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♡

Let the Storm Come

Let the winds come

Stir up this pain

Let it dance among the leaves

Be carried away

Let the clouds roll in

Cover the hurt

Let it be shadowed

Blend with the earth

Let the thunder sound

Blend with the cries

Let it play in your orchestra

To the beat that’s inside

Let the rain pour

Collide with tears

Let them fall to the ground

Along with the fears

Let the lightning flash

Illuminate all that is good

Let it outshine the despair

Just like it should

Let the storm come

Repair this soul

Let it be renewed

Make it feel whole


Thank you for reading. Wishing you all well.

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♡

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

Incomplete Thoughts

Good morning/afternoon/evening! While I’m still struggling to put together complete thoughts, I figured I would share some of the things bouncing around inside my noggin.

  • Some days I feel like I’ve lost my marbles. I found some among my craft things, but I’m not sure they are mine.
  • Those little captcha things you have to do when downloading something…they make you check the “I’m not a robot” box. Every time I click it, it feels like a lie. With all the screws and battery and wires from my surgeries, I think I am part bot.
  • I feel guilty that I am unable to work and contribute financially. The guilt doubles on days that I struggle to complete housework.
  • When someone cracks a joke about me not having a job, it’s not funny. It makes me feel useless.
  • I need to start making Christmas gifts, but the procrastinator in me says I’ll probably be finishing them two days before Christmas.
  • When someone asks how I am doing and I reply with, “good, thanks”, it doesn’t mean my chronic health issues have gone away. It means that at that moment, I am tolerating/hiding it better.
  • I miss driving.
  • As I was looking through the “stats” page and noticing the different countries views are coming from, it filled my heart with joy. When I started blogging, I never imagined more than a handful of people wanting to read my words. From the bottom of my heart, thank you.
  • I’m contemplating writing a letter to the man who stole a part of my childhood.
  • I do not like the way my voice sounds on the phone. I thought I was 33, not 12.
  • I had to think about how old I am. Yes, 33 is correct.
  • I’m over this covid crap, the elections, and city life. I want to move to the middle of nowhere and be neighbors with the trees and wildlife. Maybe someday.

There ya have it, you’ve rummaged through some of the junk drawer that is my brain. Be well, my friends.

With love,

J♡

Skeletons


I wonder how many friends I’d have now
If I exposed my skeletons, left nothing out
Would I be judged harshly for the mistakes I’ve made
Even though my debt has already been paid
Would they criticize my choices based on their views
Without ever having walked a step in my shoes
Would they think less of me
For the things they do not currently see
How they would react I suppose I’ll never know
As long as I keep my skeletons where they do not show


Thanks for reading.
I can only hope that those who know me, look at the person I am today. I’ve made plenty of decisions that I am not proud of, but I have learned and grown from each one. Be well my friends. God bless.

With love,
J♡

I Cannot Spill the Beans

Oh hello there, lovelies!  How are you?  I would love to tell you that I have some amazing excuse for my absence, but that would be a lie.  More than anything, the guilt I’ve felt about not posting had me contemplating quitting my blog altogether or starting over. I did what I seem to do best, avoid the issue and then apologize (again) for my absence.  I realize that at some point you may tire of all my “I’m sorry” posts.  So if you’re still here to share in my journey, from the bottom of my heart, thank you! I will try to do better.
There’s been many things taking an emotional toll on me lately and I’m trying so hard to stay upbeat, but you guys, I’m struggling. Because some of these things involve other people, I need to be respectful of their privacy. I don’t know if you all know this, but I’m kind of a self-proclaimed expert bottler; and so I will use my expertise to bottle up these emotions as well.  As for the issues that are not so personal…I’m sure you all have noticed how much hate and division there seems to be everywhere you look.  People are so divided about politics, the pandemic, equality and so on.  People are arguing and name calling constantly.  I try to just stay in my own little bubble and not let other people’s actions affect me, but it’s heartbreaking to see/hear.  When did we become so focused on being right that we forgot to care about and love one another?  When did we lose our ability to have civilized conversations and learn from each other?  I know we can all do better.  For now, I will concentrate on seeing the good in people and do what I can to show kindness to those I interact with.  Taking a break from social media may be a good idea as well.
On to the health stuff.  Fibromyalgia continues to be a pain in my – everything.  I’m feeling as though I must be in a flare because some days, it feels like I’ve been hit by an 18-wheeler.  Side note – that’s never happened – maybe not a fair comparison.  The pain clinic thought it would be a good idea to go back on pain killers for a bit.  Good ol’ insurance has me waiting until they receive prior authorization.  I have my muscle relaxers, but they don’t do much for me.  Unfortunately, I’m still having my attacks (Psychogenic Dystonia). Although they are less frequent, they still hit pretty hard each time.  Several of these episodes left me so sore that I was sure I had pulled a muscle or two.  Let’s talk about laughing until (or while) you cry.  Pseudo Bulbar Affect…uncontrollable laughing and or crying that is not appropriate for the circumstance.  I hate these episodes more than the dystonia.  I hyperventilate, sweat like crazy, and then sob between fits of laughter.  I feel like I’m not in control and it scares me.  I’m so thankful that these episodes don’t occur very often.  The neurologist said there is a medicine he could give me, but I really don’t want any more meds.  I think I’ll hold off as long as possible.  I really don’t leave the house much, so I’m not too concerned about the embarrassment these cause.  My kiddos understand them, but it does scare them a little.  They try to leave the room when possible to offer me some privacy and allow me to not feel like such a spectacle.  I’m sure there is more I wanted to share with you, but the thought train seems to be leaving the the station without me.
Anyway, I really hope you all are doing well and staying healthy and happy. God bless you and yours.

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♡