MRI, Lab Results, and Fireflies!

The problem with my shoulder has gotten much worse and I'm pretty much unable to use my arm for little more than simple tasks... such as typing.  I was referred to bone doctor, who sent me for an MRI, which was yesterday.  An hour long MRI... did not sit well with my body at all.  I won't go into all of that now, but... now I wait to find out if it's a torn rotator cuff, which the bone doc thinks it is.  So much for that.

I also received a call from my PCD about some labs that were done about a week ago, and I'm once again being referred back to my hematologist.  Ugh.  The last time was about a year ago and was  for low ferritin (anemia).  I received iron infusions for that and was fine in that respect, and my ferritin levels were restored to normal.

THIS time, my ferritin is elevated.  Again, the last few tests it was right in the normal range where it should be.  I don't eat much red meat (not a big fan and prefer a plant-based diet), and any protein sources usually include chicken and fish mostly, and on occasion... red meat.  My multi-vitamin does NOT contain iron because I'm in pre/meno so well, to be blunt, I don't get any visits from Aunt Flow or Uncle TOM anymore, not in almost a year now.  No need for iron in vitamins when this occurs.

Anyway, so... I have to see the blood doctor to find out why.  Not sure if timing is the key here, or if this is just a really good indication that I'm NOT dealing with hemochromatosis, which is iron overload.  I don't believe for a second I have that.  But it still is almost always due to liver issues.  Ugh.. which most of you guys know I already have (Autoimmune Hepatitis, or AI).

Thankfully my ferritin level is only mildly raised... but I was told it's still needs attention because it means my body is absorbing more iron than it should.  I do have to say I find this odd since I really do eat very little meat.  No telling wth is causing this, but... another wait and see situation I guess.

On another note---FIREFLIES!

I've seen a few of these little guys flying about lately, but there were MUCH MORE yesterday.... and that's beyond awesome!  I DO NOT EVER, NOR DO I THINK IT'S OKAY to catch them in a jar!!  They're population is dwindling---a very sad fact---so in the very short season of their lives... let them live!  They have to have firefly nookie to maintain their population!  lol Well, it's true!

So my front and back yard is covered with them in the evenings... and, the big light at the end of the driveway is being turned off.  It's billed to us, so we can choose to have it on or not.  We're choosing NOT to have it on due to artificial light hurting the mating process of these amazing creatures.  We also don't over-mow the lawn so as to allow as much of the population to grow as possible.

I.  Absolutely.  LOVE.  Fireflies.

Nothing is ever easy--nothing important anyway.

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.

Home.

One thing I've known for certain for pretty much all of my life is that when I'm ill, I long for home.  When I was little I knew where that place was, and despite its terrible flaws it was still home.  As an adult I was surprised to find that I no longer knew exactly where home was.  So I would spend the majority of my adult life longing for a place that quite possibly, for me anyway, doesn't exist.  I've never been able to reconcile this; not physically, and certainly not emotionally.

The closest I've come to being "Home" once moving out of my mom's house at 18 is Mobile, AL.  I had a tiny little apartment, and though not every moment there was perfect, it felt safe, and it felt like a warn welcome every time I walked through the door--no matter how good or bad things were.  It was a safe place for me to be myself, where I could decompress, where I could dream, wish, hope and feel alive.  This is not the case where I am now.  Not even close.

How did I get here?  I got here the same way I got into every bad situation in my life; By pure blind trust.  It's a flaw of mine and one that's gotten me into more trouble than I can tell you.  I give people the benefit of the doubt, take them on their word, and actually believe what they say.  Well, to a point anyway.  The thing is, that 'point' in which I pivot and see the error of my ways is usually far too late to avoid any damage to my life, and to me.

I'll probably always be this way, a far too trusting person.  I'm okay with that, I guess.  But I really wish I were better at assessing and discerning the heart and motives of people BEFORE I get involved.  We all have our flaws, I suppose.

As I wait for the sluggish process of diagnosis beyond the AIH, I'm left far too vulnerable for my liking.  There are days I can't walk well, verging on not at all, and days where lifting my arms to look at my phone is almost too much.  The weakness grows more each day and the doctors I need to see are weeks out of reach since I'll be a new patient.  The waiting is going to end me in the ER at some point, I'm afraid.  But the worst of this is being this sick and living in a place where I know absolutely no one at all.

