I'm still waiting...

For a doctor who gives a damn that I'm basically bedridden now.  They need to STOP relying on blood tests ONLY, because not everything that can take you down health-wise shows up in the blood. How do they tell someone who's bedridden that.. they're okay?  It's been coming on since I started the blood thinner, and I've omitted almost every prescription and have gotten no better.  I have an occasional 'ok' day, but that's it.  Where does it stop, and what will it take?  Do I have to do this myself, take myself off the blood thinner and hope nothing bad happens?

My cardiologist says I can't get the Watchman device until my liver problems are under control, and I can't safely go OFF the blood thinner until I get the Watchman device.  AND... I shouldn't BE on a blood thinner when I have a liver issue--because liver problems interfere with the body's ability to clot blood, and it's also not consistent... which make it even more dangerous.  So I shouldn't be on a blood thinner, but I can't get off the blood thinner until I get the Watchmen device... because liver issue has to be in remission, but blood thinner can exacerbate the issue.  Good God, where does this end?

Everyone is sitting on their hands.

I'm basically going to have to make a choice this week to go off the blood thinner on my own--cold turkey.  It's dangerous as hell, but I really don't have any other choice.  The device isn't without risks either.... but I'm done with NOT living.  DONE with it.

*sigh*

"You're allergic to yourself."

Not going to be easy catching up, but I'll give it my best shot.  I spend most of my days in bed, sleeping, or waiting for tylenol to kick in and 'possibly' help with the pain.  Weakness is now stronger than my willpower, and fatigue is my constant companion.  I don't have much energy to type, or even sit at the computer long enough to.  So I'll try and get with it...

Appetite is all but gone.  Still not feeling actual hunger but increased weakness and headache that tells me I should probably eat something.  I usually have yogurt in the mornings so I can take medication, and I find myself full after just a few bites.  I've no idea why this is, why diminished appetite and early satiety is back and worse than ever.  I just know that it is.

Had my every-six-months echo on my heart about a week ago and just got results back.  I'm looking for another cardiologist at UAB, because the one I have now doesn't really discuss anything with me, especially changes.  I'm not okay with that given my family history and the other issues with my heart.

In six months time, since my last echo, my aortic valve has developed stenosis (none was found last time with echo or cath).  It had "trace" regurgitation last time, and now it's to the 'mild' level. Doesn't sound like a big deal until you realize that even this small change happened in 6 months time.  It's a watch-and-wait situation like my mitral valve issues.  Yay. Not.

You guys may remember I had a heart cath a few months ago.  This is when they found the mitral valve regurgitation had progressed.  The report had no mention of stenosis, but if there were any it may not have been worth noting perhaps (just guessing here).

So given changes, and the recommendation to now have echoes every 6 months instead of yearly, I would think the dr. would be a bit more, I don't know, forthcoming to at least explain to me about the changes and what they do or do not mean.  I sure wish Dr. Dewan was still my cardiologist... but he made a career move out of state.  Dammit.

Also went to an allergist.  Now this was the most surprising thing of all---after testing me for everything under the sun.. I'm not allergic to anything. lol  All the sneezing and sinus issues are merely seasonal changes and not from allergy.  Sounds like the same thing, but they're not at all.  This appointment was 3 hours long and with a LOT of discussion.  Doctor isn't just an allergist, he's also an immunologist.  After talking to him about everything that's been going on, the AIH etc, symptoms, etc... he spoke to me about the possibility of a Myositis problem (sounds familiar, huh?), OR Lupus.

He said, and I will quote him: "You're allergic to yourself."  We laughed about this a little, but he says that a lot of my nose and skin issues, that almost appear as allergy reactions, are most likely an autoimmune reaction.  The pink cheeks, that aren't normal for me, he says may be an indicator of Lupus as well.  Apparently, according to him and other research, Lupus is something that isn't really found during lab work via AI antibodies etc., although SOME people with lupus have that show up.  Many, most in fact, who have it don't have that show up in their blood until the disease is years progressed.

Oh, as an aside--I got a breathing treatment while at the allergist's office.  I was wheezing like crazy and the treatment helped!  I had a somewhat wet cough for a few hours, but dang... that was awesome! Not from allergy though, the wheezing and dry cough I have.  Lung issues.. yeah, there's still that.  Anyway, back to the point....

Now I have to see another rheumatologist, and an endocrinologist (because of prednisone withdrawal), and well.. that just sucks.  SO many doctor appointments.  I'm absolutely worn out.

