Pushing forward....

Still dealing with shoulder surgery recovery (a very long process), so I've made another video so I can at least keep up with entries somewhat.  Thanks for visiting....

Risk for Redemption.

I played a bit with the idea of composing an audio/vid for myself, just something to remind me that there was, in fact, a time when I felt like a normal human being, when pain was minimal and sometimes absent, when I could behave normally, when restrictions of body (and now spirit and emotion) hadn't taken hold.  I know I used to feel better and actually participate in L I F E.  But for the life of me, my mind edits at will and separates the now from the then, the me I became and the me I once was.  So to keep it all in perspective... I made an audio movie with pics ranging from 8 months ago to 4 years ago, before this big crash in everything that is 'my life' and 'me.'

I was hesitant to upload it here (still am), but a friend of mine said "Do it.  Put it ALL out there, and to hell with what anyone thinks!"  It feels odd to see my own face all over this video, but... it's mostly for me anyway, something I can look at and recall that L I F E was there in me, and maybe.. just maybe... I will start believing again.  enough of the typing... arm aches horribly.

The compilation set as a reminder of where I once was in my L I F E and H E A L T H, remembering a healthier, happier me... taking a risk for redemption of myself, an apology to tell the woman I've become.... 'I'm so sorry I let you down."

It's Been Rough

I'm not sure how long I can sit at the computer, but I'm giving it a try anyway...

I'm down to 2.5mg of Prednisone per day and am feeling completely beaten to death at this point.  The bloating/edema is still as severe as ever, and I just can't seem to feel right no matter what I do.  My appetite has waned, thankfully, but now nausea has taken place where I did have the dreaded prednisone appetite.  And I'm cold--SO cold.  I honestly don't have any idea what to expect going forward and am barely hanging on.  I'm dead serious about that.

The worst of it is that I'm having issues, big issues, with my muscles not working; they honestly just refuse to do what they're supposed to do.  The weakness and bloat and discomfort are unbearable.  But I'm hanging in there, getting up every morning, pushing through the routines I like in order to maintain some semblance of normalcy in this so-called "Life."  But it doesn't feel like MY life.  Not even a little.

It's only 10:55am and I've been up since about 7:30am.  And I want so badly to crawl back into bed, cover up, get warm... and sleep.  Just... sleep.  I'll allow myself to give into that once I'm done updating my blogs; a goal I set today and intend to fulfill.

Where is normalcy, my life, vitality?  Why I continue to ask that is beyond me.  I mean, I know full well it's just a rhetorical question that has NO answer.  Habit, I guess.

....I'm waning fast here....

The Elusive Unknown.

Variables in my life are sometimes the insidious monsters that hide in the shadows laying in wait.  While the analogy sounds grim, it's my way of defining the undefinable.  It's a human thing, after all.

This road I'm on is rocky, and I'm left feeling the broken pieces of my life digging deep into every step I take. On the surface everything appears chaotic and inherently uncontrollable; such is the process of healing.  One thing resolves while another is revealed.  Symptoms from illness, symptoms from medications to treat illness, and more pieces of yet another puzzle found in lab reports that inspires even more questions than reveals answers.  I'm left wondering when this will ever end and how?

I know how I sound most of the time, and I've refrained from giving voice to the truth inside.  I guess it's my not-so-distant past still poking it's spiny nails into my back, reminding me I just can't express those feelings because it may make other people uncomfortable... "And we can't have that, now, can we?".. it says.  That voice should've been silenced a couple of years ago, and yet here it is, interfering again.  That's another talk-show, I'm afraid.

But the truth is--I'm depressed most of the time.  Beyond that first week on prednisone, when I felt more like myself than I had in years, things have gotten better in some ways, and worse in many others.  So much is blindingly out of control, and I don't have the energy or drive to rage against any of it, nor do I have the power right now to affect change.

There are steps that I MUST take in order to heal.

There are some things I can do, or that I think I can do given my health problems.  And when I say "Think" I'm referring to changes I can make that I've no clue as to if they would help or harm.  Since there are no definitive answers as to what's what beyond the Autoimmune Hepatitis, I'm left in this ridiculous limbo where I wait.. and wait.. and wait; not the best scenario, I assure you.