T only helps around here bare minimum, and as the chores, etc. pile up... I long for the simplicity of the life I had in Mobile, where I didn't have to clean up after another human who refuses to do what's necessary to not live in a dirty, cluttered house.  I can't live this way, so I struggle to pick up the slack.  And I'll tell you, the slack is far far more than what T actually does.

How the hell did he survive on his own?

I have to somehow find my way home--wherever that is.  I know I can keep struggling a little bit to find my way here, to at least hang in there until I'm better---or at least better enough to survive, to move, to do something to help myself.  At this rate I don't know if I can work, which scares that crap out of me.  Disability requires a definite diagnosis, and at this time I don't have one that explains fully how I'm continuing to weaken and become more and more sick.  What can I do if even typing an entry like this makes me shaky and nauseated with weakness?

I want to be well again, to feel good again, to have energy again.  I want to be in a position where I can find my way back home again.

Home.  I just want to be... home.

"You're allergic to yourself."

Not going to be easy catching up, but I'll give it my best shot.  I spend most of my days in bed, sleeping, or waiting for tylenol to kick in and 'possibly' help with the pain.  Weakness is now stronger than my willpower, and fatigue is my constant companion.  I don't have much energy to type, or even sit at the computer long enough to.  So I'll try and get with it...

Appetite is all but gone.  Still not feeling actual hunger but increased weakness and headache that tells me I should probably eat something.  I usually have yogurt in the mornings so I can take medication, and I find myself full after just a few bites.  I've no idea why this is, why diminished appetite and early satiety is back and worse than ever.  I just know that it is.

Had my every-six-months echo on my heart about a week ago and just got results back.  I'm looking for another cardiologist at UAB, because the one I have now doesn't really discuss anything with me, especially changes.  I'm not okay with that given my family history and the other issues with my heart.

In six months time, since my last echo, my aortic valve has developed stenosis (none was found last time with echo or cath).  It had "trace" regurgitation last time, and now it's to the 'mild' level. Doesn't sound like a big deal until you realize that even this small change happened in 6 months time.  It's a watch-and-wait situation like my mitral valve issues.  Yay. Not.

You guys may remember I had a heart cath a few months ago.  This is when they found the mitral valve regurgitation had progressed.  The report had no mention of stenosis, but if there were any it may not have been worth noting perhaps (just guessing here).

So given changes, and the recommendation to now have echoes every 6 months instead of yearly, I would think the dr. would be a bit more, I don't know, forthcoming to at least explain to me about the changes and what they do or do not mean.  I sure wish Dr. Dewan was still my cardiologist... but he made a career move out of state.  Dammit.

Also went to an allergist.  Now this was the most surprising thing of all---after testing me for everything under the sun.. I'm not allergic to anything. lol  All the sneezing and sinus issues are merely seasonal changes and not from allergy.  Sounds like the same thing, but they're not at all.  This appointment was 3 hours long and with a LOT of discussion.  Doctor isn't just an allergist, he's also an immunologist.  After talking to him about everything that's been going on, the AIH etc, symptoms, etc... he spoke to me about the possibility of a Myositis problem (sounds familiar, huh?), OR Lupus.

He said, and I will quote him: "You're allergic to yourself."  We laughed about this a little, but he says that a lot of my nose and skin issues, that almost appear as allergy reactions, are most likely an autoimmune reaction.  The pink cheeks, that aren't normal for me, he says may be an indicator of Lupus as well.  Apparently, according to him and other research, Lupus is something that isn't really found during lab work via AI antibodies etc., although SOME people with lupus have that show up.  Many, most in fact, who have it don't have that show up in their blood until the disease is years progressed.

Oh, as an aside--I got a breathing treatment while at the allergist's office.  I was wheezing like crazy and the treatment helped!  I had a somewhat wet cough for a few hours, but dang... that was awesome! Not from allergy though, the wheezing and dry cough I have.  Lung issues.. yeah, there's still that.  Anyway, back to the point....

Now I have to see another rheumatologist, and an endocrinologist (because of prednisone withdrawal), and well.. that just sucks.  SO many doctor appointments.  I'm absolutely worn out.

