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Watch Out, Gym Buffs

Oh sure people who regularly lift at the gym are impressive. They can flex their biceps, triceps and any other “eps”. But can they flex their face? I don’t just mean when they smile, frown or grimace as they really work those muscles. Can they flex their face? Well I can…apparently.

Late Sunday afternoon we were heading to my in-laws’ house. It was going to be especially nice, because our nieces and nephews would be there and we hadn’t seen them in months. Having all the family together was a “good stress”, but I was already stressing (the bad kind) about other life things. Before we left the house I was feeling that familiar build-up before a dystonic episode. I was hopeful that it would pass, but the feeling only intensified on the thirty minute drive over. I could feel the corner of my mouth pulling and my limbs beginning to tighten. Once parked in front of their house, I looked at my husband, “I think I need a minute”. My face was still pulling. My fingers had clenched around the sweater I had set beside me. My husband sent the kids inside, freed the sweater from my grasp, then proceeded to work on the rest of my muscles. While he was trying to trick my leg muscles into releasing, the muscles in my face decided it was their time to shine. The muscles around my eyes and cheekbones felt as though they were being pulled down to my chin. My jaw locked shut and I could not speak. The pain was so intense and all I could do was cry. My husband was frantically trying to figure out what was hurting the most. At first, he thought maybe he had hurt my leg while trying to relax those muscles. I was able to finally sputter out, “ma fa hur” (my face hurts). He did the best he could to massage the muscles. Once my legs were at least able to function, he helped me inside the house. It took some time for the rest of the episode to pass, but once it did we enjoyed the time spent with family. I of course, was wiped out and sore the rest of the day and the following one. My face felt as if I had spent hours at the dentist and then took a basketball to the face. It is still a bit sore now. My husband told me that my face looked strange during that episode, that he could see all the muscles pulling, like someone flexing their arms. So there you have it, I can flex my face…watch out bodybuilders, my strength game is strong.

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♡

Accepting Limitations

When pain exists every day, I can almost guarantee that any extra activity is going to exacerbate symptoms. Shoot, some days taking a shower is considered over-doing it. This is just from chronic low back pain and my dear frienemy, fibromyalgia. Add in confused sweat glands (autonomic neuropathy) and a heart that likes beating too fast (POTS), and I’m potentially a disaster waiting to happen. I know that if I overdo it, I will be completely wiped out. I’ve also learned that my psychogenic dystonia episodes are more likely to kick me in the butt if I do too much. It’s not just the mental stress that brings about episodes; when my body is physically stressed, it says okay, we’re shutting down now. Except, maybe I’m more like a robot that glitches before it powers down. After all, I do have a battery and several screws in my body…

Back to my point…I’m learning to accept that I need to take breaks and to cut myself some slack when I don’t accomplish what I intended. For example, the other day I was bouncing between laundry, cleaning the kitchen and other chores. My son said, “Mommy, you’re doing a really good job, but you need to stop and relax the rest of the day. You’ve done too much the last couple of days. Stop before you have an episode”. Well, I partially took his advice. I continued to do a couple more chores and then relaxed. The kid is pretty wise, because sure enough later that night, I had an episode and oh was it a doozy. I was coming in from the garage and as I reached the door, I just stopped in a lights on, no one is home kind of way. Once I had my focus back, I tried to take a step with my right foot. Instead of planting on the ground, my foot tightened, turned inward and that leg drew up towards my chest (maybe I’m a flamingo?). The more I tried to put it down, the further up it drew. My back, left hip and leg tightened in a way that twisted my posture. So there I was standing at the door, clinging to the door knob and the garage shelf, trying to figure out how I was going to get inside. Can I hop on one foot? Can I make it to the ground and try to crawl or scoot? These are terrible ideas. I opened the door the best I could without falling and hollered for my daughter because I figured she would hear me best (the boys were playing video games). She checked on me and ran to get my husband, who had to awkwardly carry and place statue me on the couch. By the time we reached the couch my hands and arms had tightened up and pulled inward too. I told my husband I would be fine and that I would just let it run it’s course. The muscles have to tire out eventually, and they did over an hour later. My family is really good about trying to help massage or trick the muscles into letting go, but they have to be careful as it can be extremely painful. Sometimes it is best to just leave them be. Needless to say, once everything relaxed I was extremely sore and exhausted. On the bright side, my daughter kept me company during the episode by watching my all-time favorite movie as a child, Labyrinth. Side note: she said it was good and she didn’t seem to mind me reciting the entire movie.

I have a long list of things I want to accomplish today, but I think I finally learned my lesson. Instead of trying to complete all my chores at once and then shut down, I’m forcing myself to take a break between each task. I’m using that break time to play a game on the computer, write this post, or anything else that will allow my mind and body to de-stress a bit. If I don’t complete my to-do list today, it’s okay; those things will still be there tomorrow.

I hope you are all having a wonderful week!

With love,

J♡


Here’s a sneak peek at the painting I’m working on.

If you are interested in seeing more work, feel free to drop by my page and let me know what you think. ☺

When Rest Isn’t Restful

I am so tired. My body and brain need some rest. I cannot remember the last time that I had a restful nap or night of sleep. Even in slumber, my mind and body don’t seem to know how to behave.

