I send” as he did to Isaiah.

Here we are, Lord. Thank you for sending us.

Baring all about my breastfeeding experience

I promise no nudity, rants, or lobbying. Just want to reflect on my treasured breastfeeding experience.

Prior to Amelia’s arrival I prayed often for God to give me the ability – no, the opportunity – to nurse Amelia. My growing breasts were helpful reminders to pray! As they grew so did the length and frequency of my prayers! I was not comfortable with expecting “nature to takes it’s course.” I knew too many women that were unable to nurse their little ones. Additionally, I have two chronic illnesses which threatened my hope in God’s provision.

Threat #1: Sjogren’s Syndrome, an autoimmune disorder in which the glands that produce tears and salvia are destroyed (that is just the flagship symptom). You can easily pick out a nursing mom because their constant companion is a jug of water, beside their little one of course. For me, a jug of water is a constant companion, despite my little nursing parasite! Women are typically not diagnosed with SS during their childbearing years. Therefore, there really is no research or advice for nursing moms with SS. I really did not know what to expect. My Rhuemy didn’t know what to tell me. Fearing the unknown – yes that definitely was me!

Threat #2: Dystonia, a movement disorder characterized by involuntary muscle contractions. A relaxed mother is essential to the nursing process, studies prove this is true. My body is rarely relaxed. I often wondered – no, worried – how it would work. What would Amelia do if she was nursing and then all of a sudden I had one of my dystonic storms? (I am happy to say that a baby properly latched is stuck to you like a tongue stuck to a frozen flag pole.) Again there was really no research or advice. I asked my Neurologist about this, she did not know what to say, I’m her youngest patient. Again, fearing the unknown was an option.

Nevertheless, I prayed, endlessly.

One day, prior to my delivery, a friend told me, “You think you have hunger pains now, just wait till you are nursing.” Hopeless awe – simply put, that was my reaction. I could not fathom that what she said could be even remotely true! The same woman also told me that nursing would physically wipe me out. She was right. I appreciated her honest portrayal of nursing. Sure nursing fosters a one of a kind connection with your little one but boy does it wear you down mentally and emotionally as well as drain you physically.

From the beginning, the first time we both attempted this breastfeeding thing, it worked! I was amazed! It was amazing. If I had not just delivered a baby I would have leaped for joy! Then, right away I was tested by threat #2. I was allowed to nurse Amelia for the first time in the privacy of my hospital room but then after that, because of the medication I was taking to treat my Dystonia, I was told that I would have to nurse Amelia in the hospital’s nursery. My baby girl truly is a patient little one. There I would sit, exposed in the public nursery, people walking in and people walking out, sometimes I would jerk, yet she still nursed. This actually turned out to be a good thing. The nurses gave me tons of great advice and support! I left the hospital with tons of knowledge and encouragement!

By no means was I the type of nursing mom with a huge stockpile of frozen milk. Often while Amelia was chugging away and I was crying out to God, praying that I would have enough milk for the next feeding. The Bible story of the Israelites relying on mana from heaven day in and day out never felt so real! It’s quite possible that my SS contributed to my limited milk production. Nonetheless, God used this challenge for my benefit because I prayed more as a nursing mom than ever before!

There were nights of cluster feedings where I felt like I was losing my mind! Sometimes Amelia bit my nipple – boy was that painful. My favorite moments were when she would play games with me while we nursed! She is a very playful little one! Her favorite game was to stick her fingers in my mouth. Then, I would nibble on them. Nursing in public was definitely a challenge because of my dystonia. Somehow God always provided a place for me to nurse when I was out of the house. (Changing rooms in department stores make awesome nursing rooms for on the go shoppers!)

Today, Amelia is 13 months old. She still nurses in the morning and evening. Right now she is not ready to let those feedings go – nor will I rush them away. I look back on my breastfeeding experience and cry tears of gratitude. God surely did provide.

So now what? I feel an eerie sense of freedom mixed with nostalgia over Amelia’s growing independence. It’s weird - we both have gained more independence now that she is weaned. I feel like I need to join a support group…Hi my name is Emily. It’s been two weeks since I last used a breast pump. My baby girl loves cow’s milk and sometimes goes to bed choosing not to nurse!

2011 Picture Recap

Hi friends!

Here is a link to a book I put together to capture our 2011 memories...or atleast show what a camera caputred :)

Enjoy!

Ps...Some 2011 pictures are in another book I made about a year and half ago and therefore not in this book.

http://share.shutterfly.com/action/welcome?sid=0AZuWTFo2bsWbrY&cid=SFLYOCWIDGET

Challenging God's faithfulness?

God’s faithfulness is ever present even in the most unseen ways.

