Merrily Panicked

Merry Christmas, friends! I know this year has been a tough one, but I hope that you are finding some peace and joy in the next couple of days.

It happens every year…I gripe about the Arizona summer temperatures, anxiously await Halloween, and then boom, it’s Christmas Eve. I don’t understand why the year seemingly drags on, and then is in fast forward after Halloween. What I do understand, is that just like every other year, it is suddenly Christmas Eve and I am fighting with all my might to not have a meltdown. Don’t get me wrong, I love the get-togethers on Christmas Eve and Day, but the time crunch of it all definitely adds to my stress and anxiety. Thanks to bad pain days, functional Dystonia, and (let’s face it) my inner procrastinator, I am left scrambling tonight to finish wrapping gifts, wishing I had made more homemade gifts, and baking cookies for Santa with the kids. I’m trying to decide when would be the best time to shower. I’m contemplating skipping a dose of my meds so I don’t sleep in too late. I’ve considered taking it earlier, but if I do, it will make me tired and there’s just too much to do. We’re on a time schedule to get to family’s house in the morning, which means we need to wake up early in order to not be rushed through our Christmas at home. I know these things I’m stressing over may not seem like a huge deal, but for me they are overwhelming. I can feel a dystonic episode brewing and I am praying it stays at bay. I’m a bit like a computer…too many commands and I’m bound to freeze up and shut down. This is also problematic when it comes to get-togethers. The multiple conversations taking place in one room, the crinkling of wrapping paper being ripped away, and any type of background noise…it’s a complete sensory overload. Sensory overload, equals lights on, no one is home.

Well, I better get back to the ‘to-do’ list before I short circuit; I’ve already spent more time on this post than I alloted myself.

Wishing you all a wonderful, joy filled, safe, and stress free holiday. God bless.

With love,

J♡

Fighting Myself

Hello, friends. Depression looks different for each person and we all have our own ways of handling the monster. Along with medication, prayer and writing have been great tools for me. I wrote this poem during one of my recent low points.

Before reading any further:
If you are struggling right now, please know that you are not alone and you ARE loved. Reach out to a family member, friend, lifeline. Just don’t give up.
National Suicide Prevention Lifeline 1-800-273-TALK (8255)


Fighting Myself

A different kind of tired
A night of sleep won’t fix
Tears stream down
Don’t want to feel like this

Must keep moving
Distract the body and mind
Push the thoughts away
They don’t feel like mine

Focus my energy
Try to lift people up
Crying inside
Tell others they’re loved

Know what it’s like
To feel lost and alone
Praying to God
Please take me Home

My plea He won’t grant
Not yet, but some day
Right now I am needed
So here, I will stay

Behind locked doors
Where nobody knows
Tears hit the ground
While God holds me close


Thanks for reading.

With love,
J♡

Uh Oh!

Oh yes, I’ve done it! I’ve broken the rules. I’ve become a rebel. I’ve put up the Christmas tree before Thanksgiving (gasp!), and you know something…I don’t feel bad about it. Not. One. Bit. This has been a really rough year, and I am ready to be in the Christmas spirit. While I pieced together the artificial pine and wrapped it in lights, I added my off-key vocals to the sweet sound of the Christmas classics. We may wait until after Thanksgiving to add the ornaments, and that would be okay. Just putting up the tree and staring at it’s glow in a dark room was just the mood lift I needed, and oh boy did I need it.

When I saw the neurologist last week, he and I decided that it would be a good idea to increase my antidepressant (one of them). I know that it takes a while for these things to build up in your system. If ever there was a time when I needed it to happen quickly, it’s now. I have felt myself slipping back into my darker depression days and if I’m honest, it was worrying me. Old, unhealthy coping mechanisms were just one impulse move away. I fought hard to push those thoughts and urges away, and more than once cried out to God ‘I need your help’. He heard my cries and saved me from myself like he’s done so many times before. I know that my depression is a daily battle, but I also know that I don’t have to fight it alone. I wish this was something I realized many years ago when self harm was the weapon of choice in my battle.

While I enjoy the beauty of the tree lighting up the room tonight, I will focus on the real Light in my darkness and be thankful for His love. You all are in my thoughts and prayers. If you’re in a battle right now, keep fighting; you’re not alone.

With love,

J♡

I Screwed Up Dinner and Then Some

Needless to say, November started terribly. Add that to the rest of the year and it’s a recipe for an emotional storm. If you’ve been with me a while, you know that my body does not respond well to heightened emotions. Depression, check. Fibro flare, check. Psychogenic Dystonia episodes (attacks, as I call them), check. These attacks are bound to happen; I’m not shocked when they do occur. They do however, still hold that element of surprise. Where will I be when it begins? What will I be doing? How long will it last? Which body parts will be affected? Wednesday gifted me with not one, but two episodes. Luckily, I felt them coming and got myself to a safe place. They also didn’t last very long, which I was thankful for. When my mom learned of Wednesday’s episodes, she said I had reached my limit for the week and wasn’t allowed any more. Well, I must be an overachiever because on Thursday I had another one. If this is your first time reading my blog, I have a strange sense of humor and sarcasm; just roll with it.

