It's My Blogger, I Can Whine If I Want To, Whine If I Want To.....

You would whine too if it happened to youuuuuu! No, not really.  But it made for an intro that invoked a smile, even if a small one, right?  My busy week has left me wondering, unsure, and stuck in a health loop that I'm not sure will end easily.  Wow.  Like THAT doesn't sound familiar.

Life being what it is we just need to get things off our chest or deal with the consequences of, well, holding it all in until we lose it.  Right?  Right.  I suppose many people have their own way of dealing with or working through things life tosses their way, but for me.. I have many outlets.  Blogging, however is the one remaining on my list that I can actually use at the moment.  So be it.

I already talked about the elevated ferritin, so I'll leave that one be for the moment.  I saw an Endocrinologist yesterday who believes I have (((( wait for it  )))) Adrenal Fatigue caused by (((wait for it again! )))... long-term use of Prednisone.  I knoooooooooow!  *Putting on my best shocked face*  Basically what this means is that the prednisone put my adrenals to sleep and I have absolutely nothing to help me with ANY kind of stress.  I've been stressed for YEARS; Chronic, nearly 24/7 unbelievable stress, both emotional AND physical.  Then, I have to do a 12 day Pred Pac last year, then 3 months THIS year.  The thinking is that, because I went into Cushings Syndrome, my adrenals shut down.  And this is what happens when you develop Cushings.

I have almost every single symptom, and my Endo doc recognized what it is.  It can't be confirmed without blood work, and I got that today.  And tomorrow, because of the Pred, because of the Cushings, because of the possible adrenal fatigue.. I have to have glucose testing to see if my pancreas is damaged and I'm edging, or IN, the throes of diabetes.  My serum glucose is not showing overt diabetes, but that doesn't tell the entire story.  Type II diabetes is one of the more common side effects.  Nifty, huh?  *sigh*

The other appointment I had today was with my bone doc.  Got the MRI results back, and as suspected, I have a torn rotator cuff.  Surgery, because my arm is UNBELIEVABLY painful when I move, is the only option for me.  Day surgery, they'll repair the tear, file bone spurs, and send me home with pain meds and a few restrictions for a while.  There are two problems with proceeding right away with surgery is the fact that I have been on Prednisone and it was 'long-term.'  The other problem is the possible adrenal fatigue.  You can't add additional stress to the body when it basically lacks any defense.  Suppressed adrenals are VERY bad news, and in this case it would mean my body couldn't handle the physical stress of surgery, even minor surgery.  Getting upset at someone will shut you down completely when your adrenals are "asleep."

I can't go into all the details about adrenal fatigue because, literally, it would take a research paper to explain what it is in detail as well as the processes involved.  It's progressive if it isn't addressed and quickly.  People can be heading down that road for years and not even know it, and if you're on that road already... prednisone will push you right over the edge.  And it will.. WRECK. YOUR. LIFE.

So where I am right now in this is simple: Wait for blood test results to see IF what I'm dealing with actually IS adrenal fatigue, and go from there.

Not much else I can do.

Guess I'm done for now... arms too tired to type much longer.

Oh... hope you like the song I left for you guys....

The Maze of A Single Day.

Music: Sounds so much better with external speakers or head phones.  However, this is one of their best I think. "Everytime" by Broods.

This morning I woke and resolved myself to going into each of my blogs (links in the side menu bar) and posting.  It's the one way I have to work through whatever's happening in my life.  My one outlet, my only hope of unloading the bad, or tossing the good into the breeze like digital confetti.  The latter is rarely ever the case anymore, but... if I'm honest with myself each and every day then I'm doing something good for myself right there.  Still, the path through my days has so many twists and turns that it's incredibly easy for me to get completely lost inside the confines of my own life and environment.

Whether it's navigating around pain, fatigue, weakness, or whatever.. it's a maze I can get lost in if I'm not very careful.  So, I'm actually out of bed.  And oh yeah, this is something worth celebrating.  If you only knew.  But I've managed to force myself to get out of bed and at least go into the dining room for as long as I possibly can.  After having that hour long MRI the other day, I have to admit, accomplishing that one task is difficult.  Yet, here I am, somewhat among the living.

