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♡

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♡

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♡

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♡

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♡

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♡