Pushing ahead....

Still going through shoulder recover, and will be for some time.  I've made another video so I can continue to keep up here.  Thanks for visiting...

:)

What If.....

What if I said I wanted to pour my heart and soul out to you?  What if I could, even for a very short time, find such trust that nothing, absolutely nothing would be off limits in what I could share?  What if I didn't hold back, didn't keep my entire heart's secrets walled off from the rest of me, and expose every one in such detail that it took your breath away?  What if... I told you a secret you'd never forget, no matter how hard you tried?

What if you could be surprised at the stories I hold inside?

What if I told you that I've never trusted a soul 100% in my life but that I'm willing to now?

What would you ask me if you could ask me anything?

What if I told you that you'd be surprised at who I'm talking to, and would you want it to be you?

"....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....

All alone you felt (All alone you felt)

Since the angels brought, you, down

Fly, too, high, now, you, have fallen perfectly

Certainly you'll see (Certainly you'll see)

[You] have a special purpose

To share

All, your, dreams, have, come, together perfectly

Could you open your mind

And see the reason

You've chosen lessons of pain

For a warrior's heart

Truth and inspiration

Reminds us to not be afraid

They don't understand (They don't understand)

Though they call themselves, your, friend

Fate, has, brought, you, back, to find your destiny

Should you travel deep (Should you travel deep)

Hear the voices, light, the, way

Souls, .... and, reveal your destiny

Could you open your mind

And see the reason

You've chosen lessons of pain

For a warrior's heart

Truth and inspiration

Reminds us to not be afraid

*instrumental*

Wipe your tears

It's all right

And revel yourself in the truth

You're the strongest heart

All these tears

All these nights lead down a road that seems like a maze yet

All you encounter will make sense in time

Could you open your mind

And see the reason?

You've chosen lessons of pain

For a warrior's heart

Truth and inspiration

Reminds us to not be afraid

Could you open your mind

And see the reason

You've chosen lessons of pain

For a warrior's heart

Truth and inspiration

Reminds us to not be afraid

Could you open your mind

And see the reason

You've chosen lessons of pain

For a warrior's heart

Truth and inspiration

Reminds us to not be afraid

The elusive network of support.

I've been told throughout my life it's necessary, even vital to success when fighting against that which challenges.

Those challenges many of us face, be it losing weight, extracting oneself from a bad relationship, dealing with a break up or death of a loved one, financial hardship, health issues--I've been told that you simply can't do it alone.

Despite what I'm told, I'm testing that theory as we speak.

I don't need anyone to hold my hand all of the time, but when my resolve slips, my confidence wanes beneath unrelenting weakness and pain of which there's been no tangible hope of it ending soon, it would be nice to have someone who gives a crap present. And I'm not talking about someone being in the same room, but someone who is  Actually present.  Finding someone who can be actually present is a lot harder than it sounds.  At least in my experience.

I've dealt with people who say they love me but choose to be abusive and/or simply not there emotionally.  Trust me when I say this isn't my first rodeo.  And I can tell the difference between if someone is 'absent' with malice or not.  In my current situation there isn't any malice, but it doesn't feel a lot different from the situations I've been in where this was the case.

If you've not read the post below you probably won't understand what I'm about to say...

I've been so sick over the past week that I've been bedridden until today.  The why's and wherefores of the situation is in the post below.  But I'm going to be very blunt here, and at the risk of sounding like a weakling--which is far different from being physically weak, btw.  Still, my experiences over the past week have both saddened and introduced an anxiety about my vulnerability in the life I'm in at the moment.

Bedridden, for me, means sitting up for any length of time is impossible, that standing and walking are feats that make me feel like I've just done something magical.  Standing means my legs shaking so badly that I'm not sure I'll make to to whatever destination I'm heading towards, even if it's 6-10 ft away.  Sitting up, as well as standing and walking, means I feel a wave of extreme weakness wash over me from the top down, leaving an equally intense aching in its place.  This means that over the past several days I don't eat unless someone can bring me something.

The lack of appetite and early satiety, at least, has helped make this vulnerability easier to bear, though my body does send uncomfortable signals that I need nutrition.  I've also lost my taste for water and have to force myself to drink it.  Even with small sips my stomach revolts with waves of nausea.

