No idea where I am

Seems a common theme, doesn't it?  That most of my entries are about being lost, confused, and simply just not knowing where the hell I am or even WHO I am sometimes.  I've been here before, having lost myself completely in another situation.  And there is really nothing at all good about being in this place at all.  No.  Not at all.  But it's a lot like being in quicksand--knowing if you move at all in any direction you're going to sink even faster.  Crap.  Crap.  Crap.

I don't mind being lost as long as it's beautiful where I am.

For a moment, if I could just lose myself to something bigger, magnificent, taken to a place that feeds my soul.  Life is just too short to settle for mediocrity, and yet that's exactly what I've done.  And I really don't think at all that it has anything to do with being led, blindly, into the abyss, but rather than I've forged ahead on my own while my eyes were closed, shut tight against what might be.

The mundane features of every day life are what we exist in, right?  I mean, we can't avoid it for the most part...unless we're filthy rich.  We do our own laundry, wash our own dishes, clean the house, the dog, and so forth...

But it's what happens between the seconds that count the most.

That's where I lose myself, in those places between the seconds.  It's not easy finding my way in there right now.  I truly believe, though, that the happiest people are the ones who live in those tiny moments, because it what connects everything else.  Every.  Thing.  Else.

So what do those seconds mean to me?  What are they?  They're different for everyone, but for me personally they're little sparks of time that shine brighter and warmer than the sun, yet are as calming as they are invigorating when you submerge yourself in them....

Since moving here a year and a half ago I've lost every one of those seconds.  Prior to that...I was fairly good at finding the little sparks and allowing them to ignite what flows through me---my wants, dreams, wishes, illuminating all that inspires awe.  Those were what fed the creative side.

Now, when I reach for life in those potent places I'm yanked back into the more stagnant parts of life. I don't thrive there.  I don't think anyone does.  But when you're with someone who ONLY lives in that inert place... it can drag you down like an anchor.  And no, I'm not speaking of being anchored as in grounded.  I'm talking purely of something that takes you under the water and drowns every vibrant part of your being.

That's where I am when I'm lost.

Like now.

Drowning.

What comes naturally to me is to exist in beauty, surrounding myself and shaping my environment so that it resonates with what's inside of me.  I think this is what everyone does, even if they're not aware of it.  But it's something I need to do to be healthy!  No amount of explaining to T has made him understand, nor has it inspired him to take the initiative to FIND understanding.  He doesn't understand me.  At all.  And, sadly, he's chosen to be an anchor in my life that's keeping me from seeing the sun... or breathing.

The only way I can survive is to pull away and do what I have to do, risking his disapproval, ire, or whatever.  But you know what?  I've done things his way for some time now, and it's killing me..slowly but surely.  Not just who and what I am inside, but they physical body as well.  The way I will choose to live my life from here forward is to save my life.  I have to.

My needs aren't being met on any level.  As a human being I feel shackled.  As a women I feel dissected.  What I need to do NOW is change my feelings and life.  Period.

I don't recognize my surroundings or myself.  My bad health is making things far worse, too, and.. well, I'm working on that.  Those chains are what they are, but they will be shed far faster than the ones inside my soul.

I can't breathe.

It's just time is all.  I will change my own environment because I have to.  My spirit longs deeply and wholly to explore beautiful places, to see what I've not seen, to submerge each and every sense I have into being alive!  I need travel.  I need to experience something else.

I need my life back.  Again.  So I'm taking it back and making my own experiences based on what I need.  The time has come to actually live my life and feel complete, whole, invigorated....

Wish You Were Here- Pink Floyd feat. John Lennon

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.

When assumptions are a good thing

I have to admit I'm exhausted.  No matter if I sleep or not, or how much sleep I get... I can't seem to bring myself out of the exhaustion with ANY success at all.  Coffee has once again become my best friend, and as I sit and type and catch the aroma of that little cup of wakefulness... I'm at least grateful for having that to help me through the morning.  I'm assuming it's okay, this daily morning indulgence, because I'm mindful of just how much of it I can consume without shoving myself into overdrive.  Assumptions can be a good thing, sometimes.

