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 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.

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….

The Next Year of My Life

We all know that on New Year’s Eve, everyone makes resolutions for what they intend to change in the coming year. I think that’s interesting, but it doesn’t make sense to me. It’s not your next year, it’s justĀ the next year. Your next year begins the day after your birthday. That is technically the next year of YOUR life.

Well today is my birthday. So I have been thinking about what I want to do differently in MY next year. For my next year I have a few things that need to change. So I have compiled a list.

  • More gym time. Stop making excuses and go.
  • Less saying yes, more saying no.
  • More me time.
  • More writing.
  • More positive thinking.
  • Go to bed at a decent hour.

Now let me explain. I was going to the gym pretty regularly. Then I got sick with the flu. I kept putting it off then it became a thing of the past. I want to go back. Less saying yes, more saying no. This is because I am constantly being asked by everyone to go here, go there, do this, do that. I always say yes in order to please everyone else. But then it cuts into my time. SO NO MORE! I need me time. I need time for my obligations.

Going to bed at a decent hour may help me get up earlier. That will also give me more “me” time. And more writing time. I try to remain positive. But chronic illnesses are a bitch. Seriously. I’m hurting all the time anymore. It’s like the good days are few and far between.

20170313_020900-1.jpg

This was an actual fortune of mine. So it just fit.

I am focusing on school right now as I look for the perfect job. But tonight I will finish my school work early, go to bed, and pray that I can get up early in the morning. Then, once the kids go to school, it’s the gym for me. When I get back home from the gym I can do more school work. This weekend will be busy celebrating my birthday with friends and family; they insisted. But tomorrow is the first day of my next year and I plan to make it great.

What’s your plan for your next year when you finish your current trip around the sun?

~Kristen

Sleep is Overrated

Ya know, a lot of people in this world suffer from insomnia, caused by various things. Me, well I have chronic migraines and fibromyalgia. I also think my brain is way too overactive!! Now the docs wonder if the migraines and fibro caused the insomnia, or if my insomnia has caused the migraines and fibro to be worse. Well honestly, I couldn’t care which one caused the other. I just wish I didn’t have to deal with any of it.

Image result for migraine

But when the house is quiet, I can think. I completed some work for college (my Masters program) and was able to write a blog post earlier. Now I’m sitting at the computer listening to my music, wishing I had the magic secret to get rid of all of my ailments.

I’m waiting for the approval for botox (for the migraines) but the nurse said that could take months. Thanks insurance company. The fibro is pretty well managed, at least the nerve pain. The weakness, fatigue, muscle spasms, and all the other fun stuff are still here. But I manage. I think the migraines bother me more than the fibro because they never leave. At least the fibro only hits me hard when I’ve done too much. I mean it’s always there, don’t get me wrong. But some days I can be pretty productive even with the fibro pain. The damn migraines drive me insane though.

I read earlier about a woman that suffered from migraines for so long that she took her own life. I can say, as sad as it is, that I can relate. The pain is unbearable. The lack of proper treatments is unreal. The doctors think we are pill seekers. (Or radiation seekers…that’s for another post!) Nobody can understand the pain involved, the nausea, the dizziness, the sensitivity to every damn thing, and the frustration we feel when we can’t do something we want to do, unless they have been through it too.

And there are so many triggers! Food, scents, lights, colors, it’s unreal. I cannot pinpoint one thing that causes mine. The triggers seem to change from day to day.

June 16th will be 2 years with a constant headache, and migraines at least 5-6 days a week. Yeah, you read that right. My head hurts constantly. The one or two days I don’t have a migraine are the days I recover from the week long struggle. And I got a letter from a lawyer hired by my insurance company. They want to be sure no third party is responsible for my treatment such as an employer or car insurance company. See, they think I was involved in some kind of accident.

Image result for migraine

Perhaps they should check my medical records. It’s well documented. I went to bed on June 15, 2015 perfectly fine. I woke up on June 16, 2015 with a terrible migraine. And it never, ever left! There was no accident. No work injury. I woke up like this. I guess they don’t believe me. Well join the list of others that don’t believe me. Sometimes I think my family doesn’t even believe me.

Believe me, this is all too real. I mean, who the hell would want to fake this? Get real!

Well, after all that, I suppose I will try to sleep.

~Kristen