Nothing Tastes Good.

It's been a long road, this whole health thing.  I've yet to commit to a 'diet' to lose the prednisone weight, because choosing the right way is critical due to liver issues and other issues.  One diet may help one thing, while yet another may hurt something else.  It's a struggle, and one that I wouldn't wish on anyone.

Shakeology is still my goal once I get a few GI issues under control, and sadly... I'm now lactose intolerant so have that to contend with.  Overall I understand where I am, where I'm heading, and where I need to be if I want to be healthy again.  Now, the cooperation I'm getting from T... or actually the lack thereof is yet another battle on top of the others.  What a freaking mess.

But nothing tastes good.  I've yet to find out what's up with that, but truly... nothing tastes good.  My appetite isn't in my 'stomach' anymore but in my whole body.  The only way I know I'm 'hungry' is when my body hurts and I'm dizzy, etc.  I really need answers to all of this to know where to begin.  If I were to just dive into 'dieting' I could do more harm than good.

On a higher note---I, for some reason, lost 19 pounds without trying.  Well.  I'll take it!  Still, getting to the bottom of things is key for me to make the commitment to eating a particular way in order to lose weight.  That's very important when it comes to the autoimmune hepatitis I deal with (in remission at this time, so that's good).  Losing weight too quickly also is very hard on the liver, so there's that.

My goal is to see my endocrinologist next Thursday for a follow-up after labs and see where I stand and what I do next.  Once I get the green flag I'll commit and hit the ground running---metaphorically speaking, of course.  I also need shoulder surgery for the torn rotator cuff that's making my life a living hell at the moment.  My Endo will also advise me on that based on labs so that I can have the surgery without a dangerous adrenal crash during surgery.  Once the shoulder is healed post-op then I can focus on exercise.  And trust me, most movement causes horrific pain, so I can't do much of anything at all at the moment.

Last but not least.... T needs to get out of my way and allow me to HEAL.  I've addressed this in my other blogs, but suffice it to say... he's not an ally in this journey.

Till next time....

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....

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.

When I'm without my voice, music...

When I'm without my voice, music...

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....

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.

Healing

Having some Saturday alone time is a rare treat for me, and I call it a 'treat' because the weekend vibe as it is in my life right now is different than it used to be.  Being stuck indoors all day, every day, because of health issues is less than optimal for a happy, health life, and definitely not too good for a healthy body and mind.  Still, I make the best of what each day gives me, even on those days when I'm brought to my knees by symptoms and issues I can do nothing about.  Alone time is the time when I decompress, and it's an absolute necessity.

The minutes are ticking away as I type this, meaning the minutes I have in the peaceful quiet.  So why am I spending this time typing in my blogs and doing mindless things like surfing the internet?  Because I CHOOSE to.  It's really the point, isn't it, to make our free time what we want.  Of course it's the point.

One more cup of coffee.  A few more minutes of peaceful stillness and quiet knowing it will change in roughly 45 minutes to an hour.  I'll take what I can get and use it for whatever I want.

My world is colored in shades of white, green, blue, and cheap, durable tile; something many hospitals and clinics have in common.  So sitting in my own space where I'm surrounded entirely by NON-medical-related decor, sights, sounds, and smells, I can improvise throughout the day depending on what is often the unpredictability of living--at least in my life anyway.  I can predict nothing, so I expect nothing, and I allow everything.  On the surface this sounds risky, but I promise you it's not.

I long to have the strength and stamina, to be without pain long enough to continue to create my environment in such a way that it promotes healing.  REAL healing.  Not the medicated type of healing, but real healing.  While I know and appreciate what the medications are doing to save my life, even to promote a better quality of life (leading to), I'm well aware of the things that have yet to be addressed.  Back pain is now the front and center of my days and nights and all I can do is ride it out until someone discovers what's causing it.  Exercising patience is difficult in the face of chronic illness and pain, but it's necessary.