It's just me, Pandora radio (Broods at the current moment), a last cup of coffee, my blog, my dog, and my pain.

While T is outside trying to wreck the lawn mower by running over tree limbs... I'm trying to not feel stressed or anxious about that.  *sigh*

God help me through yet another day....

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.

Carrying on, but on a different path of 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.

Fact after the fact.

Had an appointment with the Dentist re my "mild" sleep apnea.  This diagnosis, btw, was really surprising to me, because I knew I wasn't sleeping well but thought it was because I was waking up so much during the night.  Pain, etc., all played a roll in my tossing and turning at night, fighting will a stubborn pillow which refused to submit to my will, and wresting with a blanket that I once viewed as the softest, most comfy-cozy piece of fabric on earth.  I mean, microfiber is the shit, is it not?  Yet, it never occurred to me that I could have sleep apnea.  Who knew?

This diagnosis, as you guys may know from past entries here, and on my other blogs, happened a few months back, even prior to the AIH diagnosis.  However, the dentist I see who makes the oral device (CPAP is out of the question) revealed my "score" as "11."  I had no idea I even had a score, much less what that number was.  I really need a new pulmonologist.  Sheesh.

So the dentist held up my chart with "11" written with a black Sharpie and explained what was what, again, and what I should look for in changes as the device is adjusted over the next couple of weeks.  I asked him, as T did (he was there) what the number meant, and this is what he told me....

"That number is the score they gave you based on how many times you stop breathing while sleeping."

Well.  Alrighty then.

So as he further explained, it's a score based on how many times a person stops breathing during the night divided by how many hours they slept.  The score means that, on average, I stop breathing 11 times per hour.

I sat there for a moment considering this information, and I wasn't sure how to react really because it was the first time I learned of this.  No one at the sleep study center told me, and my pulmonologist didn't bother telling me at all either.  It took a minute to digest.

So I guess there's a damn good reason I'm tired all of the time--in addition to all the pain and weakness.  But wow.  11 times an hour--and that's in the MILD sleep apnea range.  Crazy.

Over time it will be interesting to see how I feel as the device is adjusted forward.  This device, btw, moves the lower jaw forward a little to open up the airway and move the tongue forward--this is based on CPR maneuvers.  Pretty cool.  But it takes a little time because if the jaw is moved forward too quickly it can cause TMJ.  I already have issues with this due to grinding my teeth when I sleep, something the dentist has told me is solely due to stress.  In fact, when I asked him what the 'cure' is, he replied... "Not being stressed."

Well, I'm shit out of luck in that department.  Oh well.  So anyway, the adjustments for me have to be done a LOT slower due to this.

On another subject, I will have a new cardiologist soon.  My first appt will be in May.

Now that I've made my arms ache typing... I'll wrap this up.  There's more to say but I'll give myself a little time in that respect...

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.

Watching the sun from my bedroom window.

NOTE: I spent a good deal of time on my other blog "All Things Ephemeral," just in case you're curious about that.  A few updates, etc.

My days are spent mostly in my room.  "My room" is basically my personal space for creativity, decompressing, etc.  It's become where I sleep now due to the fact that I toss and turn most of the night due to pain.  T snores something awful, which makes sleeping worse.  So we can BOTH sleep, we've decided to take that up in separate rooms... which does help.  I couldn't sleep at all with a freight train next to me. :/

My room has two tall windows which are covered by light colored/natural bamboo roman blinds.  I keep the blinds closed, but diffused light still comes through.  My days aren't terribly happy ones--to say the least, and depression is with me much of the time.  I mean, who wouldn't be depressed being sick and painful 24hrs a day?  But I'm in there trying to relax, trying to feel better---waiting to feel better, occasionally searching my phone to amuse myself when I can't sleep, and listening to music when I'm up to it.  I love music, but sometimes I'm so painful that I need absolute quiet.  Yes.. it sucks big time.