I go to bed each night believing that the next day will be better, another opportunity to get it right (whatever that means).  I listen to music, remember better times, better health, and being happy, and long for a sleep where I don't remember my dreams the following day.  And when I wake up in the morning I'm greeted with the familiar weakness, and the other reminders that I'm not anywhere near healed.  It's another day of waiting and wondering and finding the strength to just...keep...going.  For every day I make it to the end I consider a good day, because I haven't given up, at least not yet.

It's glaring apparent as to what I need to do.  My mind and body are often at odds, all physical and emotional 'discussions' ongoing and without, as of yet, any agreement.  Let me tell you--this sucks in more ways than I can describe.

Eat better.  Work out.  Find ways that inspire peace, tranquility, happiness, joy.  BELIEVE that this WILL be resolved at some point.  I know this is what I should be doing, how I should be thinking, but my body warns me that believing isn't enough--not nearly enough.

The problems with my relationship also causes a great deal of distress, stress, anxiety, frustration, and it often completely steals all joy out of my life--what little there is.  If I've said it once, I've said it a thousand times--I'm not demonizing T.  He does the best he can, I know, but his being tuned out, the knee-jerk reactions and actions of his that are blatantly disrespectful needs addressing.  And soon.  I can't do that for him, which means I'm left to exist within the confines of those happiness-destroying behaviors.  He's a good man, but he needs to educate himself on a few things.  Enough said about him, though.

I'm depressed.  I am.  I'm not completely taken out at the knees, though, so that's a good thing.  But it's something I needed to say.

Write/Delete, Write/Delete...

It's been that kind of a day.  And it's also been a while since I've done that, you know, write something only to delete it a few minutes later.  Yep.  It's totally that kind of day already.

It could very well be I'm still not quite recovered from the epic crash I experienced yesterday, something I'm assuming is Azathioprine side effects kicking in.  My Dr. increased the dosage big time, so I guess it's bound to happen, and from what I've read it's going to take a few days or so for the side effects to ease.  Until then, I just have to go with the flow and be nice to my body.

It didn't help that I woke up to a mess to clean up in the kitchen.  This wouldn't be an issue except for two things: 1) The mess was necessary and created out of carelessness.  2) T didn't bother to clean any of it up.  Something spilled on the cabinets, the floor, the counter.  It's really difficult right now for me to bend over to do anything because of the wicked lower back pain.  But I do what I have to do when I can, and this particular mess couldn't be ignored.  I'll pay the price for having cleaned it up, but again... I do what I have to do.

If I could just wake up one day, just ONE day, and not have messes to clean up.  If I could just have that little bit of 'nice' first thing in the morning, that would be awesome.  I'm sitting here, yes, remembering that particular brand of peace that comes from living alone.  I know a lot of people understand this, because I've spoken to a few lately about this very thing.

So how do I get this 'peace' here and now?  Not sure, exactly, because there's so much going on, so much that needs addressing.  My health.  Issues with T's indifference and carelessness in many matters.  I don't even know where to begin until my body reminds me that it all starts with good health.

My dream, my goal.. is to just get healthy.  And boy, that's another talk show after what I experienced yesterday....

....Another talk show entirely.

Predicting Life

There's simply no way to predict how I'm going to feel from one day to the next.  Planning anything is out of the question and has been for at least a year now.  Life, for me, is measured by the information my body gives me when I first wake up, and mostly after I've consumed a good deal of coffee.  From the onset, once my feet hit the floor in the morning, I'm given a small hint, just one small message that tells me everything I need to know about how the rest of the day will progress (or not as the case may be).  The message is clear, but I honestly wish it weren't.

Quality of life isn't something I have right now, I have to be honest about this.  Some days are better than others, true, but my quality of life has diminished considerably.  If only I could feel the way I felt on that first week of prednisone---closest thing to 'normal' I've felt in years!  But as fate would have it, there's simply too much going on with my health for one simple pill, or even two, to put me in a healthy, strong place.

