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.

Trump Supporter Kambree destroys National Review

I'm posting this across my blogs, because this woman speaks for SO many of us.  The original video she made is a lot longer than this, but this gets to the key points directly.  She speaks for SO many of us....

Random Thoughts at 3am

Random Thoughts at 3am: "I wonder if I'd look good in a sombrero?"

Yeah, well... if you're waiting for me to explain that one, you're gonna be waiting a LOOOOONG time. lol  It's an insomnia thing.

About that hat thing---yeah... NO!

Still, one has to wonder where these random thoughts come from.  Me?.. I'm not sure I want to know...

As it stands right now, I'm going to resist the urge to buy a sombrero and take a selfie.

Adios!

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.

Labs Post-Prednisone & Azathioprine

So looks like another medication is being added to the list--Lasix, a water pill.  This is needed to reduce the amount of EXCESSIVE water retention caused by the Prednisone.  I'm really glad to know about this addition, though it's going to be rough heading to the bathroom constantly.  Oh... but I'm SO very glad to do so!  You've NO idea.  But there is other news as well...

Liver enzymes: At the start my liver enzymes (which is NOT a liver function test) were elevated some 7-8 times that of normal, depending on which end of normal you do the math from.  Considered by the doctors I saw these were considered "significantly elevated."  Some people have way more elevation than that, but apparently research says that the actual numbers don't always indicate prognosis or how significant the disease is at the time of diagnosis.  But today, thankfully, I'm told that the one enzyme that is still elevated is only elevated by a little now and "Much better than where it was before." YAY!!  That's good news!

While I have to wait to get the labs actually in my hand to SEE them, I was also told that some tests came back showing mild muscle inflammation.  Not sure which test that was, but it doesn't really surprise me.  I have labs rechecked next Monday also in order to make sure the Azathioprine is helping, and not hurting things.

Good news, right!? :D  And hey, as long as those numbers go down and into the normal range, I can deal with some side effects from Azathioprine.  I mean, as we go along this journey the prednisone will be tapered... and THAT is DEFINITELY a good thing!  Not treating AIH means possible progression to cirrhosis.  Only thing statistics say about this that I don't like much is that 80% of people who go OFF medication to control AIH have a flare up within 1-2 years, and it often comes with the nasty addition of fibrosis or cirrhosis.  Yeah, I'm okay with medication inconveniences over death, thank you. ;)

So what's the deal with muscle inflammation?  I've no idea.  Guess that may be addressed next... we'll see.

How's that for some good news? :D

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...