Life, dammit.

Still behind---hope to catch up this week...

September 01, 2016: Life, rant, confusion... yeah, whatever.

Life.  Amiright?

Post-Surgery Pain and the Damaging Effects of Indifference.

This is difficult.  Post-surgery for frozen shoulder and minor rotator cuff tear and I'm feeling like hell.    It will take a long time to recover and regain full use of my left arm, and dammit but it hurts to type.  I almost decided to do an audio blog but not enough privacy the last couple of days to do that.  So I'll make this just a quick check-in.

I'm not sleeping, mostly getting up several times a night to move my arm, elbow... to alleviate what pain I can.  This is often a tearful process.  I don't know when the big crash will come, but it will.  A human being simply can't withstand not sleeping like this.  On Wednesday, then on Saturday... things will change and hopefully for the better.

Sleeping on my side after this kind of surgery isn't the best idea, and it creates a world of pain, swelling to an unhealthy level in my arm.  This became the catalyst for ordering one of those Tempur Pedic beds.  NOT the cheapest thing in the world, but a very necessary one at this point as the healing process is going to take a long time.  So be it.  It's adjustable so I can support the back of my legs and have the back of the bed upright to manage sleeping without being on my side.  Saturday, a Laz-boy chair will arrive, and mostly for the same purpose.  As it stands now my options are to sit straight/upright or lay in a flat bed.  Both options mean pain and swelling.  But hey, those recliners are awesome and it's not like it won't be fully enjoyed way beyond the shoulder healing.

I suppose at this point I'm just rambling, but everything I am is consumed with the pain and trying to work past it without taking the powerful pain killers I was given.  The side effects sucks, and that means I'm making damn sure to take them sparingly.  But either way, my point is basically that I'll be dealing with this for a while and probably not making a lot of sense when I post.

There most likely won't be daily entries for a while, but I will try my best.

Post-surgery with all it's unbelievable pain has opened up a part of me that I really would rather leave closed, shut away, and ignored.  That echo chamber of the past and present merging in unsettling ways rumbles below the surface, always, making itself known at the darkest of hours and experiences.  I find myself unsettled---not just my circumstances or thoughts.  In the wee hours, especially when awakened by the almost ceaseless pain, true anxiety sets in and grips me.  Most of the time I can overcome it and get past it's frightening messages.  But then there are times when it takes hold and I find myself incredibly vulnerable and needing a strong, positive presence to jerk me back into a brighter reality.  Things is... I have no such strong, positive presence.  Yeah.
What to do with that.

As you guys know, indifference has been my companion.  T's indifference rears it's true self amidst the pain that really feels as if it's going to rip me apart.  You see, the first part of knowing how to squash pain naturally is to avoid stress at all costs, because stress destroy's the body's own ability to send much-needed pain killers to it's needed location.  Over time, especially in the presence of AI disease and fibromyalgia.... the breakdown of this mechanism is swift and brutal, leaving me without any natural defenses.  This sucks.

I've been brought to tears by the sheer intensity and duration of this pain, and the fibro is in a massive flare-up now, adding wide-spread, diffuse pain to that of the post-surgical.  While it's nothing to brag about, I will admit that I've been brought to my knees by the force of it all, crying so hard I felt as if my head would explode.  Late at night, when it's at its worst T will simply get up, stand there... and say nothing, do nothing, offer nothing.  I've had to tell him it's best he stay away rather than bring that indifference to the already miserable situation.

It is times like this that I long for "home," whatever and wherever that is.  No one to reach out to, to plead to, or talk to.  Not a parent, sibling, or best friend.  No one.  It's only when either by exhaustion or prescription intervention does the pain lessen a little, just enough for my mind to bring forth an image of a healthy, happy, joyful, fulfilled and pain-free me.  When I fall asleep... it sometimes carries me into dreaming, those thoughts.

My arm is in a lot of pain at the moment, so I'm going to sign off.  I hope that each day with willpower and physical therapy.. and even the weaker moments when I allow myself the prescription help to relieve the pain... maybe I'll get stronger, better.  I have 3 days of PT this coming week... and I pray it's the start to real recovery.

I need this pain to stop.  I really do.

Hopefully I can post tomorrow.