Last night was a very difficult night for me.  Let me first say that when I have moments when it all just overwhelms me, it's not that I feel sorry for myself.  What I do feel is immense frustration that my body has become my worst enemy.  I wait things out, am careful, try to exercise but fail miserably, and my body doesn't respond to anything.  Anything that is except prednisone, and i'm NOT taking that again.  So my days are spent ticking off the minutes, the hours... until the day is gone and lost forever.

In the mornings the sun rises and brings light through my bedroom window, and I'm filled with hope. Hope that today will be better, that the pain will finally subside, that I can move without weakness, without all this pain.  Those thoughts carry me through the day until the day is gone, done, when the light changes and signals that the opportunity has passed... again.

The sun rises and sets outside of my room, signaling only one thing--that I lost that battle again.

Last night, late evening as the sun began to set, and like so many other times... I felt despair wash over me.  I couldn't stop it, and in many ways didn't want to.  I needed to feel this in order to move past it all.

So sick of all of this.

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....

A life comprised of seconds on the face of a clock...

I feel time now.  I feel it when it's restless, frantic, soulful, and even when it slows down.  In some ways I think it slows hoping I'll catch up.  I don't think we speak the same language.  The numbers are carved away by wasted effort and endeavors destined to end up in a meaningless heap of shattered dreams, broken promises, and those experiences which bind them in quiet unity.

The days remain long, yet are over before I can catch my breath.  I no longer care why this is, or why it never seems to change.  My effort to reinsert myself into life again--actual life--fall short.  I don't care about the answers or explanations anymore.  Why on earth would I care when answers seem to only end up echoes that pass through the invisible bars of this prison-like existence?  Doesn't mean anything.  Not really.

I don't like feeling time.  I just don't.

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 Handshake.

A relationship is like a handshake.  One person extends their hand and the other extends theirs in acceptance.  This is the best case scenario, however, and relationships leave one person waving their hand in the air and feeling foolish.  At some point that dance just doesn't work anymore and we have to decide wether it's all worth it or not.  But how do we know WHEN it's time to place our hand back in our pocket and walk away?

There's no difference in friendships and we've all seen those fail miserably due to one-sided participation.  It's not usually an instant fail, btw, and we come to the conclusion to walk away after a lot of energy is spent trying to be the one acquiescing, initiating, or taking the blame for the short-comings within the relationship machine.

So if we know how it works in friendships, why do we take so damn long with romantic relationships?  I think part of it is that there's a much larger prize at stake when it comes to that kind of connection that leaves you ultimately vulnerable and exposed.  That other person, unlike a friend (usually) has seen you literally at your worst, your best, naked, knows most if not all of your secrets, and the love and affection that ties it all together is not that easy to break.  In most cases.  Either way, there's just a lot at stake when talking romantic relationships vs friendships.

Friendships do last longer.  And if you think about it, it's most likely because you're not living with that person or trying to divvy up responsibilities, not relying on that person when it comes to the hard times.  I mean, yes, there is some of that, but again.... you just can't compare the two.  There is an exception, however, to this rule, and that is that we actually can apply what we are willing to put up with when it comes to carrying the load of that relationship.

I don't care about the numbers, myself.  Wether you call it 50/50 or 100/100 it still requires both sides to assess what's what and decide a compromise when one side is no longer able to carry the larger portion of the load.

My point here is this: At some point we have to acknowledge when something is harming us, wether it's physical or emotional harm, be it stress or overt abuse, we absolutely HAVE to make a decision at some point while we still have enough of ourselves left, before any real long-term damage is done.

Every day I'm reminded of how much I have to carry, what I'm left to be responsible for, and just how little energy and strength I have to take that on.  Physically I grow weaker each day.  My specialist has upped the Azathioprine about as high as I can take it, and I'm waiting to see if/when this begins to pivot the illness and begin to heal what's wrong.  In the meantime I'm extremely weak, often sick (nausea, etc.), and I have to lay down in bed several times a day now.  This means little gets done because I'm not able to do it myself.  Simple things, really.  Chores that I could handle easily back when I was healthy, living alone and with many more time-consuming responsibilities.  The difference between he and I is that I did what needed to be done and was glad to do it.  I can't live in a dirty or nasty environment so fight my way through the day trying to do what little I can.

