September 01, 2016: Everything But The Kitchen Sink...

Life.  Amiright?

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."

Carrying on... but on a different approach..

So, as you guys may know (if you read my entries) my health has been chaos over the past year or so.  Okay, so before that too, but lately it's hit a whole new level of 'bottom.'  It is what it is.  Recently, due to being pretty much bedridden I began to wean myself off as many medications as possible, and so far... it's not helped.  But I think what's left to explore is possibly key.  About that in a minute.

I'm on a few medications.  A blood thinner due to a TIA in 2013 attributed to Afib, etc. I had ablations for 3 arrhythmias.  Two different medications for GERD, two different medications for (embarrassingly) chronic IBD, a statin, Prednisone and Imuran for AIH.  Over the past week I completely ditched the statin, and I ditched the Imuran shortly after weaning off Prednisone.

Yes, I'm at risk for a flare up of AIH by stopping the Imuran.  I don't care.  QUALITY of life is far more important to me than how long I live.  It's a weird thing to have to face that reality, but.. there's a chance the AIH may not flare again for a year or two.  We'll see.

So where I am, briefly because I feel horrible and am weak, is in hormone hell.  After taking the Prednisone for 3 months that has likely suppressed my adrenals, which affect other hormones...

Okay... sorry, but my arms are aching badly just from typing.

Sheesh.  More later.. I hope.

Handle this, handle that, forget what it does to your soul.

I told myself that I could handle this today.  I promised myself I would at least try.  And I did, try.  I can't say I'm handling things well at all, because.. to be truthful.. I'm not.  But I'm trying.  Do I really believe I'm strong enough to get past this whatever-it-is?  Now that's the million dollar question, isn't it?

Forget it.  The whole idea of just "enduring" life is ridiculous and not something anyone should try on purpose.  I don't think anyone does, you know, do that on purpose.  Most of us are catapulted directly at the bullseye of defeat by forces we can't possibly overcome much less stop.  Some give in.  Some give up.  Some are caught between the two.  And me.. I've no freaking idea where I am in this mess.  I just know I don't like it here.  And why should anyone have to be where their soul, spirit fades beneath the gray?

Know when to get out while your spirit still has its wings.

Twilight--my favorite time of day.

It's a small part of the day and one you may miss if you blink.  Stay awake.  Just stay awake.

Almost the entirety of my escape processes include music, where the fabric of reality and the fantasy of reclaiming a life I once had clash in, sometimes, startling and colorful ways.  I don't delude myself into thinking that I don't know what really is or isn't; who cares?

Falling asleep listening to carefully constructed playlist is the only oasis I know.  While some songs grant me enough peace to fall asleep others wake me, and it's the message rushing to the forefront of those that bring me out of my slumber that are the most unsettling, the most telling.  I sometimes think of those moments as my subconscious crying out for help, that the sleeping soul and the wakeful spirit will be one again.

Creativity sleeps.  Dreams are too distant to remember.  Hope sits quietly beside me, distant and unmoved.  Memories are places my conscious mind tries to take up residence when I'm unable to sleep and surrender to what smothers my soul.  The abyss is real, and the truth looks down and recognizes its reflection in the darkness.  It's not as grim as it appears on the surface.

I no longer try to make my conscious and subconscious shake hands and call a truce.  The battle is a quiet one below the surface....

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...

The Non-Attractive Art of Half-Assing Life.

I'm here.  I thought I would have to lay down and shut down for a while like I did yesterday (boy, was that something).  It's funny how anxiety can over-stimulate and shut one down in a brief time, and at this time I'm waiting for the shut-down part.  Honestly, I was gearing up for just a minor reboot, something I can achieve at times with just laying down and listening to some music for a bit.  However, that was quickly kicked to the curb by finding yet something else T had 'half-assed.'  Trust me, if he were a superhero like Spiderman, 'Half-assing' would definitely be his Spidey Power.

My mom, like most parents I believe, taught me "Anything worth doing is worth doing right."  Even as a child this made sense to me, so I usually went an extra step or two in doing most everything.  So how is it that someone my age, who claims his parents taught him manners etc, makes half-assing (among other things) something to strive for?  I just don't get it.

I find myself each day dotting the 'i's and crossing the 't's, things T leaves for me like I'm his mother.  And the worst of the half-assing is when it comes to a blatant lack of appreciation for something he paid money for.  Never mind, for the moment, the truly important things in life he half-asses.  Let's just stick to the material goods that somehow doesn't seem to be important enough to take care of.  And yes, this is VERY much important.

