I want to be awed by life.

Maybe for just a moment I can step away from my life how it is and explore what it is that I want.  I don't dwell in unicorn land, but I do entertain on occasion of what I'd like to do, what I want to experience.  I honestly need to be awed by life, by living, and I want to have something to look forward to on a regular basis.  Somehow, someway, I have to make this happen.

My plans include the possibility of a short vacation (I've never been on vacation), a weekend somewhere, anywhere, to see, feel, smell, hear, experience something different.  Where?  Hell if I know, and it's not all that important right at this moment, to tell you the truth.  The idea is to EXPERIENCE LIFE.  Not much to ask, I don't think.

So..... how do I make this happen?

I just do.

That's it.

It's a moral imperative.

Part II: Christmas, and the ghosts of relationships past.

...as promised.

PART I: Christmas, and the ghosts of relationships past.

Self-explanatory, yes?

Too soon?

Naaaaah.  Not for me.

Creative chaos.

I'm way behind getting these uploaded, so please bear with me...

So, better late than never...

For those of you who said you preferred the audio blog entries.  Was done a couple of days ago, so I will try to make another one sometime Thursday when I have free time. :)

Still staying tuned???

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

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

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

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

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

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

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

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

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

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

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

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

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

What I Want.

I guess I got most of the rant out of my system in my other blog, so I'm going to try and avoid going there again here.  I can't promise anything except that I'll try.  I've seldom allowed myself to talk about what I want, or what I need.  There are reasons for that, but they're not important at the moment.  Either way, maybe it's time....

Many times I lay in bed at night listening to music and remembering how I used to feel when I was healthy and mostly pain-free.  It's not an easy task, remembering when I didn't feel pain 24/7.  But it's necessary, even critical that I not lose that memory of feeling well, healthy, at ease, calm, and... good.  That's my task each night as I lay there in the darkness.  I don't mind revisiting, but it's getting more difficult as the pain gets in the way.  So what do I think about, dream about?  Well, it's not as important what I think or dream about but actually what I ABSOLUTELY NEED to thrive.  And on those I'm very clear.

I need peace:  Peace is easy, imho.  To me, peace is the result of respecting the environment around you and everything in it.  It's not complicated to understand that a person's environment deeply affects their lives---and the health of those who live in that environment.  Having a clean house is important to me.  NO, I'm not talking about a sterile environment where a few specks of dust sends me over the edge.  I have a dog and have had pets most of my life, so I can't afford to be picky given that.  Basset Hounds shed, at times drool, and... well, that's life with a dog. :)  I wouldn't change it for the world.  However, there are some things that should be done on a regular basis for me to be comfortable and happy in the confines of whatever space I'm living in.  Just one word: clean.  that word is easy to understand, and easy to accomplish.

So how is it that 'clean' translates to 'peaceful' to me?  Well, it just does.  I'm a clean person and find a clean environment very comfortable, very peaceful.  It's not the only thing that instills peace, but it's a damn good start.

Picking up after oneself.  If you make a mess, clean it up.  Don't create messes, especially necessary ones.  And don't rely on other people in the house to do it for you.  Easy.  I raised my kids and don't feel like cleaning up after an adult one, meaning... my other half.

I need more than tv to 'live' my life!  T wants to sit in front of a tv during every spare moment of his life.  As for me, I can't do that.  Sometimes, yes, of course.  But not every spare moment.

I need to EXPERIENCE LIFE!  Sitting at home every spare moment waiting for 'some day' to come along, or 'retirement' to usher in actual living isn't my thing.  It will never, ever be.  I'm very sick right now, more than I've let on here, but... even with that my entire spirit cries out for EXPERIENCE.  I want beauty in my life, to experience something else, anything else than the chronic dullery of the status quo.  I want to see places here in the US I've not seen, to be awed, inspired, and fulfilled.  I want to take my camera and capture every moment.  Drive just for the love of driving, and MOVE through life instead of watching stupid tv shows to see other people living through fiction.

I need to have fully-engaged conversations with other human beings!  T talks, and he's brilliant.  He has a 150 IQ, two masters degrees... but doesn't like to engage much in conversation.  I often just give up quite honestly.  There's a lot to talk about, be it life here at home or anything going on in the world, cars, photography, nature, and hundreds of other topics... even shows on tv we mutually like. But that fails miserably most of the time.

