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

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.