PS... I was amazed at how many page views Where Fireflies Dream received.... gave me a smile.

It's About Time.

When I first began blogging it was for one specific reason--venting.  I needed a place where I could get things off my chest that were bothering me so I could get on with life without cumbersome emotions or baggage.  I had ONE blog at that time.  When things got tough, and they often were, I would visit my blog and unload to my heart's content, not giving a single iota to being politically correct or holding back out of some delusion that I somehow had to be 'polite' here.  The venting would ensue, fall upon the screen, and I would be left to bask in the aftermath of some seriously epic purging of thoughts, feelings, and more.  In the end I would usually go back and delete the long-winded and emotionally-charged entries, knowing I could do so now that some time had past.  That blog still exists and I still post in it as often as possible, and I named it "All Things Ephemeral" for a reason, even if that reason no longer exists.  Let me explain....

A few years ago I made the decision to stop deleting the entries.  Being honest with myself I realized that I was deleting so as not to 'hurt feelings' of those I vented about.  No matter that I left off names and details that would give much away to the wrong set of eyes reading, I decided it was somehow 'impolite' to share even my feelings and experiences.  Boy, was that ever stupid.  I'm glad I came to my senses and stopped editing the content over some perceived butthurt it may cause someone else.  But, did I really stop editing my own entries after all?  Well, today I figured it was something worth investigating.

I often come here and stare at the blank screen where bits of my life would fall and wonder... "How can I actually talk about this?"  I know as I write just how much I'm holding back, even when I don't WANT to.  Still, the struggle to set myself free remains just that--a struggle, even today.  Even when I know the healthiest thing I can do for myself is write about it, get it out of my system, it's remains incredibly difficult just the same.

What I want very much to do right now is to take the first step in 'going there,' to talk openly instead of using a string of allusions to piece together a story that, when all is said and done, remains unclear and ill-explained because of that fear below the surface of truth.

A Bold First Step

My next blog entry will be in This Free Spirit, and I tell you this because it will ultimately be the first blog entry in many years where I hold little if nothing back.  With failing health I need all the help I can get to break the bonds of emotional servitude, and the first step is to open myself completely to the idea of 'almost' full disclosure.

Wish me luck....

Stop it!

I'll make this short as I've posted in my other blogs about everything that went on this morning.  Over all, I want to keep the blog contents on all my blogs to the subject matter for which they created.  Given that, the theme of the day is basically... the danger of indifference.

Short and sweet (no pun intended)... T knows I'm pre-diabetic, he's indifferent about my testing my blood sugar in the mornings as directed by my doctor, and he's gone as far today as to tell me just to skip today.... which he's done before.  But aside from testing my glucose each morning, he's often indifferent to the things I have to do to get my health back and to avoid pre-diabetes from progressing to full blown Type II diabetes.  W.  T.  F. ????

Due to some physical limitations of which the doctors are still looking to nail down a cause, cooking is pretty much impossible now.  I LOVE LOVE LOVE cooking, so this is not something I'm at all happy about.  But T says he likes to cook but is also honest about the fact that he would be more than okay (his words) to eat a can of raviolis for dinner.  *sigh*  I can't do that.  I didn't like or want to eat that way throughout my life, but I also can't afford to eat that way right now due to my health.

We've had the 'salad discussion.'  I LOVE salads and strive to have a salad every night before dinner.  T, knowing I have to make drastic changes in my eating, etc., due to being diagnosed with pre-diabetes, says having a salad every night would be 'okay.'  However, he buys salad vegetables, puts them in the fridge, "forgets" to make the salads, then gets testy when I tell him we need more salad stuff because the other has gone bad.  Following THAT exchange comes the blame, the passive aggressive type where he gets testy and oppositional about buying salad veggies stating... "I don't want to buy salad stuff because it doesn't get eaten and goes bad," he says with a scowl.

O. M. G.

So I explain to him WHY the veggies went bad and REMINDED him that I said we need to have one every night, or at least I do.  He says okay, buys more salad stuff, then... "forgets" to make salads.  It's been 3 days since he made salads for us.  I remind him and he sometimes forgets.  So I told him.. "Don't ASK me if I want one--just make it!"  It's been 3 days since he's made a salad.

