Tuesday, May 24, 2016

Explanation of Silence

So, I’m not sure if anyone on Facebook noticed but for the last few days, I’ve been sorta on the missing in action side.  I guess my reason is that I don’t really have much to say publicly anymore. 

I found out a few weeks ago that I tested positive for Lupus.  A few days later she called back and said no, it wasn’t Lupus but pretty much 24 hours later I was called back and told, yes it is Lupus, they just don’t know what kind. 

Normally this would say to me, Dette, you need to get a second opinion.  But I couldn’t do that because even though my paperwork was refilled in March, Social Services still hadn’t reinstated my Medicaid which, until I can get a better job that comes with health benefits, that’s my only way of seeing a doctor or getting any of my ever growing number of prescriptions.  I have been fighting with Social Services now for months and only yesterday when I could hide behind my dignity and broke down and sobbed in front of pretty much everyone in Freedom Ave. DSS, did anyone do anything.  And before any one of you say it, NO, I did not use tears to get what I needed, I just wasn’t capable of dealing with the form answers that I’ve been getting lately indicating that I’m still getting nowhere.  It was only when I lost pretty much any shred of dignity I had left did anyone understand just how bad off I am right now. 

I can’t do this anymore.  That is simply what this boils down to.  Strange things have been going on with my body for almost a year now yet anytime I try to discuss it with a good number of my friends, it turns into them telling me about what wrong with them.  I have come to hate the phrase, “Yeah, well…” because it has come to ALWAYS without fail, mean “Enough about you, time to put the spotlight on me.”  The sad thing is, I’m not sure that any one of the handful of friends that do it even realize that they do it.  And I’m partially to blame for them not knowing that they do it because I tend to switch right back into supportive friend mode and comfort or just listen.

But lately I haven’t been able to do it.  The voice in my head starts screaming things that I have to hope and pray don’t come out of my mouth so I just don’t put myself in those situations anymore.  I’ve begun to distance myself from everyone.  I come home from work and I drink.  And I mean drink to the point where I used to be the one that my job called when they needed someone to come in and help out but they can’t do that anymore because within twenty minutes of getting home, I am no longer legal to drive.  I wake up, I play my Facebook games, and I get off the computer and I read.  I went back to writing again but I found that every time I did, whatever I was writing began to take on my real life or rather the real life my inner self wants where I blatantly scream, “It’s not about you!”

Believe me or don’t but I have even tried praying but the voice inside of me alternates from “If your friends won’t listen to you, why should God?” to “If there really was a God, why would he let this happen to you?”  This leads me back to drinking because I know there is a God and I know that he cares and he only give you what you can handle even if you feel like it’s crushing you.  So I try to shut the voice up because I was raised by a good Christian woman and loving Church family and I know that God is God.  I am not His only concern here on earth and He did not give me Lupus.

Those of you that think I’ve been shying from them and leaning only towards the man that I’ve been seeing, I can tell you that you too are wrong.  I haven’t said anything to him as well.  As a matter of fact, if he reads this he’s probably going to say WTF because I’ve become such a good hider that I haven’t said anything to him.  The truth is, I don’t want to run him away because he’s one of the few things in my life right now that make walking into traffic look like a really stupid choice meaning, he makes me want to live.  When I’m with him, I smile.  When I talk to him, I smile.  Hell when I think about him, I smile.  I like smiling.  I like feeling happy.  If not telling him about the crap in my life makes the happy continue, I’m going to try hard to keep that.

And I realize that it looks to some like I’m keeping him a secret but what some people, okay a lot of people have to understand is that I’m actually being respectful.  I don’t say his name of put up pictures of us because I’m not sure that we’ve reached that stage.  I’m not sure if he wants that.  He knows that it’s one of my secret desires to be able to say on Facebook that I’m in a relationship with and actually be able to say a name.  I would love more than anything to be able to tag him in my relationship status but I don’t want to alienate him.  I would love to introduce him to my friends but sometimes I feel like the third degree he’d get from them might be worse than an FBI probe and then off he’d go and I’d hate my friends who would unerringly say, “He wasn’t good for you, anyway.”

Yes I know I’m a worst case scenario kind of person but most of you know this about me already so whatever.

I’m posting this on my blog because I still don’t feel like going back to Facebook right now.  I just don’t.  I don’t know when I will.  But right now, I need for the voice in my head (Which for better or worse is and has been for awhile now, Meredith Grey) makes some of the comments I want to post turn really nasty and I don’t want to lose any friends because my views aren’t their views which will lead to a debate of why they are right and I am wrong on Facebook, So I’m not bothering.  I’m watching my Facebook slowly degrade into a highly charged political arena with a little God thrown in every now and then.