I need beauty, engaging conversation driven by passion for the subject, laughter, joy, hope, dreams, and just to be completely comfortable in my own skin again.  I need to eat clean, healthy... and not have to fight every single day to do so.  I need to have at my disposal the tools necessary to help myself.  Is that so much to ask?  I don't think so.

I need to feel passion for my life again.  I need to feel excited about my life again.  I want to feel actual health, vitality, energy, and LIFE coursing through my entire body again.  I want MY life back, rather than to be forced to live my life through that of another.

I.
Want.
MY.
Life.
Back.

I need healing.

The entry that never was

It happens.  Every so once in a while I'll start an entry, just to be pulled away to deal with something else, only to come back and find it didn't make it into draft.  That's okay.  Probably not meant to be said anyway, at least not all of it.  Still, the early morning entry I was composing was about something very real, and something that instills a sense of urgency on my part with regards to my situation.  Even so, I had two doctor appointments today to contend with, and changes that did, or will be, due to those appointments.

The day wasn't bad.  Today was just a day that needed to 'be' in the great scheme of things called my life.  Learn from what I can and walk away from it with a plan, a new plan if necessary.  Things change.  As information changes, so does my take on how to proceed.  And today was definitely one of those days.

Skipping the annoyance of this morning, I will say that my first appointment went mostly as expected.  Saw the liver doc, an AWESOME doctor btw, and we assessed my reaction to tapering off prednisone.  Since the symptoms of AIH returned beginning with the first taper, he said this is what is used to gauge ongoing treatment/therapy to bring AIH under control and into remission.. long-term.

Basically, as expected, he added Imuran (Azathioprine) to the mix, so I'm now on prednisone, an anti-inflammatory and immunosuppressant, AND Azathioprine, a very powerful immunosuppressant.  The way this protocol works is that I'm to taper down from prednisone while increasing the dosage of Imuran (brand name, btw.. just easier to type. I'm actually taking the generic called Azathioprine).  The Azathioprine dosage will increase as the prednisone decreases until the Azathioprine reaches my ongoing dosage of 150mg/day.

I also had blood work done to re-check liver enzymes, Aldolase (as it was once highly elevated a few months back, returned to normal a few months later), a complete CBC, metabolic panel, and a test for a specific enzyme to see how well, or IF, I will be able to metabolize the Azathioprine.  Some people can't metabolize it and need to use something else, because the drug will literally build up in the system and cause organ damage, mainly to the liver; that's something we definitely don't want.  Doc wanted to start the medication right away, but he is going for a 1/3 of the dosage to begin with, and when test results come back we can assess if I can continue taking it.

In two weeks I have to return for more blood work, and in one month another follow-up.  The blood work in two weeks is basically to make sure I'm still metabolizing the new drug, even if the first test for the enzymes proves favorable.

In the meantime, I'm struggling with dealing with T situations.  I'm not angry, mind you.  Not today anyway.  But I am incredibly disappointed that he doesn't take anything I say seriously with regards to what he does, doesn't do, says, etc.  Things really do have to change or this will not be a long-term relationship, that I can tell you.  And yes, he knows this.

Okay, so what I will say about this morning is this:  I don't sleep that well at night for a few reasons, so waking me up at 5am for a 7:15 appointment makes absolutely NO sense whatsoever.  This morning I was awakened by T, who said it was time to get up.  I was groggy, out of it really, and tired as hell.  But I simply accepted what he said and did my best to get up and get going.  Thing is, I didn't need but 30 minutes TOPS to get ready to go.  And what did he do?  He woke me and then went right back to bed himself.

....?????....

I was up, moving about, bewildered, befuddled, groggy, tired, sleep and sore, and I realized that I was the only one up and 'getting ready' so went to find out what was going on.  I certainly didn't 'need' to be up this early, so I assumed HE had a reason for me to be.  He was back in bed.. sleeping.  I asked him if he had fallen asleep by accident, and he said.. "No. Just going back to bed."  Yeah, I wasn't real happy about this.  I wasn't upset he was in bed when he didn't 'have' to be up, but I was irritated that he made a point of waking me, knowing I would never get back to sleep again.

Let me clarify this completely by saying... there was NO reason I should've been up at 5am.

