"You've chosen lessons of pain"

I received a message with this video in it yesterday.  I have no idea who the person is who sent it... but, oddly.. this is one of my favorite songs and one I listen to every night.  Headphones on, dark room, and songs to obliterate the thoughts....

When I'm without words, music...

When I'm without words, music....

Home.

One thing I've known for certain for pretty much all of my life is that when I'm ill, I long for home.  When I was little I knew where that place was, and despite its terrible flaws it was still home.  As an adult I was surprised to find that I no longer knew exactly where home was.  So I would spend the majority of my adult life longing for a place that quite possibly, for me anyway, doesn't exist.  I've never been able to reconcile this; not physically, and certainly not emotionally.

The closest I've come to being "Home" once moving out of my mom's house at 18 is Mobile, AL.  I had a tiny little apartment, and though not every moment there was perfect, it felt safe, and it felt like a warn welcome every time I walked through the door--no matter how good or bad things were.  It was a safe place for me to be myself, where I could decompress, where I could dream, wish, hope and feel alive.  This is not the case where I am now.  Not even close.

How did I get here?  I got here the same way I got into every bad situation in my life; By pure blind trust.  It's a flaw of mine and one that's gotten me into more trouble than I can tell you.  I give people the benefit of the doubt, take them on their word, and actually believe what they say.  Well, to a point anyway.  The thing is, that 'point' in which I pivot and see the error of my ways is usually far too late to avoid any damage to my life, and to me.

I'll probably always be this way, a far too trusting person.  I'm okay with that, I guess.  But I really wish I were better at assessing and discerning the heart and motives of people BEFORE I get involved.  We all have our flaws, I suppose.

As I wait for the sluggish process of diagnosis beyond the AIH, I'm left far too vulnerable for my liking.  There are days I can't walk well, verging on not at all, and days where lifting my arms to look at my phone is almost too much.  The weakness grows more each day and the doctors I need to see are weeks out of reach since I'll be a new patient.  The waiting is going to end me in the ER at some point, I'm afraid.  But the worst of this is being this sick and living in a place where I know absolutely no one at all.

T only helps around here bare minimum, and as the chores, etc. pile up... I long for the simplicity of the life I had in Mobile, where I didn't have to clean up after another human who refuses to do what's necessary to not live in a dirty, cluttered house.  I can't live this way, so I struggle to pick up the slack.  And I'll tell you, the slack is far far more than what T actually does.

How the hell did he survive on his own?

I have to somehow find my way home--wherever that is.  I know I can keep struggling a little bit to find my way here, to at least hang in there until I'm better---or at least better enough to survive, to move, to do something to help myself.  At this rate I don't know if I can work, which scares that crap out of me.  Disability requires a definite diagnosis, and at this time I don't have one that explains fully how I'm continuing to weaken and become more and more sick.  What can I do if even typing an entry like this makes me shaky and nauseated with weakness?

I want to be well again, to feel good again, to have energy again.  I want to be in a position where I can find my way back home again.

Home.  I just want to be... home.

The Status Quo.

It's been a week, and this entry is going to be brief and probably more than a little boring.  My goals, as I've spoken about often, are to purge thoughts, etc. in my blogs.  As of today my thoughts are fairly off, meaning I'm having trouble really understanding what it is I need to talk about.  This dullness becomes the color of all of my life these days as the prednisone withdrawal wreaks absolute havoc on my body; This is the worst thing I've gone through to-date.

While I know that withdrawal will bring miserable consequences, ones that often can't be avoided, the possibility that there is something else going on is [possibly] evident in what I'm experiencing.  Could it be that the withdrawal symptoms are simply symptoms of some other unknown problem yet to be discovered?  My liver Dr. seems to think so.  But damn.  I can't deal with this much longer.  Someone needs to get on finding out what the hell is kicking my ass SO badly that I have no quality of life anymore.

As I type this entry I have to lean my forearms on the laptop, putting my arms at my sides often as well because I simply cannot hold them there for long.  This weakness is hardly tolerable on any level.

I'm simply too weak to keep typing... just wanted to check-in...

This is really getting ridiculous.  And as for any support from T... nope.  I have to accept that I'm in this alone.  So be it....

Finding Me

I'm not lost.  I'm not invisible, though I FEEL that way most of the time.  I know who I am, for the most part.  I can look at my life objectively and see where I've gone terribly wrong.  I have a sense now of protecting my health, my sanity, my life, and I won't allow anyone to derail that.  I've come a very, very long way.

I have a purpose just like any other, and a couple of relationship experiences has taught me that I can't lose sight of the fact that I don't need anyone else telling me I'm worthwhile.  Selfish people will spend a LOT of time telling you you're not worthwhile, not worth their time, effort, love.  And why do we allow this?  The answer to that is different for every person, but the one thing that we all have in common is the TYPE person we chose to bring into our lives.