Well, time I left this blog and attempt short entries on the others.  Honestly, my muscles are aching terribly just from typing.  When the hell will this ever get better?  :(

Getting My Attention

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

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

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

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

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

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

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

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

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

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

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

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

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

Cardiac Catheter Results: Changing Life from the Inside Out.

Most of you know the issues with my heart.  For those who don't, here's a basic rundown for clarity:

Mitral Valve Prolapse since childhood.
Mitral Valve Regurgitation.
Grade II Diastolic Dysfunction.
Mildly thickened Mitral Valve.
Mildly calcified 'other' valves.
Mild regurgitation in 'other' valves.

I finally received the results of the Cath I had last week, and it shows the Mitral Valve regurgitation to be moderate-severe now.   Two years ago it was mild-to moderate.  One year ago it was roughly at moderate.

So far I'm told that they will continue watching to see if it remains steady, or if it worsens further.  Further worsening could mean valve replacement.

All other issues remain as-is, including the Grade II Diastolic Dysfunction.  This will be watched with yearly echoes.

What does this mean in lieu of the ongoing symptoms?  I don't know just yet.  With today being the day before Thanksgiving, I will most likely hear about follow ups next week.  My guess is that it will be a watch and wait situation as it's been for years now.  In terms of symptoms, I still don't know my CT results, what my pulmonary doc wants to do (if anything) about the mild COPD, nor do I have my liver biopsy results back and what, if anything, the results could mean.

All is up in the air, and I've no idea why getting results back is taking so long.  My GI specialist has had my biopsy results back, but they've not discussed them with me.  I called the other day and the person on the phone knew exactly who I was when I asked for my results.  They have them, but they've not contacted me about them.  Ugh.  I really just want to hurry up and cross stuff off the list of things to keep dealing with.

Post-heart cath procedure

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.

Spilling over

I guess I should remind some of you who may not know, that if something is bothering me particularly.. I will most likely post it in all of my blogs.  The spillover from one to the next is just something that's going to happen.  Most of the time I aim to separate what I'm talking about between each one so that the meaning isn't really lost in context.  Make sense?

My blogs overlap, though they're meant to be focused in one aspect of my life or another...

Boo's Juicy Bits:  The main aim here is health, diet, eating, all the things that support and give us a foundation for a good (or bad) life.  There's so much to this part of health, so there will be at times an overlap as to what's going on the pages.  If life is getting in the way, or helping me on my way, the details will most likely end up there as well.  And don't be surprised if you find sexually-focused chatter on there as well.   The information is all connected in one form or fashion anyway.

Where Fireflies Dream:  Created as a place for whimsical thought and ideas to play, an expression of who I am, how I dream, what I want, and the things that can or do hold me back from my greatest expression of self within my life as it is at any given point.  Again, be aware that at times topics of a sexual nature will most likely appear in posts.  Don't say I didn't warn you. ;)

This Free Spirit:  The newest blog and one I feel is necessary, even critical for me.  It's a place to talk about abuse.  Been there, done that, and still haven't gotten 100% past the damage, to say the least.  My goal with this is sharing in hopes it will help others, but also to have a place to talk/deal with the lasting effects of my experiences.  This one will often have chatter of a sexual nature as well.

All Things Ephemeral:  Originally, this one was created to let it all hang out, a no holds barred kind of place to talk about EVERYTHING in great, bloody detail.  The nature of doing this means that, in the past, I would often delete posts after a day or two, a week, a month, whatever... because it was a bit much to leave just sitting there for the whole world to see.  However, this is changing.

I will be taking that no holds barred approach with posting there soon, as it's one of the greatest barriers I need to cross in order to heal.  Like Pavlov's Dogs I learned through experience that expressing myself openly meant I would pay a price, a high one at that.  But since this is no longer the case I plan on resuming, for personal growth and healing, my once bold approach to using this blog exactly as I intended---a place for me to be free to express myself in any way I see fit!

Onward...!

Still fighting to find my bearings

Something isn't right.  "Something" hasn't felt right for a few years now, maybe since about 2012, maybe 2011.  When things break, the pieces often remain, cutting their way through the soft fabric of life.  I guess I'm realizing I was more malleable than first thought, and the strong, restraining hands of  someone I loved reshaped parts of me that I actually liked.  Not to say I'm not still in here--because I absolutely am.  Such is the part of me that fights like hell to keep me safe, protected from all the hurtful, jagged edges of what's left.  Because.. the parts of me that didn't mold to the whims and needs and demands of that person...shattered.  Where am I?