T worked from home a couple of days this week and was home, of course, over the weekend.  I've never felt so much like an inconvenience.  But the worst of is is when I really, really needed help with something and he just was indifferent, if he heard me at all.  This isn't going to be easy to say, but I will for clarity here... at one point I was getting a bad headache with nausea which told me I needed to eat something.  I'd had a small container of yogurt and a banana (had to force the yogurt down because I felt full after a couple of bites), but it had been about 10 hours since I'd eaten when the sick filling came over me.  I asked T to please bring me something, anything, a banana... whatever... just to stave off the nausea and headache.  He was too busy, he said.  It was about an hour later when I finally ate something, and I had to eat it sitting on the side of the bed because I didn't have the strength to make it to the dining room.  I spent a few days, up until yesterday, having to take whatever food I could get down in the bedroom where I'm sleeping due to T's snoring.  Can't sleep at all in the same room with him.  Anyway....

In the hour it took to get a banana to eat I laid in bed contemplating what I was going through and wondering what it would be like if I became seriously ill and had to rely on him to take care of me until I recovered.  It didn't take long before I was consumed with homesickness, a longing for my simple life in my little apartment in Mobile.  This isn't the first time I'd had this feeling, btw, but this was by far the most intense.

I learned that I have to find a way to disconnect from my situation while still IN my situation.  I've done it before, but I was a LOT healthier then.  How do I do this?  That's the million dollar question, isn't it?

The Truth.

The world has gone mad.  Or more specifically, America has gone mad.  In all my life I've never seen such division, such bitter hatred on the left, such utter madness.  And it is madness.  I don't watch the news anymore because it's simply the most depressing thing ever, honestly.  We all know the media lies, stretches truth, etc., but recently trusting anything put out by the media is just buying into fiction.  And to that I say--open a book and read, because there's more truth in a Stephen King novel than there is on CNN, MSNBC, FOX, etc.  If you're going to waste time, might as well have fun, and there's nothing fun about what's going on in the media.  And worse, are those buying into the garbage.

Whatever happened to the truth?  What's happened to people that they're SO willing to except, embrace, and repeat lies that have been repeatedly debunked?  Rhetorical question, because we all know that people will ultimately believe what they want to believe and there's nothing anyone can do to change that.  Once sucked into the gaping black abyss of a lie--it takes a tremendous effort to find your way out.

As for me, I choose not to buy into the garbage.

But I'm sad to see how much hatred there is in our country, hatred born of the dirty side of government, of politics, and of greed.

I'm not sure at this point that any one thing or person or event could turn it around.  People are to blame for their own thoughts and actions.  They make the choices, and no one is twisting their arm.

It's just so tiresome.

We don't have to agree with one another to be civil.  We don't have to think alike or look alike to be civil.  We don't even have to like each other in order to respect one another.  All social graces, all levels or morality and decorum can be maintained under almost all circumstances if we make the choice to rise above it all and do the right thing.

I have no idea what the outcome of this election will be, nor do I even pretend to think that we're all going to end up changed by the end of it all.  We're already changed.  All we can do now is dig our heels in and hold our ground despite the odds.  I'm ready to do that, and I know a lot of others are as well.

We'll take things day by day like anyone else, but none of us are willing to be bullied by the 'powers that be' or radical domestic terrorist groups.

They can try like hell to stop us.  But here's the deal: We're not going anywhere.

Deal with it.

When Past Experiences Fade.

What I've found is that our past really does change us.  It doesn't change WHO we are, per se, but it certainly changes how we think and how we approach familiar, yet uncomfortable, situations in the future.  Once the damage is done it's done.  We can seek counseling, religion, friends or family to aid in the healing process, but we can't change the scars that remain once the healing is complete.  And this is IF the healing is complete.  Some of us never quite reach that level of healing, unfortunately.

I'm not going to say I'll never heal from my past unfortunate experiences, and I totally accept the fact that the scars are there for a reason; We can't wish or hope or anger them away.  And why would we?

