Hello, from deep down below..

I got good news from the neuro for the first time. Well, as good of news as I can get. My most recent scans show new lesions, but none are active. Which means I am in remission, or, my disease is "stable". The shots are working, which makes me happy, but at the same time, its bittersweet. I did a lot of damage last year not controlling my stress, damage that is PERMINATE and NOT reversible. I still cant walk well, my feet still hurt almost constantly, neuropathy is still a serious issue and my cognitive functions are a joke. I cant remember anything, I spend most conversations going "um, um, um, what's that word?" while the person I talk to just stares on like, "how the hell and I supposed to know?" Which leads to less conversations and me being around less people, which leads to me being alone more, which digs me deeper into the sad hole. I'm so fucking sad all the time.


The only time I'm not sad is when I'm sleeping or when Michael is home. Which means I sleep most of the hours he's away. My best friend has a new best friend, so I stay here alone. My old best friend has a new life so, I stay here alone. I cant stop thinking about people who are no longer here, they cant help me and I need to realize that. I'm quite pathetic really, It took me forever just to write this between my stupid brain and all the crying. Just sad..

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 I got denied disability, which everyone in my MS group says isn't a surprise, everyone with MS gets denied the first time, but it sucks for me none the less. I'm responsible for half of everything in this house and am vastly running out of savings, leaving Michael to pick up the slack with money he doesn't have. If I'm not careful I'm going to relapse again, because, you know, things can never get worse! We worked so hard to get this house and I made it look so pretty, made it our home. Some days I try to tell myself I'm fine, that I can work and that ill bring in money and we'll be fine, then I go to grocery shop and am limping and walking like I'm 80 within 10 minutes or, I try to have a conversation and fail sadly and I just know I would fail just as miserably at a job. Maybe I've just freaked myself out about it, but I am terrified of having a HUG in public. Or looking like an idiot with how slow I've become, not just walking, but in my brain as well. I had a HUG at the laundromat last year, I drove 50 in a 35 all the way home and barely made it in the house before it go bad.

*sigh. 

I just need to find my way back to me. Or the me I'm supposed to be with this disease. The old me is dead and gone, and the future me I had envisioned, is just a dream that will never come true. Ever..

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. ...

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..

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?! 

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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?.. 

What to be when I grow up?

Okay, so technically I'm already "up", but I still don't know what I want to do with my life.

How sad is that? I'm about to be 27 and I still work a dead end job. I still struggle paycheck to paycheck and I still don't put any effort into bettering my life.

At what point do you step back, look at your life, and say, "I'm done making excuses. It's time to stop saying I wish, and I want, and do something."?

I'm at that point. But the thing is, I still don't feel like taking action is going to get me anywhere. Like a year down the road, I'll still be right where I am now. Plus, since I'm being honest here, I lack the will power to go out and grab what I want. It's all very frustrating.

My friend and I are talking about going back to school. We both want to do something that will better our futures. But what? And when I sit down and think about when I was most happy, I know I want to be a writer.

I love to write, but lets be honest, I'm not very good at it. My grammar is bad, my sentence structure needs help, and the stories are a little flat. But I feel like I have somewhat of a natural talent for it.

So I'm going to take my chances with school again, try to not think about the mountain of student loans I could acquire, and look into taking a creative writing and english course. I'm going to take a sledge hammer to the brick wall in my brain and put out a missing persons report on my muse. Cause this almost two year long writers block has got to go!

Wish me luck..

It's been a while..

I had a really difficult time this Christmas. It's hard to battle depression on any day, but particularly so during the holidays. At least I felt so.

Money is tight right now. I'm trying to keep my, and my boyfriends heads afloat with my meager wages. It's not working out so well. The economy is bad and he cant even seem to get a job at McDonalds. My stress level is so high I wonder why I haven't had an epic melt down yet.

Anyway, so this year, as much as I rejected the idea, we agreed not to do Christmas. Not one gift was given or received and I hated it. Giving presents is one of my favorite parts of the holidays. (cue 2 year old pouty face) It's also fun being asked, "what did you get for Christmas?" and having to answer, " uh, nothing." Instead, we pulled enough money together to help pay for Christmas Eve dinner with the family.

Christmas with my family was wonderful. We had a great dinner, managing to keep with the tradition of prime rib and baked potatoes, despite everyone's money woes. The kids opened gifts and we laughed and had a great time. I even got to sit and eat dinner with my ailing Papa. I couldn't have asked for a better time amiss all the stress.

But still, several times during the night I found myself spacing out. Thinking of the past and stressing about the future.

Is it bad that I still mourn my Granny, two years lost? Christmas with her was always my favorite. She was so festive and happy, decorating and making fudge and divinity. Her decorations are all over my family's home, making me miss her more. Making me wonder why it seems I'm the only one still sad. That's not fair, I know I'm not the only one still sad, I just seem to take longer getting over things.

Anyway, I know I haven't written here in a while. Sadly, my muse has been evading me for the last year and a half. I wonder if I'll ever find where she ran off to. However, I am glad that if nothing else, I can keep with my own little bit of tradition: Whining on my blog..

Romance?

So, I just finished Lori Foster's Trace of Fever, and I loved it! She is an amazing author and I aspire to be even half as good at my craft as she is at hers.
Her books leave me feeling happy and content, however, they make me think. I consider myself a realist, but I can't help wonder if what I love to read and write are effecting my view on reality...

When I think of how I view relationships, I wonder if I have it all wrong. Will my desire to have, what I view as romance in a relationship, effect my judgment on that relationship? What if the person I get with isn't very romantic? Or what if they've expended their desire to be on someone who didn't appreciate it? Will I feel differently about them?

The men in the books I read are meant to be near perfect, I mean, aren't all women looking for the perfect man? Sure, they have flaws, if they didn't I'm sure the reader would see it and not connect as well. But, do men like that actually exist?

The kind that surprise you, spur of the moment, just because. Send you a random text or call or card just to show they were thinking about you. Like to hold your hand or caress your skin, just because they felt the need to touch you; to show you you're loved. The kind that aren't afraid to show affection in public and genuinely care for your feelings.

In my opinion, actions speak louder than words and you do not need to spend a lot of money to show how you really feel.

I know most women who write Romance can do it well because they have the added bonus of a man like that at their side. But how many men actually think to be sweet or romantic without some kind of prompt from their women or a required holiday?

I'm a bit jaded in my young age, I know. I guess I'm just worried that I perpetually have my head in the clouds.

I'm sure most men can be romantic, but honestly, it's not a requirement. It's just a nice thought...