Well, time I left this blog and attempt short entries on the others.  Honestly, my muscles are aching terribly just from typing.  When the hell will this ever get better?  :(

MIA

The last several days have been fraught with a fatigue and weakness unlike anything I've ever known.  Basically, for the last several days I've been pretty much bedridden, only able to sit up for a VERY short period of time.  Painful, tired, and weak, I spent what little time I was awake researching if there was a medication I was taking that could be doing this.  What I found was across the board complaints about every drug I'm on.  Narrowing things down to a time frame when I began getting worse I found that cessation of Prednisone and AZA kicking in were likely the culprits.  Here is where things get tricky...

Prednisone and immunosuppressants are the go-to protocols for nearly all autoimmune diseases.  At the highest dosage of 40mg/day I felt amazingly well, energetic, and somewhat strong again.  It was about as close to 'normal' I've felt in years.  With the first taper I began to feel badly again, but eventually had to come off with a slower taper which ended about a week ago.  AZA (Imuran) was added along the way and is something one is kept on long-term to stave off flares of the disease, in my case autoimmune hepatitis -- don't confuse this with visual hepatitis (hep C for example).  This is an autoimmune situation in which my immune system thinks my liver is a foreign body that needs, well, killed off.  Overlapping AI disease is also suspected here, but symptoms cross over and overlap to the point where it's difficult to tell what else is going on.  Myositis or Sarcoidosis are suspects here given my aldolase was highly elevated more than once, even on the medications.  It is within normal range since taking the imuran in higher doses.

FAST FORWARD...

I don't know which is causing this horrid weakness and fatigue, and other symptoms as well, so I opted to call the doctor to TELL him I'm stopping the AZA for a time to see if that's the culprit.  His response was agreement, BUT he wanted me to restart the Prednisone at 60mg per day!  I told the nurse on the phone, who relayed the message to me, that I wasn't going back on prednisone because the side effects were intolerable and it causes so much weight gain, which I've just now begun to lose.  I'm not going back.  She said she would relay the message to the Dr.  I have an appt with him next week and know I'm going to have to give push-back because I'm UNWILLING to take prednisone again.

I've just stopped the AZA yesterday and am not doing well as I'm still weak, fatigued, and wanting to sleep most of the day.  I have a feeling some of this will improve as the AZA leaves my body.

I know the risks.  I know and accept that I could have a big flare of AIH and my liver could be damaged because of it.  But here's the thing: I have to wage longevity with quality of life, and in doing so have come to the conclusion that I simply can't have both.  I'm choosing quality over quantity.

And hey, for all I know it could take a couple of years before I have a flare again.  But as for any other AI disease going on, be it Myositis or Sarcoidosis, no one has given another diagnosis as of yet so there's little reason for me to worry about those possibilities.  Having been on the treatment protocol for those, because it's the same as AIH, it's going to be tough trying to diagnose either due to my taking prednisone and AZA for this long.  Even so, all I can do is see how it goes moving forward.

I'm actually quite surprised that I can event type, because the last several days I've barely been able to hold up my iPhone while laying in bed due to the weakness.  You've no idea how bad the weakness is.

Another thing I have to deal with, which I'm not sure is a bad thing, is the loss of appetite.  I mean, I've gone back to FEELING that I need to eat, where my body gives physical signals that I may need nutrition but don't have actual HUNGER.  Also, this is the third day where it's not just a lack of hunger but also very early satiety.  I've been taking in less than 1,000 calories a day, which I will pay for dearly if I'm not careful, especially if I'm dealing with Myositis.  But that's another talk show.

So for now just know I have to play it by ear and see how I feel, because I may not be able to post here every day---though I do hope I can because that means I'm either feeling better or one tough chick for posting when I feel like I'm going to fall off the chair any moment. ;p  C'mon.. that was funny.  See?  My sense of humor shows up every now and then.

How am I managing through all of this?.... well, I have to admit that's a whole other talk show....

I can hear it in my dreams.

What was.  What should be.  What was lost.  What is.  An unsettling representation of what I'd rather not think about, a rejected idea of what life is supposed to be.