I'm so so so done with this.

And since the communication is one-sided (out of his laziness. No joke there.) I'm beyond exhausted. I'm back to my focus being on ONE thing and ONE thing only--getting well.  I will be well enough to take my life back when the time comes and he's going to find himself in the dust when it happens.  It's his own doing, and he's not going to be happy about it when it happens, I promise.  He's been warned of this, and he's coasting along like he can't see it happening already.  But it is, happening already....

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...

One Pass and I'm Done.

I've had to accept the fact that, for now, I'm not running the show called "My Life."  Where I was once the cast, director, producer and writer, I've been pushed aside, fired if you will, by Prednisone.  Today, for example, I made one entry in All Things Ephemeral and I'm absolutely drained, both physically and emotionally.  No amount of coffee is fixing this.

Where do I go from here?  The same place I always go--to my room.  My soft place to fall now is my own space, a place that is completely all mine and mine alone, a place that looks, feels, and even smells like my world, my life, and exists as the most familiar and soothing retreat I know.  It shouldn't be this way.  People should have people in their lives, someone who will listen like a friend, like someone who cares.

I will survive, even if it's mostly on my own.  I've made the decision to NOT burden my sons with my health issues, so I'm on my own.  The 'friends' I've made in my life weren't really friends at all, or at the most just fair-weather friends who only want to be in my life when it's completely convenient and doesn't interfere with their pink cloud existence.  It's okay.  I've come a long way from being hurt by this and know that I honestly can do very well on my own with this.  Would it be nice to have someone to talk to?  Sure.  But it's not something I have to have or need that much.

In a perfect world life wouldn't be this isolated, but I don't live in a perfect world by any stretch of the imagination.  I give in to my emotions to strip them of their power.  If I feel like crying, I do.  If I feel angry or anxious or confused, etc... I allow myself to feel those things, and every time it strips them of their power over me.  This is my life now.  And I accept this.

At the moment I'm self-protective, but that can change in the next moment depending on what's going on or how sick or painful I feel.  For now I'll absorb the shock, the knocks, the punches that life dishes out.  I'll be okay despite everything... and this is something I tell myself every day.

Too sick to keep writing here, so I'll sign off.  Not sure if I'll make entries in my other blogs, so two may have to be my limit for today.  So I guess TWO passes and I'm done.  It happens.

Countdown to Nap Time.

Yes, I'm trying to invoke my sense of humor in order to have a better chance of surviving today with all its prednisone withdrawal migraine headaches, weakness, fatigue, and a plethora of other unpleasant pleasantries.  A spring of irony, a handful of sarcasm, and walla!... instant blah, blah, blah. Yeah, it's not going so well.

I guess you could call this entry a 'hit-and-run' share because I'm fading quickly here and in desperate need of laying down, warming up, and praying for these Pred withdrawal side effects to vanish.

......

It's Been Rough

I'm not sure how long I can sit at the computer, but I'm giving it a try anyway...

I'm down to 2.5mg of Prednisone per day and am feeling completely beaten to death at this point.  The bloating/edema is still as severe as ever, and I just can't seem to feel right no matter what I do.  My appetite has waned, thankfully, but now nausea has taken place where I did have the dreaded prednisone appetite.  And I'm cold--SO cold.  I honestly don't have any idea what to expect going forward and am barely hanging on.  I'm dead serious about that.

The worst of it is that I'm having issues, big issues, with my muscles not working; they honestly just refuse to do what they're supposed to do.  The weakness and bloat and discomfort are unbearable.  But I'm hanging in there, getting up every morning, pushing through the routines I like in order to maintain some semblance of normalcy in this so-called "Life."  But it doesn't feel like MY life.  Not even a little.

It's only 10:55am and I've been up since about 7:30am.  And I want so badly to crawl back into bed, cover up, get warm... and sleep.  Just... sleep.  I'll allow myself to give into that once I'm done updating my blogs; a goal I set today and intend to fulfill.

