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♡

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/

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♡

Medical Issues

Hello, everyone. How are you?? Can you believe it’s October already? I think it’s been close to a month since my last post. I will try to fill you in on what’s been going on without making this too lengthy.

First, the good news; my spinal cord stimulator is working great to alleviate the low back and leg pain (most of the time). I have to admit that the second to third week of recovery was really tough. My body went into a huge fibro flare to the point where I actually feared myself for a moment. There were a couple of nights where I couldn’t sleep and hurt so bad, that I thought I might go temporarily insane and try to claw the device out of my body. I know that sounds gross, but in those moments, I wanted to crawl out of my own skin. My back hurt and I could feel the wires just under my skin…it made my stomach feel sick. All that is better now, thankfully. Just when things start to be looking up though, life likes to throw a surprise party.

Do you remember the “psychogenic movement attacks” that I’ve mentioned before, and how I had one of these at my post-op appointment? It turns out, they are actually seizures and I’ve been having them every day, multiple times a day. The first time it was given this label was at a doctor’s appointment to check thyroid levels and such. I had an episode during my appointment and thankfully, the doctor was able to identify what it was. Not being his particular field though, he could not say what type it was or why it was happening. He was going to reach out to a colleague for help.

The next day, we were running late to pick our son up from school. I had a seizure just as we were trying to leave the house. We make it not quite a mile from the house when the police lights and sirens are in our rear view. My husband was pulled over for a broken taillight. As the officers were running our information from their car, I went into another seizure. My husband jumped out of the car to notify them and Fire/Medical was called. I do not lose consciousness during these, but become less aware of what’s happening outside my little bubble. The officers notified our son’s school while I was being checked out. I declined being taken by ambulance to the Emergency Room, and would have my husband take me there right after we got our son. The ER placed an IV, started fluids, and drew blood. I was given an anti-seizure medicine and sent for a CT scan of my head. Right after the scan I had another episode. This time they gave me a more powerful medicine. My CT came back normal, so they sent me home loopy and half asleep, and told me to follow up with a neurologist.

The next morning, I had a follow-up at the surgeon’s office. Guess what? Another seizure. Another Fire/Medical call. I declined going to the hospital at all this time. I wasn’t going to have them inject another knock me on my butt medication and send me home. A waste of time in my opinion. I finished my appointment and left with another neurologist referral.

A couple days later, I got in to see the physician assistant at the pain clinic. I had a seizure while there too. She wanted to call 911 but I begged her not to. Out of respect for our wishes and because she’s seen me for four years, she agreed but was not comfortable with it. At this point, I was having four to eight episodes a day. She prescribed me a strong muscle relaxer and sent in a referral to the neurologist.

The next week was filled with searches to find a neurologist that accepted new patients and our insurances. The seizures were leaving me so tired and I had what I thought was a cold, so I was spending a lot of time in bed. My hubby told me I should try to get up more so I didn’t catch pneumonia. Well…

I went from low fevers, to shivering cold, not sweating and spiking a fever of 105 before finally going to the hospital. This time was a longer visit. I was admitted that Thursday night an stayed until Saturday evening, to treat sepsis and pneumonia.

Selfie because hospital gowns are glamorous

And of course Mr. Cuddles was there with all his shenanigans…

He has a coffee addiction

“Not that button!”

I’m feeling much better from that now, just still lacking energy.

I had a follow-up with my family doctor for the hospital visit and also to get another referral to a neurologist (as required by insurance). You guessed it, another episode. This time, he was able to say that he thinks these are temporal lobe seizures. But of course, the neurologist will have to make an official diagnosis. We actually left that appointment feeling relieved. We finally felt like we knew what we were dealing with.

As long as I take my muscle relaxer every eight hours, the seizures are less frequent and less intense most days. After a lot of hoops we had to jump through and some drama, I finally have an appointment scheduled with a neurologist for the 23rd of this month (thanks to my momma bear). In the meantime, I can’t drive and kind of need a babysitter. I also found this information the other day; and I’m not too thrilled about it, but I understand.

I will try to keep you posted as much as I can. Take care, my friends and God bless you.

With love,

J♡