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???

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....

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.

I See What You Did There.

You're either part of the problem or part of the solution.  Anyone who's been in a relationship knows that if there's dysfunction there's damage.  In my case there's much damage to both my emotional state as well as my physical state.  It's not hard to understand the VAST difference between "Enabling" or "Supporting," and you have to pick a side eventually, right?  So when it comes to choosing which side you're on, use compassion, care, love when making such a choice, because you can easily break someone's will when you're pushing them in the wrong direction with every move or choice you make, with every word uttered, with every action.  At some point you have to ask yourself: "Who's side am I on?"

Let's hope your answer comes from a loving place, otherwise you've just embarked on a journey that could utterly destroy another human being from the inside-out.  Think I'm wrong?  Think again!  Here's how it happens....

Now, while I should be entering this in my blog "This Free Spirit," I'm beginning here.  Why?  Well, as some of you know I created this blog for talking about health and diet-related issues, and this particular entry deals with the emotional side of the success or ultimate failure of health goals when dealing with the lack of a support system and living with someone who is hell-bent on undermining my goals.  I guess I should copy this entry in the other blog as well, because it's incredibly important to know how closely related the issues of health and surroundings are.

Ever had one of 'those' friends who can't stand it when you do something to better yourself, your life, your health, your emotional wellbeing?  I think we all have had those people in our lives, right?  Sometimes it's a friend, other times it's an enemy, and there are times when, sadly, it's a loved one.  We give other people power over us, many times without realizing what we've done.  This is often the case with family, especially with a significant other such as a boyfriend, girlfriend, or spouse.  The damage inflicted by carelessness, indifference or overt sabotage is mind-blowing, and it's a serious undertaking to get oneself back on track when this happens, and especially if it continues to happen.

As you guys know by now.. I'm on Prednisone, which is KNOWN for massive edema (water weight gain), fat gain and redistribution.  Knowing what to omit or avoid in your diet while on prednisone is key to minimizing it's bad side effects.  Let's visit this for a moment, shall we?  And trust me, I'm going somewhere with this.

What to avoid, limit or omit while taking long-term, high dosages of Prednisone:

Salt.
Sugar.
Junk food.
Refined carbs.
Processed foods.
Fast food.

The list of what to avoid is pretty straight-up and not at all hard to understand when common sense is applied.  So if you're living with someone with dietary restrictions, and dietary restrictions are always due to a matter of great importance.  In my case there are several reasons ranging from avoiding the damaging effects of prednisone to having a heart condition and now high BP.

I've talked to T on many occasions in reference to what I have to do and not do to protect my health, and those talks have been over the better part of TWO YEARS now.  So this is not a new topic by any stretch of the imagination.  And yet he continues to do the things that he shouldn't do, and that is to bring home ALL of the items on the "Avoid" list, and he does so on a regular basis, citing he 'Forgot' or takes the stance that he just somehow just doesn't get this.  He has a 150 IQ, so how is it he  doesn't know or forgets?

Junk food, and TONS of it.  Processed food that now fills the shelves of the pantry.  If he cooks something (and these days he does most of it because I can't stand but for a few seconds, literally) he drowns the food in salt, mayo, or anything and everything that really isn't even remotely required.  And most of the time the food is pre-packaged crap that has little to no nutritional value.  He will literally forego cooking any vegetables, even the frozen kind you can pop in the microwave.  See, this is the part where being "Dangerously dependent" on another human being means risking your life and health.

One of the most horrid places to be in life is at the mercy of another.  It requires a great deal of trust to be at the mercy of someone, and when that someone does everything possible to undermine your health, your goals for better health, it becomes a dangerous, dangerous game.  I want nothing more than to have enough of my health and energy back where I'm SOLELY responsible for preparing my own meals.  The level of stress and anxiety that comes with being at T's mercy is through the roof, thus risking my health even more.  I have no idea what to do about this.

