The Weirdness of Dreams.

I had my first lucid dream.  At least I think it was my first.  You know how dreams are... some of them you just can't remember.  But this one was pretty clear, and it had the usual recurring theme as my dreams tend to have, which has been the way of my dreams nearly my entire life.  There are basically 3 recurring themes, but I won't get into those now.  But as dreams go, this one was quite different then all the others.

The dream:

I was home, in 'my' room doing nothing but sitting quietly on the bed and looking out the window.  Clouds outside were very low, dark, broiling... and they shifted into what I recognized as a tornado (common theme in my dreams and not in the least scary, btw).  I jumped up and ran into the living room looking to see what damage there might be, can I yelled out to T that there was a tornado.

I could see the deck out back was damaged, the railing torn, and some trees, etc. were damaged.  I then walked into the breakfast nook area, and this is when I noticed the furniture was different, the room was different, and outside the breakfast nook window was another room.. instead of the deck and gorgeous view.

Once I realized everything was different I stopped, turned a little bit and told T... "Oh.  Never mind.  It's is just a dream." I then just looked around quickly, amused that I was dreaming.. then woke.

Weird.

And I don't mind weird at all, but... I felt in my dream, as I do after waking from an interesting or otherwise really good dream, rather.. disappointed.  Perhaps it was because I felt as if I had control of things in the dream, and much less so than in real life.

Whatever caused this lucid dream--I hope it happens again, because... I rather liked it.  Honestly, I wish I felt in real life the way I do in my dreams.  Why?  Because it's more like 'living.'

"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...

Migraine...

Just when I thought I would be writing about something OTHER than this whole Prednisone experience, I end up with symptoms that will land me in bed the entire day.  It's a good thing I like coffee, because when it comes to migraines... coffee does help.

Then there's the nausea.  With prednisone withdrawal and migraine comes nausea.  It's a very bad day, I can tell you.

I took the 5mg dosage for the day, gagged down a little food (you MUST take Prednisone with food), and am praying that little bit will ease the headache.  So far, the headache is a little better than it was when I woke up, but I don't know if it will return when the Pred leaves my system (had a very short half life).  I can only hope and pray and leave my bed un-made and waiting.  Trust me, I'm going to end up back in bed VERY soon.

I'm also freezing.  This was also the case yesterday, and it's been like this off and on for the past week; also another side effect of Pred withdrawal.  There's just so many of them, and NONE of them are even remotely pleasant.  I'm waiting to find out from my doctor if I can taper off more slowly... much more slowly.  I can't just be an invalid until my adrenal glands catch up.  That won't work at all.

So how in the world am I handling this?  I'm not.  Just being honest here---but I'm not handling this at all.  Am I trying?  Sure.  Of course I'm trying, and I'm trying as much as my body will allow.  That's the best I can do; that and forgive myself for not being capable of doing the things that need done.  My animals are well taken care of, so that's the most important thing.  Dishes can wait.  Sweeping can weight.  The rest is incidental.

What I'd really like to see happen today is the cessation of this migraine (totally), allergies calm down so I can breathe better, and to be able to relax, actually relax.

...I'd also like a new pillow.

The Invisibility of Being.

Throughout my life I've been pretty thin-skinned, listening to others tell me what I should/shouldn't be, what and how I should think, do, say, dream... developed into an art form for me that damn near reached "Spidey Power" status.  No, seriously.  I would take and wear whatever anyone projected upon me like a shiny pair of Jimmy Choo's.  And trust me when I say that two-sizes too small absolutely made a difference in how I felt and carried myself through life.

Barefoot is better.  Know what happens when you go barefoot the majority of the time?  The soles of your feet get pretty damn tough.  Having grown up poor I had only one pair of shoes (cheap) at a time and wasn't really allowed to wear them outside if I were just playing in the yard, etc.  They had to last until my mom decided we could afford more.  I think I had the toughest feet of anyone I've ever known because of this.  The only thing that really hurt me was if I stepped on glass (which I did a few times, once landing me in the ER to have the glass removed), and when that California asphalt and concrete got hot enough to fry an egg on.  Even so, over time walking barefoot didn't bother me one single bit.

But what about the INSIDE?  Oh, but that was a whole different story altogether.  I couldn't walk my way through through the pain to being 'thick-skinned' and pretty much felt the weight of anything and everything that was said to me.  Criticism became truth, a 'reality' handed to me that I willingly took.  My childhood experiences weren't filled with encouragement or praise nor even helpful criticism.  Indifference and criticism, and many times complete withdrawal of love and affection were the tools used to shape the person I would become.

I was to become the child who survived.

In adulthood, that small child I once was is alive, and though not well, that part of me is AWARE.  There is still a disconnection of who 'that little girl' was and who I am now, and I still see photos of when I was little and feel such pity for 'that little girl.'  Yes, I know it's me, of course.  But the disconnection is still there just the same.  I want SO much to apologize to her and say "I'm sorry I didn't protect you!"

I've accepted this disconnection as a part of who I am, but I don't like it one single bit.  C'est la vie.

I remain thin-skinned, but my reaction to criticism, disrespect, and so forth is very different now.  I've allowed history to repeat itself in relationships I've had, and the reality of this has unprecedented tenure, so it would seem.  It will be with me the rest of my life.  Okay.  I'll just have to work around that when possible, right?

