Still staying tuned?????

I'm going to attempt a written blog entry as I wait for an upload to youtube of an audio entry.  The entry itself is a couple of days old, so.. where I'm at right now isn't completely different, just more intense (if you will).  So much for changing the dialogue in my life.  The scenery is fine, so you know.

It wasn't a particularly bad day, and it wasn't the greatest day either.  My motivation continues to lag behind the wants of the will, spirit, and what I perceive in my mind's eye is nothing like the reality that surrounds me every waking minute.  Be that as it may, it doesn't mean I don't try and affect change, and even a little of that is welcome right now.  Still, I went from a relatively good place to being slapped back down the rabbit hole where all the dark things are.

Notice how much easier it is for me to talk about things when I'm not speaking?

It's still a trust issue, of that I'm aware.  And who knows just how long I will regain enough trust in the world and people to be able to just talk openly about anything and everything... with my own voice?  I guess my job right now is to just keep trying.

To those of you who wrote or called to beg me to keep doing audio entries, what I can say to that right now is.. I'll see.  All I can do is one step at a time, one day at a time, one life event at a time.  I understand to some degree (because you have pointed this out) that these entries are far more intimate and 'real' when you HEAR them.  Okay.  I can't promise audio entries 100% of the time, but I will promise to do what I can as time and energy allows.  Deal? ;)

Even so, tonight took an abrupt change when I had to remind T that I have to make a deposit in my account.  Long story short, I was met with a response filled with complaining, whining, insinuations, and more.  Well, good grief... sorry that I'm too sick to work right now, and sorry that the cards that have balances on them have those balances because of purchases made for THIS HOUSE.  Oh my God, but I'm really so tired of the dialogue.

I pray every night for healing, for energy, for an abundance of good health, and the ability to take my life into my own hands again, to remove the power he has over my life.  Oh, but how things will be different when I'm back on my feet again.  He's gotten far too comfortable with the control thing.

He does this nearly every night, making sure that I'm stressed, anxious, wide awake and unable to sleep.  And this is usually a given on the nights before we have to wake up at O'dark thirty the next morning.  I've a long ride tomorrow, 6 hours round trip and am loathing the idea, even knowing it's something I have to do.  I'll be in pain, and I'll be miserable.  My body isn't up to that trip but there isn't a thing I can do about it.  And now.... I get the added benefit of being ridiculously tired because T decided that unloading a plethora of negative statements and whining was a goal tonight.

As an aside, I got the new bed today.  I'm not sure it's going to be comfortable, though the manufacturer said it was the same firmness/softness as the bed that's already here in the master bedroom.  Chronic pain means even the most comfortable of beds feel like a torture device when it touches your muscles, joints, skin.  I may be a while on that recliner if this is the case, but I am incredibly grateful for that recliner, I admit.

Just checked the upload to youtube for that audio file and it's very, VERY slooooooooooow.  Just a shame it had to be tonight that I figured out an alternative way to getting those files uploaded, ad iMovie has decided to be a total butt and give errors uploading the usual way.

Well, I'm amazed at how much I can type now.  The shoulder still has crappy range of motion, but at least this part isn't as painful as it was.  And no worries, those of you who prefer the audio entries... I will still make those for the most part.

Now, while I'm able, I think I will attempt to do entries for my other blogs... specific to those blogs.  We will see, right?

Okay, so I'm outta here for the night.  Sleep tight... sweet dreams....

Fact after the fact.

Had an appointment with the Dentist re my "mild" sleep apnea.  This diagnosis, btw, was really surprising to me, because I knew I wasn't sleeping well but thought it was because I was waking up so much during the night.  Pain, etc., all played a roll in my tossing and turning at night, fighting will a stubborn pillow which refused to submit to my will, and wresting with a blanket that I once viewed as the softest, most comfy-cozy piece of fabric on earth.  I mean, microfiber is the shit, is it not?  Yet, it never occurred to me that I could have sleep apnea.  Who knew?

This diagnosis, as you guys may know from past entries here, and on my other blogs, happened a few months back, even prior to the AIH diagnosis.  However, the dentist I see who makes the oral device (CPAP is out of the question) revealed my "score" as "11."  I had no idea I even had a score, much less what that number was.  I really need a new pulmonologist.  Sheesh.

So the dentist held up my chart with "11" written with a black Sharpie and explained what was what, again, and what I should look for in changes as the device is adjusted over the next couple of weeks.  I asked him, as T did (he was there) what the number meant, and this is what he told me....

"That number is the score they gave you based on how many times you stop breathing while sleeping."

Well.  Alrighty then.

So as he further explained, it's a score based on how many times a person stops breathing during the night divided by how many hours they slept.  The score means that, on average, I stop breathing 11 times per hour.

I sat there for a moment considering this information, and I wasn't sure how to react really because it was the first time I learned of this.  No one at the sleep study center told me, and my pulmonologist didn't bother telling me at all either.  It took a minute to digest.

So I guess there's a damn good reason I'm tired all of the time--in addition to all the pain and weakness.  But wow.  11 times an hour--and that's in the MILD sleep apnea range.  Crazy.

Over time it will be interesting to see how I feel as the device is adjusted forward.  This device, btw, moves the lower jaw forward a little to open up the airway and move the tongue forward--this is based on CPR maneuvers.  Pretty cool.  But it takes a little time because if the jaw is moved forward too quickly it can cause TMJ.  I already have issues with this due to grinding my teeth when I sleep, something the dentist has told me is solely due to stress.  In fact, when I asked him what the 'cure' is, he replied... "Not being stressed."

Well, I'm shit out of luck in that department.  Oh well.  So anyway, the adjustments for me have to be done a LOT slower due to this.

On another subject, I will have a new cardiologist soon.  My first appt will be in May.

Now that I've made my arms ache typing... I'll wrap this up.  There's more to say but I'll give myself a little time in that respect...

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.

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....