Anyone who has insomnia for ANY reason understand exactly how precious sleep is, and draining sleep deprivation can be on a body that is chronically 'unrested.'

So why did he do this?  I've no idea.  I asked, and he said he thought I wanted to take a shower.  Um, NO.. when I have an appointment THAT early that shower is done the night before.  He knows this.  Overly cautious on his part?  I want to give him the benefit of the doubt, I really do.  I just wish he would PAY ATTENTION to what I tell him so this sort of thing didn't happen.  And again, if you think I'm being unreasonable, try going MONTHS with very little to no sleep and watch how protective you get with that vital and necessary process.

There's no way to bend or twist the events of this morning beginning at O'Dark:30.  I got over it pretty quickly with the infusion of a few cups of coffee.  But things didn't have to start out so damn badly.  They really didn't.

Consideration.  That's so very important to me.  It's the sister of respect and vital to any type of relationship.  Shit happens, I get that.  Shit happens because we're humans living on planet earth and it's in our very nature to have shit happens.  But a little respect and consideration goes a long way.  I don't get upset with him or blame him when his snoring still wakes me up in the other room.  He can't help it.  Some people snore, especially guys.  I wouldn't get upset if he had to go to the restroom in the middle of the night and woke me in the process.  That's a natural body function and anyone who BLAMES a person for that is totally messed up in the head, plain and simple.  But I don't see any reasonable excuse for ignoring when someone tells you something important.

I need sleep just like anyone else.  Is that just too much to ask?  Am I asking for the impossible by saying... Will you PLEASE listen to me when I'm talking?

*sigh*

Holidays, the Non-Gift Giver and the Gift of Giving

Sounds so cliche, doesn't it?  In a time where 'black friday' means people literally trampling each other, sometimes to death (yes, this has happened) to get to the 'best deal,' I can only shake my head and wonder what things have come to, why people are focusing SO heavily on 'stuff.'  I have no problem with the whole 'Christmas package,' meaning the tree, the trimming, the gift giving, the music, and all the little traditions most of us remember from childhood.  I LOVE this stuff.  And for the record, this isn't a religious discussion (I'm Catholic), so I won't be touching on THAT aspect of the season.  Just so you know.

Gifts.  Depending on the person gifts can hold different meanings, different associations, and have very different affects.  Some people are very hard to please and require expensive gifts, while others are quite content with small items with big meaning.  I fall into the latter category.  To me, a well-thought-out gift is worth more than all the jewelry, diamonds, or money in the world.  If someone where to give me a crazy, unique, or spooky stuffed toy... then they've given me gold.  I'm not that hard to please.  Having said that, what about those who live with someone who isn't a gift-giver?  How does that work?  Well, that depends too....

Know who you're with.  Sounds easy, doesn't it?  Well first off let me say that for the sake of this conversation we're going to talk about men--men who aren't gift-givers and what it means.  DO know that I fully understand and am aware that there are women like this out there, but the majority tend to be men.  Women are rather hard-wired for being people-pleasers.

Know who you're with.  You can't really choose a meaningful gift if you don't know who it is you're buying for.  Well, you can sometimes come close by focusing on trends for particular age groups and gender.  But that's outside of the scope of this conversation.  If you know who you're with, then choosing (or making!) a meaningful gift is a no-brainer.  All it requires, really, is for you to actually give a crap.  Blunt?  Yes.  And there's no reason not to be blunt.

Respect who you're with.  THIS is the key, folks.  THIS is what makes or breaks relationships.  It's more than an ideal, it's a necessity.  If you don't respect WHO you're with, you're doomed, dude.  Plain and simple.  Might as well give up right now, because that relationship isn't going to last.   And if it does, it will be one miserable time for all.

Respect is the foundation for every single relationship in your life.  It doesn't matter if it's home, work, family, friends, or enemies.  If you have genuine respect for someone you're going to be pretty damn close to being on-target with just about every situation with them.  I promise.  The only time respect on YOUR part won't work.. is if that person doesn't respect YOU.  But that's another talk show.

Respecting someone for WHO they are, and this is very important, means you KNOW who they are and ACCEPT them for who they are.  If you don't get this, you're screwed.  But getting back to the point--when it comes to gift-giving it's not about YOU, the giver, it's about THEM, the receiver.  A gift isn't something you do for yourself, but something you do for another.  And it's utterly shocking how many people don't really get this.  Now, is there something in it for you, the giver?  Of course! And that, my friend, is a very personal thing, so I'm not going to go into that here.  But giving a gift is NOT about you. Know this first and foremost.

