Not managing this at all.

Because my blogs are divided by focus, I'm not going to rant here.  Instead, I want very much to try and focus (TRY being the key word here) on what I want, hope for, dream of, and very much long for.  I guess you could say that while I don't know exactly what all those things mean at this point.. I still have a feeling inside that points to a particular direction.  Got that?  Yeah, well.. I'll try and explain.

In a nutshell--I'm still very sick, and most days I'm literally bedridden.  I've stopped four of the medications I've been on, MUCH to my Hepatologist's chagrin, in an attempt to do what the medical community (thus far) has been unable to do---return me to health.  I've even attempted a trip to the ER (not easy, mind you) and all I saw was a nurse practitioner (not a doctor) who did blood work and told me it was fine.  "Fine?" I thought.  I'm bedridden, have nausea ALL of the time, in so much pain ALL of the time, unable to move or walk or stand and can barely make it to the bathroom on my own.  And yet... I'm... "Fine."  What the hell does that even mean?

Some days are better than others, and some days I literally wonder if there's something inside of me actually siphoning off my life.  Who can be this sick 24/7 and believe they'll live for much longer?  I'm not joking either.  Pain is one thing.  Fatigue is one thing.  Malaise is one thing. Weakness.. nausea and loss of appetite.... where in all of this is anything pointing to 'normal'?  There isn't, and my gut is sending out warning signals, big ones.  No, I don't think I'm going to die.  I don't know what's going on at all, so I can't guarantee that something bad isn't happening.  I just don't know.  Nor do the doctors.

I have bad days, and I have unbearable days.  Today is bad, but it's somewhat bearable.  I try to move, to do SOMETHING, even if I can't work out/exercise right now.  It changes nothing.  But I still try on the days I can.  It just feels as if I'm spinning my wheels in the mud and sinking.

So---it actually looks like I'm going down that other road here---you know, talking about anything but hopes and desires.  There's something in how flat the latter falls when I think about them that's holding me back from talking about it.  As if in some way I don't believe that there is hope, that all desire for life, living, joy has simply dissipated in the BS.  And I've not even spoken of the BS yet.

I need to be healthy so I can leave.  There.  I said it.  There are things I can handle, and things that are a complete deal breaker for me.  If something directly affects my quality of life for the worse.. THAT is a deal breaker.

In many ways the details don't matter.  All the clutter of what's wrong has turned into a mountain I can't climb and have stopped trying.   Taking matters into my own hands and acting in my best interests has come the priority.  Putting T's interests and priorities ahead of mine this long has all but ruined my life.  This is a pattern of mine and one I thought I'd broken.  I put everyone else in my life far ahead of me.  When it comes to my kids (grown) I'm still that way, but when this happens to someone who also has only their self-interests at the top of the totem pole, where their needs, wants, etc. are top priority---the imbalance eventually tips the scales and the whole thing comes crashing down.  Boy does it.

I'm not okay with what's happening and haven't been for some time now.  As my health deteriorates I'm forced to take inventory on everything in my life, and I mean EVERYTHING.  What it's boiled down to is that I MUST get healthy and regain my strength so I can put this relationship out of its misery--MY misery.  T just wants things to keep going as they are, and I just can't do it anymore.

So that's where I am.  Sort of.  I don't feel well enough to put it all out there at the moment.  However, I may try to make an entry in a bit about what I do want, long for, desire, and hope for.

......

Then I believe, Then I don't.

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

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

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

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

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

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

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

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

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

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

Carrying on, but on a different 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....