So I picked up copies of my labs yesterday and learned a few things.  For starters, what I understood to be increased PORTAL vein pressures was actually CENTRAL venous pressure.  NOT having portal hypertension is VERY GOOD news!  And on the flip-side, that CENTRAL venous pressure increase is extremely bad as it could very well be a result of my heart issues, lung issues, or both.  There's just too much overlapping findings here.

Liver enzymes are creeping towards normal, slowly, which is great!
Aldolase is now elevated again.
MCV is elevated again.
BUN/Creatinine ratio is elevated.
Calcium is low.

To the last, I don't understand at all.  I take calcium supplements, so I've no idea why my calcium is low now, except that it's perhaps the prednisone.  Still, supplements are supposed to keep that from happening.

Aldolase is another puzzling bit of information because it's related to muscle and/or liver damage.  But which?  My guess is that the doctor could be right in that there's another issue that has yet to be pinpointed and nailed down with a diagnosis---possibly myositis.  The muscle weakness and severe lower back pain and cramping when I stand up/walk could be a result of muscle inflammation.  But why isn't the prednisone making me stronger like it did in that first week?

One thing for sure is that there are a LOT of really awful symptoms that have gone and not returned since starting the prednisone.  I'm stronger in some ways, and weaker in others (depending on which day it is).  The one constant is that I still don't feel well, even if I do feel better.  It's at least something, right?  I'll take what I can get, but I do need my life back.

I've no idea what will happen next, what will be addressed next, or how long it's going to take to feel like a normal human being again.  My arms are so tired right now that I have to lean my forearms on the laptop as I type, because there simply isn't any other way I could do it.  Yes, it's a very bad day today, and I long to crawl back into bed and just wrap myself in my favorite microfiber fleece blanket.  Oh, you've no idea how much I want to do that very thing.

Even so, I'm up, awake, and I can't allow myself to fall into that trap of laying down every time I don't feel good. Hell, if I did that I'd never get up!  Still I have hope that with everything going on that someone will tell me what all I'm dealing with here.  My blood work will be tested again on Monday, and MAYBE there will be even more improvement with my liver enzymes, and MAYBE with those results, which should come back about a week later, more investigations as to what's still occurring will begin.  I know, however, that despite it all I'm told the liver issue is the most important right now, the most critical.  And I get that.  I really do.  But I still need to know if there's something else going on here, or if the AIH is actually messing everything else up.

And I definitely need to find out what the deal is with the central venous pressure, because that appears to be directly related to heart issues, and possibly lung issues as well.

I'm so tired.  So very tired.  Just so very tired.

PART 1: I wasn't supposed to be.... awake.

But I was... the entire time during the procedure.  It's not exactly the nightmare they make movies and write books about, but it more than surprised me, and it most DEFINITELY surprised the radiologist performing the procedure.  Really.  I was supposed to be asleep.

I arrived at the hospital yesterday morning to have a liver biopsy done.  I'd already researched enough to know what to expect, talked to people in the forum I belonged to to hear their experiences.  I wasn't expecting to be this surprised.  Oh, but I was.. and in more ways than one.

When the radiologist came in with another doctor to talk to me about the procedure, what to expect, how it will work, etc., he mentioned HOW they were going to access my liver.  Now, this is where the first surprise came in...

He began telling me that Dr. S wants things done a particular way and that the procedure I'm having is "tricky" because it involves entering the jugular vein and inserting a wire that will be able to reach the portal vein in the liver in order to check the pressure there.  He began telling me the risks to the heart and lung and liver.  I listened, but I was confused because I thought I was to be there for just the biopsy and didn't know anything at all about checking the portal pressure.  Skipping ahead...

We talked a little about the procedure, and the radiologist reassured me that Dr. S was very specific about what he wanted done.  I asked if anything bad had ever happened during the procedure with anyone he's done it on and he said that the only thing that has happened in his (long) career was one patient's heart went out of rhythm and wouldn't go back in, so they had to stop the procedure, send him to the cath lab to shock his heart back into normal sinus rhythm.  Ok.  Only one event.  So I said..  "Ok.  Let's do this."

