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.

Life After Brain Surgery

A week ago my family was all meeting up at a parking garage outside of University of Maryland Medical Center Baltimore, gathering our belongings necessary for the long day ahead, and rushing inside to get to where I needed to be by my 5:30 appt time. Sadly, the hospital sent us on a long run around until we finally landed right where we needed to be, but we got there. Tension was high among the group, of course. The nervousness in the air; palpable.

I was asked if I was ready, more times than a few. How do you answer that? How are you ever ready to risk leaving your family behind? How are you ever ready to risk not coming back to them the same as you left them? So I lied. I was ready, yes. I lied and said I was fine. I lied and said I was going to be okay. I was petrified.

Questions began, IV was started, prepping was moving at the speed of light, but I was still stuck. Lingering, waiting for my entire family to hug me all at once. What would be my last thing to say to each one of them? How do you decide that? You cannot scare the kids, Kristen. You cannot upset your sisters, Kris. And my God, don’t let my parents feel my fear.

Last night I was asked what I felt in those moments. What was it that I told myself to help me get through it and make the final decision to go through with it.

The answer is my life. I wanted my life back. The vibrant, exuberant, fly by the seat of her pants girl was gone. She was replaced long ago by a zombie of a woman that was barely surviving this world. She could no longer head out on grand adventures, planned or otherwise. She spent her days hardly able to make it up and down the stairs let alone to a school event with homemade brownies.

She couldn’t make it to concerts with her sisters anymore. She had to cancel plans with friends more times than a few. She couldn’t get outside and run around with her two sons anymore. Life as she knew it ceased to exist.

But this morning. 7 days after the scariest decision of her life, that girl woke up at 5 am without an alarm clock, went downstairs without a single creaking or aching bone (stairs are a different story), and made herself a cup of coffee. Do you realize how long it has been since that has happened? I won’t count the nights where sleep never happened and I got up at 5 to start a day after a night of no rest. I’m talking actually slept for hours, woke up, went down, and made my own damn coffee??

Let’s ask my little baristas when they wake. I bet ya it’s been a while.

Good morning, world. It’s good to be back.

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

My New Normal

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….

My New Journey

Hey guys. As I’ve touched on in previous posts, I struggle with fibromyalgia. I finally said enough is enough. Last week I decided to give something else a try. After a few discussions with my doctor regarding gut health, and a few chats with a good friend, I began my journey with Plexus.

Just a few days in and I feel AMAZING! I can tell you that I know this is going to be life changing for me. As I discussed with my friend, I’m going to share my journey here because I would like to reach a greater audience than just my facebook page. I hope you all will enjoy seeing me go from the miserable woman I had become with fibro back to the energetic and active mom of three!

If anyone is interested in learning me, comment here and we can set up a line of communication. This product is already changing my life, it could change yours too!

~What if you could change everything?

~Kristen