I'm right here, right now, alive and feeling; I've always been here.  Though a couple of people I had in my life tried frantically to diminish who and what I am, and they nearly succeeded, they FAILED.  I know this because I was able to finally walk away from the situation and felt that terrible, heavy weight lift as I did so.  Even in the absence of real closure I know I saved myself by steering clear.

This situation I'm in now with my health is a big uncertainty in my life and I have to accept that.  I have no idea, going forward, what to expect and have to take things one day at a time, literally.  What little energy I have can't be spent on yet another person who doesn't have my best interests at heart or in mind.  Now, on the surface that may sound selfish, but since my health and life are at stake.. I can't leave anything to chance, nor can I just pour my life and future into someone else the way I had in the past.  There's nothing selfish about taking care of myself, and it's taken me a couple of years to actually believe this.

I don't care if anyone thinks I'm selfish right now.  I do all I can for others as much as my energy and health will allow.  The people who love me understand.  And the people, past and present, who don't love me don't understand at all and stand in judgment.  Thankfully, the numbers in that particular group are ridiculously small.

This is not the time for me to turn my focus away from the very real AI disease(s) I'm dealing with.  Both the one confirmed and the one yet-to-be-confirmed are very serious and require life-long treatment.  No one has given me a prognosis, because there's really no way to at this point.  No one can guarantee me anything, and what they're left with is telling me the possibilities as far as what my life expectancy is WITH and WITHOUT treatment.  I've started treatment, as you guys know.  I've begun that journey, but it's going a lot slower than anticipated.  Still, my odds with treatment are far better than without.  Even knowing THAT I'm given NO guarantees of what will be a year from now, 5 years from now, or even next month.

All I can do is take very good care of myself and avoid stress and anxiety.  And herein lies the biggest problem--my life with T, my past that haunts me... all bring stress and anxiety in like a flood.  Not 24/7.. but enough to make each day just one more opportunity to work my way past that.

Finding myself sounds so damn cliche, and so much so that I cringe just thinking those words.  But it's something I can't ignore.  I'm here, but I don't recognize the person in the mirror, the sick person with the dark circles under the eyes, etc.  It's okay, though.  I know and understand the drill.  That sick person in the mirror needs TLC, patience, understanding, and love.  I'm really pretty much the only one that can provide that.  It's still me in there, looking back...


It's still me in there looking back....

Family--Beating My Head Against the Wall

To say I come from a dysfunctional family is putting it mildly.  Further back than my own memory reaches my siblings have hated me.  No, really, I'm not making this up or being dramatic.  I don't talk about this much because it brings a lot of sadness and discomfort, anger and resentment rushing to the surface.  It's a long story, really, and one with gaps and holes and far-reaching voids where many memories have vanished.  It would be oh so much easier had I been adopted, because I know virtually nothing about my family tree, for all the asking I've done over the years, and my parents are both deceased with my having absolutely NO idea where I came from, who my ancestors are, or what my connection is to any of them, if at all.

I was a "Mistake," according to my mother.  Now, my relationship and experience with my mom is a story in and of itself, and honestly... I could write a novel here about that.  But I'm not going to.  Let's just say my mom was disconnected by the time I was born, old enough to be my grandmother, and about as unplugged as a parent could get.  It was easier to micromanage and control everything to a damaging degree, rather than create experiences that may have given me a chance and coming out on the other side with less 'issues.'  Yes, of course I have issues, and in a way it was my mom's only legacy.

How is it that I could know little of nothing, if anything, about anyone in my family tree?  Well, that's easy--when you don't answer questions, share nothing, and ensure that not a single photo, letter, information, etc. gets passed down to you... well, you can't ask a dead person questions.  Point blank, not pretty, but absolute truth just the same.

Everything from health/medical information was shared primarily with ONE of the 6 children, and I wasn't the one who got the information.  My eldest sister was my mother's confidant, her go-to gal, and there was an almost too-close relationship between my mom and my oldest sister (old enough to be my mom).  I spent my entire life on the outside, looking in, and it was that way until my mom passed away (over 20 years ago now).

One sister and I shared a dad, and my other siblings share a father form my mom's 1st and only marriage.  Yep, my other sister and I were illegitimate.  I could really care less about that, to tell you the truth.  My dad was out of the picture when I was 18 months old, and my mother really never spoke of him or his family except for some really scary things, very dark and scary things.  Now, it shouldn't surprise anyone that if you scare a kid like that, they're most likely not ever going to ask too many questions.  This was the case with me.

The siblings who had a different dad hate me.  Just the truth.  I was even told that one reason they despised me was that, because we were very poor, they often didn't get as much milk (the example used by one brother and sister) because when it came down to the wire... "The baby" (me) needed it more than they did.  I can't speak for what happened when I was a baby.  I can't apologize for something that I didn't do on purpose.  Yet that resentment carried right into adulthood for my 3 brothers and one sister.  BTW, I don't really think of them as brothers and sisters because they've not treated me as such throughout my life.  What memories I have of life with them.. isn't good.