I sometimes see images online, hear stories from people, stories that pique my curiosity in that I see and hear I can't connect with in any real way.  "So this is life?" is the outcome, the question that remains unanswered but accepted just the same.  My reality, my life doesn't in any way reflect what I see out there in the world.  This kind of thinking only leads to a pointless series of "What if?" scenarios that didn't, nor will ever, ever happen in what remains of my lifetime.  Such a useless response, isn't it?  I definitely think so.

I've gotten to where I really hate dreaming.  I hate waking up from them even more, to be honest.  Again, I find them completely useless.

Damn.  When will the clouds lift?

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....

The Status Quo.

It's been a week, and this entry is going to be brief and probably more than a little boring.  My goals, as I've spoken about often, are to purge thoughts, etc. in my blogs.  As of today my thoughts are fairly off, meaning I'm having trouble really understanding what it is I need to talk about.  This dullness becomes the color of all of my life these days as the prednisone withdrawal wreaks absolute havoc on my body; This is the worst thing I've gone through to-date.

While I know that withdrawal will bring miserable consequences, ones that often can't be avoided, the possibility that there is something else going on is [possibly] evident in what I'm experiencing.  Could it be that the withdrawal symptoms are simply symptoms of some other unknown problem yet to be discovered?  My liver Dr. seems to think so.  But damn.  I can't deal with this much longer.  Someone needs to get on finding out what the hell is kicking my ass SO badly that I have no quality of life anymore.

As I type this entry I have to lean my forearms on the laptop, putting my arms at my sides often as well because I simply cannot hold them there for long.  This weakness is hardly tolerable on any level.

I'm simply too weak to keep typing... just wanted to check-in...

This is really getting ridiculous.

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...

This is one crazy ride.

Seems like I spend most of my time in speculation regarding my current circumstances.  If there were any other direction in which to channel my focus I would certainly do so.  I mean, no one likes to be bombarded by the kicks, knocks, and out-right punches life sometimes dishes out, and when these are broken by even an occasional time-out then... well, rest and recovery is the only real way to make withstanding the worst possible.  Not to say we're destined to buckle under the onslaught, but it certainly makes it easier to get back up when you have the strength and clarity to do just that.

I'm a bit lacking on the strength and clarity thing these days.

Introspection is the name of the game these days, and I've gotten pretty damn good at being able to look at myself and ask the right questions.  The answers to my questions, however, are a bit harder to find as the questions themselves seem to shift and change and grow more numerous by the day.  Still, looking, asking, and listening for those important responses from 'self' remain the most important part of healing; for me, this is absolutely essential.

Yeah, it's one of those days where I've yet to determine the course of my life.

I'm freaking lost (no surprise there).

Cold.

I'm in freezing mode--just one side of the coin of prednisone.  Withdrawal is kicking my ass and giving me issues (duh), so I don't have but a moment to post here.  Just checking in, more than anything.

Physically, I feel like crap.  Emotionally, I feel like crap.  My whole reason for getting out of bed each day is simply to take care of my dog and ferret, and.. well, pretty much to try and push-back against this depression that's trying its damnedest to win.

Really not doing well today.

Not at all.

I'm going to try and post again later...

Seven Days.

It's an important number to me.  Every 7 days my dosage of prednisone decreases.  While I'm tapering from this extremely powerful drug I experience many unwanted side-effects, much of which I can't differentiate from AIH symptoms.  At 5mg/week my body became my worst enemy, leaving me unable to walk from the living room to the kitchen, making it difficult to walk the very short distance from the room I have to sleep in now to the nearby bathroom.  From unshakable episodes of freezing to feeling as if my body is going to melt into a puddle, I never know from one minute to the next what I'll be dealing with.  The turning point for me a few days ago was waking up before the sun in the throes of a migraine.

Tapering 5mg/week was simply not going to work.

Another call to the dr. and I'm told to go back up to 7.5mg and taper down at 2.5mg/week.  The morning of the migraine I discovered that with that 5mg dosage the migraine would go away, and it was that same evening that I added the additional 2.5mg.  While this seems like numbers and boring, dry information, I promise it's much, much more than that.  My entire quality of life depends on a tiny little pill that had the ability to make or break my life in every way.

