Reflections..or..Real talk, lets do it

So, lets just get this over with, shall we?

I’m Shyntae, I’m 29 and I have Multiple Sclerosis. I got diagnosed by the age of 25..ish, it was probably a few months before I turned 25, anywho, I had my entire life in front of me before I got the diagnosis. I only found out because I almost went blind in my left eye. I ignored the numbness of my left leg for months, thinking it was just a nerve in my neck messing up due to a previous whip-lash injury. Turns out it wasn’t. I had MS.

This crushed me. Seriously, I went home and crashed on my couch and cried for hours. This was just shy of a year of losing my father, my best friend in this world. I thought losing him would be the worst thing to happen to me in many, many years. Turns out it wasn’t..at all. The pain of that diagnosis..the confusion, the fear, the sheer panic I felt can not compare to anything else I have ever experienced..ever.

I was lucky..I think, as lucky as you can get with MS anywho. I have _the_ leading doctor of MS in Sweden, which is a good thing for me. But that also means he is very busy and can’t see me as much as I’d like to, nor talk to me to calm me down. The first meeting I had with him was basically “Oh, it could be MS, but nah, lets not say that for now, this could be a whole lot of other things, so don’t worry about it for now” and the second meeting with him going  “Yep, I’ts MS, lets get these tests done. I’m sure you suspected it by now..but lets just get it confirmed”. And they did..as they held me down..with a needle in my spine to get some fluids to confirm my diagnosis, as I tried to breathe through a pillow as my nurses tried to pet me soothingly.

I had to take a cab home from the hospital,  as a bus-ride was just too rough. I had to call my boyfriend home from work, so he could take care of me for the day, because I was just incapable of it. I just could’t. I stayed in a horizontal position, as ordered by my nurses, for the entire day. Seriously, lumbar punctures suck and they are scary as hell.

Those nurses…honestly, if it wasn’t for them I would have gone nuts by now. They have kept me calm, they have called me to make sure I was alright. They address me by name, because they do remember me, and whatever I told them. I can not give praise to them enough for what they have done for me, and I love them for it.

As for my doctor..well, as I said he is the leading doctor of MS in Sweden, so I am very grateful I have him, honestly, he is the best. He is just so very busy with all the meetings, with learning new things, all the seminars he goes too. I am lucky to have him, because it means I have a doctor who keeps on top on things..and the same goes for the nurses who works under him. They keep up to date on all the new meds, all the new discoveries concerning MS, everything I need to know, and they are all too happy to answer any and all questions I have.

So..the reason I brought this up?

Well, several reasons actually.

I’ve been meaning to talk  about this for a long while, it was just hard for me to find the words to get started, but a comment from Tyr on Plurk really set it off today (<3 Thank you, but I am not “The Boss” . I just deal with what I have to, every day. If I didn’t find the humor in this, Id be going crazy by now)

If I didn’t have a sense of humor, anything at all, to keep me from going crazy, the MS would have dragged me down years ago. Knowing I might just wake up tomorrow, unable to walk, or see, or feel some parts of my body? That is scary as hell, because it just might happen any day. But if I let this get to me, I might as well just lay down and die and give up. I will not give up to this.

I will not let MS get to me.

Sure, it is a diagnosis of a horrible, scary, disease, which might get me any day and cripple me. But I will not let it get to me. No way, no how.

As I sit here, the entire left side of my body twitching and turning as it wants to without any regards to me I say; Fuck you MS..I will not let you get me. You can not bring me down. I will continue to enjoy my life, my Second life, my store, the music I love, the people I love. The fact I can see, or walk, or feel. Whatever you want to take away from me, I will not let you, I will fight you tooth and nail and not fucking let you.

One of these days they will find a cure…and I will be alive to receive it…because we are not far from it.

Multiple Sclerosis is an ugly disease..a scary disease…but I, or anyone else suffering from it, will not let it get us down. We’ll take it..we’ll joke about it. We live with it, we know just how bad and how random it is and how it strikes, but we will never let it break our spirit.

Never.

With that said..I know I cry about it at times, because it is just so fucking unfair. Seriously, just as unfair as cancer, and several other diseases. This is something that will eventually kill me. But what can I do?

I can’t, so I’ll just enjoy my life for now.

Want to know what enrages me the most? It’s not the fact I have it. I can live with MS. I can live with the fact that one of these days I’ll be confined to a wheelchair..the thing that enrages me the most is that it is so random. It just strikes when it wants to. Wherever it feels it wants to strike. My best friend has it too. She got diagnosed just a month or two away from when I did, and right now, all I want to do is go outside and shout at the Universe “This isn’t fair. Just cut it out…stop it”

Fuck off from my friend, leave her alone. I love her so much I’d give up anything..but no, I can’t..because MS. Fuck you MS. I love her, leave her alone, let her live her life in happiness and peace, let her be the person she is meant to be. Take me instead, I can take it.

But it will not stop. Not yet. More and more people will get MS.

Until we find a cure.

We haven’t yet…but I am keeping my hopes up. We will…one of these day. I know it. I just hope it is before I am stuck to a wheelchair.

That is all.

 

Details on clothes and such, cause I’m sure you want it..despite this long and rambling post:

Skin: [Pink Fuel] Sora <Alabaster> – Natural (previous Futurewave)
Hair: Exile::Shine (The Arcade)
Eyes: .ID. Purple-Pink Flare (previous Arcade item) and PMD – Era Eyes – 4
Horns: :[Plastik]:- Living Light Horns
Collar: …::: Scrub :::… Like a Nun Collar (WCF 3)
Hands: Slink Female Feet (AvEnhance)
Nailpolish: PMD – Grimmur
Shirt: *Fishy Strawberry* New York Deep V (collabor88)
Pants: ISON – work it trousers (Collabor88)
Shoes: [L.Warwick] Ibis -Platform Heels- Noir