I was born very late, with my mom being in her early 40's when she had me.  All my siblings (but for one) was grown and gone and with kids of their own, so I pretty much grew up like an only child from about age 10.. when one of my sisters married and moved out (she was 16).  We lived in a 3 bedroom house that was eventually condemned, and my mother (a hoarder) used all 3 bedrooms as her hoarding rooms.  My sister, the one I share a dad with, had her own room, lots of 'stuff,' decorated walls, record player, records, clothes, and a bike.  I didn't have enough toys to even have a toy box, so even in this respect I would find myself living an entirely different life than my sister... and everyone else, actually.

My mom was absent, indifferent, cold most of the time...and even cruel.  Skipping over more details than will fit here, I will say that my childhood was very, very odd, and the damage done has proven to be long-lasting.  Still, I spent my life longing for a family, a REAL family.  Now, coming from a family with 3 brothers and 2 sisters you would think that a strange thing for me to say.  Aunts, uncles, cousins... really had nothing to do with me, but for one cousin who, I guess, simply took pity on me.  I felt the hostility from them all growing up and didn't understand any of it at all.  I felt it, saw it, heard it, and experienced that hostility until we moved away from California.  We moved to Colorado because my oldest brother wanted my mom to move there so she could babysit while he and my SIL could work.  I was in 8th grade when we moved, and my life didn't get better at all.

Longing for a real family... even to this day....

I would eventually move away from the state of Colorado.  My kids and I, to make a long story short as possible, ended up here in the south along the Gulf Coast, where we settled into that strange place (strange to us because we weren't from there) and would end up calling the south "Home."  It's the only place that ever felt like home to me.  I'm still in the south, but a little further north by a few short hours.  But back to "Family"....

When my mom passed, naturally my eldest sister got everything.  Very important items my mom was holding for me until I could send for them were divided amongst my brothers and sisters and nephews... or just tossed out as garbage.  They did this QUICKLY after my mother died, the day they found out, using the excuse that they were sure that since she was on disability, got a veteran's widow pension, and on Medicare, etc... that the 'government' was going to come in and take her stuff.  Yes, LUDICROUS, but that's the excuse they used.  And when I arrived for her funeral I wasn't even allowed to so much as have a photo of hers.  My eldest sister 'allowed' me to take ONE photo to have it photocopied.  My mom had boxes and boxes of photos, btw.

Few actually had anything to say to me at the funeral, or after.  It was the same shit, different day.. only worse.  A few years later I'd tried once again to make some kind of connection with them, but it ended in a total disaster.  I finally came to my senses and realized that I was the only one putting in any effort and that it just simply wasn't worth it.  I basically told my oldest brother and his bitchy wife to piss off.  And yes, it felt great and was LONG overdue.

In the present....

I know pretty much nothing of my family history, my family tree.  My last living grandparent died when I was 2 weeks old, and everyone else was so much older than me that no one really had anything to do with me.  My mom wasn't really forthcoming with names, histories, etc., though she did incorporate some names and such in a few fun stories she would tell from time to time.  But as a little child I really had no idea if she were making the stuff up/telling fairytales, or if the information was actually true.  And after my mom's death... the information about grandparents and such were simply not given to me, even if I asked.  Photos, etc.... all given to my sister, who claimed some neighbor stole them, were lost.  My brothers, etc. chose badly when they decided to give my sister everything.  One person said they thought my sister pawned or sold the framed antique photos of grandparents etc for money.  Sadly, it sounds exactly like something she would do.

The cruelty extends into adulthood....

When one of my brothers passed away a few years ago I was told about this AFTER the funeral had taken place, and... I was told on Facebook by a distant cousin.  She apparently looked for me on Facebook with ONE purpose in mind, and that was to send me a message that read.. "B**** passed away last week.  Thought you'd like to know."  I asked "How/why?" which lead to her replaying in the same short, blunt fashion. She then disappeared and didn't say a word ever again.  I'd written back a couple of times.. with no response.  I'd written my nephew as well, and have been ignored.  And this nephew I grew up with and was very close to most of our lives.  He's only 2 1/2 years younger than I am.

Cruelty was their favorite weapon, and continues to be so.


The family tree...

As someone who feels completely disconnected from 'family' or blood ties, history... it only stands to reason that I would, eventually, WANT to know something about my own family history.  SOMETHING.  ANYTHING.  So when I decided to look into www.ancestry.com I felt like I was taking a step in the right direction.  Maybe this site could help me put the broken pieces together in such a way that I would at least see my connection within the bloodline.

What I've done...