It's okay to make a mistake.  For lack of a better word, I'm using "Mistake" for clarity and understanding.  Even if you know someone well, you can choose the wrong gift in some people's eyes.  Get that?  In SOME people's eyes.  I'm also not talking about people who don't APPRECIATE a gift, so let's not focus on that, because it too is another talk show.

You get the wrong size, wrong color, a music cd of a band you think she liked.. only to find out.. she hates them.  It CAN and DOES happen!  But the difference is.. how many times does it happen?  A couple?  And is it really an honest mistake on your part--because she's going to know.

If it's an honest mistake, a good woman is going to know.  If it's carelessness, she's going to know.  If you put NO thought into it (here's where knowing and respecting that person comes in), she's definitely going to know.

But if it's truly an honest mistake... it's okay.  Either she'll be sentimental and suck it up and keep the gift, or she will exchange it.  So.. how you react to those things are up to you.  Just know that it's REALLY not a big deal.

I can't say I see any gift as a mistake.  Well, if you buy me men's cologne.. then yeah, that's a huge mistake. lol  But for the most part, the effort speaks for itself.

The guys who aren't gift-givers.  Now this is a big one.  And a complex issue.  So I'm going to attempt to not make even more so.  Some guys aren't big gift-givers, but they show love in meaningful ways.  I mean, how can you fault that?  You can't.  Tenderness, care, compassion, friendship, being a good listener, being a strong support system for whatever is needed, and being her biggest cheerleader.  Oh yeah, those things... are worth more than gold.  And if you have that, CHERISH it with all you have!

The flip-side to this whole gift-giving thing is what's often lost on some guys.  YOU may not be into it, but if SHE is, then why not participate in something that brings her joy?  I can't speak for the situations where 'she' wants excessively expensive things, but I can say that for women like me, who are happy with the little things, it really wouldn't take much effort to make Christmas 'super cool.'

I'm with someone who isn't a gift-giver, and there are other issues that overshadow that.  BUT, it would take very little to make Christmas an absolutely lovely affair.  But T doesn't really feel ANYTHING about the holidays, outside of a religious nature that is, and so I'm left to putting up a tree and decorating by myself.  This wouldn't be such a big deal if T appreciated any of it.  Last year the tree was decorated, as well as a couple of rooms, and he walked through the door and noticed not a single bit of it.  It was a surreal and strange experience, and one I'm not willing to go through again.  So this year, I'm decorating for ME.  What this means is I'm decorating the tree and house the way I want to.  Well, given my health isn't kicking me in the ass too much to actually decorate.  Just know this, guys, when things get to this point, when she's creating all the experiences and memories by herself... she's literally living 'by herself' in your presence.

When she's creating all the experiences and memories by herself... she's literally living 'by herself' in your presence.

I'll let that sink in a moment...

There are men out there that literally have no appreciation of the gifts given to them, the time, effort, money, etc. put into choosing just the right thing.  Seriously, guys. even if it's inexpensive, it should still be meaningful and memorable by you.  Some guys show their utter lack of appreciation for gifts given to them by actually FORGETTING WHO GAVE THEM THE GIFT!  And oh yes, this happens.  In my own experience... I gave a gift to my ex, a bear, and he GAVE IT BACK to me a year later.. as a gift!  He 'thought' he'd bought it.  But I actually had/have photos of when I chose it, purchased it, and took it home.  I hand-delivered this gift to him, and he didn't even remember who gave it to him to begin with.  And to make matters worse is---his 'shopping' in the stuff he had around the house to find me a Valentine's Day gift.  Wow.  A hand-written love letter would have blown me away, and it would've cost nothing but a few minutes of his time.  *sigh*  Guys... don't do this to your wife or GF.

If you're a guy who isn't a gift-giver, consider trying to do that for her.  Maybe it doesn't come natural to do that, but it can become a sweet habit if you simply... practice.  Don't have the money to buy her a bouquet of flowers... buy ONE!  Buy a rosebush and plant it for her (the gift that keeps on giving).  Whatever it is you do, put thought into your choice, make it say "I know you," "I see who you are and I love that about you."

