The crap I shall spew today.

This is where all the extraneous crap ends up.  When I've spent time on my other blogs and attempted to focus on specifics, what I'm left with is the need to just get stuff off my chest, even if it makes absolutely NO sense whatsoever.  Aren't you glad you're here to witness that?

More than a few times lately I just wanted to distance myself from almost everyone.  I don't need fair-weather friends or relatives (kids, etc. excluded) because I'm sick of trying to edit what I think or say or feel or whatever---to ensure the comfort of someone else.  If you don't like what I have to say, if you don't agree with my beliefs or opinions, if you have nothing at all good to bring to the table, if you're intolerant and closed-minded then just don't come to the table.  It's not rocket science, I promise.

*sigh*

Just speak your mind, and if it's opposing views, just use respect and courtesy.  That's all.  Nothing fancy.  Respect and courtesy go a long way, especially with me.  It's okay if you don't agree with me, just be respectful when disagreeing.

Good grief what a day.  Some people simply suck at communication.

smh.

The fireflies have returned...

I often see them outside the bedroom window at dusk and in the dark.  Sometimes one will cling to the outside of the window sill... and just blink... almost like it's saying hello.  The whimsical part of me remembers better times, before the pain and weakness, when I would go outside and just stand there among them.  There really was no place or experience more peaceful.  Now, I watch from afar, wanting desperately to be a participant again... in life.

Not sure when or if I'll ever be 'normal' again.  I'm losing hope, I have to admit.  My own light flashed brightly then.. simply went out for the most part.  And here I am, waiting in the dark, just waiting for those with the power to help me heal to... help me heal.

I waver these days between hope & depression.  And, there aren't any 'up' times at all anymore.  This severe pain, worse than anything I've ever known, has literally taken over my life.  Now, my life is measured, literally, between those doses of Tylenol... as I wait.

I've sent up the flare....

When I'm without words, music...

When I'm without words, music....

DNA RESULTS! OMG!! THE SHOCKING TRUTH!

So I did one of those DNA test things where you find out what the hell you are exactly.  And, as suspected: 70% Great Britain, 17% Ireland, 4% Italy/Greece, 3% Europe East, 2% Iberian Peninsula.

I won't go into the 'trace' nationalities because the margin of error can mean it may or may not apply.

One thing is for CERTAIN though---I'm probably the whitest chick you know!  lmao! So in honor of that, I give you this! ;p

Not really dealing with this well at all.

IWhere Fireflies Dream So you can view it all there.  BUT, I will be posting more here in a few minutes.  But yeah.. it's been one of THOSE days.
've pretty much said it all on my other blog

I'll be back.  No, really.  I will.

Is THIS my new "normal"?

And what I'm left with in the end is--not a single answer, solution, nor any real strength to wait until the next step reveals itself.  Over the span of more than a month now, ever since titering off the prednisone, my body has become my worst enemy.  It's weak when I need strength, it's 'loudly' painful when I need peace, serenity, rest.  And for the life of me nothing seems to get better as the days pass one after the next.  Nothing, it seems, is working.

There is hope, right?  People always say "There is always hope."  But the time for continuing to believe in something that has yet to be true--is coming to an end.  Once again, though most want to help, doctors are throwing up their hands and telling me--they don't know what to do, what it is, or how to help me.  I still have one last appointment, with an endocrinologist this time, who may be able to help.  Is this going to be my last hope?  I don't even have the strength to ponder that question.

So in this "New normal" of mine, real life doesn't exist.  Nothing beyond the windows means anything, and all inside this house can continue to collect dust in it's blooming irrelevancy.  Honestly, I've never experienced ANYTHING like this before and don't know what it is I'm dealing with.

I have no appetite whatsoever, and food doesn't even taste good anymore.  You'd think I'd get some benefit from that, like weight loss.  But no, thanks to the prednisone after-effects I can eat less than 1,000 calories a day and not lose a single ounce.  yay.

You're probably thinking "Oh, that sounds just like depression!"  Well, perhaps.  Except.. depression makes it so you don't WAN'T do do anything, go anywhere, and while it comes with physical pain, etc... what I'm dealing with isn't quite like that.  Oh, I GET depressed--but who wouldn't?  My mind and spirit WANT'S to do things again, not spend most of my time in bed (literally), wants to go places, take my camera and explore, and have at least an ordinary life if not an extraordinary one.  The DESIRE is there, buried deep beneath weakness, fatigue, pain, nausea, and so much more.  It's there, but it's being held hostage at the moment.

My life now, day by day, is marked by two thoughts: Morning: "Maybe today!"  And evening: "Maybe tomorrow!"

Is THIS my new normal?  Is this all there is, all I have to look forward to?  Will I ever feel good again?  Will I ever feel anything but pain, fatigue, and discomfort?  Will I ever have JOY again?

Will I EVER feel good or experience joy again?  Will it always be about pain, misery?

Will I really have to spend the rest of my life feeling like I have the worst case of the flu 24/7?

Will I ever... get answers to those questions?

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.