The sunroom here at this new house is really quite lovely, and through the coldest months and days (which aren't over yet) the boxes containing the large, round ottoman, the plastic bags that contained the cushion covers, and the boxes that contained the cushions sat outside and awaiting assembly.  I can certainly understand maybe not wanting to put everything together while it's freezing outside, especially when there's no promise of milder days in which to enjoy sitting outside.  But now that we've had a string of days in the high 60's and even mid 70's I didn't really see any reason to not assemble the patio furniture and make us of the sunroom.  We moved in while it was cold (November), and now it's time to get things put together.

Over the past couple of weeks I've asked T to put the patio furniture together--something that is REALLY easy since there's no real 'assembly' involved except for attaching the  legs to the base of the big ottoman.  The chairs don' t need assembly, and all of the 'work' involved is putting the cushion covers on the cushions; a relatively easy job for anyone who isn't sick.

I didn't get a chance to see what he'd done until a short while ago, and wow... it really looks like a 10yr old put the cushion covers on.  I mean, wow.  To be truthful, it looks awful, right there on the verge of embarrassing.  It's a mess.  When he came into the kitchen to get something to drink I brought it up to him (he's working from home today), and the only thing he said was... "It was kind of hard to...." I guess I'll have to have him bring the cushions indoors so I can fix them myself.  Won't be easy with all the weakness in my arms, etc., but... I'm willing to try so the foam cushions aren't ruined by being bent and twisted inside the covers.

Honestly, I've known very few men in my life that will spend money on something and not care whether it's going to be ruined or not.  In fact, with it comes to patio furniture, outdoor grills, and yard work... most men I've known in my life care enough to take a great deal and take pride in taking care of and maintain those things.  Why does T half-ass everything, including the yard work?  Well, I honestly couldn't tell you.  It's really a huge mystery to me.  I have to light MULTIPLE fires under his ass to get anything done.  I just---don't---get it.

I've begged T to hire someone to do the yard work, even had to beg him to hire a 'handyman' that can help me with some other things around here.  Why?  Because he won't do it himself without WEEKS of prodding (no exaggeration), and that's IF he does it at all.  He won't even finish the yard work when he does do anything out there, which I also don't understand.  It's not a small yard (the back is relatively small), but it's not a giant yard either.  I'm lucky to get him to mow the front yard, much less take care of shrubs, rake leaves, etc.  I just don't know what to do, short of calling around and hiring somebody myself.

This is really, really stressful.  Among all the other things I have to contend with, this is just so so so draining.  I don't trust him, because he lies to me, outright and by omission, and fails miserably to follow-through with whatever task he begins.  Oh, how I wish I wear at least as healthy as I was about 3-4 years ago so I could just do it myself.  I could get it done.  But I can't.  I just can't.

Men constantly complain about women "nagging" them.  Well, in MY situation, it's either nag (in this case BEG) for things to be done OR hire someone else to do it, someone who will not only get the job done but do it right!

I hate to say it, but I'm poised at this point to take it upon myself to hire someone who can come here and do a few odd jobs, someone else to take care of the lawn that's been ignored.  T has made it clear he's incapable, and I just don't have the strength to keep begging and begging.  Shrubs that were supposed to be trimmed in the back yard in December or January are still untrimmed.

I'm the type of person to get things done that need done.  Everything from making my bed every day to sweeping and vacuuming on a daily basis (I have a Basset Hound who sheds), and making sure to dust (I have a bad dust allergy), make sure dishes are washed or in the dishwasher, cleaning the bathrooms on a weekly basis, etc... those things I've always made sure were done.  I don't like living in a nasty home and it becomes a TERRIBLE stressed to face a dirty house, sneezing and running nose with sinus headaches due to too much dust... oh boy, I can't even begin to express how it just wreaks havoc on my peace of mind.

I don't fault anyone for being a messy housekeeper.  It's not my place to tell anyone or judge.  But when it comes to MY personal living space, my home, and my health... I do draw the line.

For the past couple of weeks or so my eyes have been SEVERELY swollen with black circles, very dark black circles under my eyes, and crippling headaches due to allergy flair-ups that OTC Claritin has yet to even touch.  My eyes are red, itchy and sore, and I haven't had a decent night's sleep due to the congestion.  T offered to sweep and vacuum---which takes approximately 7-10 minutes, literally only 7-10 minutes, but he conveniently 'forgets.'  He forgets even when I've gone through a fortune in tissues due to constantly blowing my nose.  I try to sweep what I can, but it's getting where I can't do it anymore... and I need someone's help.  T promises to help, then he breaks his promise.. then wonders why I don't trust him anymore.

