Spent and at a loss for words.

Sounds like a clear sign I shouldn't be posting, doesn't it?  Yeah.  Probably.  But I'm here just the same.  I'm about 5 minutes into taking to my bed, putting on the earphones and trying like hell to disappear.  I never know how this will go, to be truthful.  Sometimes I fall asleep.  Sometimes the music makes me feel better.  Sometimes anxiety comes into the picture.  But physically I have no other option.  When my body gives out, it just gives out.

There's more to what's going on that AIH.  Pulmonary involvement and other signs and symptoms also point to Myositis or Sarcoidosis.  I've no idea what the answer to it all will be.  I just hope like hell those answers come soon.

I'm not going to make any sense at this point because I'm too flipping tired.

Weak...

It's hard to post entries these days with the growing weakness in my limbs.  Even holding steady with Prednisone dosage the weakness just seems to take over everything, seemingly unstoppable.  I've made major adjustments in my diet, opting for extremely bland food and following a diet that's supposed to help a sensitive digestive system.  I've also stopped one of my medications for reflux (I'm on 2) because it can cause GI issues.  So far I've not seen a lot of improvement, but 'some' improvement is definitely better than nothing in that respect.  Still, the weakness is really taking over things, and I have to say.. I'm really sick of it all.

I dread waking up in the morning.  Sitting up on the side of the bed takes great effort, and lifting my arms to dress, etc. is becoming something I have to 'will' myself through.  I long for the days when I could bound out of bed, ready for the world and whatever the day holds.  This weak and tired person I've become I don't recognize, and yet here I am literally willing myself through what few tasks I'm able to do.  When will these doctors get to the bottom of everything?

Yes, the Prednisone and Aza (Azathioprine/Imuran) have helped SO many symptoms, brought my liver enzymes back into the normal range, but symptoms that persist have obliterated my quality of life almost down to zero.  What's next in the quest for 'healthy'?  I'm doing everything within my power to propel myself towards feeling better, healthy, vibrant--but my body isn't responding to anything and simply grows weaker by the day.  I've no idea what to make of it all.

The liver specialist I'm seeing remarked early on that he thought there was something else going on besides the AIH, remarking on elevated aldolase, which remained elevated even while on Prednisone.  My aldolase levels only returned to normal with the addition of Aza... not sure what that's about, but I know testing for myositis at this point is futile due to my being on prednisone and Aza--the two main drugs to treat myositis.  *sigh*

Well, my arms have completely given out, the muscles hurting badly as I type....

I'm out for now...

If it's not one thing....

....It's another.  Such is life, right?  Enter, Prednison---and gone are the days when 'dieting' takes off the pounds and inches.  Now aint that some sh*t?  Most people have to diet while on Prednisone just to maintain weight or slow the gains.  And there is absolutely NOTHING you can do about the chubby face, etc.  Once Pred is stopped and the body resumes normal function of cortisol.. things will go back to normal.  In the meantime, I feel like freaking Violet!  Ugh!

The pic on the left is how I USUALLY look, but I can hardly recognize myself at the moment due to the chipmunk cheeks and overall massive bloating.  *sigh* I honestly feel like Violet... *sigh*

Will I get back to that same level of health?  I wish I knew.  The Prednisone bloat/weight will go away once I'm off the Pred, and I'm hoping everything will be back where it was prior.  Thing is, that photo of me was taken even while I was unknowingly in the throes of the AIH.  It's all in the eyes, too... I look tired.  But oh boy, right now my eyes are ridiculously swollen (like the rest of me), and my eyes are sunken with very dark circles.  For all practical purposes---I look like a sick person.

Will I ever look or feel well?  This is the burning question I have day to day, and as much as I set out to overcome the 24/7 hunger, eat ONLY the right things, I end up giving in at some point in the day.  It's relentless, but I can tell it's already getting better now that I'm down to 15mg/day of the Pred.

As I'm tapering, I'm wondering about how drastically my diet is going to change given the circumstances OUTSIDE the Autoimmune Hepatitis.  Low salt, low to no sugar, low fat, and possibly having to give up all the things that irritate the stomach and intestines, such as wheat, dairy (including eggs), and significantly reducing the amount of fruit I eat.  I've not been eating much fruit at all, though, which I do wonder about.  I love fruit but have lost my taste for it, and many other things, over the past several months.  Part of this, I think, is due to the medications altering my sense of taste, but I also believe that there's more to it as well.  Either way, I wonder what I'll be left with to eat once problematic foods are eliminated?