My sleep study is this evening.  And as I sit here typing with my forearms resting on the table (can't hold them up to type most of the time) I have a little spark of hope, mixed with apprehension, that maybe they'll find something that will lend hope to ending this awful fatigue and sluggishness I've felt for so long.  While a few things could be to blame, including (but not limited to) the anemia, vitamin D deficiency, NASH, and the new heart issue... I'm still assuming that I may have a problem with sleep apnea.  I've been told that there are more types of sleep apnea than the typical 'obstructive' type.  We shall see.

So what fuels me each day if I'm so tired?  Ha!  Funny you should ask...in a matter of speaking.  I guess it's just knowing I HAVE to get up, keep going, keep moving.  I really don't have any other motivation at the moment.  It's funny, really, how motivation seems readily available, like it's just right there in front of me, yet I can't seem to use it.  Well, there's fuel and there's fire... you need both for combustion, right?  I'm lacking at least one, though many days it feels like both are missing.

Man.  I can't even describe how 'blah' I feel these days.  THAT, my friends... is yet another talk show.

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.

An Echo of Nothing

I wish there were more fun and interesting things to write about.  But the truth is... there's just not.  There's nothing interesting about my life at the moment.  Frustrating, yes.  Disappointing, yes.  Interesting.. not so much.  Nope.  Not so much.

Maybe I've just flatlined due to the Flexeril.  It's one of the side effects, and so far I've ended up with 3 of them, none of which are anything anyone would want.  I may take myself off this stuff before the two weeks is up, and I'm DEFINITELY NOT staying on them long-term.  No way.  So is this a drug-induced blasé ... or is my life needing much more in the way of, well, actual 'living'?  I would have to say that the answer is an unequivocal 'Both!'

I'm also incredibly tired this morning.  Weekends, as I've mentioned in the past, are tough.  I get very little sleep, rest, or peace when T is home.  Not a great sleeper these days means I make up about 2 hours after he gets out of bed.  On the weekends, however, I'm unable to do this so end up being sleep-deprived throughout Saturday and Sunday of each and every, single week.  *sigh*  It wreaks havoc on my state of mind and health.  The way I see it, it really doesn't need to be this way.  A little common courtesy goes a long way in these matters.  I mean, does every single thing a person does in the morning HAVE to sound like a wrecking ball going through the house?  :/

I miss the peacefulness of my old apartment and life.  I may not have had a 'fancy' life, but it was pretty sweet.  And living alone wasn't a bad thing at all, really, though I didn't realize how much I would appreciate that later on.  C'est la vie.

At the rate things are going I realize now how much I need to step things up with getting my health in order.  I have to be healthy enough to live my own life and indulge, at least on occasion, in those things that made me thrive.  It's really not a possibility at the moment as things are currently.  But it's all quite fixable, and I can repair my health and my life if I'm diligent and believe in myself.

The reparations of my life and health are underway, but it's going to take some time.  Eventually we will get to the bottom of things, and then I will know what I need to do to begin healing.  The anemia is one issue, for example, of something that is making my life incredibly difficult.  It causes fatigue and pain, as does fibromyalgia.  Three doctors so far tell me have fibromyalgia, but I'm of a mind that such a title is only stating the obvious "Muscle Pain."  That's not a diagnosis, that's a symptom.  I truly believe that there's a CAUSE for that pain.  One day they'll discover what's actually causing it and go from there.  I won't EVEN go into my thoughts on what those causes can be.

So with the liver issue, anemia, and the fibromyalgia... and all the not-so-lovely symptoms that come with those... I really have my work cut out for me.  Nothing was 'seen' during the EGD or colonoscopy that would explain the anemia, so the investigation would need to be continued.  I will say that my being Vegan may be exacerbating the issue, though I can't really say for sure.  My doctors weren't at all concerned with that since many plants contain iron (non-heme), and it takes 2-4 years for anemia to be a problem IF one is very strict.  Iron is added to foods such as oatmeal, bread, pasta, and it's also in many plants, of course.  The trick is making sure to have some vitamin C with the foods that are non-heme iron sources.  I'm babbling on here, so let me get back on track....

