Inevitable

What a word, huh?  Stating my case for better health is a daily routine, one in which I decide when I wake up just how far I'm going to let this AI situation screw with my life.  Oh, I make the decision all right, but the powers that be seem hell-bent on proving me wrong.  Raging against this doesn't work, yet it gives me an outlet to expel the toxic waste of bewilderment.  So be it.

Weight loss, prednisone, diet, eating, choosing, and living with the ultimate consequences provide a messy framework in which I have to live.  This machine controls everything, as many of you know, and we KNOW it controls us because of all the hype with body-image, health, well-being, and the next, best and greatest health craze, fad, or obsession.  You know it's true.  I know it's true.  All of us fall victim.

The good news is that we can choose how we go about reaching for better health.  MY choice is to abstain from meat, and dairy... go vegetarian or vegan.  As it turns out, the autoimmune hepatitis and medication necessary to bring and keep it in remission poses their own health concerns, one of them being low calcium, osteoporosis (to name just one).  I can't skip the dairy, because supplements DO NOT WORK in this case.  I eat dairy, I take supplements for calcium and vitamin D... and yet my calcium is testing below normal.  Now, this could possibly (hopefully) change as I'm weaned off the prednisone.  But only time will tell.  In the meantime, knowing calcium actually helps a person LOSE weight, I know that I'm still fighting an uphill battle.  Prednisone puts on weight NO MATTER WHAT YOU DO, lowers calcium in most cases, causes extreme water retention, lack of sleep/insomnia (which is vital to weight loss)... and so so much more.

At least I'm down another 10mg/day, so that's good news.  The Azathioprine is up to 150mg, which is supposed to help with symptoms from prednisone tapering, so there's that.  It's just a damn ugly process, is what it is, and the effects from using high dose/long term prednisone could last up to 2 years.  These realities become part of my journey to better health.

...Then there's the myositis situation.  WHAT am I to do with that?  Nothing, for now.  It's attempting to kick my ass just the same, though.

Ugh.

...I really wish T would finish putting the exercise bike together.  *sigh*

How the hell am I going to survive all this?.....

Another Day, Another...

When will the dialogue ever change?  It WILL change, the question is WHEN?  I'm fighting against the 24/7 prednisone hunger, the relentless bloat, water retention, swelling.. and dammit... no matter what I eat or don't eat, nothing actually changes.  This drug has taken the wheel and is recklessly steering things headlong into the abyss.

I'm going to make this as short as possible, but I vowed to make entries here so I can see where I was and when and what was going on at the time.  Weight loss isn't going to happen in the midst of weight gain.  Some people are very fortunate to not be on prednisone long enough, or have a dosage high enough, to cause too much damage.  But for those of us who have to endure this, the hell of having to choose between what happens WITHOUT treatment for AIH and WITH isn't really a choice at all, unless you have a death wish.  UNtreated AIH has an average 5 yr survival rate in many cases, and less than 8 when it comes to terms of cirrhosis developing if it's absent at the time of diagnosis.  Those are ugly odds.  So we take our medipoison and hunker down for a long and rough ride to remission.

Diet--meal planning--cooking--eating--and my body's reaction to any of those differ from one day to the next.  And by the end of the day my body is NOT my friend.  It's another day in prednisone hell and I'm not handling this well for the most part.

I can't define the excruciating back pain that came on board almost two weeks ago.  I've felt it before, and it went away quickly when I received 2 IV iron infusions for anemia.  So is the anemia back?  Why won't any of my doctors test for ferritin again to check this?  SOMETHING is causing severe back pain that even prednisone can't touch!  That's kind of a big deal since prednisone is often prescribed FOR back pain!  What gives?  I may end up having to call the hematologist to see if I can get re-tested based on symptoms.  It's a simple test done right in his office, and though the results take about 3 days to come back.. at least I'll know if low ferritin and/or iron in my blood is to blame.  Because honestly, this sucks worse than the AIH symptoms.

In the meantime, I choose what I eat based on how long or IF I'm able to stand there and cook, make a sandwich, etc.  Yeah, it's THAT severe.

It's just another day in my life on planet earth...

OMG Prednisone! STOP IT!

So, as you guys know I began using Shakeology again.  Which is a VERY good thing, btw.  However, what's NOT so good is that this dang prednisone hell I'm in makes me hungry, VERY hungry like 24/7.  *sigh*  I know I'm still doing something great for my body by having that nutritious shake for breakfast each day, but how the hell am I supposed to thwart the PredMonster with a shake?  Ugh.  I'm not going to win that battle, as others who've had to use this stuff long-term can attest.  But dang it!  I'm GOING to have to do something.

My doctor said, "It will make you gain weight.  It's going to.  Which is why we're going to get you off this stuff soon."  Well, yeah.. I certainly hope so!  I mean, even after coming off prednisone, which takes a while, the effects can last up to TWO YEARS.  It's only been about a year and a half since the last round of Pred, and I was struggling like crazy to get even a few pounds off without resorting to extreme remedies such as a long juice-fast.  Seriously, my body can't take another fast, because it's not great for your liver if you have liver issues already.