Low protein, low salt, low to no sugar, avoid processed foods when possible.  I just don't know, but it's not going to be easy to do this.

Leaning on the idea that exercise is supposed to be good for me, KNOWING this is the case for people, all the questions regarding the possibility of Myositis being one of the problems are still there and unanswered.  I've yet to get on that exercise bike because I know that if it is myositis and it's in an active stage, exercising is a bad idea because muscle wasting/damage occurs when the disease is active.  You just can't 'damage' muscles if they're already be damaged, because they won't repair.  Exercise creates muscle damage, and it's within the process of repair that they're made stronger.  This isn't the case with Myositis.  Neato, huh?  Yeah, not so much.

I'm tired of the IF situations.  Oh you've NO idea.  And feeling how weak my legs and arms are even ON Prednisone sets off the warning alarms inside, cautioning me to hold back until I have the go ahead from my doctor.  Looks like I'm going to have to see another rheumatologist as this is their territory.  I won't go back to "Dr. Mumbles."  Honestly, Dr. Mumbles really should retire.  When you disconnect from your patients and spend less than 5 minutes talking to them, when it's obvious you're pretty much going through the motions to the point where you miss significant findings.. it's time to retire.  It's just time to retire.

Well, it's that time of day again... when my energy begins to crash and my limbs become impossibly weak and tired.

I'm out of here.. for now.

Another Day, Another...

When will the dialogue ever change?  It WILL change, the question is WHEN?  I'm fighting against the 24/7 prednisone hunger, the relentless bloat, water retention, swelling.. and dammit... no matter what I eat or don't eat, nothing actually changes.  This drug has taken the wheel and is recklessly steering things headlong into the abyss.

I'm going to make this as short as possible, but I vowed to make entries here so I can see where I was and when and what was going on at the time.  Weight loss isn't going to happen in the midst of weight gain.  Some people are very fortunate to not be on prednisone long enough, or have a dosage high enough, to cause too much damage.  But for those of us who have to endure this, the hell of having to choose between what happens WITHOUT treatment for AIH and WITH isn't really a choice at all, unless you have a death wish.  UNtreated AIH has an average 5 yr survival rate in many cases, and less than 8 when it comes to terms of cirrhosis developing if it's absent at the time of diagnosis.  Those are ugly odds.  So we take our medipoison and hunker down for a long and rough ride to remission.

Diet--meal planning--cooking--eating--and my body's reaction to any of those differ from one day to the next.  And by the end of the day my body is NOT my friend.  It's another day in prednisone hell and I'm not handling this well for the most part.

I can't define the excruciating back pain that came on board almost two weeks ago.  I've felt it before, and it went away quickly when I received 2 IV iron infusions for anemia.  So is the anemia back?  Why won't any of my doctors test for ferritin again to check this?  SOMETHING is causing severe back pain that even prednisone can't touch!  That's kind of a big deal since prednisone is often prescribed FOR back pain!  What gives?  I may end up having to call the hematologist to see if I can get re-tested based on symptoms.  It's a simple test done right in his office, and though the results take about 3 days to come back.. at least I'll know if low ferritin and/or iron in my blood is to blame.  Because honestly, this sucks worse than the AIH symptoms.

In the meantime, I choose what I eat based on how long or IF I'm able to stand there and cook, make a sandwich, etc.  Yeah, it's THAT severe.

It's just another day in my life on planet earth...

The Dangers of Being Honest

Honesty has become a vulnerability.  People who speak their minds honesty are often faced with ridicule and contempt by those who have opposing views. I believe most of us get this and have experienced that ridicule first-hand.  While a valuable lesson, that ridicule and backlash, while it reminds us how we should choose our words carefully, we must always remember that honesty is STILL the best policy, and that lying by omission... is STILL lying.

A friend who reads all my blogs, and I mean every entry (bless her heart), sent me a message and said, "I don't know how you do it. Aren't you scared of haters bashing you?"  Well, no.. I'm not.  I refuse to allow haters and bullies to dictate how I think, behave, react or don't react to any given situation.  I mean, once you give away your power it's really hard to get it back.  It's best not to give your power to another to begin with.