The Dr. assisting the radiologist explained about the two medication that I'd be given, that I wouldn't be put completely under but would be unaware of what's going on and wouldn't feel anything, except perhaps the lidocaine they would use on my neck where they would make the tiny incision to access the jugular.  He said I would just 'sleep' through the procedure and would not have any recollection of it at all once it's done and I'm awake.  I was familiar with this because I'd had a heart cath in 2013, and ablations on my heart in 2014... so that twilight sleep I know about and have experienced.

...Off to the OR we went.

Once on the table the anesthesiologist told me she was giving me the first dose of sedation, and that it would be done in stages until they're ready to begin the procedure, then she added "The lidocaine may bring you out of this for a moment because it stings, but it will be brief."  By the time they were ready to begin I was loopy as hell, but I was awake.  One last dose was given, because I was awake... and I think I nodded off for a minute or two.  Then I was awake again.

Awake, aware of my surroundings enough to hold a conversation.

I heard the radiologist say he was administering the lidocaine.  Oh yeah---I definitely felt that.  But it quickly receded and I felt nothing in that area.

I felt the cath wedge go into my jugular, and I continued to feel it go down my chest, felt something strange with my right lung, felt it proceed past my heart--to which my heart fluttered a little--and then nothing... for now.

I heard every word said, heard the radiologist talking to the doctor that was there, even remember hearing him calling out the numbers once he began reading the wedged pressure and free-flowing pressure.  I remember the numbers exactly.

A couple of times the anesthesiologist raised the blue drape over my face to look at me, and I returned with a smile.  Then... they changed Caths and went back in to take the biopsy samples...

The first "snap!" I heard had only a little discomfort with it.  The second "Snap" was a bit more painful and I said.. "Oh, that one smarts!"  This was the first time the radiologist knew I was awake.

"How much did you give her?" I heard him ask the anesthesiologist.  "She's awake."  She responded with the dosage she'd given me, and he said.. "Wow.  I would be on a vent if I'd had that much."  He has a smile in his voice, so I know he was just joking a bit. Plus I was familiar with this radiologist as he'd done the biopsy on my thyroid nodule a year ago.  He's good guy, a really skilled radiologist.

So the third "Snap" I heard came with significant cramping across the entire front of my ribcage, where the liver is.  And oh yeah.. THAT one definitely hurt.  And folks, I have a high pain tolerance for stuff like this, having kids, etc.  So when I say it hurt.. I mean it.

Once they were finished they removed the blue drape and one of the nurses told me she was applying pressure to the little hole where they'd entered the jugular.  She told me there may be a bit of a bruise there and that she was sorry if the pressure she was applying hurt.  It really wasn't that bad, and I told her so.

As I lay there with pressure being applied to my neck the anesthesiologist came over and apologized that I felt pain and explained she wasn't sure why I remained awake.  I assured her that it was okay and that the pain I did feel didn't last a long time, that I was okay.  They returned me to recovery.

I told my nurse there what happened, and she looked at me as if I'd grown a third eye. lol  The other nurses turned around (my bed was right next to the little desk where all the nurses sat) and gave me a look of horror. haha   Hey, no events... so to me this was a good procedure.

I'll have the results in a few days, I think.  But I don't believe I have portal hypertension at all.  I believe Dr. S just wanted to make sure due to some of the symptoms I was having.  As for the presence of any cirrhosis... I don't believe that's the case either, or Dr. S would've seen the prominent veins in my esophagus etc. when he did the EGD a couple of months ago.  What I DO expect is to see  if NASH is actually present and to what extent, and if there is any fibrosis or not.  I fully expect the outcome to be okay, with perhaps  NAFLD or maybe NASH if inflammation is present.

PART 2: Selfishness as a matter of convenience (Where's the respect??)

I'm unimpressed.  I'm completely unimpressed by T, and by the way most guys treat women.  In my particular case, the disrespect is dehumanizing, demoralizing, belittling, and disappointing beyond anything I've known.  It's not just this relationship, but in the past as well.  My choices have NOT been the greatest, and my guess it's because I'm trusting and take people at face-value.  This is NOT a good thing.  At all.