Cue dinnertime. My husband and I were making tacos and chimichangas. Bellies grumbling, this was going to be a delicious and satisfying meal. Everything was ready, and the oil in the pan was hot, ready to magically turn burritos into chimichangas. The picky eaters (kiddos) had already eaten. My husband had warmed up his tortilla and layered his ingredients when I heard him ask, “aren’t you going to warm your tortilla?”. I wanted to answer, but I couldn’t. I responded in my head, but could not get the words out. Our backs were to each other as I was at the counter opposite of the stove. I was midway through closing the bag of tortillas when I just froze. At that particular moment, my body said I’m done and I guess I didn’t get a say in the matter. I really feel like I should be a part of these major decisions. Once my husband had asked a couple times what was wrong and got no response, he did his best to help me. I am used to the episodes that cause my muscles to tighten and contort me however they see fit, but this one was different. I just stopped, stared off, couldn’t speak, couldn’t move. My arms may have well been cooked spaghetti noodles. I couldn’t lift them, couldn’t grab my plate, couldn’t hug my daughter back as she offered comfort. It was frustrating to say the least. Slowly I regained my words and I did manage with my husband’s help, to get my feet moving. I shuffled back and forth in the kitchen in hopes that maybe some muscle memory would kick in. Nothing. Back to the counter. I asked to have my arms lifted and rest on the counter so I could concentrate on making my hands and arms do something, anything. I attempted to lift my hand. I felt muscles tighten, but they were the wrong ones. What I got instead was a tight upper arm and an elbow that felt glued to the counter and still nothing from my hand. The more my husband tried to help and the more I tried to concentrate on getting body parts to cooperate, the more my upper body tightened. I told my husband to finish cooking his food and eat without me. Being the sweetheart he is, he insisted on waiting for me. I felt bad that his food was getting soggy the longer it sat. Everything else on the stove was cooling down. The oil in the pan was burning and needed to be turned off. Back to shuffling around the kitchen. Then, the familiar muscle tightening I’m used to. Feet together, legs straight, jaw pulling to one side, my husband had to pick me up and carry me to the couch. The whole attack lasted about an hour. I had ruined a great dinner, later evident by the not so fresh taste of the food. Other than the grumble in my belly, all I could seem to focus on during that time, were the negative thoughts swishing around in my mind. I’m a burden. I mess up good things. It’s not fair that my husband has to deal with this. What if I’m the cause of his stress? He probably wishes he had never met me. It’s only a matter of time before he leaves. Does he feel obligated to stay? He resents me. The kids shouldn’t have to take care of me or watch this. Are they going to have the same issues? Is this going to be how they remember me someday? I suppose I have anxiety and depression to thank for all the intrusive thoughts. They are the salt poured into an open wound. As I type this, I know that most of those thoughts are not things I need worry about; at least I hope that is the case. Yet, they still linger at the back of my mind, just waiting for depression and anxiety to open the gates and allow them to overwhelm me.

I know I have no right to complain, but some moments really make me question why I can’t just be normal. I know I need to trust God’s timing and purpose for me. I hope that I am not disappointing Him each time my head fills with so much negativity.

I hope all of you are doing well. Sending hugs.

With love,

J♡

Heaven Gained a Wonderful Woman

Hello, friends. I’m afraid I have some bad news. Yesterday afternoon, Heaven gained a wonderful woman. God calls her Child. Those she left behind call her Mom, Friend, Nana, Granny. I call her Grandma. She is a beautiful, smart, witty, crafty, talented woman who will be missed tremendously. She loved with all her heart and gave hugs that could ease your pain. She had the motherly/grandmother intuition that let her know when something was wrong. Sometimes she would text me, ” Nik, you can’t hide things from Grandma. You can tell me anything”, and I could because I knew that she would keep my secrets safe. She and I had a grandma/granddaughter sleep over some years ago that didn’t quite go as planned. We kept saying that she owed me another one. I told her last night, “you owe me a girls night when I get there”. I know that hopefully that won’t be for a long time from now, but I wanted her to know I hadn’t forgotten about it. The pain of losing her keeps coming in waves. Her going Home yesterday was completely unexpected and the whole family is hurting and a bit in shock. I would like to ask you all to please pray for peace and comfort, especially for her children, most of whom are living across country. I know that this must be especially hard on them being so far away. My uncle who was living with her is going to have a lot to handle and could use prayers for peace, comfort and strength.

I Guess God Needed You More

I just spoke to you on Friday

It was so good to hear your voice

We’d talk again I was sure

But I guess God needed you more

You were going to stop by tomorrow

You had a box of food for us

You said you’d leave it outside the door

But I guess God needed you more

Christmas will be here soon

I had your gift all planned out

I was going to paint the picture you asked me for

But I guess God needed you more

I’ve been terrible about calling

We didn’t visit nearly enough

You still had plenty of time in this world

But I guess God needed you more

Friends, hug those around you, pick up the phone, make the trip. We are not promised tomorrow; let them know now how much you love them.

With love,

J♡

The Letter I Mentioned

An open letter:

Dear _________,

I bet you never thought you would hear from me, huh? Many years ago, I’m sure this letter would look quite different. Years ago, I would have written words out of anger, disgust and hurt. Today, I am writing this letter to tell you that I forgive you. I’ll never know why you made the choices you did, and I don’t want or need to. What you did to me was wrong and yes, it caused emotional damage, not only for me, but the entire family. I was blessed to be able to rekindle the relationship with Aunt ________ that you stole. You may have caused great pain, but with God I have been able to turn that pain into an incredible strength. I have given it all to Him and no longer hold feelings of ill will. I forgive you. I will never know if those words mean anything to you, and that is okay. I pray that you have changed your ways and asked God for forgiveness. The last I heard, your health was not great. I will pray for your healing. God bless.

Nikki

A Small Fear

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.

Be well, dear friends. Hugs to whoever needs one.

With love,

J♡

Reintroducing Myself

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.

Today was a good day.

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.

With love,

J♡

Getting Closer to a Diagnosis

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!

Here is a link that I found informative: https://dystonia-foundation.org/what-is-dystonia/faq/


Take care friends, and as always, thank you for being here with me on this journey.

With love,

J♡