I've relinquished my power to haters and bullies in my past.  My entire life, up until about 3 years ago, I learned to suppress my feelings, to bury anger deep, to hide the foundations of any feelings I had.  Not to say I wasn't emotional, because BOY was I ever.  I wore my emotions on my sleeve for the entire world to see.  But when it came down to recognizing for more than a second what created those emotions, and when it came down to standing up for myself, that's where everything fell apart, and it did so because I was taught early on that having those emotions.. was a bad thing.

I no longer think that, and because I no longer think that I FEEL more intensely those emotions I used to keep in check to the point of denial.  It's been a liberating process, being able to access feelings like that.  I don't have to apologize to anyone for having those feelings, and I reserve apologies now for when I HANDLE those feelings badly; thankfully this is seldom an issue.  So when someone writes me and is worried because I allowed the emotions and thoughts etc to flow freely on the pages here, or in my other blogs, I DO take into consideration what they're saying, but I also take into consideration that I've come a very long way to not only reach my feelings and access them more fully than before, but that it's MORE than OKAY to express them.

There is a danger to being honest.  There's a danger in speaking freely at times.  There's a risk that you won't please one person or another person, etc.  Not everyone is going to like what I'm saying.  But so what?  There will be those who DO, and it's with those people that the unspoken camaraderie is expressed and felt.  What I say, what I express, actually has helped people, and it's certainly helped me.  So I've no intention of changing this, just so everyone here is clear on where I stand.

I will accept the dangers of honesty and continue to be honest, sometimes bluntly, and I will take into consideration the edges honesty has by definition.  I'm not out to hurt anyone, and this is why I name NO names here as to whom I'm speaking about.. IF I'm speaking about someone else.  It occurs to me that having to say this means I'm still aware, very aware, of the risks I take.  But it doesn't matter.. I'm not here to write fiction or make things look better or worse than they actually are.

I'm going to be myself, haters and bullies be-damned.  No one should give up pieces of themselves for others to devour, and that's exactly what you do when you censor your words, thoughts, and feelings in a place or forum where you're there to speak your mind.  People can choose to read or not read, listen or not listen.  Actions are a choice.

So to my friend, though we've spoken about this at length--I hear you.  And I'm okay.  I'm okay with what any hater or bully thinks about me, because I don't answer to them.  And.. you shouldn't either.

Hello World...

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

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

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

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

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

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

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

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

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

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

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

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

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

I'm not holding my breath....

Shakeology--a skipped day way too soon

So if you've read my other blogs you know it was a busy day with a rough beginning.  I'm lacking sleep and too tired to get my head on straight.  Hell, that just takes too much energy, and right now I'm in the throes of needing a nap.  It's crazy, but this day is going to continue being busy as the cable guy AND a contractor is coming over to look at a couple of things that need addressing.  I'm afraid at this point T will be the only one dealing with those two visitors, because I'm most likely going to be sacked out when that time comes.

He can handle it.

As for me, I didn't eat breakfast until after my first appointment today.  No Shakeology shake to help infuse the good stuff in a body that needs really needs it, and just a tad overboard with salt today which is at the moment kicking my ass in more ways than I can describe.

I like the way Shakeology tastes, and I love having it for breakfast.  However, today it may just end up being a supplement to the days' intake of nutrition because I don't see having it for dinner.  I'm starting Azathioprine and MUST take it with a large meal or risk the lovely vomiting episodes that ensure shortly after ingesting on an empty, or mostly empty stomach.  No thank you, I don't don't do the vomiting thing if I can help it.  It's a balancing act, really, trying to drink this, take that, eat this or that at particular times and so on and so forth.  I'm sure I'll get used to it--just not today.

It's been a long day so far.  A very, very long day.

C'mon bedtime--you simply can't get her fast enough.

P.S.  Nausea, you can get the hell out of my life now, thank you very much.

Health Infusion via Shakeology

Some of you guys remember where this all started--my quest to get my health back.  And if you've been there throughout the journey from cardiac ablations for 3 arrhythmias to the current diagnosis of Autoimmune Hepatitis.. then you know how this has gone and what I've been through over the past few years, especially the last two.  At one point, about a year ago, I decided to add Shakeology to the mix, to replace breakfast and have a good, solid, nutritious start to the day.  That infusion of healthy goodies was a GOOD thing.  Did it fix my issues?  Of course not, because I had no idea I was dealing with AIH at the time.  But it did me some good nonetheless.