The shelves of the pantry, the inside of the fridge and freezer have mostly junk, processed crap that offers very little nutrition and a LOT of calories.

I talk and talk, I beg and plead, I send him links to read about the effects of eating that stuff to him... links he really just ignores as much as he ignores my text messages.  Who IS this guy??

Why do I bother talking to him?  Why do I bother sharing anything with him?  Why do I bother texting him, sending him emails, etc. when they go completely unnoticed?  He will read for an hour links and such people leave on his FB page, but he has NO clue what's going on with me unless I spoon-feed it to him.  I've grown weary of spoon-feeding him information and holding his hand to walk him through every...single...step of learning anything at all about what I'm dealing with.

Does he know anything about autoimmune hepatitis?  Not really.  What he knows is what I've told him, and I can't hold a seminar for him.  If he's not going to take the time or invest anything into learning, then why should I bother?  I've mostly gotten to a point where I don't--bother that is.

So what's really going on with T?  Well, given his habit of indifference.. there's really no telling if he's just being careless, or hell-bent on sabotage.  I don't believe it's the latter, but the former isn't any prettier nor particularly helpful.

It's time I sign off, complete a couple of other entries in my other blogs and wait for the Lasix to kick-in.  This means camping out in my room so I can be near a bathroom.  Lasix, btw, is a powerful prescription diuretic, so this is going to be fun.  NOT.

Wish me luck....

The Invisibility of Being.

Throughout my life I've been pretty thin-skinned, listening to others tell me what I should/shouldn't be, what and how I should think, do, say, dream... developed into an art form for me that damn near reached "Spidey Power" status.  No, seriously.  I would take and wear whatever anyone projected upon me like a shiny pair of Jimmy Choo's.  And trust me when I say that two-sizes too small absolutely made a difference in how I felt and carried myself through life.

Barefoot is better.  Know what happens when you go barefoot the majority of the time?  The soles of your feet get pretty damn tough.  Having grown up poor I had only one pair of shoes (cheap) at a time and wasn't really allowed to wear them outside if I were just playing in the yard, etc.  They had to last until my mom decided we could afford more.  I think I had the toughest feet of anyone I've ever known because of this.  The only thing that really hurt me was if I stepped on glass (which I did a few times, once landing me in the ER to have the glass removed), and when that California asphalt and concrete got hot enough to fry an egg on.  Even so, over time walking barefoot didn't bother me one single bit.

But what about the INSIDE?  Oh, but that was a whole different story altogether.  I couldn't walk my way through through the pain to being 'thick-skinned' and pretty much felt the weight of anything and everything that was said to me.  Criticism became truth, a 'reality' handed to me that I willingly took.  My childhood experiences weren't filled with encouragement or praise nor even helpful criticism.  Indifference and criticism, and many times complete withdrawal of love and affection were the tools used to shape the person I would become.

I was to become the child who survived.

In adulthood, that small child I once was is alive, and though not well, that part of me is AWARE.  There is still a disconnection of who 'that little girl' was and who I am now, and I still see photos of when I was little and feel such pity for 'that little girl.'  Yes, I know it's me, of course.  But the disconnection is still there just the same.  I want SO much to apologize to her and say "I'm sorry I didn't protect you!"

I've accepted this disconnection as a part of who I am, but I don't like it one single bit.  C'est la vie.

I remain thin-skinned, but my reaction to criticism, disrespect, and so forth is very different now.  I've allowed history to repeat itself in relationships I've had, and the reality of this has unprecedented tenure, so it would seem.  It will be with me the rest of my life.  Okay.  I'll just have to work around that when possible, right?

So here I am all grown up and stuff.  I can make decisions, change my mind, and walk away from anyone or anything that threatens my happiness; such are the benefits of being an adult.  Right?  Well, not exactly.  At least not for me.  That subconscious, that inner child, the child I actually WAS at one time so long ago, well.. she has a mind of her own and remembers the pain, the isolation, the indifference, the coldness, the invisibility of being... well, me.