While the overall chronic pain began to cease with the addition of prednisone, something else is revealing itself at the same time.  This, like everything, happens for a reason, so I understand and accept that this is a message of some kind, the pain being a warning sign that something is still amiss.   Healing will come when the answers come.  I just need someone to ask the questions now.

What's left of my quiet morning will end soon.  T will come home and things will change, though it doesn't really have to be for the worst.  If he would just tune-in, plug-in, and open his eyes... I think things could go a bit smoother than they have.  I can't open his eyes or make him listen or to be aware or anything at all.  It's up to him, ultimately, to plug-in or not.  I have to focus on wellness, healing, and regaining my strength, vitality, and even my passion for life, for being alive.  Unless you've lived with chronic pain, with a chronic illness (even if you didn't know you had it for a long time), you probably wouldn't understand any of this.

But I understand all too well.

I'm glad my morning was quiet and still.  I'm grateful to have had that today, even if for just a few hours.  I'll relinquish that quiet to the busy life of living with another human being, because I have to, because it's necessary, and because I should.  I won't say I 'want to' because what I really want is to not have to relinquish peace, happiness, tranquility.  No one should have to relinquish the better part of being, should they?  I don't believe so.  But I will today, and I will tomorrow, and I will next week and so on until T takes the time and initiative to work through some things that are completely destroying having a peaceful life together.

Do I long for the days when I lived alone?  Do I miss the imperfect peace I once had as a single person?  Yes.  I absolutely do.  It's FAR easier to live alone than with someone.  But easy isn't always best, now is it?

I want best, not easy, but at the same time I also believe BOTH can exist simultaneously.

Reaching the bottom of the coffee cup as the second half of the day looms ahead.  So much to do, so very much to do.  I'll miss the peace I've had the first half of my day.  Tomorrow my exercise bike will be delivered, and the office/exercise room needs attending to make ready for that delivery.

I really will miss the peacefulness of this morning.  I really, really will.

Trump Supporter Kambree destroys National Review

I'm posting this across my blogs, because this woman speaks for SO many of us.  The original video she made is a lot longer than this, but this gets to the key points directly.  She speaks for SO many of us....

First Labs Post-Prednisone & Azathioprine

So looks like another medication is being added to the list--Lasix, a water pill.  This is needed to reduce the amount of EXCESSIVE water retention caused by the Prednisone.  I'm really glad to know about this addition, though it's going to be rough heading to the bathroom constantly.  Oh... but I'm SO very glad to do so!  You've NO idea.  But there is other news as well...

Liver enzymes: At the start my liver enzymes (which is NOT a liver function test) were elevated some 7-8 times that of normal, depending on which end of normal you do the math from.  Considered by the doctors I saw these were considered "significantly elevated."  Some people have way more elevation than that, but apparently research says that the actual numbers don't always indicate prognosis or how significant the disease is at the time of diagnosis.  But today, thankfully, I'm told that the one enzyme that is still elevated is only elevated by a little now and "Much better than where it was before." YAY!!  That's good news!

While I have to wait to get the labs actually in my hand to SEE them, I was also told that some tests came back showing mild muscle inflammation.  Not sure which test that was, but it doesn't really surprise me.  I have labs rechecked next Monday also in order to make sure the Azathioprine is helping, and not hurting things.

Good news, right!? :D  And hey, as long as those numbers go down and into the normal range, I can deal with some side effects from Azathioprine.  I mean, as we go along this journey the prednisone will be tapered... and THAT is DEFINITELY a good thing!  Not treating AIH means possible progression to cirrhosis.  Only thing statistics say about this that I don't like much is that 80% of people who go OFF medication to control AIH have a flare up within 1-2 years, and it often comes with the nasty addition of fibrosis or cirrhosis.  Yeah, I'm okay with medication inconveniences over death, thank you. ;)

So what's the deal with muscle inflammation?  I've no idea.  Guess that may be addressed next... we'll see.

