Little Things

So yesterday I broke down several times. Surgery is one week away. So of course my nerves are a wreck. It’s normal. I’m told I wouldn’t be human if I wasn’t worried. But let me explain why I broke down yesterday.

I was cooking more meals to freeze for the kids to have during my hospitalization and recovery. My oldest son was practicing his trumpet. (actually a 1956 coronet which is so bad ass) I decided to pick it up and wow him with some things. Ya see, I taught myself to play the trumpet when I was 10ish. Yep, picked one up and taught myself. I was incredibly talented. I say this not to brag, but just to say I am confident in that fact. My talent was passed to my kids, each knowing how to play but only my older son choosing to play. Anyway….

So I played a few scales, a little improv, and then it happened. The damn nerve in my face fired like crazy. Electrical shocks down my jaw. The hammering pain in my bones of my face. And reality hit me.

Even though I don’t play regularly, it is something I do enjoy. I love to just play and reminisce about my youth and my time in band, both concert and marching band. How I was chosen as a freshman in high school to play with the University of Maryland Eastern Shore band for commencement that year. How much I loved having solos during concerts. How I know it was something that made my parents proud. And it truly was a passion.

Now, I can’t play. And that devastates my heart. If they can’t fix my nerve disorder with this surgery I will not be able to play. Ever. A little thing with a huge impact.

My heart is hurting. My soul feels like it was a personal blow. She is weary. She is broken.

Little things can bring with them the misery of a thousand broken hearts.

Screaming in Silence

Pain, ripping flesh, breaking bones, searing flames of agony.
This isn’t torture. It’s my normal.
Tears flow down swollen cheeks to meet the pool gathered on my pillow. How many more nights will this flare last?
The drill in my ear, pressure building. Electric shocks through my jaw. Someone stop it.
Turn off the power. Cut the nerve. Rescue me. I’m dying. Please help me.

I wrote that poem in the middle of a flare up of the neuralgias I love with. They are always constant, but some days they flare so bad I cannot function. It’s unbelievably frustrating. The pain is beyond what the human body should have to endure. 10 days to surgery. I am so ready for this to be done!

~Kristen

Night Thoughts

I often lay awake at night. Blame insomnia. Blame anxiety. Or blame what I call painsomnia. But whatever it is, I just lay awake in bed staring at the ceiling, wondering what this world has in store for me next. And why I was chosen for such a difficult path.

It often sends me down the path of wondering about religion and how certain religions would look at my situation differently. Some people say it is what God has intended and he wouldn’t give me more than I can handle. Or that he may be preparing me for something even more difficult so I must become stronger. You get the idea. Others might say it is my karma. A punishment of sorts for some thing(s) I did in a past life. I realize that there is also karma in this life, but I know I have not been a bad person. Not bad enough to warrant the life I am currently living.

Either way, regardless of why or how I got here, I am struggling. I wonder why I don’t have someone by my side as I take on such a difficult journey; why must I do it alone? Lately, I don’t even feel like my parents get it. I don’t feel that they truly understand the intensity of what I live with each day. Of course, nobody really does because I don’t allow anyone to see. Fact is though, folks, that I am having brain surgery. I can’t make up some mysterious condition that will convince a neurosurgeon to be like, “Yup, gonna cut her brain open and see what we find”. It doesn’t work that way. And in today’s times, we have a plethora of information at our fingertips. If you don’t know about something and choose not to learn more, that is out of pure ignorance, not for lack of access to information.

I just wish I had more people close to me that understood. It seems like those that understand are from online support groups and they are all over the world. It seems extremely unfair. I realize that I am one day going to look back on this and realize it made me stronger. And I’m sure there is some grand plan in this universe that I am aimlessly approaching. One day, this will all make sense. For right now, I’m tired.

Chronic Haze: The Sad Truth of Chronic Illnesses

For many years I have felt as if I’m living in a haze. A mere shadow of my former self. Not the woman I once was. And surely not the woman I intended to be at 35. Weak is an understatement. Tired doesn’t even begin to describe the level of exhaustion that I face. I want the old me back.