So yeah, if you wanted to know why I’m silent lately, there’s why.  I can still be reached by messenger and text.  If I don’t respond, I may be at work or just not in the right mind frame to speak.  But I’m here, I’m living.  Don’t worry for me, I’m doing enough of that on my own.  I do love you all, I just have to figure out how to be outside of my own head and shut Meredith up.


Ta.  I’ll be around.

Monday, May 09, 2016

Living with it.

So about a week ago, i went to see a new doctor who leaked, I guess is the word the information that I had tested positive for Lupus in the blood work that my last doctor ordered.  She tried to make it sound like something I should have already known or at the very least something he should have told me himself but when she realized that no one had imparted that information to me she tried a different route by saying that a lot of women test positive but don't actually have it.  That route didn't work as well because the more she looked me over, the more she was convinced that I would not be one of the millions of women with a false positive.  I have way too many of the symptoms.

I have Fatigue that i can't seem to shake some days.  Even if I get eight full hours of uninterrupted sleep I can still feel like my butt is dragging.  Mostly I hide this with coffee and then use the slight caffeine high to look productive but the days when I don't even feel the caffeine, it is unbelievably hard to fake it.  Those are generally the days where I get in trouble because I don't have the energy to keep the things in my head from daytripping out of my mouth...

Joint Pain.  I can call it arthritis all I want.  I can cling to the actual fact that no one is too young to have it but the pain and weakness in my left shoulder that some days prevents me from doing my job or at the very least makes it so hard I want to cry... yeah.  They did an xray.  Inflamed joint not arthritis.

Headaches.  I get them so bad that well... I blank out.  I know someone out there has had a migraine so bad that they feel like if they could just crawl out of your body you'd be fine.  I can tell you first hand, wanting that and experiencing that are two way different things and if you'd ever experienced that, you'd never wish for it again.  It generally comes with a whole body shudder and suddenly for just a moment, the pain is totally gone and you feel like you're floating but not in a good way.  Floating like you're about to fall and hit the ground.  And then you go slamming right back into your body. But here's the kicker... what felt like a few seconds can actually be a good stretch of time.  Livy found me just staring at the wall once.  She said I sat like that perfectly still for ten minutes at least never moved, she said I didn't even blink.  then all of the sudden I shuddered and I blinked and I was back.  I have absolutely no memory of this.

Tonight, I took a good long look in the mirror.  Just to the left of my left eye my skin is turning darker... In the shape of what looks like a crudely drawn butterfly.  Combined with my bright red birthmark it's not exactly pretty.

I'm supposed to call her if I saw this.

The first thing I did when I get home that first night was to google if Lupus could be transmitted sexually.  Thankfully it cannot.  Please don't think I'm saying I think I got this through sex.  That was never my thought.  My thought was could I give it.  Every single source I could find assured me that I cannot give it to him.

But every single souce I can find says that this is going to get bad.  I'm going to have good days, I'm going to have bad days and I'm going to have really shitty beyond words days.  Now that I've finally found someone that I can see a future with can I do that to him?

It's not that I don't think he'd stick around.  Something tells me he would.  But do I want him to see me like that?  Days when I feel like he deserves someone that's not looking at being sick.  Days when I can't even get out of bed because it hurts too much.

Can I do that to him?  I don't think I can.

Part of me wants to just say "Run!  Run far! Run Fast!  Run and remember me the way I am right this moment.  Remember me before you got to see me on days when I can't stay awake for shit.  Run and remember me before you saw me have to crawl on my hands and knees to the bathroom because my feet were so swollen and hurting that walking was a wishful dream.(yeah that's happened a few times)  Remember only those times I couldn't walk right because you made my legs like jelly."

And yet Part of me hope he'll stay and hold me and tell me he's not going anywhere.  That those days I can't stay awake, he'll lay beside me.  Those days when pretty much all I can do is lie there with a book, he'll sit or lay there and let me prop the book up on his leg while he plays a video game or watches a movie.

I promised myself that Friday before last was the only day I was going to allow myself to wallow.  If I gonna have to live with this then dammit I'm going to live.  They say God gives you no more than you can carry.  So I guess He has decided I can carry this.

I will not wallow.
I will not feel sorry for myself.
I will not be upset if I have to do this alone (Total lie by the way but it sounds good)
I will not cry. (Still lying)
I will not WebMd myself into apoplexy thinking this is going to kill me in the next 24 hours. (again total lie)

Most of all, I will never say Fuck my life.  Because aside from  what is fast becoming something I can't ignore, my life is golden right now.  Good job.  Good man.  Awesome sex life.  Did I say good man?  Children who are about to leave the nest.  Really. Awesome. Guy.  Friends that I love.

I'm just gonna sigh.  And go to bed.  Because it's two freaking AM and I should have been sleep hours ago.  Damn Netflix...

Goodnight.