So here I am all grown up and stuff.  I can make decisions, change my mind, and walk away from anyone or anything that threatens my happiness; such are the benefits of being an adult.  Right?  Well, not exactly.  At least not for me.  That subconscious, that inner child, the child I actually WAS at one time so long ago, well.. she has a mind of her own and remembers the pain, the isolation, the indifference, the coldness, the invisibility of being... well, me.

Such memories carry over for the long-haul and map the course of life in often undesirable ways.  But it doesn't always have to be like that.  I can do more to help myself in that respect.  And I do.

On bad days, of which I have far too many these days, that inner child is the one who suffers most.  Sure, I feel the physical pain, and I feel the isolation of my situation and all it invokes (depression, anxiety, etc).  But it's what happens INSIDE that changes my world, my life.  All I can do is anesthetize myself with too much coffee, reading, and way too much television.  My physical body simply refuses to allow much more these days.  That's okay, because eventually the AIH and the 'possible' Myositis, both autoimmune, is driving the bus now, and not even my inner child can rebel against that and affect change.

Sitting here in the quiet, drinking coffee, talking about things I've not talked with a single other human being about...well, but for one therapist for a very short time, I can definitely say I recognize my life as it was, and as it still is; The invisibility of being... me.

First Labs Post-Prednisone & Azathioprine

So looks like another medication is being added to the list--Lasix, a water pill.  This is needed to reduce the amount of EXCESSIVE water retention caused by the Prednisone.  I'm really glad to know about this addition, though it's going to be rough heading to the bathroom constantly.  Oh... but I'm SO very glad to do so!  You've NO idea.  But there is other news as well...

Liver enzymes: At the start my liver enzymes (which is NOT a liver function test) were elevated some 7-8 times that of normal, depending on which end of normal you do the math from.  Considered by the doctors I saw these were considered "significantly elevated."  Some people have way more elevation than that, but apparently research says that the actual numbers don't always indicate prognosis or how significant the disease is at the time of diagnosis.  But today, thankfully, I'm told that the one enzyme that is still elevated is only elevated by a little now and "Much better than where it was before." YAY!!  That's good news!

While I have to wait to get the labs actually in my hand to SEE them, I was also told that some tests came back showing mild muscle inflammation.  Not sure which test that was, but it doesn't really surprise me.  I have labs rechecked next Monday also in order to make sure the Azathioprine is helping, and not hurting things.

Good news, right!? :D  And hey, as long as those numbers go down and into the normal range, I can deal with some side effects from Azathioprine.  I mean, as we go along this journey the prednisone will be tapered... and THAT is DEFINITELY a good thing!  Not treating AIH means possible progression to cirrhosis.  Only thing statistics say about this that I don't like much is that 80% of people who go OFF medication to control AIH have a flare up within 1-2 years, and it often comes with the nasty addition of fibrosis or cirrhosis.  Yeah, I'm okay with medication inconveniences over death, thank you. ;)

So what's the deal with muscle inflammation?  I've no idea.  Guess that may be addressed next... we'll see.

How's that for some good news? :D

Getting My Attention

So, first of all, my blogs are about my life, my seeking to understand where I am and who I am in the midst of a few unpleasant truths.  Be it a past filled with abusive relationships, abuse of other kinds, living with and around controlling people, my health.. it's just me here trying to work things out in my mind, spirit, body, and my life as a whole.  Every now and then I'll indulge myself in other topics, but my goals are to REALLY work though some things that are, frankly, long overdue when it comes to 'dealing' and 'preparing' the broken, jagged pieces of who I am.

There will be times when I speak of things completely outside of myself, and when my focus is on me.. it's not because I WANT to be in that inward place so much.  Actually, where I want to be is healed enough on the inside, both physically and emotionally, that I can turn my attention further outward and away from that inner ground zero.  I'm not comfortable in this place and want a way out. THAT is why I talk about what I do and from a place that is centralized and within.  This is how I'm dealing.

And I make no apologies for how I choose to work through the matters that demand my attention.

Peace.  Joy.  Happiness.  Comfort from within.  Hope.  Freedom.  To have wings again... to live, to breathe freely, to seek more time in that outside world... I don't think my dreams or goals or wishes are that much different from others.  Correct me if I'm wrong here, but I think most of us would like those things I listed to be the foundation for everything else.

The more I find my health failing, the more I reach for what was, could be, and has been.  Why not return and see a better past and hope it can be again?  Why not remember when life was, while not easy, at least more like LIVING?  It only makes sense to me to make that a focus.

I've turned away from my own needs for so long that I was lost to everything completely outside of me.  I disconnected from my own personal truth, my dreams, even my own body, and I paid a terrible price for that, a debt I'm still paying as of today.  And all because my core belief hinged around making sure others had everything they needed first, that they were happy, and by God if I had to change who I was completely to make a loved-one happy, then by God I will do it!  What the hell was I thinking?  No!  That's NOT the way it's supposed to be, and yet I wasn't ever taught to take care of me.  Life was always centered around pleasing someone else.. all of the time... beginning with my mom.  This is repeated in nearly every relationship I've had.

