Post-Surgery Pain and the Damaging Effects of Indifference.

This is difficult.  Post-surgery for frozen shoulder and minor rotator cuff tear and I'm feeling like hell.    It will take a long time to recover and regain full use of my left arm, and dammit but it hurts to type.  I almost decided to do an audio blog but not enough privacy the last couple of days to do that.  So I'll make this just a quick check-in.

I'm not sleeping, mostly getting up several times a night to move my arm, elbow... to alleviate what pain I can.  This is often a tearful process.  I don't know when the big crash will come, but it will.  A human being simply can't withstand not sleeping like this.  On Wednesday, then on Saturday... things will change and hopefully for the better.

Sleeping on my side after this kind of surgery isn't the best idea, and it creates a world of pain, swelling to an unhealthy level in my arm.  This became the catalyst for ordering one of those Tempur Pedic beds.  NOT the cheapest thing in the world, but a very necessary one at this point as the healing process is going to take a long time.  So be it.  It's adjustable so I can support the back of my legs and have the back of the bed upright to manage sleeping without being on my side.  Saturday, a Laz-boy chair will arrive, and mostly for the same purpose.  As it stands now my options are to sit straight/upright or lay in a flat bed.  Both options mean pain and swelling.  But hey, those recliners are awesome and it's not like it won't be fully enjoyed way beyond the shoulder healing.

I suppose at this point I'm just rambling, but everything I am is consumed with the pain and trying to work past it without taking the powerful pain killers I was given.  The side effects sucks, and that means I'm making damn sure to take them sparingly.  But either way, my point is basically that I'll be dealing with this for a while and probably not making a lot of sense when I post.

There most likely won't be daily entries for a while, but I will try my best.

Post-surgery with all it's unbelievable pain has opened up a part of me that I really would rather leave closed, shut away, and ignored.  That echo chamber of the past and present merging in unsettling ways rumbles below the surface, always, making itself known at the darkest of hours and experiences.  I find myself unsettled---not just my circumstances or thoughts.  In the wee hours, especially when awakened by the almost ceaseless pain, true anxiety sets in and grips me.  Most of the time I can overcome it and get past it's frightening messages.  But then there are times when it takes hold and I find myself incredibly vulnerable and needing a strong, positive presence to jerk me back into a brighter reality.  Things is... I have no such strong, positive presence.  Yeah.
What to do with that.

As you guys know, indifference has been my companion.  T's indifference rears it's true self amidst the pain that really feels as if it's going to rip me apart.  You see, the first part of knowing how to squash pain naturally is to avoid stress at all costs, because stress destroy's the body's own ability to send much-needed pain killers to it's needed location.  Over time, especially in the presence of AI disease and fibromyalgia.... the breakdown of this mechanism is swift and brutal, leaving me without any natural defenses.  This sucks.

I've been brought to tears by the sheer intensity and duration of this pain, and the fibro is in a massive flare-up now, adding wide-spread, diffuse pain to that of the post-surgical.  While it's nothing to brag about, I will admit that I've been brought to my knees by the force of it all, crying so hard I felt as if my head would explode.  Late at night, when it's at its worst T will simply get up, stand there... and say nothing, do nothing, offer nothing.  I've had to tell him it's best he stay away rather than bring that indifference to the already miserable situation.

It is times like this that I long for "home," whatever and wherever that is.  No one to reach out to, to plead to, or talk to.  Not a parent, sibling, or best friend.  No one.  It's only when either by exhaustion or prescription intervention does the pain lessen a little, just enough for my mind to bring forth an image of a healthy, happy, joyful, fulfilled and pain-free me.  When I fall asleep... it sometimes carries me into dreaming, those thoughts.

My arm is in a lot of pain at the moment, so I'm going to sign off.  I hope that each day with willpower and physical therapy.. and even the weaker moments when I allow myself the prescription help to relieve the pain... maybe I'll get stronger, better.  I have 3 days of PT this coming week... and I pray it's the start to real recovery.

I need this pain to stop.  I really do.

Hopefully I can post tomorrow.

PS... I was amazed at how many page views Where Fireflies Dream received.... gave me a smile.

"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 my voice, music...

When I'm without my voice, music...

Nausea, diet, eating... who cares?

I'm trying my best today to touch base in all of my blogs.  Don't expect something scintillating or awe-inspiring, because I can promise you... that's not going to happen today.  I'm beyond sick with Prednisone withdrawal symptoms and am waiting for my dr to let me know if I can taper slower.. to ease the migraine headaches and nausea.  It's simply just too much to handle.

I've not decided if I'm going to continue the Shakeology.  And I LOVE Shakeology.  It's not about the cost or what it is or if it works (it does), but I'm unable to even stand at the counter long enough to make a shake at this point.  It will get better.