I totally understand oversight.  I totally get being too tired, etc.  But what I have issues with is that he promises to do these things then 'conveniently' forgets...for days and days and weeks.

He doesn't understand at all when I tell him I'm not sure how long I can stay here, with him, in this life.  He behaves desperately when I am blunt and tell him that I'm getting sicker here and need to be around people who care about me, people who can help me now and then with things I honestly can't do myself right now.  He says he can do it, that he cares, that he loves me, etc.  And yet I continue to get sicker with problems that can easily be avoided altogether by taking 7-10 minutes out of his day to help.  If he can't or doesn't WANT to help, then he should say so and allow me to get someone who can.  And yes, I've discussed this with him and used those exact words.

I've told T he doesn't HAVE to help me, that he doesn't HAVE to do anything at all.  No one can make him do anything he doesn't want to do, including me, and I have no desire to force him to do anything.  But it doesn't change the fact that I can't breathe, I can't sleep, that my eyes are horribly swollen and painful and somewhat due to my allergies.

Ever seen anyone in the throes of allergies without the benefit of medication?  Yeah, it's a pretty miserable sight.  And what it FEELS like is much worse than what it looks like.  I'm miserable with prednisone and prednisone-withdrawal symptoms, which include swelling in the face and eyes and many other lovely symptoms, so I do NOT need to add allergy symptoms on top of it all.  Prednisone helps inflammation, even that due to allergies.  During withdrawal from Prednisone allergy symptoms can be FAR WORSE than ever before, and that's what's happening now.  I can't let the dust etc. build up throughout the house because it's making things 1,000 times worse.

Yes, I'm upset.  I feel horrible, and much of what's making me feel horrible can be avoided.  Oh well. I guess I just ask too much, huh?

Time to ask around and search for someone who can help around here with household jobs and yard work.  I'm done waiting.... just done.

Dear God, please make me well so I can be strong enough to take my life back... even if it means leaving here....

Friday Lost Meaning.

Fridays, when you're unable to work or do anything, when you're house-bound by illness (even if temporary) loses its meaning and becomes yet just another day of the week.  It's true.  I'm not exactly sure when Fridays actually meant anything to me, to tell you the truth, and I'm not exactly sure how to make Fridays (or weekends) special again.  Ah, who cares, right?

Yeah, that's kind of where I am today, muddling over the broken artifacts of a life I used to live.

Blah.  Damn prednisone.

Laugher is about the only thing that gets me from point A to point B from one day to the next, and if I can't make Fridays special, I can at least make them funny.  Right?

Yeah.  That's what I'm telling myself today. ;p

Outside of Normal.

NOTE: The font is wonky.  Blogger having odd formatting issues today.

Into my third cup of coffee while waiting for the prednisone withdrawal migraine to subside, I'm considering what my life will be like once I obtain "normal," whatever the hell that is.  Normal has been so absent in my life that I'm not even sure I'd recognize it if it slapped me in the face.  Honestly, who ares about 'normal' if you feel good?  Yeah--that's really kind of where I'm going with this.

At night, or during the day when I don't feel well, I lay down to appease the demands of my body and listen to music in hopes of remembering what it was like to feel well, to feel good, to have energy and vitality--to have ANY energy and vitality.  There I am, in pain, discarding hopelessness when possible.  Depression often wins, and it sure as hell tried to win yesterday and last night.  When did I become so susceptible to the whims of drug-induced thinking?  Since Prednisone, that's when.  I know this, and yet it's nearly impossible to distinguish the difference between what I really feel or am experiencing, emotion-wise, and the effects of my body scrambling to handle things without cortisol. People, I promise you, cortisol is absolutely necessary.

What I need at this time is for T to get his shit together and stop looking at what I'm going through as... well, as nothing.  Fat chance of that happening, which means I'm left to my own devices, and I don't have much in the way of devices these days.  My thoughts on this are pretty basic.  When someone is sick, especially THIS sick, it calls for change... even if temporary.  He doesn't change with the circumstances, and it's creating some serious havoc with my emotions and health.  How the flip do I deal with that?  Ugh.  Okay, so I'm really way off track here...

If normal had a job I'd have to say it didn't show up to work today.  Or yesterday.

OMG, seriously... this is too much.