For me, the damage left by awful experiences of past relationships aren't always apparent or noticeable.  With each day's accomplishments and trials the past may be readily in focus or blurred beyond recognition.  My mind only calls up what it needs, or what it believes is relevant.  Is it always actually relevant?  Of course not, so it's up to me to determine what's what and act accordingly.  For example, being disrespected usually brings past experiences readily to the forefront.  It is what it is.  And during those times when the ugly parts of the past fades... I don't question the opacity of the lens I'm viewing through but accept the gift and move through my day.

The past doesn't always color my world, and I'll take the blurry days over the stark reality of the scars left from an emotionally-violent past.  Today is one of those blurry days, and I'm grateful for that little gift.  But it doesn't mean I've forgotten.  There isn't any way I can forget.

I remember because of the scars.  I remember because I'm not lost on the value of the lesson.  I remember because those memories, painful as they are, keep me in-check much like the painful burn of a flame that makes us pull back before too much harm is done.  I remember because I'm supposed to.

The sum of me, all the parts that make up the whole, is only whole when I'm aware.  I can't bury or ignore those dark experiences that hurt and changed me no more than I can bury or ignore those great experiences that made my spirit soar to amazing heights, that inspired me.  Acceptance is healing, and it's a place I can thrive in.

It's time for me to sign off.  I'm cold, tired, and it's time to just heal a little while.....

PART II: Today is not the best day for that

Having set the stage for my life once again I'm faced with difficult decisions, and in the midst of a health crisis of sorts.  Which reminds me, I didn't mention in my last entry that I crashed pretty hard while tapering down the prednisone, called my GI doctor.. who had me step up the dosage back to 30mg/day from my lowest taper.. which was 10mg.  ALL those awful symptoms returned with a vengeance, and other GI issues became much worse.  I couldn't handle it anymore.  So my appointment on the 28th has been moved to Monday, tomorrow, the 10th, and he wants me to be there at 7:15am so I can be the first patient.  There was mention of possibly adding Imuran, the a immunosuppressant.  We'll see what he says when I get there.  But I'll tell you, that first night he told me to up the dosage again.. I did to 25mg (so as not to take too high of a dose at bedtime) and woke feeling better the next morning.  And yesterday and today.. I can really tell the difference.  Doc says that knowing where symptoms begin returning tells him where my maintenance dose will be.

So there's that.

When I felt as if my body were made of lead the other day, as my eyes and face began swelling again, as I felt that hint of health fading rapidly, I realized what trouble I was really in.  I mean, when you're at the whim of whatever ails your body to that degree every move you make becomes a reality check.  Every single decision I make is a reality check.  My body reminds me every single day that I have to make my decisions wisely and with my own best interests in mind.

That's something that's long overdue, btw.

So much still going on with my health, and the unresolved and worsening symptoms will, or should be addressed tomorrow morning at my appointment.  Eventually I will have a handle on this thing, and we're at least finally getting to the bottom of what's wrong.  Armed with that knowledge I can begin to take control of my life again, and in a way that promotes a healthier, happier me.

Today is not the best day for that

Sunday.  End of the week.  The last chance to get anything done.  I totally understand sleeping in, though my body won't allow me to do that.  I understand T wanting to sleep in.  Totally get it.  My only thought in that is: What will he do with the waking time?  We're not exactly in 'normal circumstances' mode right now, as we are still surrounded by boxes and clutter from things that need to be either put away, assembled and put away, or just organized and cleaned out.  I did most of that myself during the first week on Prednisone, and I'm afraid I actually overdid things because, honestly, I didn't know how much energy I would have from one day to the next, and I don't have any help here but for T.  And truly.. he's very little help.

My son, the one who lives closest to me, is till roughly about 4 hours drive away.  Not really close in the great scheme of things.  But he's offered to come here and help.  The trouble I have with that is that he'd have to take off work in order to do that, and have an 8hr round trip drive.  And just to do things that T can actually do himself.  Oh, there are other alternatives, but T won't allow it.  This is also another issue I have with this situation---not being able to make a decision on my own and actually act upon it.  I'm really rather tired of being treated like a child, a slave, and am so very close to just saying... F it all.

