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♡

Not the Same

Pull up to your house

Your blinds are not open

You’re not in your chair

Ready to welcome

Take a deep breath

Walk through your door

A quick glance around

You aren’t here anymore

Not wrapped up in your hug

No kiss upon my face

Overwhelmingly odd

Standing here in this space

Make my way to your room

Sit at the end of your bed

Let myself cry

Memories fill my head

Tell you I love you

That I wish you were here

Close my eyes for a moment

You feel so near

Grab a sweater from your closet

One that is cozy and blue

I’ll wrap it around me

To feel close to you

I love you, Grandma. Xo

Thank you for reading.

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♡

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

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♡

Heaven Gained an Angel

Hello, dear friends. I know that I need to update about many things, but tonight I just want to repost a poem I wrote almost a year ago. I wrote this poem about my aunt. She was a strong and beautiful soul whom I love very much. This morning, God called her home. While so many will miss her tremendously, I think there’s a bit of peace in knowing that she no longer has to fight the medical issues she had.


Wanting to Hold You

By J♡

I wanted so badly
To hold you tight
Not knowing when
You would see the light
But your body has become
Oh so frail
Your bones are weak
And the muscles, they fail
So thin and fragile, is your skin
I wish I could make you
Healthy again
I see the frustration
In your eyes
It breaks my heart
Every time you cry
I’m dreading the day
I get the call
That says you are now
Watching over us all
So badly I wanted
To hold you tight
Not knowing when
You would see the light
Not wanting to hurt
Your delicate frame
I kissed your forehead
And drove away
Your scent lingered
As I began to pray
God, when it’s time
For you to take her home
Let her be not afraid
Without pain and not alone


Thank you for reading. Hug your loved ones and tell them how much they mean to you. I really hope you all are doing well.

With love,

J♡

Have You Ever?

Have you ever felt like there was no one you could talk to, even when there was? Have you kept your innermost thoughts from your trusted loved ones, because you didn’t want to cause them worry or add stress to their life? Have you ever felt like you couldn’t talk to a therapist because of fear that they might lock you up? Have you purposely avoided checking certain boxes under the “mental health” portion of your medical evaluation paperwork, for fear you’d be seen as unstable? If you answered yes to any of these, then welcome to my boat…grab a life vest and a paddle; I’ve already packed the snacks.

Not too long ago, I was dealing with some pretty dark thoughts. While I know that I would not act on any of them, I don’t know that others would be so easily convinced. I didn’t want to tell my family because they already have enough to deal with. I didn’t want to tell my therapist, because although there is a doctor/patient confidentiality, I feared my words would somehow make their way to other parties. I was really feeling like I needed to carry the depression box all by myself. I did finally tell my husband about the box, without emptying all of it’s contents.

This is something I’ve been wanting to talk about on here as well, but the timing was not right. Even now, I am trying to choose my words carefully.

What are your thoughts, am I maybe being too cautious? I wonder if similar views/fears are the reason why a lot of people suffer in silence. Although most of those dark thoughts have subsided, it feels good to be able to share some of what I’ve been holding onto. Thanks for allowing me a safe space to do so. Also, sorry in advance for any typos or if I’m not making as much sense as I think, as I’m still on loopy pills (pain killers). Sending hugs to whoever may need one. If you ever need someone to talk to, please don’t hesitate to reach out to me.

With love,

J♡