Basically, all weight loss efforts are put aside for the moment.  Maintaining my weight will be the goal, and achieving better health is the goal.  Once I'm at a point where my body isn't being torn down by illness or Pred withdrawal, I can focus more on weight loss.  At least at this time coming off the Pred has lowered my appetite and, as of today, obliterated it altogether.  I'm guessing what I'm going through is a necessary evil I will just have to endure for a while.

Remembering to be gentle with myself isn't always easy.

Somehow, some way, I will overcome all of this.

Weak. Tired....

It's been a few days, hasn't it?  Tapering off Prednisone is kicking my ass.  I'm so weak, cold, tired, dealing with nausea.  I'm about to go lay down for a bit, cover with a snuggly blanket and try my best to warm up and feel better; I really don't like that this has become my current 'Norm.'  When, oh when, will this start to improve?  When will I be able to re-join the land of the living again?

No answer...

I just can't sit here anymore...

I See What You Did There.

You're either part of the problem or part of the solution.  Anyone who's been in a relationship knows that if there's dysfunction there's damage.  In my case there's much damage to both my emotional state as well as my physical state.  It's not hard to understand the VAST difference between "Enabling" or "Supporting," and you have to pick a side eventually, right?  So when it comes to choosing which side you're on, use compassion, care, love when making such a choice, because you can easily break someone's will when you're pushing them in the wrong direction with every move or choice you make, with every word uttered, with every action.  At some point you have to ask yourself: "Who's side am I on?"

Let's hope your answer comes from a loving place, otherwise you've just embarked on a journey that could utterly destroy another human being from the inside-out.  Think I'm wrong?  Think again!  Here's how it happens....

Now, while I should be entering this in my blog "This Free Spirit," I'm beginning here.  Why?  Well, as some of you know I created this blog for talking about health and diet-related issues, and this particular entry deals with the emotional side of the success or ultimate failure of health goals when dealing with the lack of a support system and living with someone who is hell-bent on undermining my goals.  I guess I should copy this entry in the other blog as well, because it's incredibly important to know how closely related the issues of health and surroundings are.

Ever had one of 'those' friends who can't stand it when you do something to better yourself, your life, your health, your emotional wellbeing?  I think we all have had those people in our lives, right?  Sometimes it's a friend, other times it's an enemy, and there are times when, sadly, it's a loved one.  We give other people power over us, many times without realizing what we've done.  This is often the case with family, especially with a significant other such as a boyfriend, girlfriend, or spouse.  The damage inflicted by carelessness, indifference or overt sabotage is mind-blowing, and it's a serious undertaking to get oneself back on track when this happens, and especially if it continues to happen.

As you guys know by now.. I'm on Prednisone, which is KNOWN for massive edema (water weight gain), fat gain and redistribution.  Knowing what to omit or avoid in your diet while on prednisone is key to minimizing it's bad side effects.  Let's visit this for a moment, shall we?  And trust me, I'm going somewhere with this.

What to avoid, limit or omit while taking long-term, high dosages of Prednisone:

Salt.
Sugar.
Junk food.
Refined carbs.
Processed foods.
Fast food.

The list of what to avoid is pretty straight-up and not at all hard to understand when common sense is applied.  So if you're living with someone with dietary restrictions, and dietary restrictions are always due to a matter of great importance.  In my case there are several reasons ranging from avoiding the damaging effects of prednisone to having a heart condition and now high BP.

I've talked to T on many occasions in reference to what I have to do and not do to protect my health, and those talks have been over the better part of TWO YEARS now.  So this is not a new topic by any stretch of the imagination.  And yet he continues to do the things that he shouldn't do, and that is to bring home ALL of the items on the "Avoid" list, and he does so on a regular basis, citing he 'Forgot' or takes the stance that he just somehow just doesn't get this.  He has a 150 IQ, so how is it he  doesn't know or forgets?

Junk food, and TONS of it.  Processed food that now fills the shelves of the pantry.  If he cooks something (and these days he does most of it because I can't stand but for a few seconds, literally) he drowns the food in salt, mayo, or anything and everything that really isn't even remotely required.  And most of the time the food is pre-packaged crap that has little to no nutritional value.  He will literally forego cooking any vegetables, even the frozen kind you can pop in the microwave.  See, this is the part where being "Dangerously dependent" on another human being means risking your life and health.

One of the most horrid places to be in life is at the mercy of another.  It requires a great deal of trust to be at the mercy of someone, and when that someone does everything possible to undermine your health, your goals for better health, it becomes a dangerous, dangerous game.  I want nothing more than to have enough of my health and energy back where I'm SOLELY responsible for preparing my own meals.  The level of stress and anxiety that comes with being at T's mercy is through the roof, thus risking my health even more.  I have no idea what to do about this.

The shelves of the pantry, the inside of the fridge and freezer have mostly junk, processed crap that offers very little nutrition and a LOT of calories.

I talk and talk, I beg and plead, I send him links to read about the effects of eating that stuff to him... links he really just ignores as much as he ignores my text messages.  Who IS this guy??