I was told in a past relationship that I was self-centered.  Words like that hit me pretty hard and a reaction is always immediate.  Self-doubt steps in and takes over, pushing reason and logic aside to wither.  Having spent the better part of my life as a chronic people-pleaser, because God forbid I risk anyone's ire by disappointing them, I've attempted to 'reinvent' myself to a point where I've come dangerously close to losing who I am.  I know it's the inner machine working and grinding to reconcile this new and "selfish" idea that I should, you know, maybe start taking care of myself with being that person who was always, always putting everyone and everything else first.  And yet each and every time I try to do something for myself out of self-respect, logic and reason, I get a hard flash of guilt that makes me question why I would bother [doing anything for me].

Why I listened to anyone who didn't have my best interests in mind (to say the very least) is beyond me still.  If I ever finished the therapy I began at the end of the last relationship I probably wouldn't be wrestling with this right now.  I will say I learned much in the few short months I did see a therapist, one I was seeing because I DID recognize the damage that was done to me in the last relationship.  Beverly taught me a lot, and not just about myself but about the other person involved.  And I cried the day she told me, point blank, that I'd spent far too much time in my life focusing on the happiness and needs of others, and that it was time to accept that I needed TLC as well, especially from myself.  I had this sense of surrealism, and it was very strange to hear someone say those words to me in the way she did.

And yet I thought.... 'What's the catch'?

That's the real issue.  I don't trust easily now.  And I used to be a subscriber to complete and total blind trust.

No more.  I can have a healthy amount of trust without all the blindness, but it will take time.

And the guilt, the constant guilt whenever I speak about my problems here, whenever I do something positive or uplifting to my spirit, my soul, whenever I open up and speak from the heart about what's going on with me, my life.. that guilt cripples me, and the ugly voice of the past speaks up and tells me I'm selfish for doing anything at all to make my own life better.

...... more later.....

What is worth more than this day?

I've been blog by blog, fueled by a little too much coffee this morning.  And yet I feel accomplished as I discover that, once again, my mind has cleared a little (thanks to the Prednisone??) and I'm able to get my thoughts out.  My other blogs, well all of them, are being filled with ideas, expectations, hope, contemplations... and I am feeling uplifted for the moment...

It's another day.  It's another day living with an autoimmune disease that is far from reaching remission.  I know the deal, summon the patience needed to accept the situation and it's processes, the time it will take to reach remission.  1-2 years.  I can do this if I focus.  Yes, there will be good days and bad days and struggles and set-backs, but there will also be victories.  It is what it is.

Acceptance.

Today began a little rough, not feeling well in the least.  However, and maybe not the best idea, I used a bit of extra caffein to boost myself to the next level here.  It worked.  So far it worked.  I can't do this every day, obviously not healthy, but I can do it when I need to.

Today is a good day.  And I'm going to get some things done.  Are there obstacles?  Yes.  Always.  But that's life, isn't it?  In the meantime I will take advantage of what energy I have, even if it is caffein-induced, and I will use it for what needs done.  Oh but I would love to have a take-it-easy kind of day, actually NEED that.  But not today.  Not today.

So I will listen to music, have this last cup of coffee, and find the drive and determination to complete tasks that are, quite frankly, not the easiest things for me right now.

I'm tired.  So tired.  But today is a good day.  And I'll take that.

That Love/Hate Relationship with Prednisone

Look, without a sense of humor, a life-long/chronic illness can steal your joy. ;)

Christmas is done, and the move into the new house is 99.99% complete.  Just a few items remaining at the old house at the moment, mostly due to the need to make room here so one doesn't feel hemmed-in.  While the move itself wasn't 'that' bad, it became a little easier when I began the first week of Prednisone--a drug I'd had to use in the past for something else and learned to both loathe and love equally.  This particular drug honestly needs to be held in reserve for the most extreme of circumstances.  The side effects of using and withdrawal are usually brutal.

How quickly those first couple of days became something to remember-but in a very good way.  My energy changed within 2 days, and nearly all of my symptoms ceased.  But the timing of this drug is tricky as one begins on high doses, then tapering to lower until remission (in my case) is obtained and held.  For the record, remission can take from 12 months to 2 years, depending on many factors.

So there I was in absolute heaven, though not feeling 100% it was SO drastically different (how I felt) that it instilled such hope and anticipation as to how much better I just knew I'd feel by the time this month of high-to-low dosing would take me.  Well, things changed quickly just a few days ago as I tapered down that first 10mg.  Dammit.

40 to 30, 30 to 20, 20-10, then 5mg for another month before the follow-up appointment.  That is, until within about 2 days of that 10mg taper I can crashing down HARD.  Phone call to the doctor and he moved my followup appointment from March 28th to January 25th, and he said to go back up to 35mg/day for a couple of days then to the 30mg.  So far, it's not taken much of the edge off the symptoms.  Ugh.

Sitting, standing, laying down, you name it... all very difficult yesterday and today.  And I've had some things to deal with on the computer most of the day so have been sitting upright for a few hours at a time.  And BOY does my upper right abdomen hurt.. all the way through to the back.  I'm really hating this at the moment.

That's where things are basically.  Wish I had more energy and stamina, was in less pain... so I could talk about all the other stuff.  But I have to listen to my body and go with what I know.  It's rather time to chill for a bit, regardless.