I've reinstated myself into the program again, with this time not as a sole source of weight loss, but as an overall step towards better help and feeling good.  I'm wrapping that package up with Weight Watchers--because it's the most realistic WOE that there is.  But I feel pretty good about my decision.

Challenges are there in the form of prednisone side effects, one of the biggest being constant hunger.  I mean, real hunger that doesn't let up, with no satiety really being reached but for a couple of minutes tops.  This is a big one when you're trying to get healthier, lose a few pounds, and get your shit together.  I have to face that monster every single day while on Pred, and it may linger for some time afterwards.  The BIG question is: When is AFTERWARDS?

Afterwards is a huge question looming overhead at the moment.  Some people are on medication (pred, Imuran.. or both) long-term, sometimes indefinitely (though that's mostly the Imuran or other immunosuppressant).  For many the medication stays on-board for about 2 years, in which case another liver biopsy will be performed to confirm remission.  TWO YEARS on prednisone.  TWO!  Even at a low dose of 5mg-10mg the effects on the body, both good and bad, are significant.  So at what time does the prednisone become low enough in the body to allow things to return to normal, or close to normal, and weight loss and good health begin?

If only I had the answer.

The effects of prednisone, btw, can last up to TWO YEARS even when it's completely stopped.  This means low adrenals etc. can still wreak havoc until the body begins to produce cortisol on its own again.  Yay.  Not.

No matter what, this is a necessary evil (Prednisone).  Without it I stand a significant risk of AIH causing such damage as fibrosis--leading to cirrhosis--which at some point the liver becomes mostly non-function and a transplant becomes necessary.  This is, of course, the worst case scenario brought about by leaving the situation untreated.  As you can see, Prednisone really is the necessary evil.

So be it.  Here it is.  My 'new normal.'

I'll be glad when my Shakeology shipment comes in the mail.  Just saying...

Recycling the old year anyway

New year, new beginnings... something people talk about when it's time for the calendar to change to the next page.  Why do people set themselves up like that?  Whatever drives you, I guess.  As for me, I've stopped prescribing to new year's resolutions and promises that I'm not 100% sure I can keep.  I mean, once you've let yourself down it's not the easiest thing getting past the ole "Dammit, I failed" self-talk.  Even if we don't say it out loud or think it consciously, it still rattles about inside for a bit.

No resolutions for me, thank you.  I'm going to do a life resolution and give myself permission to not reach that goal in any particular amount of time or in any particular fashion.

So I will now focus on simply recycling the last year into the next and giving it new purpose, a new chance.  Why not?  Why wouldn't I give myself that gift?  It costs exactly nothing and has a higher chance of actually being successful.  Think about it.  Giving yourself a do-over IS possible.

Reach for it.  If you grasp air, reach again.  Keep at it, because contrary to what some will tell you life is a damn process, not a static decision we make each day.  We're alive.  Period.  Get it?  We. Are. Alive.  It's already done for you, and all you have to do is participate.

Get it?

Boo's Juicy Bits, and the Return to Focus

This blog began as a ways and means to talk, often with humor, about health, wholeness, eating, thriving, living, body/mind/soul, and sometimes to share the naughty side of me.  It's gotten WAY off-track over the past few months due to declining health.  Well, those health issues are being addressed, and treatment begins today/tonight.. and next week.  At least with regards to the issues of sleep apnea and iron deficiency anemia.

Getting back on track with posting and sharing here is going to be a major switch in some ways, as I've had to focus far too much on doctor appointments, treatments, and so forth.  But I think it's time, you know, to get back to the part of 'living.'  Doesn't mean I won't have moments where I vent about my relationship issues, dreams, passions, and the like.  It just means that I think since I'm on my way to resolutions for my health issues... it's time to focus on what's ahead.

It just makes good sense.

So what's next with diet, exercise, vibrant physical, mental/emotional health?  Well, that's just the thing.  Tonight will be the first night I use a CPAP machine, and I already know the one night I used it at the sleep center.. I felt quite different the following day, and I returned to my usual fatigued, miserable self the night after WITHOUT the CPAP.  I see much hope in that.  And with next week being the first treatment for the iron deficiency.. I'm actually getting excited about seeing things improve over the days and weeks ahead.  This is going to be a journey of my life, really.

