Ice Ice Baby

I think one of my scariest symptoms is when I'm struck in the head. The pain is always so immense and unbearable. I usually lose the ability to speak properly and I get really confused and upset. I also get migraines but these 'lightning bolts" are something else entirely. It's so hard to describe them to people, doctors or otherwise. Sometimes it's like getting struck with a lightning bolt or having a knife being forced into my brain or the other night I had to ask my parents what the grim reaper carries with him because that's what it felt like. By the way, it's called a scythe or a sickle. I swear I could even feel the curve in my head.

We made a discovery a couple of weeks ago, well my Dad actually did, and when this happens my neck and head are usually on fire. I develop a crazy fever so my Dad decided to try icing my neck in order to cool me down. It helps so much! I don't understand why my blood boils and my brain starts to fry but cooling my body down is one of the only things that truly helps. It helps me regain my ability to speak, tones down the pain dramatically, and eases my confusion. This might be why hanging out in my pool in the summer has a tendency to make me feel better.

Have any of you experienced anything like this?

I have a collection of ice packs and wraps but I'm planning on buying one of these Ice Kaps soon. It's a bit pricey and I'll look pretty silly wearing one but I'm okay with that and will do anything to find some relief. I love that it has a place to put a pony tail through!

All is NOT Fair in Love & Illness

Let's talk about dating and relationships. This post is something I debated on writing about because I don't think it applies to everyone but it does to me. So please keep in mind that I'm only talking about my personal opinion about life as it pertains to me and no one else.

I don't date. I don't have relationships. I don't even flirt.

The last time I had a boyfriend or any type of romantic relationship was when I was 21 and I don't plan on changing that any time soon. Part of the reason is the fact that I have much higher standards than I did when I was younger and haven't met anyone who has made me want to change my relationship status but the biggest factor is that I don't believe that it's fair for me to date.

When you're ill it's hard to commit, period, to anyone or anything. I never know how I'm going to feel so I can never make plans. I am also progressively getting worse so I don't think it's right for me to form any bonds and make someone else become part of my world. I'm in pain all of the time. I can't always control my body and/or my brain. I lose the ability to speak and/or walk. I have panic attacks and anxiety that keep me home. I have such extreme headaches that I cry for hours. I'm so exhausted most of the time that I'm not capable of doing the things that I wish I could be doing. All of these things combine to equal a situation that I have learned to accept, and that my parents have accepted, but it's not something that would be fair for someone else to have to deal with.

My Mom was speaking to one of her friends about this theory that I have about not dating and the friend said, "tell her to watch Sweet November and A Walk to Remember". I like both movies and I get the point that it's better to have love even if it's not the normal, traditional kind of love but I just can't stand the idea that I could be holding someone back from experiencing life. I feel bad enough for my family, who love me through sickness and in health.

I just realized this sounds kind of like a cry for attention but I promise I'm okay with my decision to not date. I don't feel like I'm missing out on anything because my life now is different than the life of someone with no illness.

As for flirting, I've never been capable. My family and friends always point out guys who check me out and I just don't get it. I never see people looking at me and when I do catch someone staring at me I always assume that it's because I have food all over my face or something. LOL! I simply don't understand any of it.

I have the only men I need in my life – my Dad, my dog Cooper, and my cat Hunter.

Different does not mean better or worse. It simply means different.

Someone once asked me how I stay so cheerful and positive while living with illness and the answer is really simple, life is good. Despite all of the crazy ups and downs that accompany being sick, I am happy because my life is wonderful and as long as I'm breathing I will continue to be happy.

Of course I get sad and feel down sometimes but I'm an extremely firm believer that life is what you choose to make it. I can be miserable and unhappy and feel sorry for myself but why? Life is short and I want to be happy every second that I possibly can.

I am not the person I thought I would be and my life might not be what I imagined it but that doesn't mean it's bad. I am in a totally different place than I could have ever dreamed of when I was a kid but different doesn't mean better or worse. It simply means different and once you realize that it's all about how you decide to feel about life as a whole. Enjoy the detours in life. You are who you are, so embrace it and love yourself and love your life because you don't get to do any of it over.

I like who I am even though I'm not the world famous news anchor that I had dreamed of becoming. I like who I am even though I'm not perfectly healthy. I like who I am even though I live with my (wonderful) parents instead of owning my personally designed dream home. Dreams are nice but plans change and it's okay to be happy with the version of you that is currently real instead of the version of you that you dreamed of becoming.

Whether you're ill or not it's important to remember that it's okay to love yourself and accept who you are right now. You are perfect as you are.

And if all else fails simply remember my motto:
Different does not mean better or worse. It simply means different.