I have been taking something called Restful Legs before bed to help with, you guessed it…restless legs. It does help, but the feeling doesn’t completely let up and so I usually spend the first 30 minutes kicking and twitching my feet and legs about. On nights that are particularly bad, I more or less have an adult size tantrum, wishing that I could throw my legs across the room. It’s an icky feeling when you want to crawl out of your own skin. Other times, I can feel my muscles begin to tighten and I pray that it doesn’t turn into a full blown dystonic episode. Some nights, fibro makes it difficult to get comfortable. Lie on one side, pain. Try the other side, pain. Adjust the leg pillow, no good. Try lying on my back, too much pressure. If my skin is feeling very sensitive, even the sheet hurts.

Now, I can usually get my mind to calm down long enough to fall asleep, but the dreams…my goodness, where does my mind come up with these things? Most nights I recall dreaming, but I don’t always remember what they were about. More often than not, I seem to have very bizarre, vivid dreams or nightmares. Just the other day for example, I took a nap. My odd and all-over-the-place dream turned into a nightmare. I was holding my right hand and my finger was losing so much blood that I was sure I was going to bleed to death. The nightmare felt so real that I was actually feeling pain in that finger when my husband woke me up.

I’ll be honest; I kind of wish a doctor could administer some general anesthesia that would last eight hours. Perhaps then, I could wake up and finally feel rested. I suppose that for now, I’ll keep running on caffeine and a whole lot of Jesus. Thanks for allowing me to vent. Be well, my friends.

With love,

J♡


On a happier note, I’ve been doing some painting. If you have a moment to spare, please check it out and let me know what you think. https://stormscanbebeautiful.com/shop-2/

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♡

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♡

♪My Diagnosis Has a First Name♪

Hello, wonderful people! The last few months have been quite “eventful” around the world; how is everyone holding up? I realize I haven’t posted in a few months, and I’m sorry. I never intended to take such a long break, however, I think I needed it.
So let’s see, the last we chatted I was in the process of testing. Here’s a look at what it’s like to wear the ambulatory EEG.

The hat helped keep the leads in place.
The kids thought I looked like an alien.

I sported these fashionable wires (and the recording box/battery inside my purse) from a Thursday afternoon until that Monday Morning. Let me tell you, everything from using the bathroom, to changing clothes, to remembering my colorful locks were attached when standing, proved more challenging than I anticipated. You can imagine the joy I felt that Monday morning when I was able to remove all the leads and take a real shower. Now, I understand that a common aftermath of this test is skin irritation from having those little stickers on so long. I think I have really sensitive skin because I got to flaunt (insert sarcasm here) this lovely forehead rash for about a week.
In addition to the tests I mentioned in my last post, I had some bloodwork done. The result of everything? I have officially been given a diagnosis! I have Psychogenic Dystonia and Hyperadrenergic POTS. I’ll leave links at the bottom of the post, if you would like to learn about those. As for treatment, I have started taking a beta blocker and a new antidepressant.
The beta blocker seems to be helping. My legs are not as blotchy and purple as they normally are when standing. I’m also having less palpitations and feelings of being lightheaded. Want to know some more great news? I’ve only had a couple big episodes (Psychogenic Dystonia) in the six weeks I’ve been on the new antidepressant! That one was a bit trickier. The first few days, I was taking the old and new antidepressant. Then came a few weeks of just the new one. I won’t lie, I didn’t like myself very much during that time. In those days, I would have rather had my episodes if it meant I wasn’t irritable, cranky and feeling low. I called the doctor and he gave me the okay to go back to taking both antidepressants each day. I’m feeling much more balanced now. I’m thankful that my family was understanding and forgiving during that roller-coaster ride. Want more good news? Both new medications I’m on have caused weight gain and a better appetite. I have always struggled to put on any weight, but in those six weeks, I’ve gained eleven pounds! I haven’t been able to do that since I was pregnant. I’m feeling healthier with the added weight and less self-conscious.
So that has been my bit of good news for you all. You know, after trying for a decade to find a diagnosis, it is a relief to have a name to put with what’s going on. It is a reassurance that I’m not crazy. I could be upset that no other doctor has been able to figure it out, but I’m not. I feel like this was the path I was meant to be on and God used me for something greater than I will ever be able to understand.

Thank you all so much for the prayers  for answers. God is great!

With love,
J♡


Hyperadrenergic POTS

Psychogenic Dystonia

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♡

Please,tell me how you are doing.

Hello, dear friends. I will try to do a post tomorrow on how my appointment with the movement disorder specialist went.

Tonight though, I just wanted to check in with everyone. Covid-19 is affecting so many people in so many ways. Our little family is trying to stay in as much as possible. While the seriousness of this virus is scary, the other thing I worry about is people losing their sense of humanity. You have people who are hoarding essential items or harming others over the essentials. I pray that this virus does not harden hearts.

So, my question to you is this:

Where are you? More importantly, how are you doing (physically, mentally, emotionally)?

On a lighter note, here are some things I found on Facebook that I found amusing in regards to the toilet paper shortage.

I keep joking about sewing tp squares in pretty patterns and super soft material. I DO plan on trying to sew masks this weekend and then donate them to assisted living facilities that are in short supply.

Please take care, friends. Praying for all of you and your loved ones.

With love,

J♡