Thoughtful gift givers put actual thought into the process, don't overly focus on cost (staying within budget, though) but on choosing something that fits that person, watch for clues as to what might be the perfect gift for that person, plans ahead--doesn't rush out at the last second and choose whatever's easiest, and makes their choice from the heart.

Not a gift-giver and unwilling to try?  If you simply can't be a gift-giver, then at least get out of the way and let her buy her own gifts.

It's really simple when you think about it.

All's well with the plumbing.  Electrical was address last year.  As far as other functionality, I still need to address the diastolic dysfunction, and of course... keep an eye on the MVP w/regurgitation, the valve issues, etc.  Just a watch and wait thing. :)

As an aside, I discovered something interesting yesterday that somewhat surprised me.  Xanax rocks.  rofl.  Never had the stuff before, but they give you one w/Benedryl as pre-meds prior to the cath procedure.  That didn't happen the first time I had a cath, so... I had no idea what the big deal was about people liking Xanax.  Basically, for anyone who doesn't know, it breaks your give-a-shitter.  lol ;p  Just useless information I find funny.  I'm actually quite glad they gave me that, because half of the meds they use for conscious sedation is morphine---which I'm allergic to.  And, just like the transjugular liver biopsy I had last week... I was awake!  Ugh.  And DAMN did that lidocaine hurt like a mofo when it was injected in the area surrounding my femoral artery!  GEEZ.  Not a fan of that, btw.

Just saying.

Purity Ring - Obedear [HD]

Settings change for 'adult content'

First let me say the settings we changed due to some subject matter which will be discussed occasionally.  While I work on talking openly about issues that NEED addressing, some of those issues are going to be sexual in nature.  I think it only fair to warn you guys.

Many of you won't care as I've had these settings in place before.  I removed the settings and decided not to talk of anything 'sensitive' some time back, and I did this due to an increasing necessity to protect myself by withholding much of what's going on within and without.

Things are changing, and I'm fully planning on going with the flow here.  If you can hang---cool.  If you can't hang---I certainly understand.

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...

Have you seen my alter egos?

.... I think they're playing a disturbing game of hide and seek.  Just kidding!  For the sake of clarity, for anyone new to reading the entries of this blog, my 'alter egos' is a reference to my other blogs, ones which I try to update as often as possible.  At times, I copy and paste the same entry as the first blog I began with, but I try very hard to post what's relevant to that blog.  Trust me, my blogs aren't supposed to be created equal. ;)

You can find the Alter Ego links in the menu bar on the side of the page, if you're curious and new to my blogs.  And why do I have other blogs?  Basically, they were all set apart for specific purposes; dreams and wishes, passions/life/desire/health, and the transient things that, by their very nature aren't always meant to sustain themselves in my life, or... at times... on 'the page.'  Naturally, all of the parts make up the whole, so overlapping is common and necessary sometimes.

I have to admit I've held back a lot over the past few months, whereas in the past I've pretty much unloaded here.  I won't go into why I began withholding what I really wanted to write, but the experiences took hold and held on for dear life.  It wasn't my intention for things to go that way.  But they did anyway.

My goal going forward is to find myself in a place of trust.  This will be a process, because my past being what it is, well, it's just going to take some time is all.  I'll get there.

One of those days... '..the girl that time forgot.'

Tell yourself whatever you need to...

....to feel good about 'you.'

It's been a freaking busy week filled with doctor appointments, phone calls, decisions, and dealing with the remaining tasks with the new house.  I'm beyond worn out, so freaking tired.  Rescheduled my follow-up with the neurologist this week because 3 appointments in one week is about my limit.  Really.

As I get closer to answers to all the medical/health issues I find myself with more questions about the everyday life issues that I don't honestly have the energy to deal with.  Life's too short for excess BS, and so I'm finding different ways to deal with those unsavory tidbits that threaten to wreck my peace of mind.  But I'll get to that later...

I have an EGD and a second colonoscopy in 5 days.  I'm waiting on my GI doc to get his staff to schedule the liver biopsy, and I have a chest CT scan scheduled the 19th (day after the EDG & colonoscopy), then a sleep study scheduled for the 25th...