Why do I bother talking to him?  Why do I bother sharing anything with him?  Why do I bother texting him, sending him emails, etc. when they go completely unnoticed?  He will read for an hour links and such people leave on his FB page, but he has NO clue what's going on with me unless I spoon-feed it to him.  I've grown weary of spoon-feeding him information and holding his hand to walk him through every...single...step of learning anything at all about what I'm dealing with.

Does he know anything about autoimmune hepatitis?  Not really.  What he knows is what I've told him, and I can't hold a seminar for him.  If he's not going to take the time or invest anything into learning, then why should I bother?  I've mostly gotten to a point where I don't--bother that is.

So what's really going on with T?  Well, given his habit of indifference.. there's really no telling if he's just being careless, or hell-bent on sabotage.  I don't believe it's the latter, but the former isn't any prettier nor particularly helpful.

It's time I sign off, complete a couple of other entries in my other blogs and wait for the Lasix to kick-in.  This means camping out in my room so I can be near a bathroom.  Lasix, btw, is a powerful prescription diuretic, so this is going to be fun.  NOT.

Wish me luck....

Too Weak to Care.

Well, that's only partially true.  I care about my life, my health, my well-being, but it isn't easy when there is absolutely no energy or strength to deal with, well.. difficulty.  Today is a day fraught with fatigue and weakness, and the inability to make sense out of everything that's going on.  In other words, I suppose, this is just a typical day.

"Typical" has lost its meaning for me.  Is "Typical" now a significantly decreased quality of life?  Is "Typical" interchangeable with "Normal" in a way that crushes all hope of feeling better?  Finding answers to these and other questions have proven to be nearly impossible, and in the wake of confusion, in the midst of medications not working or bringing too many bad side effects on-board, while switching from one medication to the next, as my health continues to deteriorate... where in this do I apply the words "Typical" or "Normal"?  I honestly can't figure out how to do that without disintegrating any and all hope for improvement.

What a crappy trade-off.

I'm just too tired to continue typing, but I hope tomorrow will be a better day...

Inevitable

What a word, huh?  Stating my case for better health is a daily routine, one in which I decide when I wake up just how far I'm going to let this AI situation screw with my life.  Oh, I make the decision all right, but the powers that be seem hell-bent on proving me wrong.  Raging against this doesn't work, yet it gives me an outlet to expel the toxic waste of bewilderment.  So be it.

Weight loss, prednisone, diet, eating, choosing, and living with the ultimate consequences provide a messy framework in which I have to live.  This machine controls everything, as many of you know, and we KNOW it controls us because of all the hype with body-image, health, well-being, and the next, best and greatest health craze, fad, or obsession.  You know it's true.  I know it's true.  All of us fall victim.

The good news is that we can choose how we go about reaching for better health.  MY choice is to abstain from meat, and dairy... go vegetarian or vegan.  As it turns out, the autoimmune hepatitis and medication necessary to bring and keep it in remission poses their own health concerns, one of them being low calcium, osteoporosis (to name just one).  I can't skip the dairy, because supplements DO NOT WORK in this case.  I eat dairy, I take supplements for calcium and vitamin D... and yet my calcium is testing below normal.  Now, this could possibly (hopefully) change as I'm weaned off the prednisone.  But only time will tell.  In the meantime, knowing calcium actually helps a person LOSE weight, I know that I'm still fighting an uphill battle.  Prednisone puts on weight NO MATTER WHAT YOU DO, lowers calcium in most cases, causes extreme water retention, lack of sleep/insomnia (which is vital to weight loss)... and so so much more.

At least I'm down another 10mg/day, so that's good news.  The Azathioprine is up to 150mg, which is supposed to help with symptoms from prednisone tapering, so there's that.  It's just a damn ugly process, is what it is, and the effects from using high dose/long term prednisone could last up to 2 years.  These realities become part of my journey to better health.

...Then there's the myositis situation.  WHAT am I to do with that?  Nothing, for now.  It's attempting to kick my ass just the same, though.

Ugh.

...I really wish T would finish putting the exercise bike together.  *sigh*

How the hell am I going to survive all this?.....

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.

This Timeline

After yesterday's major energy crash, today I find myself contemplating the things my mind wants to do that my body won't allow.  I didn't handle yesterday well at all, and I found myself wondering how much is going to get worse before it gets better, and just how am I to ride it out from day to day when even the simplest tasks are becoming glaringly impossible.  Where is this leading, when will it get better, and why can't I see my life's timeline anymore?

So I've ventured into another realm as of yesterday, and that is changing my diet radically.  The Prednisone weight will have to be put to the side at the moment, because I'm now having to deal with changing my diet so as not to be incredibly sick... let's just put it that way.  I'm now having to construct a pretty bland diet in order to stave off the turmoil that seems to have taken over my GI tract.  Yeah, I know.. not pretty.  It is what it is.