On one hand it's a life-saver, and on the other it's dangerous as hell.  It's the drug people with AI diseases love to hate.

The usual thinking on getting off prednisone is to slow the taper the lower the dosage gets.  I'm unsure if I will be able to go down to the 5mg again, but I'll certainly find out next Wednesday.  Just how I'll find out is yet to be seen.  Will I feel better?  Will I feel worse?  Will there be debilitating symptoms again?  Or will everything go smoothly?

Without answers I can't make plans.  With each day being a giant mystery that unfolds one minute, one hour, one symptom (or lack of) at a time I am no longer really in control of my life anymore.  Prednisone now determines everything---basically, it's made me its bitch.

I can be honest about this.  I have to be honest about this.  I'm willing to face this head-on even if it means I'm the recipient, on occasion, of a TKO by a drug that is supposed to save my life.  I'll get up, face another day (albeit at times unwillingly), and keep going.

All of the above has affected my life.  Okay, I accept that.  What I don't like at this time is no support network, no one listening (not including who reads here) when I really need to talk.  If I could just feel good, be without pain, lead an normal life, I can handle the other stuff.

In the meantime I'm ticking down the hours in those 7 days to reach toward that goal of being off a drug that whispers it will save me, while making me feel as if I'm dying.

Seven days at a time... we'll see where I will be when I'm finally free of the prednisone shackles.

We will see...

Migraine...

Just when I thought I would be writing about something OTHER than this whole Prednisone experience, I end up with symptoms that will land me in bed the entire day.  It's a good thing I like coffee, because when it comes to migraines... coffee does help.

Then there's the nausea.  With prednisone withdrawal and migraine comes nausea.  It's a very bad day, I can tell you.

I took the 5mg dosage for the day, gagged down a little food (you MUST take Prednisone with food), and am praying that little bit will ease the headache.  So far, the headache is a little better than it was when I woke up, but I don't know if it will return when the Pred leaves my system (had a very short half life).  I can only hope and pray and leave my bed un-made and waiting.  Trust me, I'm going to end up back in bed VERY soon.

I'm also freezing.  This was also the case yesterday, and it's been like this off and on for the past week; also another side effect of Pred withdrawal.  There's just so many of them, and NONE of them are even remotely pleasant.  I'm waiting to find out from my doctor if I can taper off more slowly... much more slowly.  I can't just be an invalid until my adrenal glands catch up.  That won't work at all.

So how in the world am I handling this?  I'm not.  Just being honest here---but I'm not handling this at all.  Am I trying?  Sure.  Of course I'm trying, and I'm trying as much as my body will allow.  That's the best I can do; that and forgive myself for not being capable of doing the things that need done.  My animals are well taken care of, so that's the most important thing.  Dishes can wait.  Sweeping can weight.  The rest is incidental.

What I'd really like to see happen today is the cessation of this migraine (totally), allergies calm down so I can breathe better, and to be able to relax, actually relax.

...I'd also like a new pillow.

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....

Shhhhhh.

It's quiet.  I like the quiet and often prefer it to even music at times.  Listening for guidance, watching for signs of life in an otherwise empty space, not knowing whether to trust my instincts and give in, fight--these are every day experiences for me; sometimes by choice; sometimes by chance; but always for a reason.

I'm heading to my oasis in a moment, a room I use as my 'Girl cave,' a place that is inherently me in all it contains, inspires, and presents.  My own place where I can retreat, nap, contemplate, and create if I had the energy.  It's a good place.  A very very good place.  I feel at home in there, more at peace. It could just be the decor, all the familiar items from my former life of 2 years ago, the soothing familiarity invoking that feeling of "Ah."  It's really my space and I am very protective of that space, I promise you.

So I took that Lasix for the first time a little while ago and am waiting for it to kick in.  This means I'm retreating to my room where I can be near a bathroom... yeah, it's a very powerful diuretic, prescription, and boy is it going to keep me busy this afternoon.  It's okay.. because it's needed to combat the prednisone water retention, which is making my BP shoot up in the are of 194/82.  NOT a good BP reading.

Time to head into the other room...

Okay, bladder... let's do this!

Yikes!

Just Not Going to Worry About it.