The barriers I've built around me have protected me in some ways, and they've also crushed me in others; Vulnerability is no longer something I give into.  Instead, I strive to be the strongest I've ever been, though it's not a comfortable posture for me.  So what of the discomfort, then?  It is what it is and it will remain because of my will.  It is MY will that allows or disallows what happens to me as a person, a woman, a friend, a lover, a mom... every facet that makes me who I am is ultimately at the mercy of MY will and no other but God's.  His will is ultimate, but my will is His gift to me.  And no, I'm not going off on a religious tangent.  I'm simply taking responsibility for the damage I allowed others to do to me, and also for my inability to completely regain control of the clanging thought-machine inside me that clatters on and on.

It's just one of those days sitting in the midst of one of those weeks in what I now call one of those lives...

I'm dealing with illness because of the unrest and DIS-ease I've felt for so long, with the majority of it beginning when I blindly walked into a situation I didn't want to recognize for what it actually was.  I fell headlong right into the abyss and hit bottom.  Dammit, but I should have had my own back.  I have a good understanding of this NOW and am being diligent, watchful.  And yet, contemplating what my life is now in the wake of the experiences isn't exactly pretty.  Not at all.

Nothing is improving.  My health continues to worsen, and all the tests I've gone through over the past few weeks, all of the tests I'm going through THIS week will tell me where I am in all of this.  While it may not be the best course of action on my part I will wait for the doctors to render their final diagnosis and allow them to push me in the direction I need to go.  I'm so bogged down in near-defeat that I can't seem to propel myself in the right direction.

I will let the current take me.

What I learned

Every experience I've had has taught me more than I really wanted to learn, and it wasn't always sunshine and rainbows.  The good stuff wouldn't be recognized as 'good' if there weren't any basis for comparison.  While I grit my teeth and muddle through the bad, I still dream of a future where the good definitely outweighs the bad.  Is that just asking too much?

NO!

I can only take so much.

The sticking point for me these days is a past that comes back to haunt me.  As I've said before, closure in situations of loss is necessary, no matter WHAT people try to tell me (and themselves).  You can't push it aside, or bury it deep, or completely ignore it because it absolutely WILL drag you down to the depths of hell-on-earth while you may be completely oblivious to the signs.

I am well aware of why I can't get closure.  I've been told why, but it was unnecessary.  It took a few steps, introspection, and I had to take a huge step back to see the truth.  When it finally came into focus I was completely taken aback by the sheer force of what I was shown.  My God, how did I not SEE???!!

All that confusion, all that not knowing who the hell he was from one day to the next, all that unrecognizable behavior, the words, the everything.  I didn't question, and that was my first mistake.  I put the rose-colored glasses on and blissfully went through the world in a daze of utter ignorance to my situation, of who and what I was dealing with.  Oh, I've stopped asking myself WHY I did it, because I've gone past that and know better now.  But I still have so many times when I mourn the loss of that person...

Mourning still because there wasn't anyone to say goodbye to.  Why?... because I fell in love with someone who didn't exactly exist! 

This revelation, when it came, knocked the wind out of me and created a sense of loss unlike anything I'd ever known.  Why did it hurt so much?  Why did it take so long to let go?  Why does it still haunt me today?  The reason is stated clearly above, and it's impossible to say goodbye to someone who never existed in the first place.

So who the f**k did I fall in love with?  Not sure, really, as I didn't exactly get to know him that well except for the dark stuff.

How did I manage to move on?... Well I've not moved on totally, which means I haven't moved on.  Strange as it may sound BOTH are true.

I just keep working through it--the confusion.  I mean, what else is there to do?  There was never any closure to allow me to move to the next level and stay there.  The grieving process for breakups is the same as when someone dies, and the process is rather circular... at least for a time.  Back and forth you go through the stages until you reach the final stage that sets you free--acceptance.  While I ACCEPTED the situation for what it is, accepting the breakup isn't exactly what happened, because I'd no idea WHO it was I broke up with.  The person I was in love with changed SO drastically that it took my breath away--and in all the WRONG ways, I assure you.

The less I recognized him the more confused I became, and a part of me continued to search for the person I'd fallen in love with.  This was the cycle I was trapped in while still with him.  While blindsided by the behavior, the sneaking around, and so forth... I still forgave because I was erroneously convinced that he was still the person I fell in love with.  Yet, I didn't SEE anything at all that I actually recognized!  Nothing at all.  The face was the same.  The voice was the same.  But everything else---NOT at all recognizable.