Where is normalcy, my life, vitality?  Why I continue to ask that is beyond me.  I mean, I know full well it's just a rhetorical question that has NO answer.  Habit, I guess.

....I'm waning fast here....

Just because it's expected doesn't mean it's okay.

Yeah, I know.  I'm sure you guys are sick of hearing about me coming off Prednisone.  But, believe it or not, there are a LOT of people who have to take this stuff in high doses and often for a long period of time (months to years).  In my case we're talking about 2 months after it's all said and done, and when it comes to prednisone.. that is a very long time.

As I research I find many common complaints relating to my symptoms, and these seem to point to tapering off too quickly.  This means the adrenal glands haven't quite woken up enough to do their job.  The body is protective and reactant when it comes to anything upsetting homeostasis--we all know this.  So when something is brought on-board, like a glucocorticoid (a cortisone-like drug), the body springs into action to shut down the adrenal glands to thwart any danger brought on by excess steroids.  This process is a good thing.  My current symptoms began when I began to taper off the prednisone, but also when I added Aza (Azathioprine.. or "Imuran").  There was, and somewhat is, no way to definitely say what's causing these undesirable side effects.  Only time will tell.

In the meantime I'm stuck at home, uncertain from one day to the next, or one moment to the next what I can or can't do.  Yes--I sound like a broken record.

I'm reconfiguring my life around this withdrawal and its symptoms.  There really isn't any other choice.  And in the stretch to an unseen finish line I have to deal with T.  I mention this because it truly does make this process, this experience all the harder... and unnecessarily so.  Since I don't have control over what he does or doesn't do, and wouldn't WANT to have control, I have to focus even harder on what my future looks like, what I want, and how I plan to get there.  The first step to my future is to heal; this means taking all necessary steps to wellness.

I do have so much more on my mind, ideas and dreams that have yet to be realized and are 'just' out of reach at the moment.  Believing I'll get there demands I concentrate on healing as it's the most important part of the foundation for good living, and a vibrant, healthy, quality of life.  That foundation is necessary, vital to building a better future for myself.  See, I get at least that much.

So my talking about my health is critical, at least for me, and it's critical because it cannot be avoided.  If I look the other way while doing nothing, I'm going to get blindsided by what may be coming.  It's okay to be prepared for the worst while expecting the best, and anyone who chooses only one side of that coin is most likely going to receive a harsh lesson.  Why on earth would I invite that?

Okay, so now I've blabbered on about the same ole same ole.  It's a necessary evil, I guess.  Knowing a bit about what to expect as I taper off of a very powerful and dangerous medication, as the symptoms threaten to take me out at the knees.  Yeah, a lot of people deal with these withdrawal side effects, and it's expected...

But just because it's expected doesn't mean it's okay.  Trust me, it's NOT okay.  Ugh.

The Facebook Toast Experiment.

Time; Taken for granted, abused, ignored, squandered and sometimes stolen.  It's the currency of our lives, the one thing we can't live without, yet we can't seem to remember how little of it (time) we actually have.  It's nearly impossible to truly appreciate the time we have when we feel healthy, strong, energetic and, face it, damn near immortal.  When one's quality of life diminishes, time not only becomes more valuable but is measured quite differently.

When you deal with chronic illness, when quality of life diminishes, every moment, every choice, every decision is weighed carefully against what is gained as opposed to what is lost.  I have to make these choices on a daily basis now, because time wasted is, well, gone forever.  I don't know from one day to the next, or one hour to the next, or even one MINUTE to the next exactly how good or bad I will feel or what I will be able to do or not do.  My choice as to how I spend my time and who I spend it on isn't taken lightly.  My family automatically gets my time and attention, with the exception of siblings.. who never treated me like family from the time I was born (another talk show).  I also give my pets my attention and time.  I'm not about to waste precious time on people who aren't there for me, or on those who treat me with very little (if any) respect.  T is the exception because I still hold hope that he'll come around.