I do what I can with what my body and energy will allow.  I push, and I push, and I keep pushing long-past what I know I should really be doing.  It isn't enough, though.  For all that I can do, the remaining tasks are out of my reach at this time.  So who's going to do this?

I offered to look online, call around, and find a "handyman" who can do these relatively simple tasks. I can't even tell you how tired I am of walking around boxes that have been sitting here for nearly a month now.  It doesn't make sense.  It just doesn't make sense.  Except in that I know T for what he is, and he's a guy who could literally care less if the house he lives in falls apart around him.  How do I know this?  Well, for starters, I remember the first time I saw his house, the one he lived in for 10 years.  The disarray, to say the least, was uncomfortable, and it (for all practical purposes) looked like an abandoned house inside as NOTHING was ever cleaned.  I refused to take a shower at his house, because I felt I would be clean if I stayed OUT of those bathrooms/showers.  Dear God, you've no idea how bad it was.

I felt sorry for him at the time, and I even tried cleaning it up myself FOR him.  It was an IMPOSSIBLE task.  I spent hours trying to scrub stuff that simply would not come off.  And I'm telling you, that was just in the bathtub and shower.  And the smell...

He told me that his ex wife was to blame.  He said she made a mess out of everything and wouldn't clean the house, etc., etc.  However, he'd been divorced and living away from her for YEARS.  So what about cleaning all that up after she left???  How about hiring someone to come in and get things right so you don't live in filth?  I bought the story.  Stupid, stupid, stupid me. Why the hell do I insist on trusting people, I've no idea, as history repeats itself in the guys I end up with??

So here I am, 2nd anniversary just yesterday, and I look at the pattern of what is and what is not done in this house, and the last one we lived in, and I see that exact pattern in him.  I KNOW there are guys out there that AREN'T looking for a mother, you know.. someone to clean up after them etc.  Because I've met men who took great pride in what they have, what they own, and they respected their investments, be it home or car or belongings of any kind.  Oh, but there've been a couple I've been with who take everything they have for granted and let it fall to waste... claiming.. they don't take their stuff for granted.  Right.  Proof is in the pudding, sir.

In the midst of this clutter I long for a better life.  How can I not?  I'm not a filthy person, and I despise clutter.  I grew up with a mother who was a hoarder, and I hated that even as a child. Why would I be okay with it as an adult?  T isn't really a hoarder, though there are a few aspects of what he does that hint at the tendency.  Keeping crap that he says he's going to sell one day but never sells anything.  Keeping things that he will never ever use, claiming he might use them one day.  And as it piles up and there's no room for anything... that's where the tendency or pre-disposition shows itself clearly.  The only difference is that he doesn't buy new things and keep them.

I'm about functionality.  Yes, and having lovely surroundings is part of who I am as well, part of being a woman really.  At least most women.  It's that nesting thing.  I like that about me, and I'm not willing to change that at all.  No matter what you have or don't have you can still make things nice, clean, livable, and make it look and feel like home.  If you're living with someone who could care less about that, then you may find yourself struggling on a daily basis to maintain that feeling.  And THAT is where I am right now.

We moved here because I needed peace, serenity, to get out of a racket and noise-filled city.  I didn't dislike our neighbors, except for the ones we knew were selling drugs. They were eventually evicted anyway.  But the noise, and looking out the front window to see anything but inspiring sites.  It was grating on my nerves.  T, however, could live anywhere in any neighborhood and be okay with it.  That's what it looks like when someone doesn't give a shit.  I'm so opposite of that, though, and it's causing a great deal of unrest and turmoil in my life.  And don't even get me started on the anxiety.

What did I discover after the move?  I discovered that it's still insanely difficult to find my peace, and it seems like the only time I actually ever have it is when I'm alone, or when I'm laying in bed at night.  Oh, and I guess I didn't mention we're sleeping in separate rooms because T snores like a freight train and I was getting absolutely NO sleep whatsoever.  I'm sorry, but his not wanting to sleep by himself is lower on the totem pole than my declining health.  I was firmly warned by my GI specialist, my lung doctor, and even my primary care physician... that if I kept sleeping minimally that it would have dire effects on my heart, my lungs, and my overall health.  And now that I know I'm dealing with at least one autoimmune disease, I can't risk the triggers such as physical and emotional stress, especially while on prednisone.