Bland chicken and rice, bananas, white toast (HATE white bread, btw), veggies, cooked carrots, etc.. is now going to become the norm until we find out how to get that $1,200 Rx.  We're trying a different route today, one that makes the dosage a little lower (have a copay card we're hoping will work with this dosage change).  Why on earth does this even have to happen?  Ugh.  Obamacare SUCKS and has messed up SO much with insurance.  Anyway, back to the topic at hand...

The bland diet will have to do until I can get that Rx.. which I needed at least a month ago.  The waiting continues....

On another note, I still feel 'dull' today, tired, brain-tired, lethargic... all fun and games when Azathioprine dosage is tripled.  And the fun begins with taking massive precautions to not get a cold or flu or whatever.  This is.. also just the way it is.  Welcome to my 'new normal.'

But that timeline that I used to be able to see, even if a bit blurry, is just gone.  I suppose this means I'm going to be living day to day until I feel a bit more like a human being, and I will continue to take steps in the right direction when I can.l

The exercise bike is partially put together... T doesn't care to use it so it's just at the back of his mind. But when the day comes that it's FINALLY assembled... I can at least begin exercising.  Unless my doctor feels that with active Myositis this is a bad idea.  Either way, even if I can exercise even a little everyday it should only benefit me, right?  And the eating thing... bland diet or not things have to be done differently.   And this is the only way I see my life right now, just getting from one moment to the next, one day to the next, one thing to the next.

...And who the hell knows what's next?  I sure don't.

Dammit.

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....

Oh but will you?

Undeniably, the mind, the spirit, and the body are ALL interconnected.  And if that sounds like a 'duh' statement, that's because it is.  Yet it still needs to be said for the sake of clarity, for me to point out the obvious that even I can see.  In such a chaotic and jumbled mess, being that of any relationship, the power this has over one's actual physical well-being is also undeniable, and yet sometimes I often look the other way and ignore the connections when I can't do anything about them at the time.  A little on the destructive side when you think about it, right?  Yet.. I'm human and prone to very human faults and so on.

Well okay, so do something about it, right?

Easier said than done.  Not impossible.  Just not easy.

My reaction to stress, anxiety, tension, etc. is just as human as it gets.  Some days are better than others, and most days I just go with it and trust that there's a reason I'm reacting to my circumstances in ways that aren't always best for me.  For the good of the better, the other person, the situation, and in complete line with seeking harmony I allow DISharmony to enter into my own personal space.  That's the cost, that's the price I pay, for wanting someone else to have the peace I rarely have myself.

And the echoes of impending broken promises do little to serve me.

Trust is a funny thing.  I trust the appearance of honesty and am often disappointed.  No wonder since I don't do much in the way of trying to understand if what I think I'm hearing or seeing is genuine.  I've done this in the past, extended trust where I shouldn't have.  But don't we all do this?  Either way, you'd think I'd learn, right?

I have learned in some ways but choose to allow that unrelenting romantic in me to believe that, like magic, all will be well and shining and happy and new.  Silly.  Absolutely silly.  Yet there it is in my current and past history.  Can one really polish a relationship like a silver spoon?  Maybe, but like that alluring and fickle metal... it will tarnish again if not tended to.

I don't want to spend the rest of my life polishing shit.  I mean, does that even make any sense?  No, it doesn't.  So why do I continue to do this?  Because I'm unhappy.  That's why.  Not that this is a permanent state, mind you, because all of us have the power to change our circumstances and reaction to them.  I keep telling myself that I can and will, and that little voice inside continues to ask... "Oh but will you?"

*shrugs*

As long as I don't give up, as long as I'm absolutely clear on what it is I need to be happy, healthy, and thrive... I'm not entirely lost to regaining the control I need in my life to make it different, better, mine.  I don't want to live someone else's life.  Do you?  Does anyone really?

Hello World...

I honestly didn't think I'd have anything left in me to post here today.  I did a bit of unloading in the other blogs and found that I really needed more caffein to carry on; I'm good with that.  With my cup of steamy nummieness sitting next to me I'm going to try and make some sense out of my out-of-control swinging appetite and the mess it threatens to put me in.

Prednisone.  I've now been on it roughly a month, still at 30mg at the moment and will be tapering down on Sunday.  Monday is when my blood work comes back and I know if it's safe to proceed to the next upward dosage of Azathioprine.  I will be going, I believe, from my current 50mg/day to 100mg/day.  The goal is 150mg/day.  Getting there will be interesting with all the side effects that come on at first and with each increase in dosage.  And then there's the high caution I'm in right now with regards to anything flu, cold or infectious anything at all.  My immune system is on overdrive, so suppressing it is critical.  With Prednisone AND Azathioprine on board my immune system is winding down to a steep low, which means I have to be extremely cautious with who I'm around.  I can't risk being sick.