You guys may remember that, a few months ago, I had an abdominal CT due to kidney stones, and in that process they found a 11mm nodule on my lung.  Went to one lung doctor who drew a teeny tiny dot on a page and said she wasn't concerned and would do another CT in a few months "because it's so small."  I was incredibly tired that morning and knew something wasn't right about what she said.  But it didn't occur to me what it was until later that day---she had drawn a ONE MILLIMETER dot on the page.  The nodule on my lung is 11 times larger than what she thinks.  She failed to look at the paperwork, and apparently failed miserably when looking at the CT (which was on a disk I'd gotten from the radiologist).  In fact, it took her NO time at all to come into the room, so I doubt she even looked at the CT...  She messed up.  So I requested a second opinion from another doctor, because ALL trust in this doc went out the window.  What if I'd been a high risk patient with a long history of smoking?  I've never even tried cigarettes, but what if I had been high risk?  Waiting months for another CT scan due to her mistake could be disastrous.

So at the lung doctor yesterday...

He came into the room, asked a few questions, picked up the disk and said he was going to go review it.  I waited in the room for some time (unlike the visit with my first lung dr).  He came back, sat down and said.. "The nodule on your lung is larger than we like.  I'm going to schedule you for a CT scan because what you had at the hospital was of your abdomen, and so we have no idea what else if anything is going on.  You'll be getting a chest CT so we can take a good look at your lungs."

He went on to say that since I'm a non-smoker that is in my favor and that he believes the nodule is going to be benign.  But he can't know for sure until they take another look.  He also said it's going to be a watch and wait thing to see if it grows and how fast, etc.  This nodule, if benign and of inflammatory origin will most likely just calcify and nothing else will come of it.  I'm expecting this as well.  Although I grew up in a household with my mom being a HEAVY chain smoker, and one who didn't like to keep windows and doors open, I still think that I should be okay.

This doctor is awesome, absolutely awesome.  He was on the ball and really paid attention to detail.  He wasn't all cuddly and fluffy, but he was very professional and not dismissive.  The latter, of course, is always preferable.

So, once done discussing the lung issue, this doc also insisted on a sleep study because of my AFib.  Even though I'd had ablations for the AFib, SVT, and atrial flutter just last year... he said that he suspected sleep issues because of the AFib and it poses a serious health risk.  I agreed and was told to go to the sleep lab to speak to the folks over there and get scheduled.  Here's where the problems began for the day....

T drove me to the doctor's appt yesterday because he took a day off (building up massive amounts of leave and has to use it before he loses the time).  Yeah, nice of him, except for when it came time to go to the lab to get my appt set up.  His response.. "You have to go over there right now?  Today?"  *sigh*

Moving right along...

I saw my EP doc, the one who did my ablations.. to get an ultrasound and discuss The Watchman device.  Looks like I'm going to go ahead with that procedure, especially since I'm told that since I had a TIA in 2013 and had Afib that my risk of having a major stroke is "50/50," and the liver issues make me a huge risk for a major bleeding event because I'm on a blood thinner.  My ferritin is very low (anemia), and it's usually high in someone with NASH.  This could mean I have a slow bleed from a duodenal ulcer.. which is why I'm getting the EGD.  The colonoscopy is being done in case there's something going on there.  Even as a Vegan I eat the right foods, take my vitamins, and I shouldn't be anemic due to diet.

T also has a bitchy attitude towards my being Vegan.  *sigh*  He can eat whatever he wants.  I don't force him to eat Vegan.  But he's bitchy about it.  Mean in many ways.

Lord have mercy, but this shit has got to stop.  Life is WAY too short for bitching about what a person chooses to eat or not eat.  *sigh*

He rationalizes his indifference, his bitchiness, his rigidity towards just allowing me to be myself and live my life.  I don't say it aloud, but I often think to myself during his 'episodes'... "Tell yourself whatever you need to.. to feel better about 'you.'"

There really isn't enough time to waste on BS.  I'm striving for better health and to get my energy back.  It's necessary.

.... So much more to say but too little energy to type right now.  Maybe I'll come back after a break.

I often fail. But I always try: Decoding simple answers from someone with chronic pain/illness.

It's a measuring tool for the curious, or simply the polite.  The question that is always expected to have the same answer.  What is real, or truth, or truth hidden behind a protective veil is not always evident to others---it's rarely ever meant to be recognized.  And yet the questions come, in part, from those who fail to realize... they shouldn't have asked to begin with.