So if you read my latest entry in "Where Fireflies Dream," you know I'm all about spending my time wisely.  There's no way I'm squandering precious time on foolish things or people.  This is just a fact. When I have a good day I spend that day wisely, and since I don't really have 'good days' at this time it's imperative that I don't waste a second on BS.  And believe it or not, posting in my blogs isn't a waste of time.  I get to speak my heart, share my feelings or experience(s) or whatever; most of the time it really does help me through this difficult period of my life.

But I'm not going to re-visit the whole time issue here.

So okay, Donald Trump (whom I support!) won the NH primary!  I'm SUPER happy about that!  And last night, after the results were announced, I felt genuinely happy and excited, and I still am today.. despite the difficulties I'm experiencing with my health.  It doesn't matter, because at least one really good thing happened; I'll take it!

Okay...feeling like crap so am going to post in my other blogs and go chill for a while.

A Required Miracle.

Finding the strength to not crawl back in bed and disappear each day is becoming more difficult.  Finding anything at all to keep me going each day has become tiresome, monotonous, and a waste of time.  Yes, I realize this is depression talking.  Yes, I know my 'reality' is skewed by depression right now.  Yes, I know I have to not give up.  But is 'giving in' the same thing as 'giving up'?  I'm thinking... no, that it's something very different.  Aside from a miracle where I'm instantly transformed, where my LIFE is transformed, I'm carried with the current of 'what is' and left without the required miracle to turn my current life into something else other than what it is--a disaster.

Yesterday I was pretty shut-down, and today is no better.  Even as I sit here I want SO much to just crawl back in my bed, cover up, and completely disappear.  But disappearing comes with a hefty price, and that price is guilt.  Guilt because I feel like I'm not doing enough as it is and going back to bed, even if I am sick... just feels wrong.  Yeah, I realize that guilt shouldn't be a part of taking care of oneself, but it often is just the same.

I really can't stand feeling like this.  You've NO idea.

I want to feel good, energetic, hopeful, and I want to love my life again.  But how?  How in the world can I actually love THIS?

Crap.  Crap.  Crap.

*sigh*

OMG WW, WTF?

So if you saw my post in my "Boo's Juicy Bits" blog, you have a pretty good idea about where on the scale of frustration my meter's stuck at today.  Really.  As captivating as anxiety and stress is, I think I'll pass on that juicy bit today, thanks.  But dammit, the price is just too high, thanks to Weight Watchers and their constantly-changing diet plan--that used to NOT be like a 'diet' at all!  OMG, WW, WTF?!

I'm stepping past that for a moment in an attempt to get my bearings on things.  I'm working against prednisone weight gain here, and dammit if I don't have to PAY WW to be on a plan that makes little sense these days.  Crap, there I go again.  Enough of the WW talk---what do I do now?

Dang, but I'm tired of that question.

Okay, so is it not apparent that the question never changes from day to day?  Of course it is.  And every evening I go to bed convinced that tomorrow I'll approach things very differently, focus on something different in order to find solutions.  And then every morning I wake up to the same feeling of...

FKThisStupidDayandOMGEverythingSucksAndEveryoneSTFUAlreadyOMG!

Now that I have THAT out of my system...

All I want is to feel better, like a normal, healthy human being, to be able to do what I need to do, to work, to thrive, to survive.  Except, that last part is in opposition to all the other things, like working and junk.  I have to take these serious medications in order to survive, and yet I feel like I'm doing anything BUT that.  WTFAS??

Battling the prednisone bulge, water retention that I SWEAR could sink an intact Titanic, cravings that are absolutely out of this world, and the muscle weakness that absolutely refuses to abate; how's that for a fun time?

Over the last several days I'm dealing with the weakness that makes my arms and legs shake, that feels a whole lot like my blood sugar is crashing--though I know it's not.  My labs, my BG, was great last checked, so I doubt very seriously this shaking is from that.  So what then?  Myositis?  Okay, okay, okay... I did say I was going to focus on something else.  Guess I should do that--find a youtube video or something, anything, anything at all that will inspire me.  Hope.  Ideas.  Possibility.  Even if it's simply learning more about what I am dealing with, and also what other thing (Myositis) I could be dealing with....

Seriously.

WTH?

Finding Me

I'm not lost.  I'm not invisible, though I FEEL that way most of the time.  I know who I am, for the most part.  I can look at my life objectively and see where I've gone terribly wrong.  I have a sense now of protecting my health, my sanity, my life, and I won't allow anyone to derail that.  I've come a very, very long way.