Look, I know people go through events and situations in their lives that change them for a short time; but eventually they get back to themselves again.  Also, the person they are shines through despite what's happening and the resulting behavior etc changes.  I get this.  I've gone through it myself.  However, the absence of ANYTHING recognizable in that person was the most perplexing part of the whole thing, leaving me to ask inwardly and often.... "WHO are you??!!"

I still learned much from the ordeal, and I know exactly what I won't deal with ever again.  I also know exactly what I want.  No one is perfect, and I don't expect perfection, but I do know what's right for me... now.

More on this later....

Testing patience, and those damn zombies

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

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

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

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

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

The enablers...

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

The Borg...

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

The zombies...

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

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

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

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

Guys and epic failures: The humor and the hurt

A friend of mine (who now lives on the east coast) called me the other day out of the blue to share something both heartbreaking...and hilarious.  The conversation began very teary on her part, but after a good hour of talking we were both laughing, and I mean REALLY laughing.  She and I have known each other for several years now, and we have shared pretty much EVERYTHING.  Sometimes our shares were incidental, sometimes on purpose, but we really ended up knowing probably far too much about each other's private lives, which means... we're pretty damn comfortable talking about anything our hearts' desire.  Yesterday was one such day.

I will refer to my friend as R in order to keep her anonymous...

Skipping over the tearful parts (because she reads my blogs) I will say that the entire subject matter of our 3 hour+ conversation was primarily about guys and their epic failures in relationships.  Now, for the couple of guy friends who I've given my blog addresses to... you know I'm not referring to you!  Some guys are sweet, genuine, real gentleman...to say the least, but those guys are very, VERY rare, and I will tell you this---you will NOT meet those great guys online.  Sorry to burst the bubbles of those on dating sites, but... you simply won't.  Advice---save yourself the grief of even going there (online dating sites), because pretty much everyone I've ever met, with the exception of one person who met her guy on a Christian dating site (one you pay for), has found that there's mostly riffraff on there.  And ladies...seriously, it does NOT matter what they guy does for a living or how much money he has!  Just don't go there!

Okay, so R's ex (a recent event, btw) seemed to have been maintaining his profile on a popular dating site...the entire time he was with her.  God, but her story sounds just like mine with my ex!  She found out via another friend who is also on the site...when he showed up in her searches (same thing that happened to me).  So as she cried and expressed her shock, bewilderment, hurt, and anger over the phone... I remained quiet, thoughtful, and listening, because I have been where she is now, and it's one seriously ugly place to be.

I think it probably took her a good 2-30 minutes of crying and venting before she took that deep breath, sighed, and waited for me to respond.  She already knew my history, which means she knew I would understand.  And I do.  I told her how sorry I was that she had to go through that, and I told her she had every single right to feel outraged for what was done to her by this "guy" (whom I did not ever refer to as a "man" for obvious reasons).  Then she began to gush details, ones that in the light of day and 'after the fact' are really... well, rather hilarious.

She spoke of his quirks, personality flaws, and especially about his sexual inadequacies, ones he apparently was quite proud of.  I have to wonder if all guys are clueless to the things THEY like... that simply don't work for women?  So we talked about this for a bit, about why guys sometimes do what they do in the bedroom when it only benefits them and leaves their partner... well, unsatisfied.. or turned off completely.  With the latter in mind, the real conversation began.  She spoke of how the last year of their relationship she'd gone completely bored with him, sexually, how everything he did was for himself, and how he seemed shocked and angry because she was losing interest and couldn't hide it any longer.  She spoke of conversations she had with him that, at the time, seemed SO serious...when in retrospect were completely laughable.  Hindsight, you know... lol  I've had many revelations like that myself.

I felt for her as she told me in great bloody detail how her guy had failed repeatedly to perform.  "Hours.  We would do it for hours, with his talking and moaning and going on and on and on.  I mean, he was so into his performance, into himself that I think he completely forgot I was even there!  What the hell?"  After a moment's pause and neither of us saying anything... we both started laughing.  Suddenly the unspoken part of our mutual understanding of such things became something we could laugh about.  This is a good thing.

She told me that he was attempting to perform OS on her and that after some time of his robotic performance she told him to stop...to just stop.  Wow, I have to say this one really hit home for me, because the very last time "I" enjoyed or even wanted OS this was done to me, as punishment (a subject for another day).  And when she said, "I told him that was it. I didn't want him to ever do that to me again!"  Well, we can certainly say this was an epic failure on his part.  And as R talked... I could see, like with my previous situation, that this really was the beginning of the end for her.