This man, before I met him, didn't eat salads unless it came with a meal at a restaurant.  He didn't make himself vegetables and had canned soup every night and said he likes it.  Well, okay... if he wants to destroy his life, fine.  But don't play with my life too.

I don't want to be so sick I can't cook.  I love cooking, baking, you name it.  LOVE IT.  But I'm too sick to cook right now.  Just a fact.  And I'm supposed to be eating veggies every day.  So much for that.

But aside from the veggies/salad thing, there's the bringing home crap thing.  There's just a weird disconnection here with his insisting on cooking crap he knows I can't have or is exceptionally bad for me.

W. T. F. ???

I really really wish he would just freaking STOP IT.

Ugh.

I Shouldn't Have To...

Fight for my health.
Beg for understanding when I'm too sick.
Point out that someone isn't really listening.
Explain myself.
Be the one to show someone they're behavior isn't kind or compassionate.
Listen to silence after asking a question.
Be disrespected on a daily basis.
Allow myself to be demoralized by another's actions or inactions.
DREAM of living my life like it's MY life--I should be living it that way.

But honestly, one of the top things I shouldn't have to fight for being able to change my diet as my doctors urge.  When I'm told by my doctors there are certain things I have to avoid and things I need to focus on when it comes to my diet.  It's critical, because with the pre-diabetes issue, which is no laughing matter, I have to be diligent.  Where the diligence falls to the wayside are things that are out of my control, be it grocery shopping, choosing the food, and cooking.  I've said I'm sick, but I don't think people realize how sick.

I can't shop for groceries or cook right now.  I simply can't, even if I try very hard.  Without the gory details I can say that things are very bad for me right now, health wise, and I have to fight like hell to fix what's going wrong with my blood sugar.  My family history I can't afford to be lax.  My mom and oldest sister passed away due to diabetic complications.

I can't wish away pre-diabetes.  I can't sit here and hope that, out of the blue, things will right themselves.  It takes purposeful action.  I have to eat the right foods, cooked the right way, and scale back the stress and anxiety to a minimum.  Right now I'm with someone who isn't on board with this and who is just as happy to eat pizza and cookies as salmon and salad (my faves).

Well.  I have to stop here because I'm not feeling well.  But I will be revisiting this topic soon, most likely tomorrow.

And.. life goes on.....

Chronic Epic Failures.

As I reach for health and healing, returning to MY life, it's not without obstacles.  If you've been reading here for a while, and reading my other blogs, this has become glaringly apparent.  So why am I STILL struggling with this?  Why is it I'm still stuck in limbo and unable to help myself?  And WHY are the obstacles STILL here?  I have to say... there's no easy way to answer those questions.

Ever hear of situations where someone is trying to lose weight, or start an exercise program (or both) and they're met with resistance from someone very close to them or.. someone living with them?  Yeah.  Well.  That's where I am and where I've been.  And now that prednisone has put weight on me I have to struggle to take care of that, because dieting doesn't quite cut it.  There's a lot of different physical mechanisms in place that thwart that.  Not that you can't lose, but it takes a lot more diligence.

I've spoken to T so many times now about not bringing home junk food and garbage food.  The junk is easy to avoid, but T's favorite thing in the world is frozen food.  Ugh.  Nasty stuff.  Okay on occasion, but for me.. it's wrecking my health beyond reason.  Too much sodium and sugar, too many processed carbs, not nearly enough veggies.  Why even bother buying that crap?

Each weekend T insists on buying the groceries.  In my current state I can't really go anywhere anyway, so I'm at his mercy.  How is it he can easily forget the stern warnings from my doctors about eating as clean as possible... is beyond me.  And not a single discussion, and there've been MANY, seems to get it through his thick skull.  smh.

So he chooses 'easy and cheap' despite the warnings, the risks, and the damage to my already compromised health.

I was told yesterday that my triglycerides are up AGAIN, and now my ferritin is elevated above normal.  NEITHER of those things are good!  *sigh*  WTH am I supposed to do?

I'm still searching for answers to this because, honestly, this is a very dangerous road to be on for me.

Dammit.