I have a purpose just like any other, and a couple of relationship experiences has taught me that I can't lose sight of the fact that I don't need anyone else telling me I'm worthwhile.  Selfish people will spend a LOT of time telling you you're not worthwhile, not worth their time, effort, love.  And why do we allow this?  The answer to that is different for every person, but the one thing that we all have in common is the TYPE person we chose to bring into our lives.

I'm right here, right now, alive and feeling; I've always been here.  Though a couple of people I had in my life tried frantically to diminish who and what I am, and they nearly succeeded, they FAILED.  I know this because I was able to finally walk away from the situation and felt that terrible, heavy weight lift as I did so.  Even in the absence of real closure I know I saved myself by steering clear.

This situation I'm in now with my health is a big uncertainty in my life and I have to accept that.  I have no idea, going forward, what to expect and have to take things one day at a time, literally.  What little energy I have can't be spent on yet another person who doesn't have my best interests at heart or in mind.  Now, on the surface that may sound selfish, but since my health and life are at stake.. I can't leave anything to chance, nor can I just pour my life and future into someone else the way I had in the past.  There's nothing selfish about taking care of myself, and it's taken me a couple of years to actually believe this.

I don't care if anyone thinks I'm selfish right now.  I do all I can for others as much as my energy and health will allow.  The people who love me understand.  And the people, past and present, who don't love me don't understand at all and stand in judgment.  Thankfully, the numbers in that particular group are ridiculously small.

This is not the time for me to turn my focus away from the very real AI disease(s) I'm dealing with.  Both the one confirmed and the one yet-to-be-confirmed are very serious and require life-long treatment.  No one has given me a prognosis, because there's really no way to at this point.  No one can guarantee me anything, and what they're left with is telling me the possibilities as far as what my life expectancy is WITH and WITHOUT treatment.  I've started treatment, as you guys know.  I've begun that journey, but it's going a lot slower than anticipated.  Still, my odds with treatment are far better than without.  Even knowing THAT I'm given NO guarantees of what will be a year from now, 5 years from now, or even next month.

All I can do is take very good care of myself and avoid stress and anxiety.  And herein lies the biggest problem--my life with T, my past that haunts me... all bring stress and anxiety in like a flood.  Not 24/7.. but enough to make each day just one more opportunity to work my way past that.

Finding myself sounds so damn cliche, and so much so that I cringe just thinking those words.  But it's something I can't ignore.  I'm here, but I don't recognize the person in the mirror, the sick person with the dark circles under the eyes, etc.  It's okay, though.  I know and understand the drill.  That sick person in the mirror needs TLC, patience, understanding, and love.  I'm really pretty much the only one that can provide that.  It's still me in there, looking back...


It's still me in there looking back....

Today

Catchy title, huh?  I'm tired and a little low on the enthusiasm here, so my guess is that things aren't going to be too impressive as far as how I think, feel, or speak.  But it doesn't mean today isn't filled with possibility--because, as it turns out, it is.

The exercise bike is due to be delivered late this afternoon, so that's definitely a positive.  I also have to get blood drawn again and see my hepatologist about tapering the prednisone and increasing the Azathioprine dosages. Today has some promise to it, and I'll take that.  I'll take whatever good comes my way.  Still, I feel the depression trying to take hold, and I'm fairly certain it has a lot to do with the combination of prednisone and just the way things are at the moment in my life.

Today--I have to find a way to rise above it.  I just do.

Have to.

Shhhhhh....

A spa day, really?  No, not really.  Oddly, as bad as I feel I still feel too bad to even THINK about a spa day!  Would be a total waste of time right now.  Not kidding.

When I felt better I used to dream of having the proverbial spa day with all the bells and whistles.  For some reason, after this AIH began kicking my ass the very idea of spending a day doing ANYTHING seemed more like an invitation to torture.  If you live with any AI illness you'd know what I mean.  And not everyone has their asses firmly kicked like this.  But many do, and it actually is 100% guaranteed that if you're having a flare you're also living in hell.  How is a spa day in hell better than no spa day at all?  Hell no.  Not for me.

So I'll wait this out and plan on that spa day in the future.  I will appreciate it much more if I'm not sick the entire time and wanting to go home and take a nap or veg out because I don't feel good and can't think straight.  Yeah, waiting is the best choice, and it will be a far better experience if I do wait.

Waiting isn't always a bad thing, you know.