My time right now is divided into some unpleasant categories.  I spend a lot of my day just trying to make it from one mundane and everyday task or situation to the next.  There's no room for extraneous anything, no room for excess, no room for frivolity, no room for other people's drama.  Again, my family can bring their heartaches and rants and whatever to me no matter what; that's called unconditional love.  But mark my words, if you're absent in my life and suddenly want my attention... you better have a good reason, because the days of being a last-resort sounding board are gone.  I value REAL relationships, REAL friendships.  I have no room and no time for anything less.

As my entire morning was spent dealing with health issues (that I won't go into), I'm reminded how few truly good days I have.  If there is even 5 minutes without pain or discomfort, that 5 minutes is golden and not to be squandered.  So few people understand when I refuse to engage in their blatant drama or hateful rhetoric on Facebook, and I welcome being blocked or ignored by those who engage in those 'activities.'  I simply have NO room for it in my life.  And I'm not talking about normal, everyday drama that everyone has.  I'm talking about people who go out of their way to start drama using overt or veiled insults, or even resorting to passive/aggressive social networking maneuvers in an attempt to irritate or otherwise provoke me.  I've blocked or unfollowed a few who've done this.  Thankfully, most people aren't like that.

I've actually taken to spending a LOT less time on Facebook these days and mostly engage in my quota of social networking on Twitter.  When I compare the two I'm actually quite surprised at how superficial FB activity is.  People simply focus on the weirdest things, ignoring anything REAL a person posts.  This became SO apparent to me when I posted, of all things, a photo of several pieces of TOAST--yep, actual toasted bread (see image to left)--and a request from the poster (me, in this case) asking which people preferred.  This was a re-post, btw.  And you would NOT believe how many people responded to THAT post! I could hardly keep up!  But if I post something real, something that has to do with current events, anything that isn't a meme or video or whatever... only a few small number of people comment.  I have to wonder if people are chronically on autopilot while on FB.

How this translates into the real world is pretty easy to figure out.  Most are walking around in their pink cloud and are too afraid to peek out at the absolute technicolor of real life.  I don't understand this.  And talk about a waste of time!

The toast experiment was telling, I have to say.  VERY telling.  And I also learned something valuable about the outcome.. and that is... most people really think they have forever, that they can walk around with their blinders on and not participate in real life without consequences.  My health prevents me from participating in many events and activities right now, but I'm still participating in life as it is right now.  I'm engaged enough to not be distracted by, of all things, a photo of toast.  My time is just too precious to waste on the superficial BS that most engage in so they don't have to put too much of their time or effort into anything that doesn't serve them completely.

Can we login to life now?

Monotony's Child

NOTE:  Sorry for the text size change.  Had to save this blog due to a Blogger error.

I have no idea why line between days blurs into an unrecognizable abyss just waiting to swallow me at the slightest misstep.  Maybe it's the Prednisone.  Maybe it's more than I'm drowning in daily disrespect from T.  Maybe it's that I feel so badly coming OFF the prednisone.  And maybe... it's all the above.  There's a lot of maybes these days.

The topic of most of my entries here and in my other blogs are centered around my health and relationship issues.  And I'm sure it must get boring to hear me talk about those things with little deviation.  But it's where I am at the moment, and those things are significantly altering my life, my quality of life more specifically.  I long, DREAM, of days where I can just LIVE.  I'm tired of merely existing and need SO much to have a reason to get up each day OTHER than because I have a pulse and pets to care for.  Honestly, I can say that if it not for my pets I wouldn't get out of bed.  The depression is heavy, the physical issues due to illness and treatment is enough to bring me to my knees.  But I can't allow that.  I can honestly say that my pets have literally saved my life a few times over the years.  I owe them my all.

But anyway....back to the issue(s)....

Yesterday sucked in ways I can't even begin to explain.  I have now two more medications added to the mix, one is a continuing protocol for one issue, and the other is a newer protocol for an issue arising from the Prednisone.  My BP was significantly elevated yesterday on both tries, and now I have to take an ARB until I'm off the Prednisone and lose the water weight, and additional fat gain.  The water is the biggest culprit with BP, so once that's under control then things should go back to normal again.  Until then, I have to take Losartan.  I hate BP meds and have previous experience with them due to 3 heart arrhythmias I had.  I say "Had" because I got cardiac ablations to take care of them.