"You've chosen lessons of pain"

I received a message with this video in it yesterday.  I have no idea who the person is who sent it... but, oddly.. this is one of my favorite songs and one I listen to every night.  Headphones on, dark room, and songs to obliterate the thoughts....

"G" gave me an ORDER! OH NO SHE DI'NT!

OH yes she did! ;p  And then we cracked up, drank coffee, and drained our cell phone batteries talking.

Basically, we have this same conversation about twice a month, sometimes more often depending on how much I put into my blogs.  You see, she has ONE blog that she pours absolutely everything into.  And that works for her.  Not so much for me.  So, on occasion, like yesterday, she told me I "Absolutely must" put re-share the links across my blogs so people realize I'm not always saying the same thing in all the same places.  Okay.  If I must. ;p  She's a good egg, so I'll indulge her every so often.

The one thing I'm not on board with is her insistence that I talk here about the same things I talk to HER about.  Yeah, no.... I don't think ANYONE is ready for THAT! lol


NOTE: The links below can also be found on the menu section in each of my blogs.  Easy peasy. ;)

My other blogs:

Boo's Juicy Bits

This Free Spirit

Where Fireflies Dream

The Crap I Spew

All Things Ephemeral


Happy now, G?  Now let's see you bring some order to that mincemeat you call a blog. (*snort*).

Yeah, we've been friends for several years so can jab at each other.  All in good fun.. :)

Anger? Surprise? Inspiration at its worst? WTH?

REPOST from my other blog(s):

Sometimes I get a spark of something that inspires me.  Such inspiration doesn't always present itself in the best way, though, but I usually try to go with it when it happens.  Such gems shouldn't be taken for granted but taken advantage of.  It really is that rare.

In the midst of fighting for every drop of energy that can be found wherever it is I can find it, a tiny burst will make its way into the day and nudge me.  Okay, I can certainly deal with that.  Wish there were MORE of it, but I'll take what I can get and go with it nonetheless.

The fuel for this little 'fire' isn't from a good source, definitely not a positive force, and most definitely not from a pleasant source.  Be that as it may, there it is... kind of like when your dog has an accident and you're left looking at it wondering to yourself what you did to deserve such a... 'gift'? lol  Okay, okay... enough with lame attempts at comedy.  Even so, the conversation with a friend of mine earlier today was what ignited this whatever-it-is and sent me on a journey to try and put my thoughts in order.  I found the results of that rather.. lacking.

All this blabbering, to be honest, is just my working through it all.  Not the conversation, because that was interesting and creatively invigorating.  But the chaos I'm dealing within the thought process at the moment is simply trying to pull together the shards of data that's left from past experience.  Anyone who understands this knows where I'm coming from.  G knows.  She gets it.  And, from what I read on her blog(s)... she's been able to run with it without tripping like a clown every step of the way that I've been.  Eh.  I'm still confident that this purging will eliminate the chaff and reveal the good stuff.  I'll be back to discuss that when it happens.

Life. Food. Oxygen. Determination. And good old fashioned letting go.

There's been a few times in my life where I had to make some really difficult decisions.  In those times it was absolutely necessary for my health and well-being to take those uncertain steps, but because I did I ended up on the right side of life... MY life.  No longer at odds with that which seeks to crush what and who I am I was free to live life the way I was meant to---my way.  It didn't mean I ended up rich or famous, it simply meant the burden of other people telling me who and how to be was no longer an anchor on this particular ship.  And it was a most beautiful thing to experience.

Sadly I find myself in that unfortunate circumstance again.  But at least, this time, I recognize the beast for what it is.  The next steps are fully mine to choose and implement.

Having been on prednisone I have to deal with the S*L*O*W process of healing my adrenal glands and waiting out the unpleasant effects.  This means being patient with myself about the weight it put on me.  All the dieting in the world can't thwart the effects of corticosteroids but at least I'm on my way and focused on what needs to be done.  I know where I am where where I need to be.  Unfortunately, T is on the opposite side of that fence lining the road to my goal, choosing to stand on the outside and basically attempting, in a passive-aggressive manner to trip me along the way.  WTH, right?