Predicting Life from the Sidelines

This is a very bad day today.  I managed to post about some news I learned yesterday, but I did so in my other blog.   And yes, I'm still attempting to post in my blogs by relevance.  Still, there will always be overlapping posts.  Having said that, let me say... I feel like crap today.  I really, really do.  I've had some success with drinking more coffee (hey, whatever works!) until today.  Today, I don't think all the caffein in the world will help.  Dammit.

One more cup; this is how I get through the morning.  I love coffee, don't get me wrong, but I certainly don't want it to be the reason I'm sitting upright each day.  Well, I guess today will be the day when I say coffee WON'T be the reason I'm upright, because it's just not working right now.  I have a feeling I'm edging towards being a limp noodle with the jitters.  Dammit again.

I sit here and feel like sliding off the chair onto the floor in a giant puddle of 'screw it.'  But I can't really allow that to happen, now, can I?  And yet I knew, as I always do, the moment I sat up in bed that today was going to suck to the highest possible power of suckiness.  I want so badly to go back to bed, to lay down, to sleep... to just not have to use my muscles to sit upright.. or walk.. or even stand.

I'm sitting on the sidelines of my own life, trying to predict from one day to the next, one hour to the next how much 'life' I will actually have at any given moment.  My body isn't predictable.  What I do or not do today can, and usually does, affect what happens tomorrow, or a few tomorrows.  If I overdo things, I pay for it.  And when I don't, I still end up paying a price for something I didn't even know I was or wasn't doing.  So what's the point, right?  How in the hell am I supposed to know what to do, what not to do, when doing nothing sometimes is just as bad as doing anything?

I'm really not making much sense here.

I've managed to get out of bed, so there's that.

Dammit.

Hello?

Disclaimer: In any of my blogs, especially this one, I'm not always going to post things that resonate with everyone.  Kind of a 'duh' statement, but I feel it needs to be said anyway.  Nothing I write here is meant to be everyone's truth---it's just MY truth.  I don't expect anyone to agree with me and feel the world is a far more interesting place because people have their own views, likes, dislikes, tastes, opinions, etc.  This blog was created for those times when I have to work through things that aren't making much sense to me.  I'm just allowing myself to let it 'all hang out' in order to find my way through the muddle in hopes that, in the end, I'll find some clarity and help others along the way.

FIRSTLY, do realize my sense of humor can be odd, eccentric, strange, and a little 'smart-assy' at times.  ;)

Okay, getting on with it then...

As the waiting game continues with my health insurance company, I'm left wondering if this other health problem will ever be addressed.  At what point to I give up, or at what point does push come to shove?  Either way, my hands are tied because the ultimate authority here is the insurance company themselves, and the only answer they seem to have is 'no.'  But that's NOT what this entry is about...

Across the board, all the actions, reactions, inactions, and infractions are a complex and chaotic mess of being on a corticosteroid and trying to live with the side effects, while simultaneously dealing with life's everyday nuisances.  Who does this make me these days?

I'm still me, always will be me, and I'm not apologizing for that.  Yet I still find the need to assess what I'm doing from day to day just the same, because keeping tabs on my thoughts and behavior is key to keeping some semblance of peace in my situation at the moment.  Do I handle things well right now, the stressors, the anxiety, the depression?  Nope!  But then, this entry isn't about that either...

So what the hell is my point?  Okay, I'll be blunt here---the point is that my tolerance for difficult people has waned considerably under the weight of all that is 'my life' right now.  I mean, yes.. I do have some tolerance, but it's not to the self-damaging degree that it once was in the past.  I mean, if I didn't LEARN something from my past experiences then I'm in BIG BIG trouble.  Thankfully, I'll be okay in that respect, because I consider that the lessons learned had and have an enormous impact on me.

Remember my mentioning that I need to turn my focus on healing?  That message has been quite a common theme in most of the entries lately, though I've refrained from telling details--again; so sorry about that.  Either way, in many respects I'm doing both you AND me a favor by NOT going to in-depth here all of the time.  Still, a part of me says I should.  What do I do with that information?

I need to turn things around.  My thinking, my approach, all of it has to work together in order to affect change.  It takes work, people.  WORK.  If you think you've found an easy way to affect change, my guess is that disappointment is over the horizon, the same horizon where you see the silver lining and believe it's just 'there' and ready to be stepped into.  Using that analogy, think about this: At what point does anyone ever reach the horizon?  No one does, nor does anyone walk right into a rainbow.  The closer you think you get, the further away it seems.

It really does take work to affect change.