As my focus shifts to hopeful events, positive outcomes, and anticipation for those things not yet addressed (lung and heart issues), I will also have a lot more focus here.

It's about time, isn't it?  ;)

PART 1: IV infusion... here's to more energy and lack of major symptoms?

So I got the call yesterday that my labs confirmed the iron deficiency and that I will be scheduled for an IV infusion.  It will take about 30 minutes for the infusion (not bad), and another 30 mins for observation for any reactions...which can be quite severe/dangerous (anaphylactic shock).  Then I have to go for a second treatment one week later, then it's observation from there to watch for any declines in ferritin, and also to see if the levels are increasing to where they should be.

I'm really hoping this will take care of the awful fatigue and other symptoms, which may not be all due to the ID/IDA with all the other issues going on.  It will be nice to have my body temp in a more normal range where I don't feel as if I'm freezing all of the time.  My temp at the doctor's office yesterday was 96.0*F.. it's been running very low like that for some time, I'm assuming, from the ID/IDA.

Let's just say... these are all steps in the direction of obtaining better health.

Infusion Confusion and Various Other Junk and Stuff

One step at a time.  How many times have I said that statement?  Well, I'm still in the process of figuring things out.  Or, at least the doctors are figuring things out.  Either way, though progress looks slow, it's still progress.  I'll take it.

Saw the hematologist this morning.  He ordered new labs to re-check my ferritin level so we can proceed with addressing the low iron/ferritin.  The levels have to be re-checked to confirm that the problem is still there, and if it is (which he suspects) he wants to address it with IV therapy (iron infusion).  It will take 2 treatments, one week apart.  Then once the treatments are done my ferritin/iron levels will be monitored over time to make sure it doesn't begin to drop again.  They won't have my lab results back until later this afternoon, and if it shows low ferritin again.. they'll make an appointment for the IV infusion.  Could be worse!  Some folks have to have an actual blood transfusion if it gets too bad!  Mine isn't that bad, thank goodness.

Pulmonary issues still to go.  Have to do the breathing test, which I'm assuming is because of the "Mild, scattered scarring" in my lungs.  Which I don't understand at all and try not to think about too much.  It's all still up in the air at the moment as to where my pulmonologist will take things.  We will see.  Just hoping the chronic cough I have is just the low iron.

Still in the wait-and-see phase.

Now... about those damn dreams again!.......

The sound of my voice--just one presence in the world

To be heard---is not a difficult or complicated request.  And the weirdest part about not being heard is then when you take a moment out of your life to listen to your own voice, you find a unique opportunity to connect with your very presence in the world.  Now, before you confuse this with being self-absorbed or a narcissistic "Need to hear your own voice," allow me to put it into perspective and context.

Perspective, Context, life!

Take a moment and read a poem out loud to yourself.  Only to yourself.  Listen carefully to your voice and imagine your voice not ever being heard again.. not by you, not by anyone.

Listen not to the words, but to your voice.  Do you hear both the subtle and distinct sounds and nuances that make your voice completely unique?  When was the last time you even thought about your voice?...?

Is your tone soft, clear, muted, or resonant?  Do you hear emotion as you speak, and if so... what is it in your voice that tells the world where you are, how you feel?

Your very breath is in your voice...

What do you sound like?

So many people take this for granted.  That deep disconnection from self is more evident when you sit alone in a quiet place and listen to the sound of your own voice.  Poetry...or words from your favorite novel... what does it sound like when you recite them?

After you've read that poem, or those chosen words from a book (make it meaningful).  Now, stop talking and listen to the silence that follows...

....Stop talking and listen now to the silence that follows.  That is the absence of the sound of your voice...

Think about it.

The Spaces Between the Seconds

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....

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.

Colonoscopy Prep....

I hate you.  That is all.

Reminder: My other blogs

A couple of you have sent me messages on FaceBook regarding a few issues I promised to talk about or update about.  I have.  You may have just missed where I spoke about them.  This was the problem I mentioned previously about keeping all 3 of my blogs.  But you guys begged me to keep them all, so I did. :)

So as a reminder, and to either clear up confusion or create more, here are the links to my other blogs.  You can always find them in the menu section (side bar) under Alter Ego.  Also, in case you've forgotten, mostly the separate blogs are for focus, so that all topics don't all end up getting blended together in one place.

Hope this helps...