I've always been in my best health when eating clean, and that means food as close to nature as absolutely possible.  And, it's also one of the cheaper ways to eat if you're careful.  At this time it's really not about the cost of eating healthy but being forced to battle against someone who puts convenience over health.  Honestly, it's a source of utter contention when those confrontations arise, and oh but they do arise.

Fighting for my life:

In my current circumstances I find myself at the mercy of someone who literally doesn't care that eating poor quality, unhealthy food is positively dangerous for me.  Without going through the list of 'ills' again let's just say that eating pre-packaged, frozen, processed garbage (and it is garbage) is only going to deteriorate my health more rapidly than any disease process alone.  And I have to ask myself at this point---"What am I willing to surrender?"  The answer is always the same--I'm not willing to surrender ANYTHING when it comes to my health and quality of life.

Although there IS a huge part of me who's given up recently, and mostly because chronic pain, fatigue, weakness, nausea, etc., etc. has simply worn me down to the bone.  My will and determination ebbs and flows from day to day so erratically that I can't stay the course, so to speak.  Every day I find a little determination and motivation, and every day I give up.

I FEEL my body's struggle within.

My attempts to explain and convey this to T falls always on deaf ears, and this many times is where I give up and let go.  At that point what little energy and hope and determination I have recedes completely leaving me so exhausted that I have to sleep.  Many times, though not always, a short nap can restore me.  I guess just allowing my mind to cease battling against T's refusal to understand how critical clean eating and living is... well, I guess it's the only restoration method I have.

I understand full well what I'm facing here.  Even in the physical condition I'm in.. if I don't eat right, clean, healthy... I'm simply spinning my wheels.  The stress in and of itself creates and exacerbates the existing problems which also doesn't help.

What do I do when I can't drive right now (because of my arm.. possible torn rotator cuff) and can't go shopping for myself, when giving a list to T when he goes to the grocery store only means he returns with over-processed food and junk (desserts, etc).  What do I do?  These foods also don't sit well with my gastrointestinal processes (to put it nicely) and almost always makes me sick to my stomach.  I'm severely lactose intolerant, but these pre-packaged foods often have sauces in them that contain milk and cream.. NOT good at all.

I know what I need & what I must do to help myself heal.  I'm not claiming it's going to be a miracle cure or anything of the like but it IS necessary given the serious health issues I'm dealing with.

I'm alive.  I need to eat clean, healthy.  I need to exercise, to 'breathe.'  I'm determined.  But T isn't.

So at what point do I let go completely and insist on saving myself?  Why on earth is my life even up for debate?

I'm risking much by making the choice to stop taking medications, but it's critical right now as the side effects I believe are taking me out at the knees.  I have 3 more to come off of and.. I WILL.  But that's not enough.  Even I know that much.  I have to do so much more, including eating healthy and exercising even if I feel I can't.  Overall it's quality of life, not quantity.  Either way, destroying my health further from the inside out is about as foolish as it gets.

So tell me---how does one talk to someone who's deaf to reason these days?

Rhetorical question.

Chicken, fish, salad, cooked veggies, fruit, yogurt, and minute amounts of non-white/processed whole grains.  Seriously.  Is that really too much to ask???

Not managing this well at all.

I rather let it all out on Where Fireflies Dream So, I suppose I won't do much here except point you in the right direction.  It is what it is, and it's definitely one of those days.

*sigh*


I'll be back here in a few....

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.

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....

Spent and at a loss for words.

Sounds like a clear sign I shouldn't be posting, doesn't it?  Yeah.  Probably.  But I'm here just the same.  I'm about 5 minutes into taking to my bed, putting on the earphones and trying like hell to disappear.  I never know how this will go, to be truthful.  Sometimes I fall asleep.  Sometimes the music makes me feel better.  Sometimes anxiety comes into the picture.  But physically I have no other option.  When my body gives out, it just gives out.

There's more to what's going on that AIH.  Pulmonary involvement and other signs and symptoms also point to Myositis or Sarcoidosis.  I've no idea what the answer to it all will be.  I just hope like hell those answers come soon.

I'm not going to make any sense at this point because I'm too flipping tired.

The Similarities of Day to Day Life.

Or shall we call it "A life of perpetual sameness"?  Either way, I'm going to make damn sure I change this.  I have to.