My biggest worry--and I will get back to the diet/nutrition thing in a moment--is T.  He's not careful with using antibacterials on his hands, and yes.. he washes his hands but not to the extent he needs to now that he's living with someone who's immune system is purposely being suppressed.  He doesn't get it, and he forgets that he has consistently brought home colds and flu every year.  Regardless of his getting a flu shot, he gets the flu and brings it home.. every.. single.. year.  Colds as well.  He gets over the colds and flu fairly quickly, but as of right now if I'M to get a cold or the flu... it could end VERY badly, such as in pneumonia.

I feel like I have children at home again, always reminding him to please wash his hands when in public, or after going out in public, and especially if he's around someone who's sick.  I see him not doing this, and I remind him... constantly.  Why can't he remember himself?  Ugh.  smh.  I have to stop talking about this because it's extremely upsetting.

At any rate, the nausea that began yesterday continues, though not as bad.  It's a gross feeling in my stomach and back of the throat, and my taste buds are completely off at the moment.  I suppose this could be worked in my favor, considering.  But I'm not sure due to the fact that it seems my blood sugar drops, or does something, off and on during the day, prompting me to have a snack of some kind.

No shakeology again today either.  I love the taste of those shakes, especially since I had a tsp of orange extract to the chocolate, or the vanilla... it just tastes awesome.  But that nudge of caution is there just the same, to be careful of what I take in.  I have almond milk now, so I can do away with the dairy worry.  But still...

I'm no closer to any answers than I was a week ago, and my goals are clearly seen but out of reach due to T dragging his feet on important decisions requiring ACTUAL ACTION on his part.  Like the recumbent exercise bike for the back office.  The bike is chosen, he just has to order it.  And he's a procrastinator unlike any procrastinator I've EVER met.  OMG.. you've no idea.

So this morning I remind him about the exercise bike.  What does he say in response?... "I will have to measure it to see if it will fit in there."  HUH?  Seriously?  We spent last weekend moving a bookshelf from the office to the huge dining room, and a big doll cabinet (for my art) into my art room, emptying some boxes and moving the file cabinet, etc. to make room for that bike.  They don't come in different sizes, not when they're the high-quality ones for commercial use.  They come in ONE size, and knowing that size we made room for it.  So what's the deal?... Well, that one is easy to figure out...

You see, T isn't really much into anything if it's more than 4 or 5 inches outside his own skin.  He sees things from his perspective only, and he makes decisions based on HIS wants and needs and no one else's.  We were supposed to have ordered this bike MONTHS prior to moving, more than a year ago actually.  Now, it's a good thing that we didn't because it would've been a total bitch to move, but this is representative of to what degree he will put something off unless it only benefits HIM personally.

I'm told to listen to my body and don't push things too much, but I'm also told to try and incorporate some exercise into my life each and every day if possible, or as many times a week as possible.  T and I agreed that, for now, joining a gym would be far more costly in the long run, and it won't be nearly as effective because there will be days when I'm simply not up to driving to the gym and back. We discussed and agreed on an exercise bike for here at home, something even he could use.  Now he's hedging again as my health remains in the balance.

I'm really at a loss as to what to do.  He doesn't really keep me informed as to what's going on, decisions he makes, etc., which makes me feel like an outsider.  And.. I'm getting off-track here a bit, I know.  But his decisions are impacting my health, not HIS.

So while the wild switches between terrible nausea and raging prednisone hunger (which happens very little if at all the last couple of days), I'm left with only exercise to balance things out, and I need that bike to do it.  My stamina for standing at this time is at rock bottom...

What to do, what to do?  Wait, I guess, and see if he decides to ACT on anything.

I'm not holding my breath....

Shakeology day 1

What's there to say other than I drank my first shake today, replacing breakfast.  It's a step, and the shake is full of healthy goodies that will do my body good.  I have a coach, since I'm part of the ongoing plan Shakeology has, and I can ask her questions whenever I wish.  That's a good thing, and a definite plus.  I realize my situation isn't the norm, and I'm fighting against the prednisone weight gain, something I'd not gotten past since the last time I was on prednisone (for other reasons).  Being realistic about this means I know I'm doing something good for my body and spirit, even if my opponent (prednisone) is going to ultimately thwart any real weight loss goals at this time.  It's okay, because I'd rather be alive and NOT develop cirrhosis because my body image was more important than my body.

Exercise:  Given that my other opponent is the one I'm living with (T), that is yet another hurdle I have to clear.  One room designated as his study, as well as an exercise room, remains cluttered and not at all useful.  I've done what I personally could do, and the rest is up to him now.  What this means is week after week passing with excuse after excuse becoming the burnt offerings of an indifferent and uncaring individual who refuses to see how utterly important, necessary even, this is for my health and survival.

Today I'm putting my foot down, though.  My health can't wait.  This AI disease is a vengeful bitch, and I'm not about to allow it to take me over.  Exercise, eating right, having a peaceful inner spirit, calmness, all of that has to be in place to fight this.  Right now T is in the way.  Being blunt here, but he is absolutely in the way.

