At some point roughly twelve years ago, things changed. My brain and body had a little meeting. I imagine it went something like this:
Brain: *sips coffee* I have an idea. Handling J’s stress the “normal” way is getting boring. What if we shake things up a bit?
Body: What kind of stress?
Brain: Any! Mental, physical. Shoot, even strong happy emotions! What do ya say?
Body: What do you have in mind?
Brain: We’re going to work together to make her muscles tighten up and move in ways she didn’t know was possible. We’ll call it Psychogenic Dystonia!
Body: I don’t know. What if she doesn’t like that? What if it causes problems for her?
Brain: It’ll be fine. She’ll learn to deal with it. Besides that, we’re in charge.
Body: Okay, I’m in.
*They cheers a cup of coffee*
The mind is a beautiful and powerful thing. Why mine really chose to handle stress the way it does, I do not know. I know that God is in control so I try not to let fears of uncertainty get to me, but there’s something that sits at the back of my mind. What if one day, my brain decides to switch things up again? What if it decides that a better coping mechanism would be to add other personalities, intrusive thoughts, or hallucinations? My heart goes out to all those with borderline personality disorder, schizophrenia, and all other mental health conditions. You are strong and amazing.
I’m giving this fear to God and will trust that He will be with me, no matter what kind of shenanigans my brain and body get into.
So often over the last decade, I have found myself saying I miss the old me. Which old me was I missing though? Was it the grade school me, who really didn’t know anything? Was it the high school me, who cared what everyone thought, was self conscious, felt like a burden and was lonely? Was it the me who would self harm in a desperate attempt to feel in control of something? No, these were not versions of myself that I liked very much.
After thinking about it more, the me that I was missing, was the me I am supposed to be. I am still figuring out who that is, but I’m finally enjoying the process. Now that I have been on my new medicine for a while, my appetite remains that of a teenager, my weight is staying up, I have more energy, and for the most part my mood is good. I think I really like this me that is emerging, flaws and all. Having said that, I feel like now would be a good time to reintroduce myself.
Hi, my name is Nicole, but most of my family calls me Nikki or Nik. Of course I will still answer to J or Jo (as some of you sweetly nicknamed me). I have a wonderful husband and two kiddos that stole my heart. To be honest, my favorite nickname is the one they call me…Mommy. I am currently 33 years old (though sometimes I have to really think about it) and living in Arizona. I was born and raised here, with the exception of a couple years after I was born, living in Pennsylvania until my parents divorced. It really isn’t where I want to be, at least not in the valley. I long to live somewhere that is surrounded by green, has all four seasons and rains often. I love cloudy days and thunderstorms. Those are my favorite days and are especially good for crafting. My sewing table is one of my happy places. I also enjoy painting and doing any kind of crafts. Hot glue guns are fun…and dangerous…careful, boys and girls. I love to dance and sing, though I’m not particularly good at either. Actually, there are some that may argue that I’m tone deaf. I consider myself a shy person, but around people I am comfortable with I am quite the goofball. I have an addiction to coffee, dark chocolate, and mixed-berry smoothies. I am a woman of faith and have seen God’s love work through all of my pain. He has saved me from myself more than once. I do not talk politics with anyone outside of my immediate family. Please do not ask me to do so; I’ve seen friendships and families fall apart over them. Anxiety, depression, POTS, psychogenic dystonia and fibromyalgia are things I will talk about most, because they are a part of my daily life. I will also share bits of randomness with you, like pictures of sloths (my favorite), just to lighten the mood. I used to be so self conscious, that I could take plenty of “selfies” and decide that none of them were good enough to share with anyone – forehead is too big, smile isn’t right, too many smile lines, etc. I’m learning how to love those things too and stop worrying so much. God made me the way He wanted and I need to appreciate that. Plus, I want to share my story with you and that means the not so pretty stuff too. I want to show you the real me and what life is like in that particular moment.