Okay, so if you're thinking I sound negative right now, well.. maybe that's true.  I guess the realist in me is chomping at the bit to face things head-on, as unappealing as it may be.  If things aren't perfect or pretty or wonderful or amazing, then they're not.  Identifying and acknowledging WHAT IS gives you the tools to bring about WHAT YOU WANT.  If you don't know the house is on fire, you can't put that fire out.  Seriously.

For the record... I haven't EVEN begun to address what needs addressing... yeah, and this is the reason this blog has the title it does. ;p

Carry on...

The Cocoon of SAFE, Mindless Prattle

I'm irritated at the moment.  I'm irritated because I'm not handling things very well right now.  I get that the message I'm given is that it's very difficult to handle stress when you're on prednisone, that the body's usual defense mechanisms simply aren't in place anymore.  I hear what I'm told, I get what I'm told, but I DON'T LIKE WHAT I'M TOLD.  Yeah, yeah.. go cry me a river, right? ;p

Okay, so I wonder how much I'm going to be pushed by my own body in order to see just how much I can take and maintain my sanity?  When will the insurance company FINALLY approve the medication I need to take care of a serious situation that is wreaking havoc on my body and my life?  It's been over a month now.  OVER a month, and I still can't get the medication approved.  This country, because of Obama, has gone right to hell.  It really has.  And this is only ONE of the ways it's gone downhill.

At any rate, I seem to swing between being completely angry one moment about this, to feeling utterly abandoned in the next.  I don't know HOW to feel about anything anymore, and as long as I have to deal with the symptoms I'm not going to be the most rational or patient of people; it's been going on for too long and I'm flipping tired.

Making demands on me--this is really what I'm getting at.  I need to heal, and while the AIH is being addressed it's simply not enough.  You can't just ignore some things, and this thing I'm dealing with is something that will not allow me the luxury of pretending it's not there, happening, and ruining my life at the moment.  And no, I'm not being melodramatic here.  It's the truth.

Now, I will admit one of the biggest mistakes I've been making is spending WAY too much time on social media.  My bright idea was to avoid watching too much tv, and in doing that I've replaced tv with reading political articles, reading and getting caught up in tweets on Twitter, watching the disconnected posts flow through my FB feed.  I can admit that's a dumb thing for me to do.  And what can I do instead?...

Well, I know what I should do, so it's not a matter of ignorance but rather bad choices.  I'm aware.  Instead of getting caught up in all the political hot-headedness or trying to amuse myself with funny pictures and such... and we all know this is the bulk of FB posts these days... I should be turning my focus on what I normally do, and that is to seek information on how to make the best of what I'm dealing with, finding new ways to see my situation, and read more about what others do in the same.  While I have sought information and such, I guess I've found it's not helped me as much as I'd hoped. Maybe that's why I'm distracting myself with all of the other crap.

I need to take about 20 paces back from FB, from Twitter, and from reading all the political crap out there.  Yes, I want to be informed as these elections coming are VERY important, but there's so much hate and nastiness in what people say these days that I find it hard to read and maintain a good, happy, frame of mind.  So that's one thing that I need to change.

Another thing is to avoid people on FB who seem to make it their life's mission to comment with negative crap on my posts.  I mean, damn... grow up.  If you don't like my point of view, disagree with me, etc... then just move along to the next post in the feed and ignore mine!  It's not THAT hard to do, is it?  And I know one person in particular is doing it.. because he can.  He doesn't try it in person, which I find rather amusing, but he gets down right offensive and rude when he's hiding behind his computer.  I normally just shrug it off and roll my eyes when he does this, but lately he's taken to insulting some of my friends in the military, including veterans, and that's where I draw the line.  At any rate, this is the sort of thing that happens when you post anything of actual substance on social media.  Here's a fact: People aren't really interested in what you think, feel, or believe.  What people are actually interested in is cocooning themselves in SAFE, mindless prattle that means nothing.

And yes, this is relatively isolated to one particular person, so that makes things easy for me in terms of what to block him from.  Honestly, I'm not sure that FB allows that anymore, blocking certain people from particular posts.  Either way, enough of the BS on FB.  If I find a way to block him from my posts.. it's done.. ACCESS DENIED!

Now that I got THAT off my chest...

Random Thoughts at 3am

I had to make that meme.  I suppose it's just that one goofy part of me (sense of humor) that refuses to buckle under the health issues.  Yeah, I'm just ninja like that.

