Life After Brain Surgeries

Yes, you read that right. Surgeries. My one planned brain surgery turned into 2 brain surgeries, several procedures, and 3 hospitalizations. I never planned on this.

I realized, after chats with my bestie, that people only see what I allow them to see. I post on social media with updates and I always seem so positive and upbeat. What people don’t see are my breakdowns.

I breakdown at least 3 times a day. Sometimes more. Songs that used to give me strength now make me weak. Things, simple things, I can no longer do make me feel depressed. I realize my body needs time to heal. Twice as much, if not three times as much as I planned. And that’s frustrating.

From time to time I discuss my pain, but more often than not, I’m reporting my pain free days. I don’t discuss my nights without sleep due to pain, my days when I’m too weak to go up and down the stairs, or the times I wish I had never had the surgery to begin with.

I don’t let people see me cry. Only those close to me have heard me cry to them on the phone. I lay here alone crying so often it’s beginning to make me think I’m losing my mind. I will break down and cry over the simplest things.

The nurses and others who have had similar surgeries tell me that’s normal. To cry a lot. To be weak and tired. But I feel so alone, so tired, so sad. I had the surgery to get my life back; to give my kids their mom back. Last month, I spent more days in the hospital than I did at home. I have had stitches (technically) in my head for over a month. I have to wrap my arm in plastic before showering (I have a PICC line for IV antibiotics). My life isn’t normal right now and I’m so damn sad about it. I struggle to help my kids with things. I struggle to do what I need to do to care for myself let alone 3 other people.

So while many see my positive and humorous side and think I’m just oh so strong, I’m not. I’m weak. I’m sad. I’m tired. I need y’all to understand that.

And as harsh as this may sound, being told to keep my head up, be patient, or to stay positive doesn’t help me. It makes me feel worse. My head you want me to keep up is broken. It’s broken, swollen, and hurting. My patience has worn thin. And it’s hard to remain positive when so many negative things have happened to me.

Yes, I realize some people have it worse. I know some people didn’t wake up this morning. I realize my community has lost many people lately. And I feel the loss and I feel the pain of all those suffering. But that does not make my feelings less valid!!

I am allowed to vent. I am allowed to feel like this. My feelings are valid. I do not expect any replies to this post. I do not mean to hurt any feelings. I just needed to say all of this. I apologize if any feelings have been hurt. It’s truly not my intention.

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.

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