I experienced this when I went to see a neurologist for my shaking and then was sent to a Rheumatologist for having too many antibodies. Long story short, I found out that I’m perfect candidate for a progressive autoimmune disease. Yet, I cannot be formally diagnosed for this disease because it has not progressed to the point where I’m externally exhibiting the common symptoms of this disease. This news was hard to grasp, confusing, and until a few weeks ago, upsetting. It was upsetting because I was not concerned about a progressive autoimmune disease, I wanted to know why I shake! Instead my pursuit was completely derailed by one blood test. I’m glad, thankful, grateful, to know about this disease, but it does not answer the questions I have about my shaking.

That sums up the conversations, or more aptly put, complaints I shared with God the first few weeks after my “diagnosis” – or lack thereof.

Then while taking a breath from all my complaining, I was convicted as I realized God’s faithfulness.

Allow me to reiterate the word progressive. Progress is a favorite word of politician’s, and we American’s like to hear it because we like to be going somewhere. The American Dream. Generally the word progress is indicative of going somewhere better. That is not the case with this disease. Yet here I sit a perfect storm for this disease yet all is well. That is faithfulness, God’s faithfulness.

There is more to faithfulness than what we can see. there is a whole component of what we cannot see that exemplifies God’s faithfulness.

Recognizing this has given me hope. I don’t know why I shake. I just know it’s uncomfortable, humbling, and annoying. Yet neither did I know about this disease. What does that tell me about God?

God knows.  Because of Him, I know about this disease and am prepared to fight its progression, and all this before the disease has even seriously affected me! Therefore, I do not have to worry about my shaking. I realize now that God is before me when it comes to my health. I used to worry that he was dropping the ball or that I was handed the short straw and demanded to suffer, but I know he has me completely in his arms. And may I rest well there.

Where can I go from your Spirit? Where can I flee from your presence? (Psalm 139:7)

Can anyone hide in secret places so that I cannot see him?" declares the LORD. "Do not I fill heaven and earth?" declares the LORD. (Jeremiah 23:24)

The Importance of Knowing How You Are Different

I’m different.
Not in a way that makes me better than you
Nor in a way that places me below you.
This is only possible because
you are different too.
Surprised?
Confused?
All–all–of humanity are His image bearers.
That is what (should) bind us all–all–together.
Yet, just as He did with the flowers
He gave us an array of differences.
To Him we are a beautiful arrangement.
Do we see all–all–of humanity that way?
We ignore and suppress how he uniquely formed us
and struggle to love how he uniquely formed others.
How did he uniquely form you?
Discover how you are different.
Proclaim how you are different.
The importance of knowing how you are different
cannot be understated.
It’s invaluable.
A powerful weapon in this dark world;
which is why it’s important for me to tell you,
I’m different.
People who accept being different,
who embrace being different,
will make a difference in this dark world.
They will be a brilliant light sending out beams of hope.
To the
disenfranchised,
mistreated,
undervalued,
less fortunate.
Those are the people who society points to and says,
“They’re different.”
But,
if you can re-program your soul,
embrace being different,
then you are ready to embrace all–all–humanity.
Just like Jesus did.

For most of my life I’ve struggled at embracing and loving how God formed me. God is helping to reconcile how I see myself to how he sees me. When we don’t love ourselves, we are hindered from fully loving others. We become distracted by how others see us, which limits us from loving others. The other day I watched a video of a man with Downs Syndrome testify of how he accepted Jesus as his Savior and Lord. Many things about this video caught my attention, specifically how he described himself, different. I heard him say that word and immediately thought, “what a beautiful way to describe yourself.” Shortly after, God gave me these verses.

Transitions Are Like Vitamins

Transitions are tough.

They are like a One-A-Day vitamin.

You gag trying to swallow it.

Its bigger than a peppermint.

Can’t they come in smaller sizes?

Gulping down water,

the vitamin scrapes against your throat

and rests somewhere

between your mouth

and stomach.

More water is needed.

Gulp, gulp, gulp.

…15 minutes later

….nausea is your name.

Who tries taking a vitamin on an empty stomach?

You did.

Tomorrow comes,

its time to take your vitamin.

The memory of yesterday

is not forgotten today.

This time you have a plan.

You take a knife and slice

the vitamin in ha          lf.

With ease and confidence,

you swallow those halves.

Gulp, gulp, gulp.

…15 minutes later

….nausea is your name.

Who tries taking a vitamin on an empty stomach?

You did,

again.

Tomorrow comes,

its time to take your vitamin.

The memory of yesterday

is not forgotten today.

This time you have a plan.

You swallow your halved vitamin,

Gulp, gulp, gulp.

And eat a piece of toast and jelly.