Decoding the usual.  "How are you?" is offered by the polite, and sometimes they actually want to know the answer.  Well, for someone who has chronic pain/illness this is one of the most difficult questions to answer, so we have to know, specifically, what it is you actually want to know.  That long pause after you ask, that's the wheels spinning while we figure out how best to proceed.

The short route is going to be quick AND expected.  "I'm fine."  On the surface it sounds okay, believable, and luckily... we're not asked to expound.  Now, before we go further with this, allow me now to show things from MY perspective.  I'm not sure either of us is ready for this. lol

The question: "How are you?" is often where it all begins.

Decoding the answers....

"I'm fine" rarely ever means I'm actually fine.  Decode that reply and you'll know what I'm actually saying is... "I don't know how to tell you how I feel, because I'm betting you really don't want to know."  You're still in safe territory here and can relax.  But pushing could mean trouble.. for both of us.

"I'm okay" is a bit tricky, because what often follows is.. "Just okay?"  Once that door is open there is little way to close it again, and you're going to find out exactly what "Okay" means to me that given day, and this could go anywhere.  It could be worse, though, trust me.  Escape at this point is possible... if you act quickly.

"I'm good.  Hanging in there" is pretty much a red flag that things are very wrong.  Here is where you should tell yourself... "Don't ask the question if you don't want the answer."  Translation:  Run like hell!  Everything I've been dealing with has overwhelmed me, leaving me torn between "Help me work through this" and "Leave me alone!"  That middle ground is dangerous, because even I don't know how I feel.. other than like shit.  At this point, you're probably screwed.

And just when you think it couldn't possibly be worse... you know you've entered the place of no return when I say "Fine," because there is never really going to be any such thing in my life as just.. "Fine."  Ever.  Here's where it gets hairy, and here is the place where you're going to most likely end up in an uncomfortable silence as we both try and figure out how to proceed.  I'm not having a good day at this point and know precisely where I am and how I feel about anyone asking me how I am, and it's not going to end well for you if you ask again or push.  At this point..I may be too physically and emotionally wrecked to give an actual answer.  Run, Forrest, run!

Anything you say and do can be held against you.  Well, just saying to tread lightly here, because you are asking more than I can give.  Maybe you can sense this, which has left you with the moral dilemma of.. "Do I answer and risk what I know is coming, or do I risk looking like an insensitive ass and say nothing and move on?"  Yeah, this would be a good time to exit stage left, sound the sirens, call for backup, and otherwise get the hell outta Dodge!  If you hear "Fine" come out of my mouth, I can pretty much tell you one simple fact: You can't help me right now.

I never said dealing with me was going to be easy these days.  My pain, weakness, and the resulting effects have already beaten a lot out of me, and what I'm trying to do at the moment is to simply make it through the day without giving up.  *Without giving up.*

At this point I'm going to say may sound rather contrary, but it's important for people to know what it's like (inside) for someone dealing with chronic pain and/or illness.  You won't know unless you experience it for yourself, but maybe some of this will help you understand what just happened when you ask.. "How are you?"

Yes, please ask.  Most everyone dealing with chronic, invisible illness and pain, etc. really does want someone to care.  The question is comforting, even when it's not at all wanted, though the answer could be more than you want or expect.  Still---ask.  Never mind the answer, or how emotionally charged or depleted it may be.  Just ask.  It helps, though it may not seem so at the time.

And please be aware of why you're asking.  Because, I promise you, *I* will know.   I will know if you really want to know how I'm feeling, how I'm doing... or if you just want to know 'What's up?'  And if you feel indifferent, it will show.

It's not a girl thing that I'm talking about here.  It's not a gender thing whatsoever.  When you feel like crap most of the time, or are having a flare-up of whatever it is you're dealing with health-wise... even talking or interacting can become difficult.  There are times when we have to deal with everyday life, whether we feel up to it or not, and it takes a toll, one in which few can actually SEE.  Oh there could be subtle signs, such as dark circles under the eyes, not looking at all like yourself (which is often the case), etc.  But those are often not remarkable enough for most to pick up on, or if they are noticed they're often explained away.

I'm still me, though I often don't feel like myself.  I still have patience, but it's strained on many days depending on how long I've been in pain or feeling so weak that holding a cell phone is very difficult.  I still want to talk, interact, hear about your life, your passions, and have meaningful conversations; that hasn't changed.