As of yesterday a new low has been established, and I'm in no position to do anything about it.  Thus is the case when dealing with control freaks who refuse to see that they're actions are completely selfish and self-serving.  DON'T VOLUNTEER to do something for someone if you're only going to use it to gain control over that person!  DAMN!  How hard is that to understand?

All my doctor's appointments are now between my doctors and T.  Why?  Because ALL appointments aren't about what's necessary, or needed, or critical, or about doing tests etc in a 'timely fashion.'  Nope.  NOW my appointments are about what's convenient for T.  It's about what he does or does not feel like doing, what works with his schedule (he's been told he needs to use a lot of his leave or lose it), and none of it has a thing to do with... me, you know, the actual patient.

Yesterday was a disaster, stressful beyond reason, frustrating in that I'm basically told I no longer have any control on when or what time I get an appointment.  *sigh*  One major symptom of late makes it dangerous for me to drive much beyond a few miles of my house.  Dizziness/vertigo doesn't exactly translate into "safe driving."  So I'm stuck for the time being, screwed beyond reason, because I have to wait for T to decide when I can see my ENT or Neurologist regarding the severe tinnitus, vertigo and dizziness that's come on over the past couple of weeks.  I sit.  And I wait.  For HIM to decide when it's a good time to see the doctor about this.

Why the F***K am I here????!!!!  Being here is unhealthy, both physically and emotionally.  It's detrimental to my health and well-being, and the inner workings of living in this house with T has destroyed my quality of life.

Now, some of you know my recent history with relationships and know what I've gone through.  I also know what you're most likely going to say to me and expect that email eventually.  It's okay.  Send it on.  Maybe I need to hear that.. 'again.' ;)  Either way, you're most likely seeing something familiar in all of what I'm writing, in which case I will say... I do too.

More later.  I promise... the flood gates are open now...

Finally.

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.

I'm going to finish the other portions of this on my other blogs.  Things have turned a corner...

Running interference

"STOP!"  Some words have lost their effectiveness.  As many times as I tell myself to stop with the stupid internal dialogue it has yet to have any real effect on me.  Damn, but my inner child is stubborn as hell!  But then, all of me tends to be that way.  With a lack of a support network I'm left to my own devices, and the on-screen blabbering of an indifferent internet to fill that void.  Guess what?  NONE of it's working.

Inspiration, more specifically the lack thereof, squashes motivation before it even gets out of the gate.  Am I saying I'm uninspired, then I would have to say "YES!"  Knowing my situation will only change when I facilitate that change (personally) is enough pressure all on its own, but when I'm told my my cardiologist that I can't exercise until after I have the nuclear stress test and get the results, well, that really puts a massive damper on things.  And waiting is just another level of hell.

My subconscious is raging against all that's happening, behaving like a willful, spoiled brat, and one in which I can't exactly order to go stand in the corner somewhere.  So the tantrums ensue, unchecked.  Yippee.

Yesterday I saw an orthodontist about an oral device that will help with this mild sleep apnea.  While waiting in the office I thumbed through a huge binder filled with handwritten testimonies of people who've gotten this device (which is a lot like what you wear to protect your teeth if you grind them in your sleep).  Anyway, encouragement and hope literally poured from the pages, and I actually felt myself on the verge of tears at the thought that "I" could really feel THAT good again.  There are things I still need to do with regards to my teeth, like get a dental implant for the one I cracked severely from years of grinding my teeth, so that will slow things down a bit.  Waiting... has never been my strong point.  Delayed gratification sucks when it's something this necessary, vital even.

For every night I spend in poor sleep, I wake to feel as if I'd not slept at all.  So how is it that I'm going to be able to wait for the next few weeks in order to deal with the process of getting that dental implant?  How in the hell do I make myself okay with feeling like THIS for yet a few more weeks?  I really don't know that I can do it.  BUT, I have to.  They can't have them make that oral device before I have the other done because it won't fit.  Ugh.