I want to go back to that vibrant and wild eyed woman who would drop everything for life’s next adventure. The girl that was always in the mood to dance with her kids or a perfect stranger if the timing was right. The girl who loved to spend hours in the kitchen baking treats and cooking extravagant meals.

I have become a zombie. A shell of a human. A remnant of the woman I once was. It is unfair. It is cruel. And it is depressing.

It is going to be a long road of recovery, and I am already fully aware of that. I just know that once I climb this mountain, I am going to find her again. Waiting on the other side. Ready to greet me with a cup of hot tea and a million ideas about what we can do next. She’s in there, she’s waiting.

Brain Mush

Hey guys. So I’m like 18 days away from brain surgery and my brain is just a mess. We already know my nerves are bad, hence the reason for the surgery. But lately, between the chronic pain, planning for surgery, and the fear and anxiety that go with it, my brain is total mush.

I get all these ideas of things to write, yet I never actually do it. I have note after note in my phone with ideas for blogs or poems or stories and there they sit, just in the note pad, not going anywhere, not being seen by anyone. Such a sad thought, huh.

So I promised myself today that I would post on my blog. That I would get back into writing, no matter how mundane and repetitive. I intended to keep everyone posted with like daily updates on my journey towards surgery. Obvs, that hasn’t happened. I have a hard enough time keeping up with my school work, the kids’ school work, and the household crap. Ugh.

Anyhow, so surgery is getting closer. I have been working on a plan for who will have the kids and who will help me at home once my hospital stay is over. That isn’t going well. This coming weekend I will be meal prepping probably 40 meals, just in case I am down for a while. Honestly, I thought part of being in a “close-knit” community meant I wouldn’t have to worry about such things during times like this, but it seems I don’t know the right people or something. So I’m just going to plan myself and make sure my kids are covered when I’m not able to cook for them. I mean, this is major surgery. I won’t bounce right back and be in the kitchen like June Cleaver the day after they slice into my skull. Right?

So meal prepping it is. Any ideas are greatly appreciated! You could comment here with suggestions!

For now, I’m going to write as many things as I can and see if I can get my creative juices flowing again through all this messed up crap in my head.

 

Monday Morning Ready!

Good morning all. I know it’s been a while since I posted anything or read any blogs. My health has been my primary focus lately. Brain surgery in 23 days!! But, while I’ve been basically bedridden, I have been doing a lot of thinking.

I have a million ideas for projects, community involvement, books I want to write, and opinion pieces I want to write. However, my brain is total mush!

Any suggestions for organizing my thoughts and getting these projects underway? 🤔

Tests Approaching: Fear Rising!

Later this week I will travel 3 and a half hours for additional testing and another visit to a specialist. This specialist, an ENT, will be able to rule out any potential structural issues inside my ear that could be leading to the pain. The neurosurgeon doesn’t think this is the case, but wants to make sure he rules it out before we move forward.

I will have an additional MRI done with and without contrast. Similar to ones I’ve done in the past, but I don’t recall ever having the contrast. I also haven’t ever had one that will show quite as much detail as this one will. This will show thinner cuts which will allow the neurosurgeon to see more detail of the vascular and nerve systems within that area of the brain. We are hoping this will show what he needs to see that will help determine how involved the surgery will be.

I have decided to take this trip alone. Partly because I don’t want anyone else to have to sit around while I’m in the machine and doctor’s offices all afternoon. But also because I am afraid of what will be found and I honestly would rather take bad news alone than with someone else. I’ve always done it that way, so it seems normal to me. I’ve been alone for every other crappy diagnosis, so why not this one, right?

I have this fear, and I know it is based off of a really slim chance, but it’s still relevant in my opinion. I have a fear the doctor will find a tumor compressing all of the nerves and more than just a simple vascular compression. With this fear, one would think that I wouldn’t want to be alone. But I really feel like I wouldn’t want anyone looking at me during my initial reaction to something like that. I would want to process it alone before telling anyone.

I know that the success rate of this upcoming surgery is very high, but I also know that risks exist. As the appointments get closer, and surgery will be decided, I am more and more nervous of the what ifs. I know this particular post is a bit of a whiny mess of words, not really making much sense.  Please forgive me. Perhaps I will have something a bit more coherent as the time draws closer.

Kristen