What it is Like

Hello, my friends! I hope you are all doing well. I have missed you. We are getting ready to sell our home, so I have been busy weeding through the clutter we have accumulated and packing up the important things. This is going to be a huge change for us as we are moving out of state. So long, Arizona! I will do my best to document the journey along the way.

Today though, I wanted to talk (again) about Fibromyalgia and other chronic “invisible” illnesses. So often, those of us who “don’t look sick” are judged based only on what others see and their lack of knowledge and understanding. I recently had an argument with someone close to me about this matter. Sadly, I know they are not the only one who feels this way. They perceive me as someone who is lazy because I cannot work, but they see that I have done other projects around my home. What they don’t see: medication to get through the pain, tears, restless nights, naps, fatigue, and three days of recovery. Try as I might to not let someone’s opinion of me get under my skin, it does. I try to keep in mind, that it is hard to comprehend what it is truly like dealing with chronic illness, until you have been through it yourself. Again, I wouldn’t wish that on anyone. I thought I would share some images that depict what my days are like with Fibromyalgia.

It is usually a day that you have the most on your “to do” list. Very inconvenient.
Fibro and Arizona do not get along well. At all.
The batteries are never at full charge.
More like 13, but who’s counting?

Be well, my friends. God bless you.

With love,

J💜

We are More Than Enough

Being in pain every day for the last thirteen years, is enough to make to make me want to give up. Knowing that I will likely be in pain every day for the rest of my life, is enough to make me want to give up. Having a body with an unusual way of dealing with stresses, anxiety and depression, is enough to make me want to give up. Yet, I don’t give up. I won’t give up. I wake up every day in a battle with my own body, and I go to bed the same way. I try my best to put a smile on my face, push through the pain, and do as much as my body will allow me, in order to take care of our home and family. Often times, this results in me paying for it over the next couple of days.

I don’t share all of this because I want sympathy. No; what I want, is understanding. It baffles my mind that people are so quick to judge me and people like myself. We get labeled as lazy or unwilling to work. We get labeled as antisocial or flaky. It’s true what they say; sometimes you have no idea what someone is going through until you have walked in their shoes. Here’s the thing though, I wouldn’t wish these shoes upon anyone. It is a battle every day, and every day I get through it with God and the support of my family.

What I would like, is to be believed. To be understood. Sadly, there are some people who will never understand. Not because they can’t, but because they don’t want to. It does not matter that they have witnessed the struggles with their own eyes. It does not matter that they have read the medical papers that you have provided them. No; it’s much easier for them to slap a label on you and call it a day. These are the people that can make you feel “less than”, but let me tell you something…you’re not “less than” and neither am I. We ARE enough. We are more than enough.

Be well my friends, remember your worth and God bless you.

With love,

J💜

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♡

Gobble and Wobble

Hello, friends! It’s Thanksgiving evening here. Today, my daughter helped me make the green bean casserole to take to dinner at my mom’s house. Our day and dinner got off to a bit of a rough start (thanks inorganic dystonia), but it’s okay. My belly is full from turkey, sides, and of course, pumpkin pie…yum! You know what is more full than my tummy? My heart. I am truly blessed to have a wonderful and supportive family; one that is loving, encouraging, patient and forgiving. I am so thankful for each one of them.

I am also so very thankful for each one of you! You take moments of your precious time to read my words, share in my ups and downs, or leave words of love and encouragement. That amazes me and fills my heart with so much joy; thank you! I hope you are all having a wonderful day (even if it’s not Thanksgiving)! God bless.

With love,

J♡

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♡

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/

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♡

Time for a Medical Update

Hello, friends! Back in October, I shared with you that I had been having seizures. I did finally make it in to see the neurologist in November. He ordered a brain mri, which thankfully came back negative. He also ordered an EEG. It also came back negative. The doctor’s conclusion? Movement Disorder. He could not say what type of movement disorder; for this I would need to see a movement disorder specialist. Ugh, more referrals, more phone calls, more denials, more stress. Thankfully my momma bear came to the rescue again. Last week she found a doctor, and my appointment is set for the 12th of this month. I have a good feeling about this one; I really think we’ll be able to get some answers. We are all anxious as it has been a trying several months. For a little while the episodes seemed to let up, and I even started driving again. Unfortunately, they are back full-force and I have quit driving once more. There were four times while driving that I had these episodes. Thankfully, I was able to pull over before they went full blown. It’s too scary and they escalate so quickly. I can’t take the risk of putting my family or anyone else in danger.

I was hesitant to add this video, but I wanted to give you all an idea of what I am talking about when I mention these episodes (attacks, as we call them). My muscles tighten up and have a difficult time releasing. The positions that I end up in at times are so painful. The more severe episodes leave me completely wiped out and in need of a long nap. This video shows a mild episode that I had last night. Please excuse the goofy attire and crazy hair -it was a lazy Sunday.

I pray you all have a wonderful week. Thank you all for your patience, kindness and support.

With love,

J♡