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.

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.

When You Love Someone

When you love someone, you will do the most ridiculous things! When they don’t love you back quite the same, or at all, you will reach new levels of ridiculousness. You will look like a fool, to them, to yourself, and at times, to those around you. You will put yourself out there only to have your heart crushed by the inevitable truth that they just don’t love you the same, or at all.

Love them anyway. People who have been hurt in the past may be a little more difficult to love, but no less worthy of your love. So love them anyway. Love them with all that you have. Show them what love should be. Sure, you have to learn at some point when to stop pushing for something that may not be meant to be. And finding that fine line may be difficult. But don’t give up. Love that person anyway. Even if just from a distance. And if you decide that it’s best to walk away, you can still love them. Nobody can make you stop doing that. Love them anyway.

Understand that their inability to receive your love is not a reflection of you, but a reflection of all that they are struggling to overcome. As humans, we inherently crave love. We seek out those that we find can provide us with the comforts of a loving relationship. But some people have been damaged by the toxicity of their pasts. Those people are the ones that deserve a little more love.

I’m not telling you to give so much of yourself and get nothing in return, time after time. I am telling you to be patient and understanding. If the person you love tells you they love you, but they are struggling with demons of whatever kind, be patient with them. That is part of the deal. Learning to be patient, considerate, and compassionate are all difficult things when you feel like it should come as easy for them as it does for you. I get that. Trust me! It just isn’t that easy for some. Not after some of the things people have gone through.

I write these words as a woman that is very difficult to love, or at least I once was. Now, I’m the woman trying so desperately to be patient with the man I love while he figures out how he wants to move forward; scarred from his past. And I think of all the times people gave up on me because I was a little more difficult than they thought I should be. I won’t be that person. I won’t give up on him.

~Kristen

Hurt People, Hurt People.

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.

Life With Chronic Illnesses

A couple weeks ago I visited my rheumatologist to discuss my fibromyalgia. I haven’t had too many “bad” days, so it was just a routine visit to discuss meds and whatnot. He informed me that a new medicine I was on (prescribed by neurologist) would likely lower my white cell count causing me to have difficulty with fighting off infections. Yay me.

Today I got about 40 needles in my face, head, neck, shoulders, and back. These needles, though incredibly painful, allow me to function. They allow me to get up out of bed and at least try to be normal. These needles are botox for migraines.

But before the needles happened, I had to discuss some weird side effects from that other medication (mentioned above). I explained to my neurologist what had been going on since increasing the dosage. Skin has been peeling off of my fingers and my feet. I’ve been sick with what feels like the flu. Turns out I am severely allergic to the only medicine that was keeping another chronic condition semi-tolerable. A condition I visit a neurosurgeon about tomorrow. A condition that chose me as one of its few victims this year. Trigeminal neuralgia. So tomorrow I will visit University of Maryland Neurosurgery to discuss surgical options for this pain, also known as the suicide disease.

Have you any idea the fear involved in deciding on a procedure that uses radiation to essentially kill a nerve right where it exits your brain? And even though the pain is the worst I’ve ever felt in my life, this procedure scares the hell out of me! I realize that with the 3 conditions, also known as my pain trifecta, I am not living the life I wish to live. And I want my life back for sure. The risks, though; I’m just not sure I’m ready for them.

At this point, I am not medicated since I had to stop the one and the other makes me way too antsy. I will struggle through one more night of insomnia tonight before making my way on my 3 hour journey tomorrow to see the surgeon. I’m scared.

Knowledge of My Ignorance

I found a new book recently that is a daily devotional for intellectuals. It offers various readings each day presenting facts from the seven fields of knowledge. While reading the other night from the area of Philosophy, I came across an interesting idea presented by Socrates. Without the exact quote, the book presented it like this:

Socrates explained that he was no wiser than any other; it is only that he is aware of his own ignorance. That is what made him intelligent, in a sense.

I went online and found a few quotes that were similar and wanted to present them and discuss them here along with my thoughts on the concept.

True wisdom comes to each of us when we realize how little we understand about life, ourselves, and the world around us.

 

And


I know nothing except the fact of my ignorance.

~Socrates

Socrates evidently challenged men that claimed to know so much about various topics just to prove they did not know as much as they claimed to know. I think we can learn a lesson from this. It is our ignorance and our lack of knowledge that allows us to see ourselves for what we truly are. The ability to realize that I am ignorant to so much is what provides me with the wisdom in my life. Understanding that my knowledge is limited allows me to respect that which I do not yet understand and strive to continuously add to my knowledge base. However, I know that I will still be learning as long as I live, and I also know that I will never in my lifetime gain every bit of knowledge which exists in the world.

Something that has always fascinated me about those with intellectual disabilities is that they are content in their ignorance. Consider those with Asperger’s and their superior “hyperfocus” on topics which interest them; they continue to learn as much as they possibly can about a topic and are not concerned with their lack of knowledge of other topics. To me, that seems to put them at a higher level than most people. Many of us like to pretend that we know so much (myself included) and we are merely full of useless facts that do not provide anything to the greater good. We like to deny our ignorance of certain things in order to maintain a superiority complex. Those with intellectual disabilities seem to be aware of that ignorance and completely accepting of it. They do not need to know everything. They know what they know, and they are happy in that knowledge.

It makes me wonder if my desire to know so much is commendable or detestable. Should I continue to strive for knowledge or be more accepting of the fact that regardless of my quest to learn as much as I can, I will never learn it all? Should I be content in my ignorance of those things which I do not, and may not ever, understand? What are your thoughts?

~Kristen