Where Fireflies Dream

http://gothicwell.blogspot.com

All Things Ephemeral

http://autumnwhisperstome.blogspot.com

Boo’s Juicy Bits

http://boosjuicybits.blogspot.com

Each blog is designed for a specific purpose and focus, true, but all of them overlap in many ways.  I may end up burning myself out posting on one, and may not get a chance to post an entry on the others the same day, or at the same time.  There will be times, in other words, where it may appear as if I've not made an entry...when I actually have but on a different blog.

A brief explanation of the blogs may help a little bit.  Just remember that even if a topic/blog may not interest you, I may have spilled everything there and not posted elsewhere.

Where Fireflies Dream was intended to be a place for dreams, wishes, hopes, plans, goals, etc.  But it's evolved over time into something bigger than that.  That's about all I can do to explain this blog.  There are days when the focus is implied, and days when I'm speaking in contrast to what the focus actually is.

All Things Ephemeral is the original blog, the one I built and posted on about anything and everything you could possibly imagine.  I used to give quite a bit of details, which often meant deleting entries after a time that said too much.  Hence the name "All Things Ephemeral."  Now, I've not recently unloaded in detail there, so most of the entries remain intact.

NOTE:  It must be said that when I do post in great detail there the post may not remain for long.  So if you make it a habit of reading posts in this blog you probably won't miss anything.  If you wait too long.. the entry may be deleted.

Boo's Juicy Bits:  Now this blog is mainly about health and diet in the context of flirtatious fun.  With health issues wreaking havoc, however, it's changed the entries for the most part.  But as things change and I get on top of things... it will return to its original and flirty content.  I'm not about faking things to entertain, so you guys will know pretty much where I am by what you read there.

Again, ALL of these blogs intersect in some way.  They all have a purpose, to which I've tried to keep true on, but they still cross over one another in ways.

Okay.  Enough of this.  Again, you can find the links to the Alter Ego blogs in the bar to the side of each blog.

Well... this liquid diet is kicking my ass today, so I'm off here for now.

*waves*

Dear Dairy...

We need to talk.

They put you in almost everything, including things you really have NO business being in.  You lurk, skulk about, hiding in a deep and complicated list of ingredients and use false identities to conceal yourself.  In the human diet, you're a complete and total fraud.

Potato chips.  Why?  Why are you there?  It's not 'potato and milk chips,' so wtf are you in there?  It's a trap.  Good thing I'm not eating potato chips.

Thank goodness for an app on my phone I can use to scan any food that's processed, and not that I NEED to eat processed foods.  It just happens sometimes.  I should fix that.

As diligent as I am I'm not perfect at finding the hidden dairy in certain foods.  And OH... do I EVER pay the ultimate price when I do.  *sigh*

Dear dairy, I'm sorry.. but I broke up with you because you're a sadistic bitch who hurts me whenever I have to deal with you.  Our relationship over the years has been toxic, though I failed to see the connection between you and so much discomfort and misery.  This is the end.  We must part ways, completely and totally.

You should stick with the calves for which you were perfectly created.  And I know mankind has treated the life that holds you like garbage, living factories for human consumption.  And I'm deeply sorry for that.  So I will continue to do my part to not support the industry who do those vile and inhuman things we know happen.

As for last night---I forgive you.  I'm still breaking up with you.  But I forgive you, because you weren't meant for me.  Yes, I indulged in you unknowingly and paid a HUGE price for it.  But I forgive you just the same.

Goodbye, dairy.  I wish you well.

Seclusion

Never really a good idea.  Just saying.

I've had a bad time of writing here lately, always so unsure of what I'm doing or where I'm going.  Let's face it--I'm stuck.  Not for a lack of trying, but mostly for a lack of motivation and guidance.  I can't even begin to tell you how tough it is to be mostly isolated while trying to reach out.

WTH is that all about anyway?

My sense of direction right now is also f*cked up.  Too much is unknown for me to pick a direction, a focus, anything that would remotely help me to get up again.  Yes, the health issue is greatly responsible for what I have to deal with from day to day, and not having definitive answers makes things even worse.  Freaking limbo.  Damn.

Well, I guess I do have ONE direction/focus---health.  It will have to do for now.  But honestly, I'm going to plan for a vacation...at the least, a short road trip to somewhere where I can take in the scenery and renew my soul.

Yeah.  Most definitely.

When a post sits in draft for over 2 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?