As my subconscious rages, as it seeks to pout and crawl into a deep, dark hole where it can sulk in private, I'm left with the aftermath of its childish behavior; depression, hopelessness, sadness, bewilderment, and at times anger.  Screw this.  My subconscious and I need to have a damn talk!

I really could use a support network right now.  Having to admit such a frailty is really uncomfortable, I'll have you know.  Over the years I've changed from someone who was open, okay with expressing feelings and allowing them to flow through me so I could deal with them, to someone who refuses to cry in front of anyone, to show my vulnerability, and to even express my needs.  This unpleasant change began a few years ago and has continued to hold onto the part of me I want back.  I feel like a damn hostage inside my own body.  Wtf?

Free me...

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...

Let's Not Get Ahead of Ourselves

Quality of life; it only matters when you don't have it.  I can't speak for anyone else, but QOL matters a lot to me, and mostly because I've had to deal with the poor end of that existence.  Meaning, a poor QOL.  Now, let me make one thing perfectly clear; I don't see QOL connected to being wealthy.  I mean, whoever said you could buy happiness?  As cliche as that is, it's still perfectly true: you simply cannot buy happiness.

Now that we have that out of the way, WTH does that have to do with the price of tea in China?...

I don't intend to waste my life taking measure of everything that's gone right or wrong.  I don't feel that at any moment my world can collapse or expand abruptly; although I suppose this can happen.  I want to simply find my footing in MY life and live.  Is that so hard to understand?  Yes.  For some people have to comprehension of what QOL is or what it means because they've either not had it, or they've never gone without it.  It's really quite simple to understand.

So what does quality of life mean to me?

...Being heard.
...Treated with respect, kindness, and compassion.
...Given a chance to be myself, and to grow as I see fit.
...Having enough personal space to be able to breathe.  Really breathe.
...Being able to take care of myself; my life, my health, my spirit.
...and so very much more.

Because things are difficult right now, my quality of life has collapsed, and I don't mean in some small, meaningless way that will resolve on its own.  What I'm speaking of is far more insidious and disabling than mere unfortunate events.  Oh, and steps are being taken on my behalf to correct this, but the problem lies with resistance and clutter.  Let me explain...

Resistance, push-back when I make changes, reach for the goal, or otherwise try to catch my breath in my life.  Resistance in the form of control, suppression, and a stark lack of empathy from someone I'm living with.  This is a critical time for me, and I need to be focusing on my health, my own happiness, and surviving.  That's right--surviving.  Because if you're in a bad situation it can and will make you sick.  Trust me--I'm there.

I spent quite a bit of time asking the same question over and over again; what the hell is happening to me?  Now I ask; how do I make my life better?  Sure, this is kind of a 'duh' statement, but it wasn't easy for me to get to a place where I could say that.

My blog is a place to start.  In the past I would write to my heart's content about practically everything.  I avoided speaking in code, alluding to facts instead of expressing them, and showing my emotions.  Without going into detail as to what happened to make me stop (right now anyway), I'm simply going to say that it became a series of "Pavlov's Dog" experiences.  Needless to say, those experiences changed me; but I fully intend to change myself back.  Capiche?

I have much to address.  My health is at the top of the list of things that need my undivided attention, and that's precisely what I'm going to do; put my health right at the top where it belongs.

I refuse to allow my relationship to ruin me.  I can't change someone from disrespectful to respectful. I can't make someone feel empathy or compassion.  I can't force someone to hear me when I speak, nor can I force them to remember those things that are critically important to me, to my life, and my health.  All I can do is plug along and detach myself from the situation enough so I can find peace, and so I can heal.  It's all anyone can do in a situation like this.

Yes, I have a lot to do.

But let's not get ahead of ourselves; the present needs addressing.

Progress or Illusion of? I believe the first...

It's been a busy week.  First the appointment with the hematologist to confirm iron deficiency, then back to the sleep center for yet another sleep study.  Results in, and seeing a light at the end of the tunnel is imminent.  Right?