She spoke of issues beyond sex, the cruelty, the way he made himself scarce in her life... leaving her wide open for meeting someone else, etc.  How is it, we both wondered, that guys can be that blind to the things they do that change the way their GF's or wives feel about them?..only to go on to blame her for the relationship eroding?  It's a mystery, I'll tell ya.  A mystery.  But R and I had a lot of laughs as we talked, and she at least was able to get to a point in the conversation where she was focusing on what she REALLY wanted in a guy, a relationship, rather than the time wasted with someone who honestly didn't have her best interest in mind anyway.

"He's not going to even notice I'm gone until, during sex, he looks down and sees that I'm actually not there!" lol  I will never forget that phrase!  Hilarious.

I'd asked a guy friend of mine about 3 years ago why some men behave this way, and he said that not all guys do, then added... "A lot of guys are attracted to themselves" and added that if the woman makes HIM feel sexy then he feels attracted to her for that reason, that men can actually be turned on by their own performance in bed, rather than the women they're actually in bed with.  WOW!  I was really shocked to hear this, though I shouldn't have been given my experience.

My friend, whom I will call "C," is extremely intelligent, has a lot of guy friends, women friends, and is fairly open and blunt when he speaks.  He'd been warning me about my situation nearly the entire time as he saw things in my relationship that were, in his words, huge warning signs.  Should I have listened to him?  I don't know, because I believe that everyone that comes into our lives are there for a reason, and it's usually to teach us something.  In my case, a couple of things broke, and I mean really broke that I'm pretty sure can't ever be repaired.  The experience changed me so significantly in a couple of ways that I just don't see those parts of me ever returning to what they were prior to the relationship.

I can't really can't say here what it is that's broke so completely due to account settings.  I'm not sure if anyone 'under age' has stumbled across my blogs or not, so I have to keep some of this on the down-low.... until I change my settings back again to include a warning for adult content.  Until then, let's just suffice it to say that while I mourn the parts of me that were shattered in that relationship I do recognize the protective stance I've taken since then.  My trust in guys is severely diminished due to what I went through, and I don't allow anyone to reach that vital part of me, of who I am.  Maybe this would change if I resumed therapy, which I had to resort to after the break up so I could repair most of what was damaged.  But, I'm not exactly sure I'm ready for that, because a huge part of me likes things just as they are.

The person I'm with right now has been flourishing in the 'epic fail' department.  He knows, and he's not given any of it any real thought, time, attention, nor is he made any effort to work on things.  His bad, because I'm beyond arms-length now and am completely focused on my health and well-being, rather than him.  It was a natural course of events as my health plummeted under the onslaught of the past and the damaging effects of the now.  As controlling as the previous relationship was, this one is as controlling...but in a very different way.  Either way, control doesn't work for me, and I am going to give absolutely everything I have to regaining my health, self-esteem, and repairing my damaged self-respect.  These are the only things that matter right now.

R and I had a good conversation, and one that ended with us both laughing.  I think she's going to break free from those traumatic bonds and move forward as a strong, single woman.  She isn't up for another relationship, and I can certainly understand that on SO many levels!  For me, I refuse to be another afterthought, slave, or punching bag for any guy.  If I'm not appreciated, then I will appreciate myself first and foremost.  It's the least I can do.

The conversation with R has reminded me of things I'd left for dead in my recent past.  So be it.  I'm sure I needed reminding for some reason.  Maybe that will be my motivation to plug ahead with getting my health in check, to become stronger inside and out, and to also remind myself that the choices I've made in light of my past are mine to make and mine to keep.  What's done is done, and thought I came out on the other side of things somewhat broken, changed... it's probably for the best.

PART II: You can't treat me this way

I no longer care if I'm heard.  My resolve is strong enough that I can take things from here.  My guess is that many guys shrug things off and feel justified in their indifference, and I am more than okay with that right now.  I'm in a place that indifference, silence, and flipping the switch to autopilot just gives me more time to focus on what I need, healing, happiness and health.

Give me enough space and I will build a universe!  And yes, L, you may quote me on that. ;)

Even when I resort to the introvert side of me, or if I'm venting in order to sort through the muddle, I'm a LOT stronger than you think.  Don't underestimate me, because others have and discovered quickly that I don't require their help, blessings, or support in such matters.  If it comes down to the wire... I've got this!

Yes, it would be nice to have people close to me who are supportive.  But I've long since learned that it's not an actual requirement in order to succeed at my goals.  of course, there is a lot that's to be said about having a good support network when you're going through difficulties.  Still, if that network and support isn't there, I have to resort to my own devices.