It may take my adding fish back into my diet, though I'm thinking that shouldn't really be the case.  At this point I'm willing to do whatever it takes.  So far, with my ferritin at 7.4 I don't need anything drastic like a transfusion, and I can't supplement myself---no one should!  Iron can really mess up the liver, so it's a dangerous journey to try iron supplementation on your own.

I wish I had someone to talk to about all of this, just to be able to talk it out in order to sort through the details and see a clearer version of this picture.  Ah well.  At least I have this blog.  I mean, I'm totally not up to doing anything that would put me in a position to meet people here.  I'm simply just too damn tired and crappy feeling right now.

Writing about this helps, even if it seems as if I'm yelling into a large, empty room and hearing nothing but my own voice echoing back at me.

Such is life.

A collage of irretrievable decisions

I hate taking medications.  People who know me know how much I utterly despise them.  Yes, I do understand there are times when it's necessary, but I consider 'necessary' reasons to be ones in which your life depends on that medication.  I think that rather speaks for itself.  But in the case of muscle relaxers, I have to honestly say that they are amongst the most dangerous.  If you've never taken them, or if you have and didn't read about them... you may want to make sure you absolutely require them before embarking on that journey.

I've been prescribed Flexeril.  I've had doctors in the past try to tell me to take these things for this or that, but I've always refused and chosen to ride out whatever it was.  This time, my doctor says to give it two weeks (like I've not heard that before).  I agreed, and so far I'm hating it.

Here's Flexeril's ugly truth.  Seriously, two pages of side effects.  I'm sure most muscle relaxers are similar as far as risks are concerned, but this is some nasty stuff.  I've been on it for 2 days now and feel absolutely sluggish, and I take it at night!  And here's an interesting thing about those side effects: One of the ones listed on the serious side effects is.. "Unusual dreams."  Really?  And just how am I, or anyone, to differentiate between the normal dreams and the side effect dreams?  Aren't all dreams unusual?  I don't know about you, but ALL of my dreams are unusual.

Well, basically, I'm not liking this crap one single bit and hope I can stop them before long.

Moving along....

As they say, "Those who forget history are doomed to repeat it."  Totally agree.  I've kept emails, texts, this and that for a long, long time now.  Much of it is unpleasant, while others aren't so much.  In some ways I guess I should just delete the lot of them, but I think that if I do the lines will blur between what I need to remember and what I need to forget (or at least put out of my mind).  And oh yes, I'm very adept at blurring those lines.  I'm too quick to forgive and forget, and in some ways.. that's really not a good thing at all.

I've often thought... What if I take all of those conversations and blog them?  What if I actually put them out there for the world to see, talk about it all... right here, right now, on all of my blogs?  Of course, names would be changed.  But would it help others going through what I did?  Would it help, would it hurt, and how would I feel to have it out there for the entire world to see?

All valid questions I've no answers for.

Will I do this, put it all out there for the world to see?  I'm considering it, but I'm straddling the fence at the moment.

What brought all this on?  Well, like anyone I go into my emails and attempt to clear out the clutter, and in doing so I inevitably find myself staring at older emails, those emails.  Once it's there in front of me... I just can't NOT read them.  Again.  Smart move?  Not sure about that either.  Yet, maybe it's good to remember.

Either way, I read and the lines aren't so blurred anymore.  The edges of the experience become sharper and well-defined, making it easier to see and remember exactly how things were at the time.  No longer am I able to shove the unpleasant into the background.  Again, I'm really not sure if it's a good thing or a bad thing to remember.  It all just leaves me feeling.... strange...and wondering if it were all just an illusion, that I was at any point in time free from those experiences.

Are any of us ever really free from the past?