More to come...

More to catch up on...

Damn, crazy life...

Ever-Wondering Why I Bother to Give a Damn

It was a long holiday weekend filled with packing, moving a few loads over to the new house, and lots of anxiety having to be around T for that long.  I'm not being mean here, I assure you, but the magnitude in which he's "just not there" is ever more apparent when we're around each other too much.  And honestly, it drags me down and wears me out beyond words.  Not sure how I can handle this much longer.

I try very hard to be patient and understanding, but it's nearly impossible to feel those things when the other person is simply not trying at all.  I'm a ghost in my own household (notice I didn't say "home"), and the weight of being absolutely trapped is taking a tremendous toll on me both physically and emotionally.  Life isn't supposed to be this hard.

He's supposed to go visit his family in Florida next month, and no.. I'm not going.  By choice.  I'm simply not up to that long drive right now, and honestly... I really need the time alone; maybe I'll be able to breathe for once.  I'm a little scared I'll like being by myself much more than I realize.  Though it really wouldn't surprise me...as I crave space, peace, breathing room, a place to stretch these broken wings and try and remember what it feels like to fly.

...It was another weekend with my pointing out all the ways he tries to control me, how he treats me like a child, how he doesn't respect me... and as always it falls on deaf ears.  Oh, he vehemently INSISTS that he understands what I'm trying to say to him, that he gets it, that he will try harder, and so on..and on..and on..and on.  His words mean very little to me anymore, and his WORD... means even less.

I can't rely on him following through.

Honestly, I could understand his not being able to follow through on some things if there were a REASON.  But there's not.  He simply just... doesn't.  And it's very telling.

In the meantime I try desperately to hold on, to remember who I am, to remember my dreams, wishes, hopes, goals, and to remind myself that my needs matter too.  I also have to work on not being completely rolled over by him when he does this; and I have to say it's nearly impossible.  I mean, let's face it---I'm not the toughest person, and I'm sensitive to both people and environment.  And my environment right now is NOT conducive to happiness, joy, OR healing; three things of which I need desperately in my life.

How the hell did I get here?  Rhetorical question, really.  What I should be asking myself is 'How did I get here AGAIN?!'

Okay, so truth be told I'd have to say I HAVE asked myself that question and know how I got here again.  I'm not in the awful places that I've been in the past with relationships, but this one isn't healthy for me at all.  So what do I do so that I can thrive, live, and be able to breathe in my own space?

That's the million dollar question, isn't it?

And I'm working on that...

I am.  I have to.

HAVE to.

Testing patience, and those damn zombies

Patience is a virtue--blah, blah, blah.  No.. patience is a skill!  I used to have nearly endless patience, but I was taught over the past few years that too much patience extended incorrectly can turn you into a doormat.  Doesn't meant to say that patience isn't good or necessary (because it is in most cases), but you have to know when enough is enough.  Obviously, I haven't learned this particular lesson or skill myself, as I continuously allow far too much that wrecks my peace, tranquility, and overall health.  Enough is enough.  Right?

I've been told that if someone is complaining a lot that they're just 'negative.'  What I learned from an expert is actually the opposite.  While complaining about what negative things are going on in one's life may appear negative in itself, it's actually a side effect of seeking answers, resolutions, and working towards understanding of the situation.  It took me a while to understand and accept that it's a natural part of a necessary process, though, but I now understand what's going on and why it's okay, sometimes, to vent.  Some of this most people already know.  In the end, if someone is complaining about x, y, and/or z... listening can be of SO much benefit to that person.  And for those who proclaim that the person's 'negative energy' is wrecking their day, their mood, etc... you may want to consider that it's not that person's 'energy' that's wrecking anything.. it's your perception and resulting Reaction that changes things on your side.

Research, for example, has shown that in times of stress, anxiety, anger, etc... using the 'F' word actually lowers blood pressure!  Funny, I know... but absolutely true.  When it comes to complaining, as long as the person is venting the pressure they feel in the process... then it helps.  If the complaining is merely a habit---then it's most likely a groove they've gotten themselves into, rather than an immediate stressor they're trying to work through.

If I had a dollar for every time someone says they're a "Good listener".... I'd be rich.

There are good listeners, and there are some who completely and totally SUCK at it.  And should you ever REALLY need someone to talk to you better know which people in your life fall into which category.  If you trust the wrong person and let it all out, you're likely to feel far worse than had you said nothing at all; I think we've all been there.  Just a little inventory of your personal social network can tell you a great deal about whom you can trust.  And by "personal social network" I mean just that.  Not online social network ONLY, but the people you interact with, be it online or off.

The enablers...

These types of people listen, all right, but their usual reaction is to commiserate with you.  This is neither appropriate or helpful.  There is a difference between 'understanding' and 'commiserating.'  People understand may offer up something to let you know they've 'been there, done that and understand what you're going through.'  There's nothing wrong with that at all, and it makes the person who needs to talk feel much better about their situation.  But then there's the OTHER type, the ones who jump right in and complain heavily about their own experiences, tell you their entire life story, then tell you why you should keep feeling the way you do.  These people are easily recognized because you walk away from the situation feeling much worse, and also feeling like there's really little hope.  They in effect enable whatever negative emotion you're feeling while jumping on board and adding fuel to the fire.  Not to be confused with those who are offering up good advice while being emotional about it.

