Wednesday, December 16, 2015

Life stopped 4/22/15

So. Life still sucks. My neurologist thinks I might be relapsing, again. That would be the third time this year. And with each relapse my life gets a little more unbearable. A little more bleak. 

... 

This disease is taking over my life. I'm in pain and sad all the time. I had two. That's right TWO HUGS in one week. Don't know what a HUG is? That's okay, ill tell you. A MS HUG is like a lovely little heart attack, coupled with weak/shaky limbs and shortness of breath. Never had a heart attack? That's wonderful news. Heart attacks, for women, or just me maybe, start like really really bad heartburn then radiate all over your chest, before moving to your back. Followed by the feeling of nearly passing out, which means I cant even lift my head. Then the shallow breathing while I lay in the fetal position because it hurts so bad. These episodes last for about an hour, before I snap out of it as if nothing ever happened. That hour snaps my strength like working a 8 hour shift on my feet never could. I. am. Useless. Afterword. WORSE MS SYMPTOM EVER! 


I've been taking a shot 3 times a week, which is miserable. Has a chance of slowing the progression of my MS by 30%. Just 30%. What terrible odds. But I cant do nothing. I'm kind of disappointed though. I guess I had it in my head that it would make me normal. Well, normal enough that I could get back to life. But it hasn't. I still have terrible symptoms everyday. I cant even walk around Walmart for Christ sakes. It's just so frustrating. When telling my neuro that, she said that's normal but I also have to give the medicine time to work. How long? I want my normal back now! 

... 

Had my disability appointment yesterday. That's right, I've had to apply for disability. I'm not even 30. :,( They sent me to a psychologist. I'm not sure why, or if this is normal, but she tested my brain power I guess. I was doing ok, really tried to focus and pay attention but I lost track of words a couple times, which was embarrassing. She didn't seem to get frustrated, but I still felt bad. She wanted to know if I got out or stay home. I cant go out, when I do everyone has to slow down for me or is always asking if I'm coming. I cant walk the mall or go shopping, I would need the sad cart after 15-20 min. I cant hold a conversation because I cant find words and most of the time I forget what I was saying mid sentence. The worst part, she asked me to remember 6 simple words, like red, and church (I sure remember them now!) had me repeat them back and then asked me a couple of regular questions, before asking me those words again. I couldn't remember them. After like 3 min they were just gone. I tried to remember so hard and when she had to give me multiple choice I cried. I got so upset. 


I have a brain eating immune system that has caused my life to become nothing but depression, numbness, pain and fear. Fear for now, fear for the future. Pain, so much pain. I just don't want to do this anymore. 


Is anyone listening? I've changed my mind, I don't wish for any of those things I said before. I'll take a boring old existence and ill never ask for anything again if you'll please just make it stop. Please just give me my life back. ...

Tuesday, May 5, 2015

I'm over it

I'm so over this bullshit. 
5 steroid infusions. 3 different blood tests. 9 total blown vains. 14 bruises. 3 MRIs. 1 EEG. 1 spinal tap. 

So far the diagnose is M.S. I have a vitamin D, vitamin B12, and a potassium deficiency. And new news as of today, spinal stenosis. 

Officially. I'm falling apart. My world is falling apart. I'm weak and sore. I feel battered, bruised, poked at, and beat down. And had the humbling experience of not being able to shower by myself tonight. Can't say I've ever felt this truly miserable in my life. 

And again, I feel like an asshole for complaining. Because it could be so much worse. People have it so much worse then I do. 

I think he's getting tired of me apologizing. I just feel so bad that he has to cart me around. Help me out of the car and sometimes out of bed. I'm just so worried he's going to decide I'm not worth all this trouble. It's only going to get worse. 

The thought is utterly terrifying. I've had it happen before. Been deemed not good enough and had to rebuild myself and my life from scratch. I just don't think I could do it again. Not that I think he's really going to leave, I'm just worried. Scared of the possibility. Cause really, I would blame him. 

Maybe this is just my way of focusing on something other then my health. Projecting maybe. 

I don't know. I just feel so hopeless..

Wednesday, April 29, 2015

Life sucks again..

Well, I only seem to need this outlet when my life is falling apart somehow and I need to vent. I guess that's I good thing though, since it's been years since my last post.

This isn't going to be eloquent, I really just need to bitch. I'm honestly just so mad. 

I feel like my life is going ok. I'm so in love, I feel like I've finally found the person I can see myself spending the rest of my life with, and I want to do just that. 
My job is going well, I feel secure that I'll have this position for sometime and may even try to move up. 
We've decided to build a home and are super scared and excited for that. 
Everything just seems to be working out and going really well for once. 

Why can't things just be content? I am ok. Things are not crazy. No wild out of control events. No struggle. Not much stress. Just nice, day to day life. 

Life is good. 

Until I start to feel funny. Little blips I call them. I'm dizzy, I can't focus my eyes, and I'm "daydreaming" at random times. I don't lose consciousness but I can't pull myself out of it either. So, off to the doctor I go. 

Long story short, after a round of brain tests, what I was expecting to be epilepsy, has turned out to be M.S. 

Just writing about this makes me cry. I know this isn't the end of the world. And so many people have been nice enough to reach out to me to tell me how they live with this and have had a long life, but I'm so lost in the moment right now that all I can concentrate on is the bad. 

I'm just so mad! Why the fuck can't I just be happy?!!! I'm not asking for diamonds and Ferraris. I just want simple. I just want my moment where he asks me to marry him, a small wedding, a nice home, a simple not complicated life. Why can't I have that?! Why do I have to be sick to?! 

--

So, I've been lying about how often or how much I hurt. I just don't see why I need to complain all the time so I keep it to myself. I didn't know that what I was feeling were symptoms of M.S so that's my own fault but I feel like now that they have me on meds, the symptoms are worse. I feel like I've had my big ass in the gym for 5 hours everyday for the last week, and we all know I haven't seen the inside of one of those for years. I'm weak and slow, and best of all.. the tingles. 

My face tingles all over. You know how when you hyperventilate and get to much oxygen your lips will sometimes tingle? That's happening all over my face but most of all on my head. At this very moment, I feel like I'm wearing at hat. I could swear on a stack of bibles that I have a hat on my damn head. 

I'm. Not. Wearing. A. Hat.!! 

That awesome occurrence caused me to have a panic attack right before he went to work tonight. Probably not the best send off. But, he did have a stoke of genius. He went and got my hat for me. Now I don't feel like I'm crazy hat-wearing-don't-actually-have-a-hat-on-lady. 

I guess all this bitching is just that. I feel robbed of the simple life I want and I don't understand why. Did I dream too big? Did I do something wrong? Or do I really just have that bad of luck? 

And through it all, I worry most about him. What if this progresses worse then I fear? What if I can't walk down the isle?
There will be no babies. 
Will he have to pull my legs from bed everyday because I can't do it in my own? 
Will he have to hold my hand and help me stand and do everything for me? 
Will he have to feed me? 

What if he decides this isn't the life that he wants? It's not the life I want for him. 

And what if I'm just being a baby and it will all be alright? 

What if I should just be thankful that it isn't something untimely way worse?..