So the iron deficiency is confirmed and I have my first appointment for IV iron infusion next week, then another 7 days later.  Sleep study the other night went pretty well, and while I don't have "Obstructive Sleep Apnea," they did confirm there are 'episodes' happening while I'm sleeping.  My second study was to see if CPAP would help.  This was in question because certain types of SA aren't always successfully treated with CPAP.  HowEVER.... I woke the following morning after my study and felt completely different than I normally do!  Almost back to normal in some respects!  So apparently the pressure setting on the machine had to be calculated by my pulmonologist, based on the second study.  Prescription for the CPAP was called in immediately following the report being sent, so... I'm good to go on that front!

Second step is for the IV iron infusion, which (along with CPAP) should take care of many of these terrible symptoms I've been dealing with for FAR too long.  I'm excited about this.

Hopefully the lung issue(s) will be scrutinized soon and addressed in whatever way my pulmonologist sees fit, and I can go from there.  One step at a time.  And every single step towards that positive outcome is a GOOD step, indeed!

You know, funny thing about using a CPAP machine--the day following using one I felt pretty damn good.  But the following night without CPAP... I wake up feeling like death again.  Pretty telling.

What does this all mean?  PROGRESS!  :)

I'm happy about that. :D

PART 1: IV infusion... hope this works!

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.

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....

Those everyday reminders...

In the wake of the expulsion of thoughts and feelings I keep inside most of the time, there was a little bit of spillover yesterday afternoon.  It comes with the territory, actually, and I wasn't at all surprised that I'd let go enough to vent out loud.  I've expressed enough concerns and feelings about the indifference and the whole 'not-giving-a-shit-about-much" previously, but it was met with...ironically... indifference.  How can anyone be happy when something so bland and vanilla cake becomes a way of life for them?  I will never understand it, personally, and I've mostly stop trying to get that which is.. "un-gettable."  *snort*  Shit happens.

It was both draining and liberating to vent yesterday.  But it wasn't enough.  One 12 minute trip in the car with the master of indifference was all it took to take me right back to square one.  That can happen when you're trapped in the car with someone like that.  And it didn't go well.

An outburst.  Yep.  I had one.  Wasn't intending to, but the relief and calm hints of renewal and regeneration were no match for another slap with indifference.  Those wonderful feelings were just too newborn, far too fragile to withstand something so damaging so soon.  Nowhere to escape, all I had was my ability to expel the bad feelings when they came.  And so I did.

I think there is no worse place than to be in a car with someone who makes you feel so badly.  Without a safe place to retreat to, all that's left is to react.  In this case, it didn't make me feel better, but it did allow me to have a protective layer of indifference myself, born of just too many emotional jabs in all the wrong places.  It worked.  But I certainly don't want that feeling, or lack thereof, to stick around.  Time for action...

In order of find a solution, or solutions as the case may be, I have to shift my thinking, focus, perspective to one that allows me to create an environment that's conducive to positivity.  Not easy, but definitely possible.  I have to create my own environment and one that doesn't allow others to destroy my happiness.  So this means I had/have to ask myself what's REALLY bugging me.  Well, I already knew the answer to that---I'm forced to live in the same household with an indifferent person, one that isn't just indifferent to me, but also to far many aspects of his own life.  And the most difficult part of this is----he's content/happy to be this way.

Is there any reconciliation of two souls who are so vastly different?

How does one live in an environment that makes them unhappy and uncomfortable?  How do "I" live in that environment, more specifically?  Is there any way I will ever be okay with that, and how and where do I indulge in those things that make my life thrive...?  

Thrive.  That's a powerful component to living.  I don't want to just be alive.  I want to thrive!  I want even the most mundane experiences to feel like they're vital components to my life.  They're supposed to be.  They have to be.  Everything should be worthwhile, but we can't always guarantee this is going to be the case.  But why not?  Why can't they be vital?

They can.

Everything, however, loses its vitality when laden with unhappiness, unrest, indifference from others or even self.

Peace, joy, happiness, calm, and a totally whimsical backdrop to life's story.  Yeah.  I know I ask for too much, yet I can't help thinking that it's absolutely possible.

I just need those everyday reminders of what reality is right now... to just take a rest and leave me be. Allow me to breathe... just allow me to breathe.