The Borg...

Think I'm kidding here? lol  I call some people 'Borg' when they harbor both contempt and indifference to your pain.  As you vent these people appear completely detached, and quite often respond with a little more than a grunt or canned response (if they really respond at all) while also trying to change the subject to something more palatable to them.  These types are actually quite dangerous to your situation, because on some very deep level they want you to feel worse.  Sounds crazy, yes?  These folks often KNOW you're feeling bad, down, etc... and ASK WHY you're feeling that way, only to respond with impatience, contempt, and sometimes even anger.  And this is IF they work themselves out of their own disinterest in you and your situation.  Steer clear of these types!

The zombies...

Many of us have watched enough zombie movies etc to know what zombies do.  Zombies are consumed by their own needs, self-interest, and will take whatever it is they want, no matter what it takes to do so.  They feel nothing, and they're relentless.  The only driving force is the all-consuming hunger to 'feed,' and they don't care if the person they're 'feeding on' is a family member, friend, loved one.  Zombies are consumed by 100% self-interest.  Period.  Oh, and there's the that lack of humanity thing.  Sounds like a lot of human beings, doesn't it?

While these zombie types don't try and eat your face off, they will still utterly consume you piece by piece until there's little left of you; and what is left is barely recognizable.  This type of person is by far the most dangerous of all.  This type of person psychologists refer to as narcissists.

Of course, the analogy of the zombie here is used somewhat loosely because I'm not talking about people who have no pulse, aren't breathing, and who eats the flesh of another human being.  Silly as it is for me to say that, I still feel I must.  But let me also clarify something---if you put everything a zombie is into an actual living, breathing person... it's pretty frightening.

My past relationships have included Zombies and Borgs, and those experiences nearly destroyed me as a person.  Truth.

Running interference

"STOP!"  Some words have lost their effectiveness.  As many times as I tell myself to stop with the stupid internal dialogue it has yet to have any real effect on me.  Damn, but my inner child is stubborn as hell!  But then, all of me tends to be that way.  With a lack of a support network I'm left to my own devices, and the on-screen blabbering of an indifferent internet to fill that void.  Guess what?  NONE of it's working.

Inspiration, more specifically the lack thereof, squashes motivation before it even gets out of the gate.  Am I saying I'm uninspired, then I would have to say "YES!"  Knowing my situation will only change when I facilitate that change (personally) is enough pressure all on its own, but when I'm told my my cardiologist that I can't exercise until after I have the nuclear stress test and get the results, well, that really puts a massive damper on things.  And waiting is just another level of hell.

My subconscious is raging against all that's happening, behaving like a willful, spoiled brat, and one in which I can't exactly order to go stand in the corner somewhere.  So the tantrums ensue, unchecked.  Yippee.

Yesterday I saw an orthodontist about an oral device that will help with this mild sleep apnea.  While waiting in the office I thumbed through a huge binder filled with handwritten testimonies of people who've gotten this device (which is a lot like what you wear to protect your teeth if you grind them in your sleep).  Anyway, encouragement and hope literally poured from the pages, and I actually felt myself on the verge of tears at the thought that "I" could really feel THAT good again.  There are things I still need to do with regards to my teeth, like get a dental implant for the one I cracked severely from years of grinding my teeth, so that will slow things down a bit.  Waiting... has never been my strong point.  Delayed gratification sucks when it's something this necessary, vital even.

For every night I spend in poor sleep, I wake to feel as if I'd not slept at all.  So how is it that I'm going to be able to wait for the next few weeks in order to deal with the process of getting that dental implant?  How in the hell do I make myself okay with feeling like THIS for yet a few more weeks?  I really don't know that I can do it.  BUT, I have to.  They can't have them make that oral device before I have the other done because it won't fit.  Ugh.

As my subconscious rages, as it seeks to pout and crawl into a deep, dark hole where it can sulk in private, I'm left with the aftermath of its childish behavior; depression, hopelessness, sadness, bewilderment, and at times anger.  Screw this.  My subconscious and I need to have a damn talk!

I really could use a support network right now.  Having to admit such a frailty is really uncomfortable, I'll have you know.  Over the years I've changed from someone who was open, okay with expressing feelings and allowing them to flow through me so I could deal with them, to someone who refuses to cry in front of anyone, to show my vulnerability, and to even express my needs.  This unpleasant change began a few years ago and has continued to hold onto the part of me I want back.  I feel like a damn hostage inside my own body.  Wtf?

Free me...

To speak in uncertain terms

I literally just wrote several paragraphs before deleting every one of them.  It's my state of mind at the moment, I suppose, really feeling like I need to talk about so much but finding the words impossible to convey what's needed.  Speaking my mind these days isn't always easy, and trying to speak my mind in uncertain terms usually ends up being the case.  Where did the girl go who could quite easily let it all flow out onto the page, or screen as it were?  Dammit.

Where is my voice?  Have I simply worn myself out by expressing what I feel and need?  Is there some cutoff inside that totally prohibits discussion on a matter that's been beaten to death with no resolution from the other side?  Where the hell is my voice?!