I'm not talking about the recent findings on my labs.  Since it points to kidney issues but doesn't have any proof of such (imaging, etc), and since the 'damage' showing in the labs COULD very well be due to Prednisone and/or Aza (Azathioprine), then I'm just going to choose not to worry about it.  I mean, it's not going to help anything if I worry, so why bother?  I can choose to focus on what I do know for sure, as opposed to focusing on what MAY BE.  I choose the latter.

Since a couple of you asked, I thought I would just give you the basics, in case you're curious.  As of my last lab results, of which I received the copies at the beginning of this week, it shows I have Stage 2 CKD.  Now, one reason I'm not worrying about this too much is because the findings are an estimate based on weight, height, gender, and several lab values.  It's NO guarantee that I have CKD, when it very well could be AKI or ACUTE Kidney Injury, and possibly due to some other factor.  In order for CKD to be a diagnosis, one has to have those elevated labs and ratio numbers for at least 3 months.  For all I know, the next time I get the labs done.. everything could very well be right within the normal range.

Oh, and if you don't know what CKD is---Chronic Kidney Disease.  This can be completely idiopathic, or it could have a direct and verifiable cause.  Since I don't know if I'm in CKD or if I'm experiencing AKI... I have to wait.  So why not wait it out until I know?  Right?  This makes the most sense to me.

Here's a little information in a screen shot:  This is pretty much the given belief in the medical community, and though it's rather like a waiting game, it's important to know for sure what's going on and why.  This also causes some doctors to take the stance that waiting is not the best idea because once the damage is done, it's irreversible and can cause major problems for the heart.

Like any other major medical problem, early detection and treatment provides the best outcome.  Thing is, deciding something is indeed a major medical problem should be done with certainty.  I guess it's a damned if you do and damned if you don't scenario.  Still, I think waiting may not be the worst idea.

I've seen changes with kidney function in my labs before, and the numbers have been creeping towards this for a few months now.  I also suspect that if my doctor's suspicions are correct and I do have Myositis.. the destruction of muscle tissue and protein breakdown may affect kidney function values; this is me guessing, of course, and one reason I'm leaving things up to the doctor and future lab results.

So that's it in a nutshell, the reason I deleted the post a few days ago about this issue.

That Deleted Post

Okay, as you long-time readers/friends know, I often delete posts.  The last one is a bit too sensitive, so I decided to delete it until I learn more.  Yes, it's health-related, but I don't know anything about what it actually MEANS right now.  Best thing, imho, is to just let it be until I have a better understanding about what I'm dealing with.

If you read the entry before I deleted it, then you know what I'm talking about.  Given that, once I learn more I'll update.

Sheesh.

I really need a nap.  Seriously.  Life just has to get easier than this crazy rollercoaster I'm on at the moment.

$260+ Prescription and Epic Failure So Far

Maybe.  Maybe not.  Has it been enough days?  How long will it take?  WTH?  Without actually going into the failure of a very expensive medication, and without talking too much about the why's and wherefores of it all, I still have to get a few things off my chest with regards to where I am right now, today, tomorrow, and the rest of my life.

Let me start by asking the burning question: "What life?"  Yes, I'm breathing.  Yes, my heart still beats.  But there isn't any quality of life at the moment.  Now how is it that I'm supposed to do anything other than 'will' myself through each and every day when there LITERALLY is NO quality of life?  How do other people do this?  Oh, and I've looked, trust me.

I see videos, read blogs and articles and forum posts, and I just can't really connect with what they're saying, what they're talking about.  I don't understand what the hell is happening to me right now with all of this muscle weakness and shaking, which at times feels like I can't stand or walk.  Where is this coming from?  Medication?  I see no one really talking about this anywhere, and what weakness etc they may feel isn't enough to shut them completely down like this.  And I see people who are still able to get through their day and take care of common tasks, ones that are now nearly impossible for me.

What gives?

I keep looking, keep reading, keep learning, keep hoping and believing this will eventually get better. But there's one little problem with that method of 'coping,' and that's this: I have no real grasp on what "this" is!  How can you look for a solution, remedy, or cure for something that is yet unidentified?  You can't.

Yes, I know and understand I have AIH.  I get that. I'm on medication for this AI issue and hope remission will be quick.  I realize it generally takes 1.5 to 2 years for remission to be in place, so I'm prepared for that.  But these symptoms... wth?

