Sometimes, the warriors need someone to carry them.

Sometimes, the warriors need someone to carry them.

Today was one of the bad ones. I can’t even begin to describe the overwhelming sense of defeat that I felt as I crawled in to my bed at 6pm and cried for 3 hours.
Today started off great. I was in an amazing mood and had tons of energy when I woke up (early); I did the dishes, did some laundry then was able to take my time getting ready.

When I got to work: I danced as I opened the store, I had the music blaring and everything was good. I was great all day; until I wasn’t. Around 3 o’clock I was helping a customer.. talking about pricing and her options to lower her bill. I started a sentence, said a few words, opened my mouth to say something else – and nothing came out. No words. Only “uhh” and some tears. Shortly after that: my neck got stiff, I didn’t have any peripheral vision, my head started throbbing and I started seeing spots.

I was terrified. I still am.

I don’t want to lose my vision; I need to SEE my child grow up. I want to see the happiness in his face when he scores that goal or catches that ball, I want to see how perfect he looks when he heads out for his very first date,  I want to actually watch him walk across the stage, I want to see him fall in love. I want to be able to look my grandchildren in the eyes as they take their first breath. I don’t want this damn disease to win! Just as importantly, I don’t want to lose my ability to speak and make sense. I want to be able to tell Ryder how proud I am of him for scoring that goal or catching that ball, I want to tell him how handsome he looks before he heads off on his first date, I want to be able to tell him how proud I am of the man he grows to be. I want to tell him how much he changed my life the day I found out that I was his momma. I want to always be able to remind him that he’s the sole reason I have the strength to get up and fight this fight.

I never want to lose the ability to tell my parents how much they mean to me or proud I am to have been raised by such amazing people. I want to be always be able to remind them that they did their very best. I want to always be able to have morning chats with my mom over coffee. I want to always be able to sit down and watch the Discovery or Science channel with him and discuss all the cool things we learn. As long as their alive – I don’t want to ever walk into a room and not be able to talk to them or to see their smiling faces.

I don’t ever want to stop telling MIchael how grateful I am that I have him by my side and how I thank the Heavens every single day for him messaging me on that August day. I want to always be able to tell him how handsome he looks when he first wakes up and has that sleepy smile on his face. I want to always be able to tell him that when he rolls over in the middle of the night and pulls me close to him, it’s the only time I feel like everything will be okay. I want to always be able to watch him with Ryder and the amazing bond that they have had from the very first day. I want to be able to look at him and see his sweet face when we are 80 and tell him I don’t know how I could face this life without him.

I want to always be able to express my love to those who mean the most to me.

I don’t want it to be like this. I won’t let this disease win. This is why I #FightForACure #IIH – I’m literally fighting for my life.

I’m normally really good about not wallowing in the “why me?” but today; today, it’s hard.

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Grief. Coping.

Grief. Coping.

I just want it to all be okay again..

My therapist has told me that I’m grieving. I’m grieving the loss of my old life, I’m grieving for the things that I can’t do anymore, I’m grieving for things that haven’t even happened yet. Sometimes, I go through so many different emotions in a day – I can’t keep everything straight and my mind gets all jumbled up, I sleep the days away or I get cranky and take out all of my fear on those closest to me; sometimes, it hits me way too hard. I need to learn how to cope, I have to learn how to deal – that’s just the way it has to be. I don’t know how long it’s going to take or how many times I will go through the grief cycle or learn coping skills before it all finally settles down and I can get back to a somewhat normal life, but it needs to happen soon, because I’m starting to lose everything that matters to me. I can’t fight this battle alone, so I need to learn how to not push everyone away; I need people in my corner.

 

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Pseudotumor Cerebri

Pseudotumor Cerebri

On Wednesday, December 7th, I was diagnosed with Pseudotumor Cerebri (also known as Idiopathic Intracranial Pressure) which is caused by a build up of spinal fluid on the brain. It has been weighing heavy on my heart since I found out and I am absolutely terrified of what my future holds; multitude of doctors visits that will be 2+ hours away, who knows how many Lumbar Punctures to drain fluid, adjusting to all the meds that I will need to be on, all the lifestyle changes that are going to come with it because I need to start eating healthy and losing weight… I’m terrified that it’s going to affect me in my schooling, I’m scared that people are going to think I’m faking, I’m scared that I will be a burden to my family and friends when I have bad days, I’m terrified of becoming addicted to the pain meds, I’m just scared; and to be quite honest, scared doesn’t even begin to cover it. I know that it’s something I will have to learn to live with, but I just don’t think it has sunk in yet. I have been in the hospital for 7 days and 6 nights and to be totally real, I’m just numb..I don’t think it has REALLY hit me that this is something that is going to change my whole life, I don’t think it has hit me that I will have to deal with this until the day I die, I just don’t think I’ve hit that stage yet..

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