I'm not that difficult to deal with.  Even on my most difficult days I fight to remain engaged, attentive, focused, and like 'the old me."  I often fail.  But I always try.

I am still me.

I wrote this in the context of mild humor, hoping beyond hope that anyone dealing with someone with an invisible, chronic illness can have a different view of what it's like to be asked "How are you?," because such a powerful question can elicit so many different responses in the absence of vibrant health.

Seriously.  This was meant to be humorous, though the content may have some sobering elements.

Bear with me.  Talk to me.  Take me out of the world of indifference I live in and into the light with you.

When the dreams come...and the fireflies are back..

Wrapped in the velvet of night, they dance and glow despite the shortness of their lives.  They aren't burdened by the thought that their lights will flicker and fade far too soon-- they simply continue to dance.. and shine their lights until the end of their lives.

Transitioning off Topamax has been easier than expected, and it's been an interesting ride thus far.  My sleep has changed again, though not in the respect of pain affecting my sleep in adverse ways.  Still, the dreams....

They're wild, to put it mildly, and perhaps telling if one looked into them too closely...which I tend to do.  I believe, as I was taught in college Psych classes, that dreaming is the mind..actually the subconscious, not the mind.. working out issues or problems, etc.  So when I dream of being in a building filled with rooms and doors and windows...supposedly...it represents me.  Or to put it more specifically.. it represents my 'self.'  I was taught that, in dreams, a house represents the dreamer.  But it doesn't have to be an actual "house."  It can be any structure/building.

This dream, which I had several nights ago, stuck with me because there's a lot, after scrutinizing it a bit, that is fairly revealing...

I was in a building consisting of many floors, a complex maze of rooms, corridors, windows, and doors.  The doors themselves were very telling with their different sizes, shapes, how they opened (standard, shutter-like, etc.), and... the sheer number of locks on them all.  Locks of all kinds...

I was on a very high floor looking down upon streets filled with people.  And not ordinary people, mind you--you know how dreams can be.  So.. most of them looked quite alien in nature...with some being pale white, gray, etc.  But they would change from being alien-like to being just.. people.  And these people wanted IN my building.  I remember feeling anxious, though not exactly afraid, as I scrambled to shut and lock what doors were vulnerable and unlocked.  And I almost succeeded.  All I knew is that I couldn't let these people in.  At all!  And dreams being what they are... someone got in.. and I had that proverbial "Oh shit!" moment...right before I woke.  Yeah.  You know how dreams can be.

I've been very isolated lately--by choice.  I don't let Tom close these days because he's rather 'out of touch' with what's going on with me and what I'm dealing with.  Having 'been there, done that' in the past with others, and also knowing how damaging it can be to be with someone and yet feel completely alone, I knew the only way to protect myself is to isolate myself.  A bit.  From him.  He knows this, because I've talked to him about it.  It hasn't made any difference, and he just keeps saying he doesn't want me to do that, etc... but... he continues to do things that make it impossible for me to stop.  He knows I can't afford to allow stress or unhappiness, etc. to come in and cause more harm to my body and mind.

Being sick isn't a walk in the park, but if one keeps a good mind-set about things.. it can be a drive in the country.  It's really all what you make of it.  "It's your attitude, not your aptitude, that determines your altitude."

....

Midnight, Music, Musings...

It's been a long time since I've tried posting with an app, so if this sucks..then let's just chock it up to melancholy and the fact that I'm restless and laying in bed and doing this in the dark with music in my ears and my thoughts not quite organized. 

I'm feeling a little bolder than usual these days, including right now.  Is that okay?  Not that I'm all that entirely bothered with whether or not I actually care or not. It's more of a matter of curiosity and a spark of rebellion kicking in at the moment. I'll-timed though it may be. It's very much needed. (Pardon my allowing typos having their way with me. I'm restless and tired..not having any control over the latter as it were).

I'm feeling crowded, suffocating, and in desperate need of spreading my wings. I'm too far away from friends to cut loose and find my way back to myself for a little while. This translates into what we have here---me laying awake, phone in-hand and babbling away like this in an attempt to make sense out of the .... well, confusion.

But the music is good. Even if I'm finding I need new headphones. 

I need a lot more than headphones. 

I told you shit was going to get real.