How's that for some good news? :D

Reality and the Mask of Acceptance

When I first created this blog I had a couple of intentions in mind: 1) To talk about diet, exercise, health and healing, and even sex.  2) To journal while navigating my way to better health.  Well, to say things were derailed rather quickly would be an understatement, but it doesn't mean I've abandoned my original purpose here.  While the theme still exists, so do those things that came in to completely throw me off-course.  Hey, that's part of the process, and the discussion doesn't really change all that much.

Blunt is good most of the time.  But let's face it, in polite society and circumstance requiring a bit more tact the conversation WILL change somewhat.  But THIS isn't polite society, and PC isn't the name of the game here.  While I have pulled back hugely when posting here, that's going to come to an end before long, because I'm simply too sick and tired to sugar-coat anything or leave out those details I really need to add to the conversation.

I know my reality.  I've talked about my reality.  I'm dealing with a chronic illness that gives little clues as to how it's going to progress in my life.  AIH isn't anything to take lightly, and I don't intend to.  Having said that, I'm adding that THIS is my new reality, one which I have to live with, deal with, and include in my blogs.  This isn't to say I'm giving in to the disease, btw.

Acceptance is a funny thing.  Anyone who's had to work their way to acceptance of any situation or circumstance knows that accepting what is can be a real bitch.  It's no different for me.  But acceptance is often something we WEAR, rather than something we have or do or feel.  It's true!  Think about it.  For example, the stages of grief END with acceptance, but what people forget is that the stages of grieving ISN'T linear but CIRCULAR.  We circle back and forth between those stages and no one can say just how long it will take before reaching acceptance---or even if you'll stay there once you arrive at that point.

It's just another mask we wear from time to time.  Acceptance isn't a dead-end destination and never will be.  For those who've been reading a while, you know I've gone back and forth with that whole acceptance thing quite a bit and am still going through it now.

Okay, I'm really tired and am going to talk myself into shutting up for the rest of the day... maybe. lol

Hello World...

I honestly didn't think I'd have anything left in me to post here today.  I did a bit of unloading in the other blogs and found that I really needed more caffein to carry on; I'm good with that.  With my cup of steamy nummieness sitting next to me I'm going to try and make some sense out of my out-of-control swinging appetite and the mess it threatens to put me in.

Prednisone.  I've now been on it roughly a month, still at 30mg at the moment and will be tapering down on Sunday.  Monday is when my blood work comes back and I know if it's safe to proceed to the next upward dosage of Azathioprine.  I will be going, I believe, from my current 50mg/day to 100mg/day.  The goal is 150mg/day.  Getting there will be interesting with all the side effects that come on at first and with each increase in dosage.  And then there's the high caution I'm in right now with regards to anything flu, cold or infectious anything at all.  My immune system is on overdrive, so suppressing it is critical.  With Prednisone AND Azathioprine on board my immune system is winding down to a steep low, which means I have to be extremely cautious with who I'm around.  I can't risk being sick.

My biggest worry--and I will get back to the diet/nutrition thing in a moment--is T.  He's not careful with using antibacterials on his hands, and yes.. he washes his hands but not to the extent he needs to now that he's living with someone who's immune system is purposely being suppressed.  He doesn't get it, and he forgets that he has consistently brought home colds and flu every year.  Regardless of his getting a flu shot, he gets the flu and brings it home.. every.. single.. year.  Colds as well.  He gets over the colds and flu fairly quickly, but as of right now if I'M to get a cold or the flu... it could end VERY badly, such as in pneumonia.

I feel like I have children at home again, always reminding him to please wash his hands when in public, or after going out in public, and especially if he's around someone who's sick.  I see him not doing this, and I remind him... constantly.  Why can't he remember himself?  Ugh.  smh.  I have to stop talking about this because it's extremely upsetting.

At any rate, the nausea that began yesterday continues, though not as bad.  It's a gross feeling in my stomach and back of the throat, and my taste buds are completely off at the moment.  I suppose this could be worked in my favor, considering.  But I'm not sure due to the fact that it seems my blood sugar drops, or does something, off and on during the day, prompting me to have a snack of some kind.