This is where I am right now.

....Will continue this soon...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Beautiful Mess

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

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

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

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

Okay, guys... I'm beat.

Two entries later on Where Fireflies Dream... and I'm dead tired.  Just. Dead. Tired.  Really.  I'm trying my best to hang in there and stay positive, and I do pretty well sometimes.  Other times the fatigue and pain, etc. take their toll and leave me spent.  It is what it is.

Sitting here is NOT easy, I have to say.  I'm hoping my appt with my PC doc on Thursday will get me started on SOMETHING to get the anemia under control.  I do find myself thinking it's transient, not chronic, and that it will resolve itself.  I also know that taking chances with something like anemia is dangerous, which means I'm taking steps to address the issue before it becomes a more severe problem.

Such is life, right?

In the meantime... the symptoms suck.  That's all I can say right now, is that they simply, totally suck.  I can't stand this much longer, to be honest.

Well, I can't hold my arms up any longer to type, so perhaps I will have a bit more strength tomorrow.

Till next time....

The Big [E]Vent...

Well, such is the way things go for me and blogging, I spent a large portion of time and energy posting on Where Fireflies Dream.  Many times I end up there first, which means the unloading happens in it's full-blown glory before I get here.  Just check the links (side of this page) that says Alter Egos.  Those are my other blogs, as I've mentioned before...

So the big [e]vent happened and I'm left spent, exhausted, and wondering if I really accomplished anything at all.  I'm also wondering how many people think I should be doing the big 'vent' to the person who needs to hear it.  Well, I assure you, I have been quite clear on how I feel, discussing the problems I have with the way things are, and stating clearly that my needs as a person simply aren't being met in any way, shape or form.  And oh honey, those words fell on completely deaf ears.  People are often emotionally lazy, and T... is one of those people.  He won't put any effort into anything, so... flipping the switch to autopilot and sitting on one's own emotional ass will get you nowhere with me.  I will simply find a way to live my life... without you.

This is the beginning of that very thing.

Hey, I know some guys don't do this, and even the ones who do don't all do it to the same degree.  But emotional laziness never got anyone anywhere.  I mean, seriously... if you expect one person to do all the work, you're going to be in serious trouble in the end.

50/50.  But in my case it's more like 20/80.  And I'm freaking exhausted.  Okay, T.. take the damn wheel or you'll be flying alone!  And chronic remorse isn't going to fix this.

Okay, so I'm finding my way along and, although I struggle at times, I'm still plugging forward.  I will find a way.  I will find my life.  And I WILL find me again.  It's just a matter of time.  Once the anemia is resolved, and once I get an "All clear" from my cardiologist on the whole Grade 2 Diastolic Dysfunction thing... I'm going to put everything I have into getting healthy again.  Iron supplementation may make it difficult, and restoring iron stores takes a really long time.  But I can do this.  I MUST do this.  I WILL DO THIS.

Watch and see.

Damn thing won't stop beeping

Day 2 with the heart monitor, and it just won't stop beeping.  Okay, so there are pauses, but there have been SO many... I didn't get this many when I had SVT, AFib, and atrial flutter.  Weird.  For those who don't know how an event monitor works, you basically wear a portable EKG that comes with a monitor that records everything your heart does, and a wireless communicator that sends the information to the monitoring center.  Yes, you're actually monitored the entire time, 24/7, by real people.  This is not the same thing as a Holter monitor where you have the recorder only.

So when an 'event' occurs, one that you know of, you hit the button at the top of the monitor to mark the EKG, then the communicator asks what happened (palpitations, chest pain, shortness of breath, etc.), then it asks what you were doing when it happened (nothing, walking, exercising, etc.).  And whether or not you FEEL what happens, 'they' know..and it's recorded anyway and uploaded to the monitoring center's software.

When I speak of 'beeps,' there are actually 2 that happen during the event.  The first beep says something is happening and being recorded (blinking green light goes solid)...which takes approximately a minute, and the second beep says that event has been marked and is being uploaded (alternating blinking green and blue lights).  Nothing on the communicator asks you to state what happened or what you were doing because, if you didn't push the button, you're not aware anything happened anyway.

