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...

Perseverance is Determination on Crack.

On occasion I'm reminded of just how little my mind is okay with what's happening in my life.  Sometimes it reminds me that those things I can't do at the moment are weighing heavily, and so heavily that I'm struggling to maintain on a daily basis.  While I understand that this won't be forever, my being so damn limited, it's still wreaking havoc in my waking hours, as well as in my sleep.  How to get past this and find peace is going to be a process, and one that will require much patience on my part.  And oh, but I don't have much patience these days.

I'm not willing at the moment to go into details, and mostly because I just don't have the energy for explaining everything.  All I know is that my physical limitations right now are driving me crazy, anchoring me to this house, and preventing me from ACTUAL living.  I can't engage in anything these days and have become mostly a non-participant in my own life.  How the hell is that going to work as I wait out the too-slow process of 'normalizing' my health?

Perseverance is determination on crack.

I fuel the fire with caffein in the morning, then take to my bed when my body can no longer handle sitting upright for any reason.  My days are measured and sliced by how many times I have to lay down in order to get back up.  Yeah, you heard that right.  If I do even one small task that requires the most minimal of effort I'm wiped, totally wiped of energy, stamina, and I'm laid out for a few minutes---to hours.  I never know what I'll end up with, energy-wise, strength-wise until I'm done doing whatever it is I need to do.  Oh, and those tasks that drain me... they often consist of just walking from one room to another.

Now, I will say that I believe a lot of this is because I'm coming off prednisone and at a relatively fast rate.  The damage of being ON the stuff has concerned my liver specialist, so he wants me off asap.  This happens with consequences.  The immunosuppressant I'm on... Aza (aka Imuran/Azathioprine).. is on board enough now where it should be helping me come off the prednisone with few side effects.  Problem is, I'm sensitive to medications, always have been, and I tend to get most of the side effects.  yay me. NOT.  It is what it is.  Either way, I'm trying my best to persevere and not give up, despite the side effects and discomfort and depression.

I'm trying....

Focus, Please.

Reaching for something to focus on when you don't feel good is probably one of the most frustrating experiences ever.  Well, that is for someone who doesn't have a support system.  With family and/or friends involved, dealing with the known and unknown of chronic illness becomes a little more bearable in that there is always a soft place to fall.  I mean, anyone who deals with autoimmune disease know that falling isn't an option, but an inevitability.  Not accepting that as a fact means being blindsided when it happens.

Nope, I'm choosing to have my eyes open.

That fleeting sense of good health isn't enough to sustain me, and those temporary little flashes of what once was don't occur often enough to sustain me.  This is my new reality, for now, and it leaves me with not much of anything to focus on, anything to sustain me, anything at all to give me that emotional fuel to keep moving forward as quality of life diminish.  Oh, it's not as depressing as it sounds, because I've only just begun treatment and have yet to see where it takes me.

Escape is the only thing I have at the moment.  My methods are at least reasonable, providing me with enough distraction to carry me through the day.

Coffee, which infuses something akin to 'energy' and 'wakefulness' to start my day.
Music, the vessel in which I use to retreat when the weakness is too much.
Reading (Kindle), when I need to turn my mind completely off to what's at hand.
Sleep, which now gives me little respite.

Lack of focus brings the need for escape.

Oh, don't get me wrong.  My every waking day is filled with one real focus in mind, and that's eating right, getting a handle on the Prednisone hunger and other sides, and remembering that I have to get back to me again, to SOME semblance of health.  What I need is what comes with true focus, and that is the driving force that takes us along that path to our ultimate goal.  Without that energy and vitality focus fades and the lines between what I want and what I'm going to get begin to blur.  And trust me, it's not good when this happens.

A few mantras run through my mind every single day, and the dialogue rarely changes.  At times I give in to those random thoughts that this is it, this is the REAL 'New normal' and I can't fix any of it. There are times when I want to give up COMPLETELY and just let whatever happens happen.  There are times when pushing myself so hard to do simple tasks just drains me, and the world shrinks away from this very small space in the world of which I've unwillingly taken up residence.  In those hours, and they are hours, the despair is real, the weakness is real, the waning health is real, the isolation is real, and the realization that I'm NOT in control is very, very real.

And then suddenly denial sidles up, elbows me and says... "Are you sure?"

The only thing I'm sure of is that I'm caught perpetually in that swinging pendulum that smashes against acceptance and denial.  And honestly, I latch onto denial more often than not, and I'm pretty damn sure that's not the smart thing to do.

Confusion in all of this sucks.  It just sucks.

More research.  Continue treatment.  Say the enemy's name and say the words out loud if necessary....

Not Today

I guess after spending the morning trying to write in all of my blogs I'm left with very little.  Hell, I started with very little.  Even so, I'm trying.  I have to be able to look back and SEE where I was so I can assess where I am.  This is all for a reason, all of this talking and contemplating, all the raging and wondering and wishing and... well, it's all for a reason.  Still, I would like to just stare down the crap I'm dealing with and say... "NOT today!"  Yeah.  If only.

My mind is trying very hard to still be 'me,' which means there's SOMETHING still here I recognize a little bit.  If only for a moment I can feel that spark, dulled by illness it may be, struggling to ignite something within the deepest recesses and protected by a very stubborn spirit.  I refuse to let go and give in.

My body, however, has other ideas entirely, and it sends the warning signals with any attempt at doing anything remotely 'normal.'  Don't move, don't clean, don't walk that much, don't pick that up off the floor, don't... just don't.  *sigh*  Enough already!... is what I really want to say.

I have to listen, though, because when I don't I pay big time.  It's hard to accept this state of bad health I'm in, though I do know and accept that it's nothing I did, nothing I didn't do that caused this to happen.  Autoimmune diseases are no one's fault.

I'm so incredibly tired...

Okay, body... YOU win today.

A Little Smartassy... because I can

Ha!  Okay, so I'm just pushing myself through this day so far, doing some research as to the oddball things on my recent labs (just got the copies yesterday afternoon), and honestly just too damn tired to do anything productive.  I'm breathing!... what more do you want? ;)

It's just one of those "Screw it all!" days, the kind that makes me feel like all I really want to do is crawl back in bed and cocoon myself in my favorite blanket.  Yes, I CAN do that, but my mind wouldn't allow me to be quite that lazy.  I've not spent my life as an idle person, but when I started getting sick.. everything changed, hugely.  Now, my brain still thinks I'm energetic, but the body says.. 'Aw, HELL no you aint!"

Whatever.  I'm getting through this day best I can, and that's all I'm capable of at this very moment.  At least, for whatever reason, my arms have stopped aching.  Still very weak, hard to stand, walk, etc... but hey, I can still stand and walk, so I'm good.

One of thethings I do when I'm not feeling up to par (to put it mildly) is allow my inner 'smartass' to come out and play.  All in good fun.

And honestly, I should be adding this in my other blog "The Crap I Spew," and I mostly likely will repost in that one... because I can. lol  See?  I'm really trying very hard to step away from not feeling well, and if smartassy me can help, then by all means...!

So in all fairness, this is a coping mechanism.  The reality is that laughter DOES help, and most of us usually benefit from being a little crazy now and then.  Honestly, it doesn't matter in what form your crazy comes in, as long as it doesn't do any harm to you or anyone else.  I mean, we gotta keep it real, right?  There's crazy, and then there's "CRAZY." ;p

Another thing I like to do is post random thoughts, you know, from those 3am wake-ups that happen for no damn reason...

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

.
.
.
.
Yeah, I'm not gonna try and explain that one.