T... well meaning most of the time but indifferent as hell.  That indifference means he doesn't pay attention to anything I talk to him about, tell him, warn him about, nor does he remember most of what I tell him I need to do and not do with regards to eating.  It all just falls to the wayside the second he sees and seizes an opportunity for a quick meal.  I can't do quick meals anymore.  I can't do the salt, sugar, fat, and heavily processed carbs.  I can't.  While on this medication (prednisone) I have to steer clear of things that are going to wreck my health.

One of the risks with long-term prednisone is hypertension, and another lovely one is type II diabetes brought about by the drug itself.  Hypertension and diabetes.  Salt and sugar.  So what does T do?  He decides it's just easier if HE goes to the grocery store and gets whatever, because it's on his way home etc.  And what does he bring home?...?...

PopTarts.
Pastries.
Chips.
Dip.
Frozen/pre-packaged meals in a box or bag.
Ice-cream.
Cherry pastries.
....etc.

And the above was in ONE trip!  Just yesterday.  *sigh*

When your hunger is kicked into high gear ALL OF THE TIME, and you have all that junk sitting around, it's nearly impossible to not snack all day.  And pred, oddly, can dull your taste buds so that healthy, nutritious food fails miserably in the flavor dept.  I mean, dull, bland, and about as tasty as wet cardboard.  Not that I know what wet cardboard tastes like, mind you, but I would imagine it would be about like what I taste when I eat steamed veggies.

Shakeology is an investment in one's health, and it's not a cheap investment either.  So how in the hell am I to get anywhere near healthy if I have a Shakeology shake for breakfast, only to follow it up with a cherry pastry about an hour later?

I've sent food with T to work over this very thing.  When he brings junk food home I usually tell him to take it to his work and leave it there, eat it, or share it with coworkers.  I just need it OUT OF THE HOUSE and away from temptation.

Is that so much to ask?

My next move is to begin research on a home exercise bike, one of high quality.  Exercise tends to make a person WANT to eat better, make better choices.  Maybe, just maybe this will do the trick.  As for stopping T from bringing home junk food, well, I've no idea how to stop that just yet.

God help me...

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.

A Comfortable Position

Realistic; it's the new optimistic.  I can't change the facts, but I can change what I accept, what I don't accept, and how I deal with said facts...

Now, we've all heard the phrase.. "I can't change anyone else, but I CAN change ME."  And yes, that's true. But what this phrase doesn't address is how OTHERS can also change us!  In fact, it's the words and behaviors of others that do the most damage, or the most good, and it's often done with little effort on your part as a 'receiver' because while you may be ignoring, making excuses for, or actively doing whatever it takes to protect yourself... those words and behaviors touch your subconscious.  And this often happens in the most insidious of ways.  If you're dealing with someone who is NOT concerned about your best interest, OR you're dealing with a narcissist, then you're going to be in BIG trouble, my friend.  VERY big trouble.

Will I ever really heal?

I can't give an exact timeline, if there actually IS one, but I can keep moving can't I?  Can't I just keep moving like what's wounded is more like a muscle than my entire soul?  Won't this make it better in time, all this moving, shifting, changing?  While I can't answer the questions myself, the fact that I'm asking them means I'm still heading towards healing.  At least that's the way "I" see it.

Does this moving involve pushing down what I know is damage done, or does it mean I simply find a way to navigate around it through the course of my everyday life?  Now this is something I may or may not be able to figure out over time, but my thinking at the moment is that, at least for now, moving definitely means navigating around the damage I know is there, what is hurting.  All this shifting about to find a comfortable 'position' within myself only works for a short time, not much unlike when you've been sitting too long.  It does help for a little while.

Why not sugar-coat what is, put on the rose-colored glasses, numb the pain, the truth... just numb it all?  Because that's just one more tiresome temporary solution.  What I need is a final, definitive cure to the deep wounds within.  Isn't that what anyone wants when they come out of a dark situation?  Of course.  Why not?  We can long for, desire, and obtain (eventually) that which we deserve---freedom from pain and a gain of our self, whole, and undamaged as possible.

The side effects of being with a narcissist are far-reaching, undeniable, and long lasting.  Even out of the relationship they plague everything, poison the good, and pinch the wounds that refuse to heal.  They linger in the very air we breathe at times, even when we're not aware of it.  At least that's how it is with me.  Then suddenly they come crashing through again, ultimately pushing me back to square one for a time.  It's always there.  We don't forget.  "I" don't forget.  I can't forget.  The scars are a part of me now.

I still deal with it because I have to.  Or rather... I don't really DEAL with those side effects; it's more like I ENDURE them.  I mean, isn't that what most of us do until we, well, don't?