I've posted enough here for you guys to know where I am at the moment.  Dealing with communication and respect issues from T, issues that make themselves known every day and every night without fail.  You also know by now that my tolerance for this is extremely thin, verging on non-existent.  Notwithstanding innocent goof and human blunders, somewhere in the chaos one has to actually SEE the damage being done.  "I" see the damage because I'm a recipient of most of it, but T sits quietly on the river "Denial" and refuses to move.  Ok.  Whatever.

He doesn't like my bluntness and doesn't want me to say aloud the truth that threatens not only to completely destroy this relationship, but the truth that's destroying my peace of mind, health, and happiness.  He's in blissful ignorance, so I don't have any choice other than to say exactly what's on my mind.

When I'm trying to open a discussion, when I need to point out behaviors in someone that TRULY need addressing, I use non-combative phrases.  I speak of how I feel, what the harmful behavior is, but I don't point fingers, name-call, label, etc., because that approach causes damage as well.  I know how to communicate, as long as people allow me to communicate.

Repeatedly disrespecting me is a huge deal and would be for pretty much anyone.  Not allowing anyone to disrespect me was a lesson only recently learned, so I'm still a little awkward with it and finding my balance and strength when approaching the subject.  I'm getting there.  Now, in the process I've become fairly blunt when I've taken all I can, and all PC is out the window.  I speak my mind now while doing my best to preserve the other person's (in this case T) self-esteem.  I've no interest in becoming what I most despise so won't allow myself to go there.

T believes that when I point out what he does that hurts, offends, and disrespects me.. that it's a form of disrespect and that I shouldn't say anything at all.  But I assure you, that approach NEVER works and is, in fact, quite harmful to relationships and the individuals.  If I shove down my feelings, ignore the disrespect, and take the punches in silence... I will eventually resent that person, and that person right now is T.  No matter how I try to explain this--he doesn't get it and shows no indication of trying to understand or stop the disrespectful behavior.

Again, as I've said many times before, I'm not trying to make T out as a bad guy or to demonize him. He's NOT a bad guy--he's just blind to the things he does and doesn't do that greatly and adversely affect me in so many ways.  I hang in there for the obvious reasons, and I do so because I hold hope very close, hope that he'll see what he's doing so it can be stopped.

I may be a bit foolish for relying on hope this way given my past experiences and hope-filled failures.  But there's no reason NOT to hope.  In fact, hope is the great buffer of all things, isn't it?  Life tends to slip apart when hope is lost.

Damage control: There's been a lot of this with most being unsuccessful.  And I'm no stranger to damage control given past relationships that left me holding the weight of fixing everything.  One person CANNOT fix a relationship, nor can one person break it.  If a relationship is going bad, guaranteed there are TWO people at fault, even if it's the behavior of one and the acceptance of that behavior by the other.  It takes two people to break a relationship and two to repair it; an absolute truth.

Sometimes there are victims, yes, but 'most' victims are willing.  Meaning, when you have a way out of a bad situation and don't get on board with preparing things, and if you stay and suffer the damaging consequences.. then you've willingly participated in that damage.

As for me, I was a willing victim.  I played the martyr in love more times than I like to admit.  My role in a past relationship which did a LOT of damage to my self-esteem, body, etc. I take full responsibility for.  I remained in a bad situation, and though I believed that he and I could fix things I refused to see and acknowledge (for far too long) that the weight of that burden was planted fully on me.  I should've left at the first sign of serious problems.

I should have bailed when the relationship began changing the way I saw myself, how I thought of myself, when it began to depress me and fill my entire world with anxiety.  I should have been my own best friend and stood up for ME.  Instead, I did everything I possibly could to change into the distorted version he wished me to become.  It doesn't take a genius to understand that my acceptance of abuses, be they emotional or physical, would nearly destroy me as a person; I get it NOW, but I didn't get it THEN, not until it was too late and the damage was done.

I had to forgive myself more than the other person, because it was ME who let myself down.  I didn't have my own back, and I allowed everything till nearly the end.  It wasn't until I had a TIA and ended up in the hospital (very shortly after the last blow up) did I realize to what degree I'd been beaten up inside and how it had shattered me.