When I began blogging, I wasn’t sure anyone would really care what I have to say. What I’ve learned so far is that there are people who do enjoy reading my words and have found them helpful. If I can help a single person by sharing my story, then I am happy. Writing is a good therapy tool for me as well. I have also found an amazing community that is supportive. I am so thankful for all of you. I thank you for taking the time to get to know me (again). God bless you.
I had my first appointment with the movement disorder specialist on March 12th. The office itself was so inviting, filled with comfortable couches and warm colors. It did not have that typical sterile doctor office feel to it, though it was very clean. Coupled with a friendly staff, it certainly took some anxiety out of that first visit. While in the first room where the nurse takes the vitals, I started to have an attack. By the time we (my husband and mom were with me) made it to the the doctor’s office down the hall, I was going in to a full attack. I was thankful for this, as the doctor was able to see firsthand what these are like. Let me tell you, this doctor is the best one we have seen in all our years of searching for answers.
He was kind and very patient. He made careful observations and asked plenty of questions. My husband and mom did their best to answer when I couldn’t get the words out. Once my body decided to settle down a bit, the doctor started talking about his plan of action. He said that he felt it was possible that I may have Dystonia and Psychogenic Movement Disorder. He mentioned the possibility of something called dystonic storms. He asked the nurse to check with insurance about any pre-authorization for tests.
By the time we checked out at the front desk, we were scheduling all of my tests.
To our surprise, we didn’t have to wait weeks to complete them. The first one I did was the neuropsychological evaluation. It consisted of a short interview with a very nice neuropsychologist who specializes in movement disorders, and roughly two hours of tests that evaluated memory, cognitive thinking, and mood. At the end of that visit, the doctor was able to tell me that my cognitive thinking and memory appeared to be in good shape. This scarecrow does have a good brain. She said that she could see that my health issues were of big conern and that yes there is some depression and anxiety present. I must admit, that appointment was mentally draining.
It took two more trips to the office to complete the other tests. I’ll be honest, some of them were uncomfortable and even painful. It didn’t help that I was having attacks during some of them, I’m sure. I have one test left to complete, the ambulatory EEG. I will be getting this hooked up on Tuesday and will wear it for three days while going about daily life. My follow-up with the doctor is set for April 13th. With any luck, the results will come back quickly and maybe they will be able to squeeze me in sooner. I finally feel like we are going to get answers. I am so very thankful for this doctor, my amazing family and friends, and all the love, support, and prayers. Thank you, God!
Hello, everyone! Just in case no one has told you today…
I just wanted you to know.
Reminder: God loves us, even when we find it difficult to love ourselves. He will not abandon us. Pray and keep hanging on. Whatever it is you are going through, He is with you. You are going to be okay.
Hello, dear friends. I know that I need to update about many things, but tonight I just want to repost a poem I wrote almost a year ago. I wrote this poem about my aunt. She was a strong and beautiful soul whom I love very much. This morning, God called her home. While so many will miss her tremendously, I think there’s a bit of peace in knowing that she no longer has to fight the medical issues she had.
Wanting to Hold You
I wanted so badly To hold you tight Not knowing when You would see the light But your body has become Oh so frail Your bones are weak And the muscles, they fail So thin and fragile, is your skin I wish I could make you Healthy again I see the frustration In your eyes It breaks my heart Every time you cry I’m dreading the day I get the call That says you are now Watching over us all So badly I wanted To hold you tight Not knowing when You would see the light Not wanting to hurt Your delicate frame I kissed your forehead And drove away Your scent lingered As I began to pray God, when it’s time For you to take her home Let her be not afraid Without pain and not alone
Thank you for reading. Hug your loved ones and tell them how much they mean to you. I really hope you all are doing well.
My dear friends, I know it has been a while since my last post. I have been struggling, and I plan to talk about it in a later post, but tonight I have a favor to ask. If you find it in your heart and have a moment to spare, would you please say a little prayer for me?
I will. I have to admit that at times, I have questioned why He has allowed me to go through so much. I have realized though, that the more struggles I face, the stronger my relationship with God grows. One thing that I know for sure is that He loves me.