So what does it all mean, then?  Where do I go from here?  Can I even FIX anything wrong here?

PART II of this will address precisely where I am at the moment, choices I have to make, and so on....

Looking for that Anchor

I'm not completely unaware of my surroundings.  Everything around me lacks technicolor, true, but I'm still aware of what's here, and what's not here.  Having the awareness only changes how I approach any given task, every thought, every choice I have to make day to day.  Once I forego the usual self-talk and begin to listen to the silence the scenery changes a little.  But just a little.

Indifference continues to be the backdrop to life with T.  In a strange way, I've come about to a place where I'm more than okay with this.  He isn't going anywhere.  He's happy in his strange bliss.  He panics if I try to talk to him about how things really are, how I feel, what he's doing and how it affects my life in significant ways, and not good ways.  He panics in the sense that he isn't unhappy.  Weird, to me, how one person can be so unhappy while the other is... well, happy.  How does that even work?

Okay.  So I'm not going anywhere.  I do have times where I would give anything to be free of all of this.  And then there are times I'm happy.  Yes, yes.. it's not like I'm miserable 24/7 or anything.  Far from it.  I deal mostly with the AIH symptoms, the medication symptoms and withdrawal symptoms and all that involves.  But that's not what I'm talking about here.

I'm adrift and looking for an anchor to secure me in place.  I don't have my bearings right now.

So with 5% power left on this machine I'm leaving the conversation for another shot at it later, maybe when my thoughts are a little more cohesive.

....more coffee.  Yes, that's what I need right now.  More coffee....

I'll be back later, and hopefully I will make more sense than I have now. smh.

Coffee & Contemplation

Okay, okay.. so maybe there's a breakfast burrito involved...

I need my time to myself this morning.  T has a short day today, and while I love the guy... he's not the easiest person to be around, as you guys already know if you've read my other posts.  That being said, I'm attempting to get myself in the right frame of mind for what I know is to come over the next few days.  I'm happy that he gets these paid 4 day holiday weekends--he deserves it.  But when he's home it creates a lot of work, tension, anxiety in me because of his lack of drive, ambition, dedication... to getting ANYTHING done at home.  There's just so much to be done, and none of it's getting done unless I do it.  And let's face it, these days.. I can't do all that much. When I DO... I OVERDO, and it sets me back for days on end when I have to pick up the slack.

I need time to heal.  I've asked for time to heal.  Not that I'm sitting on my ass, mind you, because all I do is unpack, organize, arrange, put away, clean up, shuffle stuff about, deal with deliveries, moving boxes, and then stressing over the bigger jobs that are beyond me right now.  Things like a very large yard that needs serious attention, hiring someone to move the mountain of boxes from moving and deliveries (we're in a location where the city doesn't do this).  I feel right now as if the walls are closing in...

I need the walls to open up, which is why we moved here.  The view is spectacular, the neighborhood private and quiet.  And yet... inside this house there is anxiety.  For me anyway.  T could really care less about anything but his work.  All of his attention and diligence is put forth at work (desk job, btw, as he's a senior programmer and quality control expert), so when he gets home... bam!  That inner switch of his goes straight to auto-pilot.

If I were healthy and energetic I would simply assume the role of 'everything' here at home.  But I honestly don't know how long I could keep that up and be happy with my life.  I want a partner in life, not someone who uses me as a maid, mom, and general 'handy man' type girl.  I can't do it.  It's not me.  We're not in a Leave it to Beaver episode, and I won't assume the role of June Cleaver, who.. by the way was respected and treated well by her husband.  Given that, I am left to make the decision to develop my own life fully and totally outside of this relationship until it becomes more like an actual relationship and one based on trust and respect.

Bottom line here is that I don't trust anyone who doesn't treat me with respect.

In the meantime I keep on keepin' on and will continue to do so until I feel it's taking more of me and my life, happiness, and sanity.  Then, and only then will I make the final decision to cut myself free, to spend my wings, to gain my dignity and wings back again.

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...