No shakeology again today either.  I love the taste of those shakes, especially since I had a tsp of orange extract to the chocolate, or the vanilla... it just tastes awesome.  But that nudge of caution is there just the same, to be careful of what I take in.  I have almond milk now, so I can do away with the dairy worry.  But still...

I'm no closer to any answers than I was a week ago, and my goals are clearly seen but out of reach due to T dragging his feet on important decisions requiring ACTUAL ACTION on his part.  Like the recumbent exercise bike for the back office.  The bike is chosen, he just has to order it.  And he's a procrastinator unlike any procrastinator I've EVER met.  OMG.. you've no idea.

So this morning I remind him about the exercise bike.  What does he say in response?... "I will have to measure it to see if it will fit in there."  HUH?  Seriously?  We spent last weekend moving a bookshelf from the office to the huge dining room, and a big doll cabinet (for my art) into my art room, emptying some boxes and moving the file cabinet, etc. to make room for that bike.  They don't come in different sizes, not when they're the high-quality ones for commercial use.  They come in ONE size, and knowing that size we made room for it.  So what's the deal?... Well, that one is easy to figure out...

You see, T isn't really much into anything if it's more than 4 or 5 inches outside his own skin.  He sees things from his perspective only, and he makes decisions based on HIS wants and needs and no one else's.  We were supposed to have ordered this bike MONTHS prior to moving, more than a year ago actually.  Now, it's a good thing that we didn't because it would've been a total bitch to move, but this is representative of to what degree he will put something off unless it only benefits HIM personally.

I'm told to listen to my body and don't push things too much, but I'm also told to try and incorporate some exercise into my life each and every day if possible, or as many times a week as possible.  T and I agreed that, for now, joining a gym would be far more costly in the long run, and it won't be nearly as effective because there will be days when I'm simply not up to driving to the gym and back. We discussed and agreed on an exercise bike for here at home, something even he could use.  Now he's hedging again as my health remains in the balance.

I'm really at a loss as to what to do.  He doesn't really keep me informed as to what's going on, decisions he makes, etc., which makes me feel like an outsider.  And.. I'm getting off-track here a bit, I know.  But his decisions are impacting my health, not HIS.

So while the wild switches between terrible nausea and raging prednisone hunger (which happens very little if at all the last couple of days), I'm left with only exercise to balance things out, and I need that bike to do it.  My stamina for standing at this time is at rock bottom...

What to do, what to do?  Wait, I guess, and see if he decides to ACT on anything.

I'm not holding my breath....

For those who've left comments here.. THANK YOU!

So it seems comment notifications haven't been working in a VERY long time, so if you've left comments and I didn't reply please know it's because I didn't realize anyone had left any.  Blogger seems to have fixed this.. for now.

I appreciate everyone's feedback, more than I can find words to describe really.  I guess, with the exception of those I know 'in person,' or those who contact me via social networking or email, etc., I often wonder if I'm just shouting or whispering into the wind here.

It was my hope that sharing my own experiences would help others, or make people laugh, or think... well, then it's all well worth it, especially with regards to "This Free Spirit," which was created to help work my way to a healing place post-abuse and hoping to help others along the way know they're not alone.

So again, if you've left comments on any of the entries on any of the blogs and I haven't respond.. I will.  And hopefully Blogger's notification system re comments will continue to work!

Blessings and thanks to all of you...

Shakeology--a skipped day way too soon

So if you've read my other blogs you know it was a busy day with a rough beginning.  I'm lacking sleep and too tired to get my head on straight.  Hell, that just takes too much energy, and right now I'm in the throes of needing a nap.  It's crazy, but this day is going to continue being busy as the cable guy AND a contractor is coming over to look at a couple of things that need addressing.  I'm afraid at this point T will be the only one dealing with those two visitors, because I'm most likely going to be sacked out when that time comes.

He can handle it.

As for me, I didn't eat breakfast until after my first appointment today.  No Shakeology shake to help infuse the good stuff in a body that needs really needs it, and just a tad overboard with salt today which is at the moment kicking my ass in more ways than I can describe.