I've done all the footwork with finding a very good exercise bike to have at home.  I know how much space is needed in that office, and I bought a tv and blu-ray player to go in there to help pass the time as I exercise.  The cable is also ready for that tv as well.  And the room sits cluttered with boxes and crap that have yet to even be touched by T... much of it is his own stuff.  His lack of motivation and caring is crippling... to me.  HE is unencumbered by his own indifference, as he allows his own health to fall to the wayside.  I'm not going to do that to myself, and I'm completely done now with putting my own health aside for the happiness of another.  I have done that too long, and to my own detriment.

I'm on my own side now, in my own corner, standing up for myself, my health, my happiness.  If not me, then who?

Exactly.

Saturday

Tomorrow is Saturday, and the day my Shakeology is to arrive.  I have a plan, a fairly well thought out one as plans go, and I'm not mentally preparing to go this alone as no support network actually exists for me.  But the lack of a support system during these endeavors mustn't be the reason I don't try.

It's not like I can't do it on my own, because I can.  It's the motivation factor when things seem difficult or complicated, such is the case when you're taking steroids, that a good support system becomes your saving grace.  I've learned the hard way over the last several years that it's okay to need help, to want support during difficult times, and to not feel guilty about asking for that help.  It's easier now since I don't have those people in my life anymore who made me feel bad for wanting or needing emotional support during difficult times.

Over the course of each day I look for my motivation, signs of life if you will, and accept what it is that I find, and even what I don't find.  There will be bad days, and there will be good days, and every step forward, though painful, is still a step forward.  I can do this.

I.  Can. Do.  This.

My goals sometimes change by the day, and on occasion more than once in a day.  Rolling with the punches means adapting to anything new and finding a way to get right back up again, even if I've been soundly knocked on my ass.  The stressors are still here as well, and I try to overlook, ignore, and otherwise block out those things if I possibly can.

As I sit here and feel the pain return in my back, where my kidneys are, I'm evaluating how much I'll be able to do today.  It's different every day, and I accept that fact as simply my reality as it stands right now.  If I don't listen to my body I will pay the price---you guys have heard me say that a few times and, well, it's the absolute truth.  So what WILL I be able to accomplish today, other than the usual paces I put myself through no matter what?

I wish I had somewhere else to retreat to, somewhere that I can be absolutely free from the pressures here in my immediate environment.  Realistically, the only retreat right now is a set of Bose headphones and music; it's how I block out the world when I've simply had enough.

Yeah... I know I'm rambling and all over the place today.  Today?  Well, it's become 'situation, normal' for me right now, but it's just the way it is.  So be it. I'm going with it because I don't know what else to do.  However, my goal was to unload the chaos and focus on what's to come.  When the Shakeology stuff arrives on Saturday I will be mostly prepared... emotionally anyway.

Did ANY of this make ANY sense whatsoever?

*sigh*

PART 2: Priorities Revealed

Assuming you've read PART 1, I won't rehash the entire experience.  And I've spoken of my disappointment (for lack of a better word) in that T has the worst hierarchy of priorities that I've seen in a few years.  And in light of his absence during yesterday's procedure shows me more than ever where he is, who he is, and what he is.

When I was informed yesterday that the procedure I was having was more serious and carries far more risk than 'just' the biopsy I thought I was having, my radiologist asked me if I had anyone there with me.  The fact that I was alone in the section where I waited to be taken to my procedure didn't deter him from asking, because.. after all... I was the only patient there who didn't have anyone with them.

I told him T had dropped me off and went to work;  and he just looked at me for a moment, sat down, and began telling me (using straight-forward language) how "Tricky" the procedure I was going to have, how serious it was, and about the risks involved.  He said if I wanted to call T and give him an opportunity to come back to the hospital so he could be there as it's being done that they would hold off on performing the procedure until he arrived.  The radiologist left the room, and I called T...

T's reaction?  "Well, they have my contact information so that if anything happens they can call and I will come there."

I sat there for a split-second taking in his response, then was filled with the overwhelming need to hang up the phone, to NOT hear his voice at all.  And while this isn't the first time I've felt this reaction, it was by far the strongest I've felt.  I instantly went into self-preservation mode and wanted him nowhere near me.

The nurses, doctors, and other supportive medical staff were the only ones who made me feel like I wasn't completely alone.  I accepted that for what it was and allowed myself to just focus on what was about to happen and put T far, far out of my mind.  In fact, to be honest, he didn't enter my mind at all until at the end of recovery when I was told I was being released.

What does this mean?  That's not a question I'm asking myself, because I already know the answer.  I've been there, done that in the past with someone not giving a crap about my health, my well-being, and diminishing what I was going through or dealing with.  Has society really become a nation of zombies who have nothing but bricks for hearts?  I'm certainly beginning to think so.

I was supposed to go home and rest, not strain myself, no lifting, not even driving.  But T had other plans, ones that made HIS life ultimately easier.  Because that's what it all boils down to.  The aching in my neck and liver had begun, so I prayed that the medication I was given at the hospital would kick in soon and I at least wouldn't be in pain.

