Burn Baby

On top of having 3rd degree burns on my hands the last few weeks, I seem to be slipping overall. I couldn’t even remember how to get to my blog here except that it had the word “word” in the address… Stuttering has started. My sleep is worse. The pain is worse. My heart is worse.

I’m hoping I’m just going through a “bad spell” and it’ll turn around soon. I have appointments with the cardiologist and neurologist tomorrow. We’ll see how those go…

It hurts to type so I’m signing off. Please keep me in prayer, send good vibes, light some incense, whatever your beliefs are to help my doctors find the cause so we can manage the “disease”.

I’m so tired, and so close to feeling hopeless as the pain just seeps deeper and deeper. I’m a stubborn one, and thank God for that, but I could use… help… to keep fighting this.

Advertisements

Closing the Age Gap

My great grandmother and I were identical despite the years apart. The few pictures held in treasure boxes throughout her attic confirmed it. That was where the similarities ended, I’m afraid, but I didn’t find that out till years later.

It seems that my grandmother has been quite on the decline since her original diagnosis of congestive heart failure. There is not a lot of info passed to me from my mother, she doesn’t tend to talk about people other than herself. I did however hear today that she was in the hospital for quite a long while last month due to a new degenerative disc condition they’ve found along her neck.

We once again have a matching diagnosis, though mine seem to have been found sooner than hers. I have more time to correct or adapt to mine…

Makes me wonder what else we might have in common that I haven’t been told about.

I am wondering a lot about the secrets everyone keeps.

Brain Babble

It’s been a rough week. I can’t lie about that but I certainly want to.

Multiple issues Sunday and Monday, a couple this morning. Perhaps one of the most disheartening realizations was the fact that, even though I knew I shouldn’t go on rollercoasters, I will never be on another one as long as I’m alive and  “healthy”. I tried swinging next to my daughter. Swinging, you know, on a swing set? My favorite part as a kid was always that arc right before you got too high and the sing started jumping. I didn’t even make it to that part before “something” happened and I almost fell out of the swing. No swings for me. No rollercoasters. That family trip to Six Flags my husband and I have been planning for when the kids got older just got thrown out the window.

But, hey, even just typing about it I started to get upset and get a little dizzy, but that could just be my medication kicking in.

My husband met his daughter, finally, after being denied for so long by her mother! From what my husband relayed to me and from what I saw myself on her social media stuff… my husband was right in that he made quite a positive impression on both his daughter and her soon-to-be-stepdad. He made enough of an impression on the latter that it has caused his ex some second thoughts in regards to whether or not she wants to indeed marry her third child’s baby-daddy. Interesting creatures, people.

I need to go in to my neurologist, the twitches in my hand keep getting worse. I don’t know if it’s related or not but I am forgetting and mixing up words I shouldn’t be. I can’t help but feel like I started going downhill super fast in one way once the medication was started for something else. What if the seizures are an allergic reaction to the medication? What if I’m not as sick as she thinks or it’s not what she thinks? I’m being hopeful, I’m trying not to be naive, I’m trying to ask questions so I don’t end up like a vegetable for the rest of my kids’ childhoods.

There’s so much in my head, but I am so tired. My sleep has not been restful at all the last few weeks. or maybe just two weeks, I’ve lost count. It’s my body, adapting to the medication.

Even now, I can feel the fire in my hands under my skin has returned. It makes me want to take an ice bath, and I hate the cold, normally the cold hurts. Ah, well,  life goes on.

Hopefully, I’ll be sitting down with my son’s principal tomorrow to discuss why the hell she let a child get away with punching my son in the eye. Accident, my ass. An accident wouldn’t have landed a fist in his eye, instinctually your hands are open when you fall. Just freaking common sense.

I have found myself missing my fellow writers as of late, the ones I used to meet with, and the community of bloggers I was with before I was here. Things keep changing, eh?

Literary Lion Writing Prompt: Gamble

Here is my entry for Laura’s Literary Lion Prompt, Gamble, in 400 words or less. Many thanks to her and her amazing creativity for these prompts!