In the hospital the doctors asked about my level of stress, had I been dealing with major life changes such as a death in the family, financial hardship, and/or a breakup.  That was the first time the lightbulb went on and I began to introspect as I lay in that hospital bed with nothing but the hum of the heater to interfere with what came to me.  The realization was harsh, brazen, and shattering in its truth.  I had to get out of the relationship; I had to let go; and I had to do it to save my life.

This wasn't a comfortable awareness when it came blazing out of the deep recesses in which unpleasant things go to smolder.  But there was nothing I could do, really, but allow it into the light and face what it was, what I'd always known but refused to acknowledge.

So the burning question for most people at this point, after hearing/reading about my experience, the question everyone I knew at the time had is: Why the hell did I stay so long?  I stayed because I was in love with him.  Isn't that why any of us stay in bad or toxic relationships, because of our feelings and our sometimes misguided hopes that he/she will change?

I wouldn't find out until much later, until it was far too late and the damage was taking over my life and destroying happiness, that the person I fell in love with didn't really exist.  If you've read my blogs for a while you've heard me say this, and that's because the realization that I fell in love with a lie is profound and one I struggle with today for obvious reasons: You can't say goodbye to someone who doesn't exist.

The mask slipped and I discovered the truth beneath.

To this day everything about me struggles to reconcile who I thought I loved with who I was actually dealing with.

I believe that this problem of irreconcilable truths, for me, is fanning the flames of what's happening in the current relationship.  While I knew this was a possibility there wasn't any reasonable way to prepare for the experience itself.  On one hand being protective is necessary, but on the other hand.. always being poised in defense isn't a good idea either.

This emotional struggle could end with closure; something I will never have.  I can't say goodbye to someone who never existed, now can I?

Yeah... and therein lies the biggest problem of all.  This fight, this struggle permeates day to day life.  T's disrespect, whether purposeful or accidental permeates day to day life.  Health problems worsen and take over day to day life.  There seems to be no end to this....

Too Weak to Care.

Well, that's only partially true.  I care about my life, my health, my well-being, but it isn't easy when there is absolutely no energy or strength to deal with, well.. difficulty.  Today is a day fraught with fatigue and weakness, and the inability to make sense out of everything that's going on.  In other words, I suppose, this is just a typical day.

"Typical" has lost its meaning for me.  Is "Typical" now a significantly decreased quality of life?  Is "Typical" interchangeable with "Normal" in a way that crushes all hope of feeling better?  Finding answers to these and other questions have proven to be nearly impossible, and in the wake of confusion, in the midst of medications not working or bringing too many bad side effects on-board, while switching from one medication to the next, as my health continues to deteriorate... where in this do I apply the words "Typical" or "Normal"?  I honestly can't figure out how to do that without disintegrating any and all hope for improvement.

What a crappy trade-off.

I'm just too tired to continue typing, but I hope tomorrow will be a better day...

The Death of a Diet.

Completely convinced that I'm turning into a human sponge, today marks the first of my accepting the fact that any hopes of dieting off this prednisone weight gain and swelling is just not going to happen until I'm off the stuff.  It's become majorly apparent that I'm sensitive to it (as I am to all medications) and that I'm going to be living in the throes of prednisone hell for some time to come.  But can I handle it?

I have a new appointment to see my liver specialist tomorrow.  I had to make a call to the after hours line due to some pretty serious swelling in my face that has gotten too close to my eyes.  Not sure what it is, but I know it's alarming and NOT in the least comfortable.  Could be from being ON prednisone, could be from coming off prednisone (possibly coming off too fast), or it could be from another medication or from a new problem that's rearing its ugly head.  I've NO idea as the variables involved are came on board about the same time.

How does this affect dieting, weight loss, etc?  Well the answer is right there in my statement; prednisone.  It's a monster that's going to win every fight, as it's actually designed to do.

What the above means is basically I have to practice acceptance and patience and allow myself to not stress about what's happening, because the reality is: it's a battle that can only be won by surrendering.

If it's not one thing....

....It's another.  Such is life, right?  Enter, Prednison---and gone are the days when 'dieting' takes off the pounds and inches.  Now aint that some sh*t?  Most people have to diet while on Prednisone just to maintain weight or slow the gains.  And there is absolutely NOTHING you can do about the chubby face, etc.  Once Pred is stopped and the body resumes normal function of cortisol.. things will go back to normal.  In the meantime, I feel like freaking Violet!  Ugh!