Such memories carry over for the long-haul and map the course of life in often undesirable ways.  But it doesn't always have to be like that.  I can do more to help myself in that respect.  And I do.

On bad days, of which I have far too many these days, that inner child is the one who suffers most.  Sure, I feel the physical pain, and I feel the isolation of my situation and all it invokes (depression, anxiety, etc).  But it's what happens INSIDE that changes my world, my life.  All I can do is anesthetize myself with too much coffee, reading, and way too much television.  My physical body simply refuses to allow much more these days.  That's okay, because eventually the AIH and the 'possible' Myositis, both autoimmune, is driving the bus now, and not even my inner child can rebel against that and affect change.

Sitting here in the quiet, drinking coffee, talking about things I've not talked with a single other human being about...well, but for one therapist for a very short time, I can definitely say I recognize my life as it was, and as it still is; The invisibility of being... me.

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....

The Dangers of Being Honest

Honesty has become a vulnerability.  People who speak their minds honesty are often faced with ridicule and contempt by those who have opposing views. I believe most of us get this and have experienced that ridicule first-hand.  While a valuable lesson, that ridicule and backlash, while it reminds us how we should choose our words carefully, we must always remember that honesty is STILL the best policy, and that lying by omission... is STILL lying.

A friend who reads all my blogs, and I mean every entry (bless her heart), sent me a message and said, "I don't know how you do it. Aren't you scared of haters bashing you?"  Well, no.. I'm not.  I refuse to allow haters and bullies to dictate how I think, behave, react or don't react to any given situation.  I mean, once you give away your power it's really hard to get it back.  It's best not to give your power to another to begin with.

I've relinquished my power to haters and bullies in my past.  My entire life, up until about 3 years ago, I learned to suppress my feelings, to bury anger deep, to hide the foundations of any feelings I had.  Not to say I wasn't emotional, because BOY was I ever.  I wore my emotions on my sleeve for the entire world to see.  But when it came down to recognizing for more than a second what created those emotions, and when it came down to standing up for myself, that's where everything fell apart, and it did so because I was taught early on that having those emotions.. was a bad thing.

I no longer think that, and because I no longer think that I FEEL more intensely those emotions I used to keep in check to the point of denial.  It's been a liberating process, being able to access feelings like that.  I don't have to apologize to anyone for having those feelings, and I reserve apologies now for when I HANDLE those feelings badly; thankfully this is seldom an issue.  So when someone writes me and is worried because I allowed the emotions and thoughts etc to flow freely on the pages here, or in my other blogs, I DO take into consideration what they're saying, but I also take into consideration that I've come a very long way to not only reach my feelings and access them more fully than before, but that it's MORE than OKAY to express them.

There is a danger to being honest.  There's a danger in speaking freely at times.  There's a risk that you won't please one person or another person, etc.  Not everyone is going to like what I'm saying.  But so what?  There will be those who DO, and it's with those people that the unspoken camaraderie is expressed and felt.  What I say, what I express, actually has helped people, and it's certainly helped me.  So I've no intention of changing this, just so everyone here is clear on where I stand.

I will accept the dangers of honesty and continue to be honest, sometimes bluntly, and I will take into consideration the edges honesty has by definition.  I'm not out to hurt anyone, and this is why I name NO names here as to whom I'm speaking about.. IF I'm speaking about someone else.  It occurs to me that having to say this means I'm still aware, very aware, of the risks I take.  But it doesn't matter.. I'm not here to write fiction or make things look better or worse than they actually are.

I'm going to be myself, haters and bullies be-damned.  No one should give up pieces of themselves for others to devour, and that's exactly what you do when you censor your words, thoughts, and feelings in a place or forum where you're there to speak your mind.  People can choose to read or not read, listen or not listen.  Actions are a choice.

So to my friend, though we've spoken about this at length--I hear you.  And I'm okay.  I'm okay with what any hater or bully thinks about me, because I don't answer to them.  And.. you shouldn't either.