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♡

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♡

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♡

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. ☺