Too much going on.  Too much unresolved issues.  Too much indifference.  Too much passive-aggressive controlling from T.  Too many unspoken and unreasonable demands put upon me.  At some point a person under "Too much" gives in, gives up, or gives out; I tend to vacillate between all three.

When I speak, to whom do I speak?  That's a rhetorical question, btw.  I need to talk about what's going on with my health, my lack of any quality of life, my concerns, my needs, my life.  And yet, here I am pouring out what I need to talk about online, rather than talking about what I need.  Geez.  I'm starting to not make much sense, but I'm sure a few of you get where I'm coming from.  It's a familiar place to many, though probably not to all.  This place, this unhealthy place where I am right now, is actually making it more difficult to speak my mind.

Have I developed so much mistrust in people that I can't bring myself to actually say what I need to say?  This has been an ongoing theme in my life (and here) for quite some time now, and where I was once able to pour out my heart and soul and mind freely, it just seems as if every part of me that should be free is tightly shackled, gagged, and sedated by defeat.  That's not a good thing.

Once upon a time I would pour out my soul here.  Those of you who've been reading my blogs know exactly what I'm talking about.  Wether I was raging, hopeful, dreaming, wishful, happy, sad, surprised, or any other number of feelings... I was able to convey everything clearly right here, even if I weren't speaking to anyone else face-to-face.  So what's happened?

I know the answer already, though it's really difficult to say 'out loud.'  But as a first step to getting over this wall, or breaking it down, I can honestly say that I am a product of my recent history, and by 'recent' I mean over the last few years.

After being raged at and punished for speaking my mind the wall was built.  I really didn't know it was happening on all levels, but deep inside I knew, and I let it happen.  Frankly, it was absolutely necessary when it was happening.  The wall went up to protect myself, and now I can't seem to break it down again.

So, how does one get past this?  *shrugs*  Beats me.  But it needs to be done.  HAS to be done.

*sigh*

PART I: Deciphering Indifference: Don't waste my time

It's a chronic problem with T.  It's a chronic problem with a lot of people in this world and is more evident now than ever.  People have allowed a destructive numbness to creep into the very fabric of who and what they are.  The consequences of embracing indifference is that it becomes a part of you, defining you, and ultimately destroying everything with its insidious whisperings inside your mind and heart.  It's a comfortably destructive habit that will take everything about you and make it its own.  It walks softly into one's life as a comforting buffer against anything and everything that makes you... FEEL.  And in the throes of its seductive and blinding embrace... you can be ultimately lost forever.

Indifference is like the sting of a mosquito; with just the smallest amount of anesthetic you won't feel the effects until it's too late.

When blind indifference takes hold of a person it's usually a selective process that often singles out just one, at first unwitting, individual.  Damage is done to both sides, but the effects of the one staring into the face of indifference are far greater in intensity and much longer-lasting.  Honestly, as much as we humans try to distance ourselves from the hurtful effects we too often fail at removing ourselves effectively.  That doesn't mean we don't on some level understand what's happening, and usually several attempts are made to make the other aware of what they're doing.  But true to indifference's nature our words, actions, they all fall on completely deaf ears.

I've been through two relationships of indifference, and both times I ended up not caring a flip about that person in the end.

Over the last few years I've come to see indifference from new angles, and I no longer believe that I'm the one who has the responsibility to fix what's happening.  On the contrary.  I wasn't put on planet earth to fix anyone, except myself.  If indifference is really all that person has to offer, they have absolutely nothing to offer.  At least not to me.

While I've focused yet again on 'the thing' that I want to talk about, I haven't actually shared where I am in this whole thing.

Where I am in all of this and why talking about it matters...

In context, indifference matters a great deal when it comes to me and my life, my emotional and physical health.  It directly affects how I go about the course of my life, the details of who I am and what I want and need are blurred beneath the sharp blades that attempt to obliterate all in its path.

Case in point: Following the first IV iron infusion for anemia there were symptoms that I couldn't pin-point, ones that usually put someone on alert.  With my heart and lung issues, having severe breathlessness and chest pressure is one of those things you simply shouldn't ignore, no matter who you are.  A smart person would at least mention it to whoever they're living with, or call someone to let them know what's going on... to be on the safe side.  Though, I have to add that it's a good idea to call someone who actually cares, because the alternative could be deadly.

Roughly about a day and a half after my IV infusion I had an 'event' that evening that startled me.  I had just gotten into bed and found the usual breathlessness that I experience every night (heart issues), but instead of easing a little.. it actually intensified... a LOT.  I found myself feeling as if an elephant was sitting on my chest, and I was gasping for air.  Literally gasping for air.  This went on for about 10 minutes or so until I became so fatigued by it all that I actually fell asleep.  But before I fell asleep I alerted T to what was going on.  He was actually standing near my side of the bed and wide awake, and when I told him what I was feeling, while gasping for air between words, he..said.. absolutely nothing.  Nothing at all.  He went around the other side of the bed and laid down in silence while I continued to gasp for air.

I propped myself up on my side on one elbow, still unable to breathe correctly, still gasping for air and trying to slow down my breathing.. thinking it may help.  I'm not prone to panic attacks and felt no panic at all while this was going on, hence my not insisting I go to the ER.  Was it concerning?  Of course it was!  But I believed it would pass.  And it did.. after I fell asleep.  I was exhausted by the experience.  Utterly exhausted.