A heart cath is scheduled for the 19th of this month (November), and I was given a lab order to get blood work done prior to that day, as soon as possible.  T decided that since I was "Already out and about" that I should go to the lab to get the blood drawn.  I was painful, loopy, tired, and I wasn't at all up to walking through a parking garage and hospital in order to get blood drawn.  I just wanted to go home and rest.  That's all.  Just go home and rest.  But that wasn't about to happen.  T would have his way, and I would simply have to suck it up and deal with the unpleasantness.

This isn't the first time I've been with someone who lacks compassion, but at least I now know how to deal with it while protecting myself at the same time... thanks to a couple of past relationships.  At least I was smart enough to learn from the experiences, and while those lessons were necessary and taught me much, it doesn't mean I'm not feeling the effects of what's happening.

Deja vu.

I'm still processing everything, having just gone through this yesterday.  I've no real thoughts on the matter other than the obvious that one would expect to have after such.

I'll come to terms with things---perhaps when I feel stronger.

PART 2: Selfishness as a matter of convenience (Where's the respect??)

I'm unimpressed.  I'm completely unimpressed by T, and by the way most guys treat women.  In my particular case, the disrespect is dehumanizing, demoralizing, belittling, and disappointing beyond anything I've known.  It's not just this relationship, but in the past as well.  My choices have NOT been the greatest, and my guess it's because I'm trusting and take people at face-value.  This is NOT a good thing.  At all.

As of yesterday a new low has been established, and I'm in no position to do anything about it.  Thus is the case when dealing with control freaks who refuse to see that they're actions are completely selfish and self-serving.  DON'T VOLUNTEER to do something for someone if you're only going to use it to gain control over that person!  DAMN!  How hard is that to understand?

All my doctor's appointments are now between my doctors and T.  Why?  Because ALL appointments aren't about what's necessary, or needed, or critical, or about doing tests etc in a 'timely fashion.'  Nope.  NOW my appointments are about what's convenient for T.  It's about what he does or does not feel like doing, what works with his schedule (he's been told he needs to use a lot of his leave or lose it), and none of it has a thing to do with... me, you know, the actual patient.

Yesterday was a disaster, stressful beyond reason, frustrating in that I'm basically told I no longer have any control on when or what time I get an appointment.  *sigh*  One major symptom of late makes it dangerous for me to drive much beyond a few miles of my house.  Dizziness/vertigo doesn't exactly translate into "safe driving."  So I'm stuck for the time being, screwed beyond reason, because I have to wait for T to decide when I can see my ENT or Neurologist regarding the severe tinnitus, vertigo and dizziness that's come on over the past couple of weeks.  I sit.  And I wait.  For HIM to decide when it's a good time to see the doctor about this.

Why the F***K am I here????!!!!  Being here is unhealthy, both physically and emotionally.  It's detrimental to my health and well-being, and the inner workings of living in this house with T has destroyed my quality of life.

Now, some of you know my recent history with relationships and know what I've gone through.  I also know what you're most likely going to say to me and expect that email eventually.  It's okay.  Send it on.  Maybe I need to hear that.. 'again.' ;)  Either way, you're most likely seeing something familiar in all of what I'm writing, in which case I will say... I do too.

More later.  I promise... the flood gates are open now...

Finally.

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...

In the wake of a 12 hour night

Insomnia is the usual case for me, especially over the past year.  Very difficult to fall asleep, and even more difficult waking up.  It's not that I don't wake up, it's more that I feel like I've been hit by a truck when I do.  This has been destroying my quality of life for some time now.  And last night was an unusual event as I slept for about 12 hours.  I do have to say, however, that it wasn't an unbroken sleep.  But even if within that broken 12 hours I managed to get 11 hours, I can feel a bit of change today.  Hasn't resolved everything, but I feel somewhat different.  This has to be brought under control.  And this... effects EVERYTHING about my life.  EVERYTHING.

Sometimes, after I have a fairly decent night's sleep I wake up feeling odd, too aware of everything.  I'm not sure this is a good thing, to tell you the truth.  In fact, it's quite unsettling.  In the fog of sleep deprivation and other limiting health issues it's almost a Godsend to have reality blurred somewhat.  I know it sounds crazy, but you don't know my life.. not really.  My 'life' hovers on the edges of that blurred reality for the most part, and when the lines begin to sharpen around what I've been ignoring and the stark reality of what actually IS...my anxiety builds.  Why?  Well, isn't it obvious?  Frankly put---I don't like my reality.

Changing my reality:

I've not given up.  I'm searching for answers.  If those answers are WITHIN me, then those things are buried DEEP, because I can't seem to access them at all.  So what's next?  Yeah, you hear that a lot here, don't you?  If I had the answers to that I'd already being doing it, trust me.