I like the way Shakeology tastes, and I love having it for breakfast.  However, today it may just end up being a supplement to the days' intake of nutrition because I don't see having it for dinner.  I'm starting Azathioprine and MUST take it with a large meal or risk the lovely vomiting episodes that ensure shortly after ingesting on an empty, or mostly empty stomach.  No thank you, I don't don't do the vomiting thing if I can help it.  It's a balancing act, really, trying to drink this, take that, eat this or that at particular times and so on and so forth.  I'm sure I'll get used to it--just not today.

It's been a long day so far.  A very, very long day.

C'mon bedtime--you simply can't get her fast enough.

P.S.  Nausea, you can get the hell out of my life now, thank you very much.

Shakeology day 1

What's there to say other than I drank my first shake today, replacing breakfast.  It's a step, and the shake is full of healthy goodies that will do my body good.  I have a coach, since I'm part of the ongoing plan Shakeology has, and I can ask her questions whenever I wish.  That's a good thing, and a definite plus.  I realize my situation isn't the norm, and I'm fighting against the prednisone weight gain, something I'd not gotten past since the last time I was on prednisone (for other reasons).  Being realistic about this means I know I'm doing something good for my body and spirit, even if my opponent (prednisone) is going to ultimately thwart any real weight loss goals at this time.  It's okay, because I'd rather be alive and NOT develop cirrhosis because my body image was more important than my body.

Exercise:  Given that my other opponent is the one I'm living with (T), that is yet another hurdle I have to clear.  One room designated as his study, as well as an exercise room, remains cluttered and not at all useful.  I've done what I personally could do, and the rest is up to him now.  What this means is week after week passing with excuse after excuse becoming the burnt offerings of an indifferent and uncaring individual who refuses to see how utterly important, necessary even, this is for my health and survival.

Today I'm putting my foot down, though.  My health can't wait.  This AI disease is a vengeful bitch, and I'm not about to allow it to take me over.  Exercise, eating right, having a peaceful inner spirit, calmness, all of that has to be in place to fight this.  Right now T is in the way.  Being blunt here, but he is absolutely in the way.

I've done all the footwork with finding a very good exercise bike to have at home.  I know how much space is needed in that office, and I bought a tv and blu-ray player to go in there to help pass the time as I exercise.  The cable is also ready for that tv as well.  And the room sits cluttered with boxes and crap that have yet to even be touched by T... much of it is his own stuff.  His lack of motivation and caring is crippling... to me.  HE is unencumbered by his own indifference, as he allows his own health to fall to the wayside.  I'm not going to do that to myself, and I'm completely done now with putting my own health aside for the happiness of another.  I have done that too long, and to my own detriment.

I'm on my own side now, in my own corner, standing up for myself, my health, my happiness.  If not me, then who?

Exactly.

Saturday

Tomorrow is Saturday, and the day my Shakeology is to arrive.  I have a plan, a fairly well thought out one as plans go, and I'm not mentally preparing to go this alone as no support network actually exists for me.  But the lack of a support system during these endeavors mustn't be the reason I don't try.

It's not like I can't do it on my own, because I can.  It's the motivation factor when things seem difficult or complicated, such is the case when you're taking steroids, that a good support system becomes your saving grace.  I've learned the hard way over the last several years that it's okay to need help, to want support during difficult times, and to not feel guilty about asking for that help.  It's easier now since I don't have those people in my life anymore who made me feel bad for wanting or needing emotional support during difficult times.

Over the course of each day I look for my motivation, signs of life if you will, and accept what it is that I find, and even what I don't find.  There will be bad days, and there will be good days, and every step forward, though painful, is still a step forward.  I can do this.

I.  Can. Do.  This.

My goals sometimes change by the day, and on occasion more than once in a day.  Rolling with the punches means adapting to anything new and finding a way to get right back up again, even if I've been soundly knocked on my ass.  The stressors are still here as well, and I try to overlook, ignore, and otherwise block out those things if I possibly can.