 

Fly Away

They keep telling me what I can’t do. They keep telling me I have to be careful. To be safe. I’m sick. I’m fragile. I can’t be like other kids. I can’t jump and run. My teacher says to be patient, that maybe I’ll be stronger when I get to first grade.

I’m mad.

It’s not fair.

I’ve been swinging as high as I can go, the wind helps me feel better…

But the tears still hurt.

I need to get higher, even as the swing hiccups and snaps, I want to go higher. I want to get away.

Maybe… if I get higher enough… I can let go… and jump into the sky… Or… they could be right…

 

Word Count: 114

Ba-Dump, Ba-Dump, Ba-Dump

It’s been another long day. BOB’s still having night terrors. It makes everything more difficult, health wise and emotionally, when I don’t sleep well. I kept thinking that once I had a good “bank account” of decent sleep I could work off of it if I had a rough night here or there. NOPE.

Today is leaving me a bit downhearted yet hopeful, just in different areas of my life.

I have another 7 day heart monitor on and, yep, still allergic to whatever adhesive they use. I was really nervous about it all morning but a swift kick in the ass from my amazing stepmom, which was exactly why I contacted her, helped put me at ease by getting me out of my own head. I’m starting to recognize that downward-spiral starting more and more. Whether it’s the seizure medication or the heart medication or what, who knows at this point, but something is helping. Hopefully, once all this “trouble-shooting” is over we’ll know what the root of the issue is. My biggest concern is if/how degenerative the issue may be and if it might be genetic/given to my children.

Another difficult part of the last day and a half, specifically, was the “typical” physical and emotional detoxing ChaosMonkey does when he gets home from his dad’s. Today, it was a bad attitude, negative comment, or straight up mean/overly physical response to everything. After stepping way out of bounds when we got home we had a swift and serious discussion about what his issue was and how, given when and how often it has been occurring, what he, myself, or we needed to do to help him. He is hesitant to do anything progressive… given the range of emotions that went over his face, however, he knows what he doesn’t want to discuss and/or face and, obviously, doesn’t want to discuss and/or face. *Sigh* It’s that “you can lead a horse to water” thing all over again.

On the upside, after speaking with the Hubby, it sounds like the guys he’s under have no idea what they’re doing in relation to time off for Christmas. He might have the opportunity to come home for Christmas! Yay! His mom might even be willing to help fly him home so we could actually spend it with him.

A crinkle for you, and a crinkle for you…

I fell like my entire existence has shifted ever so slightly from the reality I thought I lived in. Since “the episode” that I was told was probably a seizure I have had a handful or two of tests and referrals for other tests. Turns out, I have probably been having small seizures for quite a while… since I was a kid if not my whole life kind of while.

It seems my mother’s term “artistic personality” is slowly being transformed into “seizures” or “epileptic activity”. There is no familial history of seizures neither side… or so that is what I’ve been told when I asked. Other than my cousin, that is… but he’s kind of a special case, the kind that has spent more of his life in hospitals than out.

I’m experiencing a combination of out-of-boniness and life-passing-before-my-eyes these days. I’ll be in the present, then be reminded of something that happened years ago, something that was “artistic” or “just me being me”, and I wonder… was that another “episode”? The sudden loss of balance while standing still, the inability to walk in a straight line, my body’s sensory overload that allowed me to navigate so many situations while blinded by allergies, the times my body just quit on me and my muscles just ceased working and dropped me to the ground… the constant low grade dizziness that accompanies me while writing “in the zone” during stream of conscience pieces…

It just keeps going. That’s what my mind does, it takes a moment in time and spins out entire what-if universes baSed on how things could have gone.

The moment I keep coming back to is when I was late for school in second grade. There were stairs and stairs I was running up, all alone after the bells had rung, when all of a sudden my leg just went away… it was only for a second, but… my mind keeps going back to that moment that I didn’t give a second thought to at the time. It barely registered, actually, as if I could barely remember it at the time even, I just got up and kept going, like I did so many times after that. So many things I ignored or didn’t fully register… but I keep going back to that particular moment.

I feel like I’m slipping out of my mind just thinking about it all.