The next day T went to work as usual and didn't mentioned what happened the night before.  What this left me with, like several other 'acts of indifference,' was a deep-seated mistrust, and it went so deep to the bone that I cannot shake it no matter what.  But in reality, I don't WANT to shake this mistrust because it's necessary.  This isn't the first time or first issue that's come along to instill a strong self-protectiveness.

T, I have found, doesn't really care much for anything any further than about 6 inches outside his own skin.  He's aware of it, I've tried to talk to him about it, strongly suggested he "Pick something and practice giving a shit," and all for nothing but wasted breath and wasted time.  I don't have any inclination to continue wasting energy and time on someone who's not willing to give a damn.

Whenever something of vital importance arises, T is "absent."  He's not plugged in.  He's not at all invested.  And this is why I grow increasingly weary of involving him in anything important that's going on with me, my health, and so on.  He's basically now on the outside, and he's even indifferent to that.. until he feels it's going to affect him personally in some way.  *sigh*

There will be a PART II to this, because it's a huge huge issue for me, and one that is helping to destroy my health.  It's about time I talk about it ALL, and it's just too much for a single entry.

I'm exhausted.  Deciphering indifference is a huge energy-suck, and I just don't have any energy to spare.  If you don't FEEL anything---don't waste my time!

When you find yourself saying "I'm a light sleeper"

Until the last few months I really had no idea or understanding of what that phrase actually means.  To someone who is chronically tired, falling asleep during the day, and just not feeling well at all, those words come to have a greater meaning upon discovering that being in a state of 'light sleep' most of the night can have serious consequences, especially over the long haul.

I can't tell you how many times over the past 15 years I've said "I'm a light sleeper."  My kids are grown with kids of their own, but I remember as far back as the 70's, when my first son was born, how I would wake up quickly and thoroughly when they would make even the slightest sound.  It's 'mother's intuition' or 'mother's hearing,' as some call it.  But in the last 15 years I've come to accept this 'light sleeper' thing as simply remnants of that 'mother's hearing,' due in part to the fact that this works with my pets as well.  Just the slightest sound, especially when it sounds 'wrong'... I awaken.

Over the past 6 years or so, at a guess, my sleep patterns have gotten significantly 'off,' leaving me to awaken at ANY sound.  A car passing by my house, the sound of neighbors' voices, rain, thunder, someone just being awake in the same house I'm in, someone using the restroom... I can't really think of much that WON'T wake me.  And very recently I've come to discover the effects of this sort of sleep is cumulative and damaging.

Several months ago I purchased a machine called a ResMed S+ at Bed, Bath & Beyond.  ResMed is the company that makes CPAP machines and masks, and they made this device to help people measure the quality of sleep, help them fall asleep, and also to help them improve their quality of sleep.  What I discovered by using the S+ surprised and shocked me in many ways.  Using a scoring system, with 100 being the best score, I realized just how poor my sleep quality was.

Then I saw a pulmonologist who ordered, among other things, a sleep study where I discovered I have mild sleep apnea.

While the S+ couldn't tell me if I stopped breathing or how many times, it did measure REM, Light, and DEEP sleep, as well as how long it takes me to fall asleep on any given night.  The score is presented each morning.

The image at the top of this entry is a recent score from a couple of days ago.  This is not the worst score I've gotten--not even close.

As you can see, my DEEP sleep is incredibly short at 16 minutes.  That's BAD.  It should be closer to 1 1/5 hours.  REM sleep, on this particular night, isn't all that bad, really, as I've seen it as low as 15-20 minutes.  And LIGHT sleep always seems to dominate my sleep--also not good.

During light sleep a person is actually aware of their surroundings; sound, light, movement, etc.  And yes, this is why some people wake up easily--because they stay mostly in a state of LIGHT sleep.  This is not restorative sleep, btw.  REM mostly restores the mind, and DEEP mostly restores the body.  It's all quite important.

Again, what this machine does NOT show is the little awakenings, cessation of breathing, and other neurological events like restless leg syndrome, even teeth grinding!, which often comes with sleep apnea.  What it does actually show, however, is how many times I woke up completely and totally.  A person may or may not know they woke up every time, depending on how tired/sleepy you are.  So what's so telling about this?

Well, in MY case, as this ONE example shows, I woke up 8 times in one night; I've had many nights where this number has been as high as 14.  And remember, this is not counting the micro awakenings or cessation of breathing.  However, a sleep study has a very complex system of monitoring so that they can find the micro-awakenings, cessation of breathing, and so on.  In mild sleep apnea, for example, events happen 5-10 times PER HOUR.  In severe sleep apnea this can happen hundreds of times per hour.  Mild or severe, this can cause hypertension, heart attack, and stroke.

Basically what this means is---if you find yourself telling people you're a light sleeper, if sounds, movements in the bed, etc. wake you easily, and especially if you have symptoms of sleep apnea, you may want to consider bringing this up to your doctor; It could actually save your life!

In my personal case, I was actually quite amazed at how i felt after the second sleep study I had using a CPAP machine.  I felt pretty darn good the following day.  And while I'm having issues with my skin being tender and sensitive to the mask, etc., I know I'm going in the right direction.