Still, I have to compartmentalize everything these days just so I can deal; I think we all pretty much do this.  I guess the trick is to not completely seal everything off.  *shrugs*

Healing.  Healing is absolutely NECESSARY to getting back to myself again.  I have to heal in mind, body, and spirit.  No matter what, I will have no quality of life if I don't heal.  So how do I do that?  How do I heal while in a place that isn't conducive to healing?  THAT is the million dollar question.

I'm stuck:

What do I do?  Where do I go?  How do I start?  When do I start?  How long will it take?  Which path is right?  Will I find my footing?

There isn't a single soul around that I can talk to about this.  The few people I have to talk to I can't open up to.  It's difficult to talk to someone who's not listening.

There's nothing that instills mistrust in another person than trying to talk to someone about something critical, important and having them shrug it off as if it's insignificant.  I'm not a fool, and I can tell when someone really could give a shit less.  All it takes is once, and I won't open up to that person again...

"Sorry to hear that.  Hope you feel better soon."  Wow.  Can't tell you how much this one puts me off.

Platitudes are not only insulting and hurtful to me, but they make you look shallow and self-absorbed.  Seriously.

It's been said that we live in a 'ME ME ME' era, and I have to agree.  Opening up to another human being, wether a friend or relative, is almost pointless these days.  At least it's been this way for me.  And...this is why I have blogs.  Opening up to people usually just brings on the deadpan platitudes that actually make me feel worse.

Does anyone in this country give a shit about anything at all?

Even T is deadpan, self-absorbed to the point of not seeing or hearing or feeling anything about anyone around him.  Most of all me.  But I'm adjusting to that, which means... my feelings toward him are changing radically, and now... irreversibly.  He was warned about this some time back, so he knew the risk of maintaining the status-quo.  Once I accepted that I have to focus on myself in order to heal, to get well, to reach for a better quality of life, to be happy, hopeful, and vibrant... things became both easier and more difficult at the same time.  I never expected this to be easy.

Back to sleep...

My dreams tell all.  I tend to dream a lot these days, and I dream of a reality that isn't, or at least used to be, MY reality.  I'm never tired, sick, painful, or alone in my dreams.  When I sleep.. I'm exactly where I want to be in my waking life.  I know what it is that I want, and my subconscious is showing me every single night how vastly WRONG my actual life is.  Many times I absolutely hate waking up.

It's going to be a long process, reaching my goals, and I will have to remind myself each and every day what those goals are.  I will also have to do everything in my power not to give up, because what happens in the reality of my life makes me want to give up.  This isn't a good thing.  At all.

So, what now?

I am...

I am a person, a human, a woman, someone with feelings, thoughts, hopes, dreams, intelligence, passion, and a heart.  I feel, breathe, think, love, hope, hurt, give, and bleed.  I am sensitive, patient, empathetic, sympathetic, spiritual, and I feel deeply what is sent my way.  My pain is real.  My joy is real.  My love is real.

I am real.

Because I am, I feel.  Because I think, I feel.  Because I breathe, I feel.  Because I have a soul, I feel.  And what I feel is exactly everything.  When you speak, I feel your words, and when you don't, I feel that as well.

I hear you when you're not talking.  I see you when you're not there.  My mind, soul, spirit and heart remembers everything.  I feel everything you've said, done, not said and not done, and it has changed parts of me, of who I am.  But I will find a way and strive each and every day to heal, to restore all that I once was.

The parts of me you broke with your words and actions, or inactions, are still there.  Every shattered part of me holds on and waits to be healed.

I am healing, though much slower than I'd hoped.

Inside there are are pieces that aren't mine at all but harmful remnants of an experience that threatened to change me completely, insidious shrapnel of an emotional war I never wanted to be a part of.

I'm passed the part where I forgive myself for willingly allowing myself to think everything I experienced was okay.  I apologized for allowing so much harm to be done as I did nothing.  I no longer ask myself 'why' I didn't exit much sooner than I did.  I've come to the conclusion that some things I will most likely never come to terms with, maybe not even completely heal from.  I can't say goodbye or get closure from someone who basically didn't actually exist.  Realizing that everything you thought you knew about someone wasn't real is beyond difficult, because there is no one to say goodbye to when the relationship ends.

I will heal.  Eventually I will be fully me again.  But there is much to sort out even now.  The wound opens time and time again because closure wasn't possible, and I work to forgive, repeatedly repair the damage that never seems to fully heal.

Anger is part of the process of letting go.  In the stages of loss, which happens with breakups, one must absolutely feel every stage.  But who am I to be angry at, sad over, etc?  The person I fell in love with, in the end, revealed so much about themselves as their guard went down that I didn't even recognize them.  At all.  I was allowed to see what they wanted me to see early-on, and I fell in love with THAT person, a person who disappeared completely and was replaced by.... a stranger.  I did not recognize that person and never saw the one I'd fallen in love with again.  So when things finally ended, there I was, wondering who I was supposed to say goodbye to.

More on this later as it's bigger than I'm able to speak about or even deal with in-short.

Is this the beginning of getting back to me again?