As I sit here and feel the pain return in my back, where my kidneys are, I'm evaluating how much I'll be able to do today.  It's different every day, and I accept that fact as simply my reality as it stands right now.  If I don't listen to my body I will pay the price---you guys have heard me say that a few times and, well, it's the absolute truth.  So what WILL I be able to accomplish today, other than the usual paces I put myself through no matter what?

I wish I had somewhere else to retreat to, somewhere that I can be absolutely free from the pressures here in my immediate environment.  Realistically, the only retreat right now is a set of Bose headphones and music; it's how I block out the world when I've simply had enough.

Yeah... I know I'm rambling and all over the place today.  Today?  Well, it's become 'situation, normal' for me right now, but it's just the way it is.  So be it. I'm going with it because I don't know what else to do.  However, my goal was to unload the chaos and focus on what's to come.  When the Shakeology stuff arrives on Saturday I will be mostly prepared... emotionally anyway.

Did ANY of this make ANY sense whatsoever?

*sigh*

Health Infusion via Shakeology

Some of you guys remember where this all started--my quest to get my health back.  And if you've been there throughout the journey from cardiac ablations for 3 arrhythmias to the current diagnosis of Autoimmune Hepatitis.. then you know how this has gone and what I've been through over the past few years, especially the last two.  At one point, about a year ago, I decided to add Shakeology to the mix, to replace breakfast and have a good, solid, nutritious start to the day.  That infusion of healthy goodies was a GOOD thing.  Did it fix my issues?  Of course not, because I had no idea I was dealing with AIH at the time.  But it did me some good nonetheless.

I've reinstated myself into the program again, with this time not as a sole source of weight loss, but as an overall step towards better help and feeling good.  I'm wrapping that package up with Weight Watchers--because it's the most realistic WOE that there is.  But I feel pretty good about my decision.

Challenges are there in the form of prednisone side effects, one of the biggest being constant hunger.  I mean, real hunger that doesn't let up, with no satiety really being reached but for a couple of minutes tops.  This is a big one when you're trying to get healthier, lose a few pounds, and get your shit together.  I have to face that monster every single day while on Pred, and it may linger for some time afterwards.  The BIG question is: When is AFTERWARDS?

Afterwards is a huge question looming overhead at the moment.  Some people are on medication (pred, Imuran.. or both) long-term, sometimes indefinitely (though that's mostly the Imuran or other immunosuppressant).  For many the medication stays on-board for about 2 years, in which case another liver biopsy will be performed to confirm remission.  TWO YEARS on prednisone.  TWO!  Even at a low dose of 5mg-10mg the effects on the body, both good and bad, are significant.  So at what time does the prednisone become low enough in the body to allow things to return to normal, or close to normal, and weight loss and good health begin?

If only I had the answer.

The effects of prednisone, btw, can last up to TWO YEARS even when it's completely stopped.  This means low adrenals etc. can still wreak havoc until the body begins to produce cortisol on its own again.  Yay.  Not.

No matter what, this is a necessary evil (Prednisone).  Without it I stand a significant risk of AIH causing such damage as fibrosis--leading to cirrhosis--which at some point the liver becomes mostly non-function and a transplant becomes necessary.  This is, of course, the worst case scenario brought about by leaving the situation untreated.  As you can see, Prednisone really is the necessary evil.

So be it.  Here it is.  My 'new normal.'

I'll be glad when my Shakeology shipment comes in the mail.  Just saying...

Ever-Wondering Why I Bother to Give a Damn

It was a long holiday weekend filled with packing, moving a few loads over to the new house, and lots of anxiety having to be around T for that long.  I'm not being mean here, I assure you, but the magnitude in which he's "just not there" is ever more apparent when we're around each other too much.  And honestly, it drags me down and wears me out beyond words.  Not sure how I can handle this much longer.

I try very hard to be patient and understanding, but it's nearly impossible to feel those things when the other person is simply not trying at all.  I'm a ghost in my own household (notice I didn't say "home"), and the weight of being absolutely trapped is taking a tremendous toll on me both physically and emotionally.  Life isn't supposed to be this hard.