My first week on prednisone was AWESOME, and I may have overdone things a bit, I admit.  Maybe the 8+ hours a day I spent that first week of feeling really great triggered something with the muscles?  I had chilled out the following week after the first taper because of the return of symptoms.  And yet while my dr increased the dosage again for a short while... it didn't help.  Did I trigger Myositis to flare up?  Is Myositis the other problem?  Doc seems to think so.  Damn.

OMG, seriously... I can't stop thinking or talking about this.  See, this is why people need a diagnosis of SOME kind, because GUESSING or WONDERING wth is going on can drive a person nuts, especially when it's gone on too long.

Geez.... Shut up brain! :/

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....

The Invisibility of Being.

Throughout my life I've been pretty thin-skinned, listening to others tell me what I should/shouldn't be, what and how I should think, do, say, dream... developed into an art form for me that damn near reached "Spidey Power" status.  No, seriously.  I would take and wear whatever anyone projected upon me like a shiny pair of Jimmy Choo's.  And trust me when I say that two-sizes too small absolutely made a difference in how I felt and carried myself through life.

Barefoot is better.  Know what happens when you go barefoot the majority of the time?  The soles of your feet get pretty damn tough.  Having grown up poor I had only one pair of shoes (cheap) at a time and wasn't really allowed to wear them outside if I were just playing in the yard, etc.  They had to last until my mom decided we could afford more.  I think I had the toughest feet of anyone I've ever known because of this.  The only thing that really hurt me was if I stepped on glass (which I did a few times, once landing me in the ER to have the glass removed), and when that California asphalt and concrete got hot enough to fry an egg on.  Even so, over time walking barefoot didn't bother me one single bit.

But what about the INSIDE?  Oh, but that was a whole different story altogether.  I couldn't walk my way through through the pain to being 'thick-skinned' and pretty much felt the weight of anything and everything that was said to me.  Criticism became truth, a 'reality' handed to me that I willingly took.  My childhood experiences weren't filled with encouragement or praise nor even helpful criticism.  Indifference and criticism, and many times complete withdrawal of love and affection were the tools used to shape the person I would become.

I was to become the child who survived.

In adulthood, that small child I once was is alive, and though not well, that part of me is AWARE.  There is still a disconnection of who 'that little girl' was and who I am now, and I still see photos of when I was little and feel such pity for 'that little girl.'  Yes, I know it's me, of course.  But the disconnection is still there just the same.  I want SO much to apologize to her and say "I'm sorry I didn't protect you!"

I've accepted this disconnection as a part of who I am, but I don't like it one single bit.  C'est la vie.

I remain thin-skinned, but my reaction to criticism, disrespect, and so forth is very different now.  I've allowed history to repeat itself in relationships I've had, and the reality of this has unprecedented tenure, so it would seem.  It will be with me the rest of my life.  Okay.  I'll just have to work around that when possible, right?

So here I am all grown up and stuff.  I can make decisions, change my mind, and walk away from anyone or anything that threatens my happiness; such are the benefits of being an adult.  Right?  Well, not exactly.  At least not for me.  That subconscious, that inner child, the child I actually WAS at one time so long ago, well.. she has a mind of her own and remembers the pain, the isolation, the indifference, the coldness, the invisibility of being... well, me.

Such memories carry over for the long-haul and map the course of life in often undesirable ways.  But it doesn't always have to be like that.  I can do more to help myself in that respect.  And I do.

On bad days, of which I have far too many these days, that inner child is the one who suffers most.  Sure, I feel the physical pain, and I feel the isolation of my situation and all it invokes (depression, anxiety, etc).  But it's what happens INSIDE that changes my world, my life.  All I can do is anesthetize myself with too much coffee, reading, and way too much television.  My physical body simply refuses to allow much more these days.  That's okay, because eventually the AIH and the 'possible' Myositis, both autoimmune, is driving the bus now, and not even my inner child can rebel against that and affect change.

Sitting here in the quiet, drinking coffee, talking about things I've not talked with a single other human being about...well, but for one therapist for a very short time, I can definitely say I recognize my life as it was, and as it still is; The invisibility of being... me.