Basically, it beeps often when I'm standing, and it beeps nearly every time I bend over to pick something up off the floor.  It's also been beeping while laying down (like last night), and also when I'm just sitting and talking to someone.  This is not the way this usually goes for me, so I don't know what it's picking up.  Possibly PVCs, which most people have and aren't often aware of.  Thing is... I've never had a monitor go off as much as I have the past 24 hrs.  I have to wear this for 4 days, and it's procedure as a one year follow-up after a cardiac ablation.  It's meant to make sure episodes of the arrhythmia(s) aren't happening and determines wether or not the ablation(s) was/were successful or not.

Now, I have iron deficiency anemia, and it's NOT being treated.  So that could possibly explain anything my heart is doing.  Or it could be something related to the Grade II Diastolic Dysfunction I've recently be diagnosed with.  Not sure.  Honestly, I first thought I had a defective monitor, but the monitoring center ALWAYS knows if something's wrong and calls to recalibrate or decide if they need to send another monitor.  So far, no calls.  This is good in that nothing serious is happening. ;)

I know.  Blah blah blah.  I will get to more personal matters later on.

Here I am for all the right/wrong reasons

Posting in 3 different blogs.  By the time I get to the last one, I'm often pretty exhausted, often so drained that I can't think of anything I want to talk about.  Oh, there is plenty I NEED to talk about, but I've not really taken that step in baring my soul here, or on the other two.  I'm not sure I'm making the right decision NOT talking about anything.  But then, so much of what I think I know of my health or any other life situation hasn't exactly had any final confirmation as to where it's all going.

All I know is that there are serious health issues I'm dealing with and am in the midst of waiting for test results to know where things go from here.  Life stuff, outside of health anyway, is a royal pain in the ass, to be honest.  No way am I going to figure that out anytime soon.  Basically, I'm left with a steaming pile of dissension.

Sheesh.

Maybe I can think a little clearer later....

PART 1: While I was looking the other way...

After focusing on the liver issues and anemia and how to resolve them, I didn't take into account that anything else could be causing or contributing to my symptoms.  After my ablations last year for AFib, Atrial Flutter, and Supraventricular Tachycardia (SVT), I figured that was going to be pretty much it for heart issues.  I've had Mitral Valve Prolapse since I was a kid, and yes... that valve began to leak and is at the mild-moderate stage at this time.  I'm supposed to get a yearly ultrasound to keep an eye on things, and up till this past week it was just something I had to do.  I'm about 6 months late on this past one because the clinic I usually go to has lost 3 doctors to career move or changes, and this means my appointment got pushed months out due to the shortage of doctors.  I didn't really think much of it and decided to see if I could get my yearly ultrasound done when I went to see my EP about getting the Watchman Device implanted in my heart... at his suggestion.  I won't discuss that particular device right now because I've previously posted about it.  And I've yet to see if I can even have the procedure done in lieu of recent ultrasound findings.

Saturday (22nd) I received the ultrasound report in the mail.  I certainly didn't expect to see what was on the sheet, to tell you the truth.

I know the MVP can get worse in some people, and mine is slowly getting worse.  I also know that during my last two ultrasounds I discovered that my aortic valve was also leaking.  Well, it is what it is, and this is why I get a yearly ultrasound.

So I'm home alone and looking over the report that arrived in the mail on Saturday, and I see several things listed that surprised me...and I've listed the highlights below.  I will get to what it all means in a moment...

Left Ventricle
Diastolic filling demonstrates a pseudonormal pattern (new).

Left Atrium
Left Atrium Chamber is mildly dilated (new).

Right Atrium
Right Atrium Chamber is mildly dilated (new).

Aortic Valve
The Aortic Valve is mildly calcified.  There is mild aortic regurgitation (I already knew about this).

Mitral Valve
The Mitral Valve leaflet is mildly thickened.  There is mild-moderate mitral regurgitation (knew about this as well, with the exception of the valve now being thickened).

Tricuspid Valve
Trace tricuspid regurgitation (new).

Pulmonary Valve
There is trivial pulmonic regurgitation (new.  "Trivial" refers to the amount, but there is nothing trivial about this).

Diagnosis

Grade II/IV diastolic dysfunction.  This is heart failure.

Okay, so... there it is.  Now what?  Basically, Grade I is pretty much reversible and doesn't require treatment.  Grades II, on the other hand, requires treatment in hopes it won't progress quickly.  I have to wait to find out WHAT that treatment will be.  For some, this occurred due to high BP, but for me.. it was most likely a combination of years of having SVT, MVP, and then Afib and atrial flutter.  It's not like they can treat my HBP because I don't have that.  I may still end up on a beta blocker (hate those) to slow my HR down so it fills properly and doesn't regurgitate back into my lungs.

