Posts

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

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♡

Type, Erase, Repeat

Type the title. Erase it. Type a new title, erase it and start typing a paragraph; I’ll think of a title after. Erase my three sentences and close the app. Stand at stare at my craft things. Pick up a canvas and put it back. Open WordPress, repeat the actions I did earlier. Decide to try macrame; it turns out terrible. Open WordPress once again.

I’m struggling tonight to find that creative and happy side of myself. Maybe it’s not just tonight; I’ve been feeling this way for days. I don’t know if it is the increase in negativity I’m seeing among people, stress over personal issues, or my meds aren’t doing their job properly. Maybe it’s a combination. Whatever the case, I don’t like it. I am feeling very meh. I know how quickly for me meh can turn into just existing. For those that have been with me a while, you know that is not a place I wish to go. I have an appointment with the neurologist on Wednesday and I plan to ask him about increasing the dose of my antidepressants. I thought the combination I’m on was working pretty well, but maybe not so much. Perhaps now would be a good time to ask my family what they have observed?

There’s a ton of thoughts navigating through my brain and feelings that I would like to express. I just can’t seem to get them out at the moment, but I thought I should at least write something so I don’t slip back into the bad habit of not writing for weeks on end. That said, I wish you all a wonderful weekend. Hugs.

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♡

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♡