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.
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? 🤔
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.
Friday I was informed that I am going to need brain surgery. More invasive surgery than previously discussed. And it is a scary, hopeless feeling. What if something goes wrong? What if it doesn’t even fix the issue? Plus a million more questions. Friends have told me to think of the positives. To look for the end result. And to consider that if it’s fixing an issue, then just go for it. But those friends are not able to speak from their own personal experience. They aren’t the ones that will lay on that table while strangers slice them open, remove a piece of their skull, and go digging around extremely close to their brain stem! I don’t know if you realize just how essential the brain stem is; oh ya know, just essential for LIFE!!
And what about recovery? My kids? Work? Life on a regular basis during my recovery? Who will help me? Who will care? The questions are swirling and won’t let me rest. I’ve gone from tears to laughter. Tears because of the fears and laughter because of the stories I will tell a year from now when someone notices my scar that I will be rocking. Shark bite? Nah, too played out. Jumped by a gang of clown ninjas? Maybe!
Thanks for reading my random and scattered rambling. This is the first of many posts as I trudge down this new path. I’m not sure why these cards have been dealt, but I do know that these nerve conditions picked the wrong girl!
**Image is my own.
Do you realize just how difficult it is to come to terms with the fact that someone wasn’t truly who you thought they were? To find out that the person was lying or pretending the entire time? It’s a gut wrenching feeling to think that all the words they said that warmed your heart were nothing but bullshit. It’s a horrid thought to think that they were laughing behind your back the entire time. It’s embarrassing and hurtful and humiliating.
We need to do better, folks! We need to stop hurting people just because someone else hurt us! I have done it. I have been guilty of this myself. I have allowed my unhealed wounds to bleed all over another person. An innocent person. And it isn’t fair. I know that now. And even though I know better and try to do better, occasionally things slip past my radar and I am the one left covered in the blood of another person’s old wounds.
It hurts. It hurts like 10,000 knives ripping through my flesh, carving through my bones, on the way to my tender heart. Hurt people hurt people. Say it again, hurt people….hurt people. If you are hurting, please heal yourself. Stop allowing your open wounds to drip the misery onto a new relationship or interaction with someone that had nothing to do with your pain.
Yesterday I was diagnosed with now a 3rd pain disorder… Er disfunction/disease/ailment/illness that causes pain. I don’t even know what to call it. All I know is I’m really over it.
I’m over not being the woman I want to be. I’m over not being the mom I was; the mom my kids deserve. I’m over people questioning my constant illnesses and my constant pain. I’m over people making jokes when I slur my words or when I walk with a limp. I’m over this daily struggle.
But it’s my new normal. I have to learn to deal. 3 years ago I woke up with a migraine that never left. Thankfully, botox injections ease them enough so that I can function. Almost 2 years ago I was diagnosed with fibromyalgia. That was also a major change and adjustment. One I still struggle with daily. And now trigeminal neuralgia. I do not know much about it yet other than it’s rare, it’s painful, it can happen to anyone, and there is no cure; only the attempt at treatment.
I am not looking for sympathy or anything. I am primarily writing this just so I can get it out. So I can face the music and say to myself, “this is your new normal so learn to deal”….
I’m not sure what the future holds or if the meds will help me. I also don’t know what fresh hell awaits me for next year. Anyone wanna place bets? I’m kidding, don’t be so sensitive!
Until next time….
Hi guys. It’s been a little while. I’m trying to write everyday, but as you can probably guess, most of it is in a journal and not published here. I am still trying to figure out what I want to say. And I’ve got nothing.
My computer crashed last week. It felt like someone lopped off my arm. Seriously. I had no idea how close of a relationship we had until that little joker (I want to use so many other words here) decided it wanted to just quit on me. Gave up. Like all the rest. Anyway, that’s a story for another day.
Thankfully, I spent a great deal of money a few years back to buy my kids an all-in-one desktop. So guess who has it now? LOL. I think I will buy them a new one instead of replacing my crappy laptop. We shall see.
I’ve been letting a lot of thoughts float around in my head. I will get a word here and there….then nothing. I cannot seem to string things together. I’ve got nothing.
Do you ever feel like that? Like you have so much yet nothing at all? That’s how I feel sometimes. Like all that I have, all that I own, still adds up to nothing. It’s a strange feeling, actually. I feel myself going through something. I’m just not able to figure it out right now. I’ve got nothing.
Stay tuned. Perhaps I will share some recent poetry tonight. After lecture that is!