I created an account at www.ancestry.com over a year ago, but since I wasn't really willing to invest any money into getting a full account, I've only spent the smallest bit of time there.  But that changed for me about a week ago when I saw a commercial online for Ancestry and a DNA test they offered that shows where your bloodline is from, at least in percentages.  A lot of folks have jumped on board for this.  Now, one cool thing about the DNA test and having a real account (which I don't yet) is that you can set your family tree to allow links between matches for DNA, region, etc.  It's a lot more complicated than that, and they have a video that explains it all, but it's a really neat tool and a good place to start.  But what about for someone like me?....

DNA results may be the only thing I really get out of this, and that's okay.  It's something, isn't it?  It would be nice to know for sure what ethnicities are involved in my family tree, even if I don't have any family history to see how the pieces fit.  I sent my kit off today and, from what I understand, it will take about a week for the results to get uploaded online.  Knowing it's not going to give me complete picture of my family tree... I'm still okay, and I'm fairly patient where that's concerned.

So what's my freaking point here?

My point is this: If you have information about family history (names, places, etc) please share them with your kids.  Don't leave them in the dark to spend the rest of their lives wondering who they really are (history wise), where they're from, what their history is, etc.  It's really not a good or easy thing to live with when you have no idea about those things.  Don't do that to your kids, seriously.

My desire to know more about my family history/ancestry runs deeper than the hurt from the disconnection from my actual 'family members.'  I rarely use the word 'family' when speaking about them.  They're blood relatives to me, but nothing more.

I have to wonder if I'm beating my head against the wall trying to piece together a family tree I know nothing about.  Names, birth dates, etc. are required to even do searches or make connections.  What little information I have really just stops at my mom, and my dad I have only a name and birth date.  It's really like hitting a brick wall.  But is it worth it, all of this effort?  I don't know.

I really just don't know.  The one thing I DO know is that I'm left with the question: Will I ever fully understand myself in connection to history and ancestry?

*shrugs*

Random Thoughts at 3am

I had to make that meme.  I suppose it's just that one goofy part of me (sense of humor) that refuses to buckle under the health issues.  Yeah, I'm just ninja like that.

ANYHOO....Insomnia is a fickle bedfellow these days.  Incredibly unpredictable, I never quite know what it is I'm facing when I get into bed each night.  There's something triggering me to wake up when I go to bed, but I've yet to pinpoint exactly what that is.  Even nodding off on the sofa prior to going to bed doesn't guarantee I'll sleep once I get there, and in fact... it's almost a given now that I'm going to be waiting up, tossing and turning, until the wee hours of the night.  And what does this do besides keep me tired and exhausted?  For one, I get strange dreams, ones I really could've done without.  No, not nightmares... just dreams.  But still...

So it's 2am, 3am.. and stupid, random thoughts pop into my brain, which triggers more thinking, thinking, thinking... blah blah blah.  Damn.  Seriously.  WTH?  Most of it isn't even worth thinking about, I promise.

Okay, so falling back asleep this morning in hopes of getting about 5 hours I had a dream, and one that puzzles the crap out of me.  Well, I suppose most dreams don't make sense, right?  They're usually random babbling and broken intel of things we are either not dealing with, dealing with poorly, or unaware that we need to deal, you know, with those things.  But what about those dreams that aren't as chaotic and confusing?  What about the dreams that leave us thinking.. "Wow. That was so REAL!"  What about THOSE dreams?  You know the kind I'm talking about.

If your dream makes sense, what's the message?  That's the big question, isn't it?

I'm not sure what to make of my dream.  The content, which I'm not wanting to talk about, I think I understand, but my REACTION to it is yet another thing entirely.  It made me sad, seeing what I saw in the dream, though the actual thing happening wasn't a sad thing at all.  So.. wth gives?

Sorry to be vague about the dream itself, but some things are just TOO revealing of my own thoughts and feelings, feelings I'd rather keep to myself.  I'm trusting my instincts on this.  I may actually talk about this stuff in detail at some point, but I prefer to wait until I'm ready.  Hope you guys understand.

The other crazy thing that's happened today, post-dream, is that I feel a little anxious about my future.  It's like I'm being forced to assess what I want and how I plan to go about getting what I want, in terms of my future, happiness, health, and so on.  I don't have the luxury of being on auto-pilot, so introspection and continually assessing where I am and where I'm heading is really important.  T is more of an auto-pilot type, and it's not always easy for someone like me who's trying to take the wheel of my own life to be around someone who's just, well, letting life happen to him.  Not to say that his life is bad, because he's really chill and content most of the time.  I like to see where I'm heading, though, so laying back and riding the current isn't going to work for me right now.  Not sure it will ever work, to tell you the truth.

I wish I knew what my subconscious was trying to tell me.  I have a guess, but I don't LIKE that guess so am keeping an open mind and hoping I'm full of it. ;p

That's a lot of writing for someone who's as tired as I am.  Sheesh....