At some point today I have to also take Lasix--a powerful diuretic that will pull most of the excess fluid out of my body.  This means I'll be anchored to my "Girl cave," which thankfully has a bed and everything I need in there.  The bathroom is across the hall, and I'm going to be making FREQUENT trips after the Lasix takes effect.  I'm NOT looking forward to that, btw.  But if it helps... I'll do whatever is needed.

I vowed that today I would drink more water, watch even more carefully what I eat, and try and find something that's going to make me feel better emotionally.  If I can find something, anything online that I can identify with... I would be in a much better place, emotionally.  While I search and search for anything to help me understand how others deal with this.. I'm finding very little information that parallels what my circumstances are.  Most people have a support network, so that very much changes how chronic illness etc affects them.  No support network here, so I turn to the internet to find what I need.  I hate it, but it's all I have at the moment.  And no, I don't feel sorry for myself.  I actually feel determined, despite the depression.  I'm determined to find answers, encouragement, motivation, and I know it's out there.  Somewhere.

And it's a daily thing, a repetition that has become the machine known as my "life."  It takes a lot of fancy footwork for this repetitious seeking of something better to not transform into monotony.  For now, it's just repetition on a daily basis, something I refer to as "Monotony's Child".... 

That's all I have.

5:43 AM

5:43 AM -- This morning I find out if one of the medications I'm on is causing the swelling around my eyes.  Funny thing is that I'm wondering HOW I'm going to manage actually getting through the parking garage, into the hospital (where my specialist's office is), get to his office, and then the entire routine in reverse.  I've never felt so sick in my life.

Autoimmune Hepatitis, for me, should be relatively easy to get under control, and possibly keep under control.  I don't have cirrhosis, so the level of damage to my liver is minimal since the AI was caught early.  That's the good news.  But the case for what the medication(s) can and seem to be doing to me is another matter that has to be dealt with, and like a lot of people I'm only just a little surprised that I'm trying to decide which is worse; the disease or the cure?  I think there's no easy answer to that and the outcome could go either way.  At least for me.

Today I go down another 5mg of prednisone, and I have no idea what to expect.  Thus far, since there's no actual answer as to what's causing the symptoms I have at the moment, I've not even tried to predict what will happen when the dosage is tapered down.  And I'm completely torn now because I REALLY REALLY want OFF this drug.  Prednisone is nothing to mess with.

The depression that comes with taking this stuff doesn't help at all, and I've no coping mechanisms in place to catch me when I fall.  Those feelings of hopelessness, when they come simply just arrive like an unwanted house guest with way too many suitcases.

Finding hope is an everyday task as necessary as getting out of bed and having coffee.  That elusive hope, the thing that provides inspiration in a seemingly grim situation, evades me on most days.  But coffee helps!  And no, I'm absolutely not making jokes about that blessed liquid.  While my miracle vacations in the Bahamas somewhere, hope is the somewhat-retarded cousin who only wants to make demands instead of helping.

In the midst of the confusion, the chaos, the physical misery, I'm left to not sharing any of what I'm going through with anyone--at least face-to-face or on the telephone.  No family to call, no one to talk about this to---except for you guys.  How far into the virtual void does this information echo anyway?

Time to go...

1:42 PM -- Well, two doctor visits and a trip to LabCor was less than ideal.  New prescriptions, more blood work, and the realization that this prednisone is seriously messing with my BP.. which was 192/94 on the second try; the first was higher.  I hate BP meds, which I had to take before my ablation for 3 heart arrhythmias.  Those meds can make a person ridiculously tired--something I already deal with.  But it's just one of those things, I guess.  Also checking to make sure all's well with my kidneys... which I'm sure are fine despite some of the off-kilter values last week.  Maybe just a little dehydrated.

At the moment my entire body is absolutely tired and achy.  I was 5 hours late taking the prednisone dose today because I couldn't eat before heading out. OH well.

Right now I think I'm just rambling on and not really saying anything, so I'll sign off for now.  I'm in need of a nap and my favorite blanket...