The pic on the left is how I USUALLY look, but I can hardly recognize myself at the moment due to the chipmunk cheeks and overall massive bloating.  *sigh* I honestly feel like Violet... *sigh*

Will I get back to that same level of health?  I wish I knew.  The Prednisone bloat/weight will go away once I'm off the Pred, and I'm hoping everything will be back where it was prior.  Thing is, that photo of me was taken even while I was unknowingly in the throes of the AIH.  It's all in the eyes, too... I look tired.  But oh boy, right now my eyes are ridiculously swollen (like the rest of me), and my eyes are sunken with very dark circles.  For all practical purposes---I look like a sick person.

Will I ever look or feel well?  This is the burning question I have day to day, and as much as I set out to overcome the 24/7 hunger, eat ONLY the right things, I end up giving in at some point in the day.  It's relentless, but I can tell it's already getting better now that I'm down to 15mg/day of the Pred.

As I'm tapering, I'm wondering about how drastically my diet is going to change given the circumstances OUTSIDE the Autoimmune Hepatitis.  Low salt, low to no sugar, low fat, and possibly having to give up all the things that irritate the stomach and intestines, such as wheat, dairy (including eggs), and significantly reducing the amount of fruit I eat.  I've not been eating much fruit at all, though, which I do wonder about.  I love fruit but have lost my taste for it, and many other things, over the past several months.  Part of this, I think, is due to the medications altering my sense of taste, but I also believe that there's more to it as well.  Either way, I wonder what I'll be left with to eat once problematic foods are eliminated?

Low protein, low salt, low to no sugar, avoid processed foods when possible.  I just don't know, but it's not going to be easy to do this.

Leaning on the idea that exercise is supposed to be good for me, KNOWING this is the case for people, all the questions regarding the possibility of Myositis being one of the problems are still there and unanswered.  I've yet to get on that exercise bike because I know that if it is myositis and it's in an active stage, exercising is a bad idea because muscle wasting/damage occurs when the disease is active.  You just can't 'damage' muscles if they're already be damaged, because they won't repair.  Exercise creates muscle damage, and it's within the process of repair that they're made stronger.  This isn't the case with Myositis.  Neato, huh?  Yeah, not so much.

I'm tired of the IF situations.  Oh you've NO idea.  And feeling how weak my legs and arms are even ON Prednisone sets off the warning alarms inside, cautioning me to hold back until I have the go ahead from my doctor.  Looks like I'm going to have to see another rheumatologist as this is their territory.  I won't go back to "Dr. Mumbles."  Honestly, Dr. Mumbles really should retire.  When you disconnect from your patients and spend less than 5 minutes talking to them, when it's obvious you're pretty much going through the motions to the point where you miss significant findings.. it's time to retire.  It's just time to retire.

Well, it's that time of day again... when my energy begins to crash and my limbs become impossibly weak and tired.

I'm out of here.. for now.

Really?

Shakeology is an awesome product, and it tastes really really good.  It replaces a meal, or two if you can spend that much money per month (I replace ONE).  Sounds easy, and it used to be.  But what I have to deal with NOW is that the weakness I have, the weird and excruciating lower back pain (despite the prednisone, no less) actually prevents me from being able to stand and MAKE that shake!  Is this the Myositis part of my current life experience?  Is it something else?  I mean, really?

I have to wonder where this is all leading.

So what's the solution to this?  I've NO idea.  Having to lean my elbows on the counter JUST to be able to stand there at all doesn't exactly allow for making that shake every morning or afternoon.  WTH?  *sigh*

The rest of my diet has changed dramatically due to this as well, and since I can't even stand long enough to make a sandwich.  The unhealthy alternatives, you know... the ones that you can quickly nuke without any preparation, well that's become my way of eating.  Trust me, this is not a good way of eating if you're goals are good/improved health.

I've considered replacing dinner with a shake so T can at least help.  I'm not sure how that will work, but it may be the only solution to the problem at this time.

This weakness stuff is ridiculous....

*ugh*