Sleep apnea can cause heart arrhythmias such as Atrial Fibrillation--which is known for causing stroke.  Sleep apnea can also cause various other heart conditions including, but not limited to, congestive heart failure.  And if THAT isn't enough, do know that it can cause weight gain, muscle fatigue, back pain, joint pain not unlike that which comes with arthritis.. and more.

Do you snore?  That's a tell-tell sign of sleep apnea, btw.  Tired, sleepy during the day, snoring at night, fatigue... please listen to your body.

A Beautiful Mess

I often think; here is this unrecognizable person in a completely unrecognizable life.  What do I do about finding my place.  Dear God, but this is a common topic, isn't it?  There's a reason for that, and that reason is quite simple; I've yet to know the answer.

Monday-Friday are the easiest days of the week, the best days really.  I'm alone, but that gives me a moment to take a deep breath and try to navigate on this crumpled map whose lines and defining points have faded or become too abused to be read anymore.  If I'm to find my way it will require intuiting and an enormous amount of courage.  Without a sense of direction there's no telling where I'll end up when I reach the unknowable destination.  I guess I'm okay with that, though.

One thing I can say is that I can clearly see my destination.  Well, okay.. most of it.  But I see enough to know where I should be.  And isn't that really what we need to know?  Isn't that the most important information of all?  I certainly think so.

So many plans; so many thoughts and dreams colliding all at once.  It's a beautiful mess.

The Beautiful Face of Good Health

I tend to scatter my thoughts, experiences, opinions, and everything that passes from my mind to the virtual 'page' between my blogs.  It's just the way it is since I've promised some to not delete any of my blogs.  Fragments of the whole picture of my life, thus, remain scattered here.  But then, each entry is a story in and of itself.  In so many ways... it's just better this way.

IV iron infusion part 1 is next week, and the second treatment is 7 days after.  Sleep study the other night was revealing in ways that gave me hope.  Progress is often non-linear and chaotic.  But wouldn't it be nice if everything in life was precisely ordered?  No.. even I don't believe that.  Chaos is just nature's way.

While I don't have obstructive sleep apnea, I have another form.  Okay.  So there's a treatment for that, one that has been proven with just one night at the sleep center.  Who knew CPAP could make that much of a difference?

I'm on my way.

I'm a bit on the tired side again today (no home CPAP until tonight), so this is short and... a little flat, I'm sure.

....there is still so much to talk about....

PART 1: IV infusion... bringing health up to speed?

So I got the call yesterday that my labs confirmed the iron deficiency and that I will be scheduled for an IV infusion.  It will take about 30 minutes for the infusion (not bad), and another 30 mins for observation for any reactions...which can be quite severe/dangerous (anaphylactic shock).  Then I have to go for a second treatment one week later, then it's observation from there to watch for any declines in ferritin, and also to see if the levels are increasing to where they should be.

I'm really hoping this will take care of the awful fatigue and other symptoms, which may not be all due to the ID/IDA with all the other issues going on.  It will be nice to have my body temp in a more normal range where I don't feel as if I'm freezing all of the time.  My temp at the doctor's office yesterday was 96.0*F.. it's been running very low like that for some time, I'm assuming, from the ID/IDA.

Let's just say... these are all steps in the direction of obtaining better health.

Dear Subconscious... SHUT UP!!

These dreams.  You know.  I've talked about them in past entries.  They're always quite memorable.  They don't leave me be but haunt me throughout the days, nights... in far too many waking moments. They arrive, unbidden, though I do admit to having contemplated the why's and wherefore's of their appearance.  Especially now.  Maybe because of now.  Not one damn answer as to why....

Dwelling on these dreams isn't a 'thing' with me, and most of the time it's just this haunting feeling I get... that eventually eases as the day, or days, go on.  The intensity of their message(s) increases with each subsequent dream, and I just don't know what to think about them.  It's just freaking weird.

Dear subconscious....  SHUT UP!

Infusion Confusion and Various Other Junk and Stuff

One step at a time.  How many times have I said that statement?  Well, I'm still in the process of figuring things out.  Or, at least the doctors are figuring things out.  Either way, though progress looks slow, it's still progress.  I'll take it.

Saw the hematologist this morning.  He ordered new labs to re-check my ferritin level so we can proceed with addressing the low iron/ferritin.  The levels have to be re-checked to confirm that the problem is still there, and if it is (which he suspects) he wants to address it with IV therapy (iron infusion).  It will take 2 treatments, one week apart.  Then once the treatments are done my ferritin/iron levels will be monitored over time to make sure it doesn't begin to drop again.  They won't have my lab results back until later this afternoon, and if it shows low ferritin again.. they'll make an appointment for the IV infusion.  Could be worse!  Some folks have to have an actual blood transfusion if it gets too bad!  Mine isn't that bad, thank goodness.

Pulmonary issues still to go.  Have to do the breathing test, which I'm assuming is because of the "Mild, scattered scarring" in my lungs.  Which I don't understand at all and try not to think about too much.  It's all still up in the air at the moment as to where my pulmonologist will take things.  We will see.  Just hoping the chronic cough I have is just the low iron.

Still in the wait-and-see phase.

Now... about those damn dreams again!.......