ANYHOO....Insomnia is a fickle bedfellow these days.  Incredibly unpredictable, I never quite know what it is I'm facing when I get into bed each night.  There's something triggering me to wake up when I go to bed, but I've yet to pinpoint exactly what that is.  Even nodding off on the sofa prior to going to bed doesn't guarantee I'll sleep once I get there, and in fact... it's almost a given now that I'm going to be waiting up, tossing and turning, until the wee hours of the night.  And what does this do besides keep me tired and exhausted?  For one, I get strange dreams, ones I really could've done without.  No, not nightmares... just dreams.  But still...

So it's 2am, 3am.. and stupid, random thoughts pop into my brain, which triggers more thinking, thinking, thinking... blah blah blah.  Damn.  Seriously.  WTH?  Most of it isn't even worth thinking about, I promise.

Okay, so falling back asleep this morning in hopes of getting about 5 hours I had a dream, and one that puzzles the crap out of me.  Well, I suppose most dreams don't make sense, right?  They're usually random babbling and broken intel of things we are either not dealing with, dealing with poorly, or unaware that we need to deal, you know, with those things.  But what about those dreams that aren't as chaotic and confusing?  What about the dreams that leave us thinking.. "Wow. That was so REAL!"  What about THOSE dreams?  You know the kind I'm talking about.

If your dream makes sense, what's the message?  That's the big question, isn't it?

I'm not sure what to make of my dream.  The content, which I'm not wanting to talk about, I think I understand, but my REACTION to it is yet another thing entirely.  It made me sad, seeing what I saw in the dream, though the actual thing happening wasn't a sad thing at all.  So.. wth gives?

Sorry to be vague about the dream itself, but some things are just TOO revealing of my own thoughts and feelings, feelings I'd rather keep to myself.  I'm trusting my instincts on this.  I may actually talk about this stuff in detail at some point, but I prefer to wait until I'm ready.  Hope you guys understand.

The other crazy thing that's happened today, post-dream, is that I feel a little anxious about my future.  It's like I'm being forced to assess what I want and how I plan to go about getting what I want, in terms of my future, happiness, health, and so on.  I don't have the luxury of being on auto-pilot, so introspection and continually assessing where I am and where I'm heading is really important.  T is more of an auto-pilot type, and it's not always easy for someone like me who's trying to take the wheel of my own life to be around someone who's just, well, letting life happen to him.  Not to say that his life is bad, because he's really chill and content most of the time.  I like to see where I'm heading, though, so laying back and riding the current isn't going to work for me right now.  Not sure it will ever work, to tell you the truth.

I wish I knew what my subconscious was trying to tell me.  I have a guess, but I don't LIKE that guess so am keeping an open mind and hoping I'm full of it. ;p

That's a lot of writing for someone who's as tired as I am.  Sheesh....

Back on Track: Let the Spewings Commence

Now that I've gotten a few things off my chest today (lol), I can take some time to be randomly random.  Ha! I guess I'm just not feeling right today and am going with where this off-feeling takes me.  Why not?  It's not like I have a big day planned or anything.

Okay, so to tell you the truth I'm fighting the urge to go lay down and take a nap.  Naps in my case are a VERY bad idea, because it just invites insomnia come nighttime, something that I have to deal with even with very little sleep.  And guess what happens when someone loses a lot of sleep on a regular, ongoing basis?  For starters, your perception of things become a bit warped.  Yeah.  It's true.  I mean, sleep deprivation is one of the seven altered states.

At the moment things feel completely 'off' to me.  I'll eventually go watch tv, because it's a fabulous distraction when I need one, but I won't say I'm looking forward to it.  Why?  Well, because I have things to do, and it just feels wrong to sit there staring at the tv set when I could be doing something that would make my day more productive.  That is, IF my body would ALLOW me to do something, anything at all but be in a sitting or reclining position; something I'm not particularly fond of, btw.

So this is how it looks when my brain is as tired as my body.  No, really.  It is.  Coherent thought goes right down the toilet, and in its place comes the ramblings of an extremely tired mind.  While on one hand it's frustrating for me to not get my point across, to not know where the hell I'm going with any of this, on the other hand.. it's funny as hell.  Well, I'll look back on this post on a good day, snicker a little, shake my head, and laugh at the attempt to make some sense. ;p

And this, in effect, dear friends.. is the crap I spew. haha.  Hey, if I can laugh about the bad days, then I really think I've got a good chance of surviving the weirdness after all.

...more spewings to come...when my brain is back on board again. ;)