Is my creative just synapses misfiring? Are my insights and connections just the culmination of a short-circuited, malformed mass of a grey Tesla knock off?

And… do I care? While… it is unnerving to think that my mind could basically be the result of a lifetime of electrical mistakes, what is life if not an ongoing process of learning from one’s mistakes? Is any piece of art perfect or is it the completion of an idea grown with both structure and errors melded together melded together into something beyond the original conception?

My brain may very well be misfiring, and may have been my entire life. That doesn’t make me any less me. The person I might have been doesn’t matter, the original design was a springboard for who I would become with and without my individual choices. Who I am today is merely a springboard for who I am tomorrow.

And you know what? Tomorrow may be harder. Tomorrow may be better. I don’t know. I don’t have any idea. But! Even if my doctor(s) knew what was going on and we had a plan of attack to cope/treat whatever it may be, it wouldn’t matter.

Tomorrow may be harder. Tomorrow may be better. Not one knows. The allusion of control that “knowing” gives us is a frail thing to hold on to, it’s a mirage we grasp at today in hopes that we will have something solid tomorrow.

What will be will be but that doesn’t mean I’m not going to fight to make it the best I can. What will be is a bigger version of what I’m looking at in the mirror every day; a gran piece of art that is an enmeshing of what is within our control and what is without.

I will not relinquish my part of that construction. I will take my mistakes, I will take my talents, I will take my misfires, and my choices to struggle as strongly as I can towards a beautiful completion.

I Can’t Do That Again.

I remember being really confused; getting up off of the couch to go lie down even though I had been lying down on said couch, wandering around looking for my bed even though it hadn’t been moved, the top part of my heart refusing to beat enough while the bottom of my heart raced, pouring sweat. I must have passed out because the next thing I knew my husband was waking me up, seems I had finally made it into bed at some point. This was last night.

I saw my neurologist the today, made an emergency appointment. The only thing that had changed recently were the meds she put me on for the fibromyalgia back in September, meds that had been helping a lot. I mean, a lot. I explained what I remembered to the nurse. My doctor spent an hour looking at what must have been my previous test results before seeing me. Then I explained it again to her. She gave me a referral to go see my cardiologist again and get another heart monitor put on, not sure for how long, I’d have to look at the request again. She’s sending me to be thorough. What she really thinks happened was a seizure.

Turns out my initial brain wave study, whatever they call it, had some abnormal waves in it but since I didn’t express having any issues when she questioned me (very intensely) during the follow up for that test she dropped it. Now, she is pretty sure there is a problem. I had felt better when my husband woke me up, so I had waited to go in… she told me never to wait again. “If this happens again go straight to the hospital. You have small children. They need you. You can’t do that again.”

I’ve been thinking about it pretty much all day. Except for when I play with the puppies or am helping my eldest with his book project. A song came on the radio that got me thinking… how many of my “artistic” quirks might have actually been signs of a problem? How many times had my mother given other people that look and laughed, saying it was my artistic personality? How many times did I lose time spacing out or go into creative trances while I was writing or drawing that I couldn’t account for? Were these signs? Were these seizures, too? Am I panicking? Overthinking it?

“If this happens again go straight to the hospital. You have small children. They need you. You can’t do that again.”

That phrase now comes into my head every time I think about my kids.

I called both my parents to see if anyone had a history of seizures. They both said no. My dad wanted to know why I was asking, my mom told me it wasn’t a good time and she’d call me back later… and didn’t. Typical of them. My dad might have been gone more but he was actively interested when he was home. My mom was always home and totally uninterested. I was always sick, though…

“If this happens again go straight to the hospital. You have small children. They need you. You can’t do that again.”

It makes me wonder. It makes me want to cry. It makes me want to call up a lawyer. It makes me want to add to those letters I keep writing and saving for my kids.

“If this happens again go straight to the hospital. You have small children. They need you. You can’t do that again.”

It’s becoming a mantra in my head while I wait in another medical testing limbo.

“We’ve always known your brain was a little abnormal.” My dad had joked.

“If this happens again go straight to the hospital. You have small children. They need you. You can’t do that again.”