So yeah, there were a few new things that I learned about from this last ultrasound, none of them good.  Grade II is usually symptomatic, and I now wonder how much of the awful symptoms I've had are due to DD and not anemia or liver issues.  Something interesting that I've discovered, however, is that at night the pressure can cause RUQ pain in the liver.

Well, what do I do with this information?  Simply put, I need to get my shit together.  Exercise (with Dr's approval) is necessary, diet changes (low-fat and low-sodium), etc.  The usual.  My question is--- how the hell do I exercise when I now deal with exercise intolerance?  I guess I will have to find out.

I've been in a sort of daze since I received the news, and while I'm not really 'scared,' parts of me think I should be, because fear is often motivating in these circumstances.  Still, I'm not sure how I feel about this.  And as for T... he's indifferent, doesn't talk about it, and goes through his entire day as if I told him I stubbed my toe.  And it's not the 'I'm going to think positive' type of indifference, either.  He really has this reaction to just about everything, unless it's about him specifically.  This has been an ongoing problem of late, and it's now become more critical than ever to figure out what it all means to me.  Doesn't really matter what his indifference means to him, because he just claims he's not.  Denial isn't a river in Egypt.

So the question remains... how do I feel about this?  The answer is.. I really don't know.

It's not easy to sort through something like this without talking about it.  But who do I talk to?  No clue.  No clue at all.

Dark Kiss

The memory of scent, what people call "Aromatherapy."  We've all been there and understand what it is and how powerful it can be.  So I'll skip explaining that further.  Instead, I'm going to focus on something that may help me back to 'me' again, rediscovering who I am and resurrecting what lay beneath all I carry.  Thank you, Bath & Body Works...for taking me back.... to me.

I guess I sound a little silly, right?  lol I don't mind if you think I do.  I'm happy about this.  And frankly, sounding silly is the least of my worries these days.

It's unsettling, really, having to resort to aromatherapy and other outside measures to remind me of where I was a year ago.  But whatever works.  And this does, in part, work very well to take me back...

Back to when I was calm and happy, on my own.
Back to when I felt better.  And though I didn't feel 100%...I felt 100% better than I do right now.
Back to when I still saw so much hope and possibility.
Back to when coming home felt like the most beautiful place in the world.
Back to when I was comfortable--not just with me, but with many aspects of my life.
Back to when I had the energy to indulge in my photography, doll art.
Back to when simply stepping outside, no matter the weather, felt amazing.
Back to when even spending time at home alone was peaceful and fulfilling.
Back to when I recognized who I was and where I was.

I may not have always known where I fit within this world, but I always found my way back if I got lost along the way and knew, for a time, that I just simply fit.  And that's all I needed really.

Living alone didn't always mean being alone.  I relished my 'me time' and didn't despair when I had more than enough alone time on my hands.  Oh, there were times I thought I was lonely, but looking back shows me that I had no reason to be.  And though I longed for romantic love, REAL love, not having it was never a cause for grief for me.  There was plenty of love, because of my kids.  But the whole romantic notion of love was a longing, but not a depressing one that came with a sense of emptiness.  Usually, in my time on planet earth I learned early that brand of emptiness came when I was with someone who had fallen out of love with me, or when I was with someone and realizing I shouldn't be.  No.. the lack of romantic love when I'm alone isn't a bad thing at all, though one would think so.  I mean, aren't most people driven to find their soulmate?  Something I don't believe in anymore, btw.

My place in the world now is one of complexity.  There are difficulties I deal with, certainly, but they are what they are and are simply parts of the whole, but not 'the whole.'  My biggest problem is not recognizing anything.  Have you felt this?  And trying to make order from the chaos is tiring, to say the least.  As an adult.. I should be given more respect and space to make decisions about my life, health, and how I need to proceed to become the most healthy 'me' I can.  And this, friends, is where everything falls apart.  No space.  No respect.  I can't breathe when someone is standing on my lifeline.

So I'm sitting here at the moment, blissfully alone, and surrounded by the scent of the past, reminding me of who I am and what I need to reconnect with in order to heal.  This, for a moment, is allowing me to breathe, and also to take in all the possibility I have to believe still exists.

....Stand out of my way.  Let me breathe.  Let me live.

When things sit in "Draft" for two years...

8/6/2013 I wrote an entry I never published.  It sits even now in 'draft' while I refuse to make it go away once and for all.  I'm not sure what to make of it, and I'm definitely not sure what to say about it.  I only know that from time to time I read it to make sure, perhaps, that I don't forget.

What the hell
does that
even
mean?