He's supposed to go visit his family in Florida next month, and no.. I'm not going.  By choice.  I'm simply not up to that long drive right now, and honestly... I really need the time alone; maybe I'll be able to breathe for once.  I'm a little scared I'll like being by myself much more than I realize.  Though it really wouldn't surprise me...as I crave space, peace, breathing room, a place to stretch these broken wings and try and remember what it feels like to fly.

...It was another weekend with my pointing out all the ways he tries to control me, how he treats me like a child, how he doesn't respect me... and as always it falls on deaf ears.  Oh, he vehemently INSISTS that he understands what I'm trying to say to him, that he gets it, that he will try harder, and so on..and on..and on..and on.  His words mean very little to me anymore, and his WORD... means even less.

I can't rely on him following through.

Honestly, I could understand his not being able to follow through on some things if there were a REASON.  But there's not.  He simply just... doesn't.  And it's very telling.

In the meantime I try desperately to hold on, to remember who I am, to remember my dreams, wishes, hopes, goals, and to remind myself that my needs matter too.  I also have to work on not being completely rolled over by him when he does this; and I have to say it's nearly impossible.  I mean, let's face it---I'm not the toughest person, and I'm sensitive to both people and environment.  And my environment right now is NOT conducive to happiness, joy, OR healing; three things of which I need desperately in my life.

How the hell did I get here?  Rhetorical question, really.  What I should be asking myself is 'How did I get here AGAIN?!'

Okay, so truth be told I'd have to say I HAVE asked myself that question and know how I got here again.  I'm not in the awful places that I've been in the past with relationships, but this one isn't healthy for me at all.  So what do I do so that I can thrive, live, and be able to breathe in my own space?

That's the million dollar question, isn't it?

And I'm working on that...

I am.  I have to.

HAVE to.

Spilling Over...

I guess I should remind some of you who may not know, that if something is bothering me particularly.. I will most likely post it in all of my blogs.  The spillover from one to the next is just something that's going to happen.  Most of the time I aim to separate what I'm talking about between each one so that the meaning isn't really lost in context.  Make sense?

My blogs overlap, though they're meant to be focused in one aspect of my life or another...

Boo's Juicy Bits:  The main aim here is health, diet, eating, all the things that support and give us a foundation for a good (or bad) life.  There's so much to this part of health, so there will be at times an overlap as to what's going on the pages.  If life is getting in the way, or helping me on my way, the details will most likely end up there as well.  And don't be surprised if you find sexually-focused chatter on there as well.   The information is all connected in one form or fashion anyway.

Where Fireflies Dream:  Created as a place for whimsical thought and ideas to play, an expression of who I am, how I dream, what I want, and the things that can or do hold me back from my greatest expression of self within my life as it is at any given point.  Again, be aware that at times topics of a sexual nature will most likely appear in posts.  Don't say I didn't warn you. ;)

This Free Spirit:  The newest blog and one I feel is necessary, even critical for me.  It's a place to talk about abuse.  Been there, done that, and still haven't gotten 100% past the damage, to say the least.  My goal with this is sharing in hopes it will help others, but also to have a place to talk/deal with the lasting effects of my experiences.  This one will often have chatter of a sexual nature as well.

All Things Ephemeral:  Originally, this one was created to let it all hang out, a no holds barred kind of place to talk about EVERYTHING in great, bloody detail.  The nature of doing this means that, in the past, I would often delete posts after a day or two, a week, a month, whatever... because it was a bit much to leave just sitting there for the whole world to see.  However, this is changing.

I will be taking that no holds barred approach with posting there soon, as it's one of the greatest barriers I need to cross in order to heal.  Like Pavlov's Dogs I learned through experience that expressing myself openly meant I would pay a price, a high one at that.  But since this is no longer the case I plan on resuming, for personal growth and healing, my once bold approach to using this blog exactly as I intended---a place for me to be free to express myself in any way I see fit!

Onward...!