I Shouldn't Have To...

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

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

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

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

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

And.. life goes on.....

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

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

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

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

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

Fighting for my life:

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

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

I FEEL my body's struggle within.

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

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

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

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

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

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

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

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

Rhetorical question.

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

Not managing this well at all.

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

*sigh*


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

Carrying on but on a different path...

So, as you guys may know (if you read my entries) my health has been chaos over the past year or so.  Okay, so before that too, but lately it's hit a whole new level of 'bottom.'  It is what it is.  Recently, due to being pretty much bedridden I began to wean myself off as many medications as possible, and so far... it's not helped.  But I think what's left to explore is possibly key.  About that in a minute.

I'm on a few medications.  A blood thinner due to a TIA in 2013 attributed to Afib, etc. I had ablations for 3 arrhythmias.  Two different medications for GERD, two different medications for (embarrassingly) chronic IBD, a statin, Prednisone and Imuran for AIH.  Over the past week I completely ditched the statin, and I ditched the Imuran shortly after weaning off Prednisone.

Yes, I'm at risk for a flare up of AIH by stopping the Imuran.  I don't care.  QUALITY of life is far more important to me than how long I live.  It's a weird thing to have to face that reality, but.. there's a chance the AIH may not flare again for a year or two.  We'll see.

So where I am, briefly because I feel horrible and am weak, is in hormone hell.  After taking the Prednisone for 3 months that has likely suppressed my adrenals, which affect other hormones...

Okay... sorry, but my arms are aching badly just from typing.

Sheesh.  More later.. I hope.

My purpose.

NOTE: Please check my other blogs (links on right side of page) to read about everything going on.  I'm trying to catch up after being too sick to post for several days.

As I try to keep with the original purpose of each blog I'm struggling to make individual entries in each one.  Please bear with me, because I feel incredibly sick and shouldn't even be sitting here typing like I am.  I'm persevering just the same... just may not be perfect.

This particular blog was created to journal my health, eating, dieting, fitness, etc. as I try to make my way back to good health again.  When I first began posting here my health was failing, but I was still able to do nearly all the normal things I would do in a day; cooking, cleaning, shopping, etc.  Like my other blogs I wanted to keep a journal to help both myself and others going through similar experiences.  Somewhere along the way--I lost my way.  As I became more sick, had less energy, when the weakness began to consume both me and my life, the topic here began to change.

Eventually, I will return to the original purpose I had here.

In the meantime, I'll still try to keep it mostly on-topic, peppered with fragments of life that can and does affect my well-being.

In the beginning here my focus was on juicing and vegetarian/vegan lifestyle (for lack of a better word).  What I would find out, but didn't know when I began that journey) is that I was anemic.  I began juicing to have better health, to obtain good health, and to increase my energy.  Well, a few things went awry, though I did make it 17 days on a juice fast.  My choice of vegetarian/vegan lifestyle has been a long time coming as I really could care less about eating meat and animal products and find it didn't sit well with me, morally.  Not judging anyone else's choices, but simply speaking about mine.

With the anemia I had to switch back to heme iron sources, which is ONLY found in meat (hence the word 'heme').  After two IV iron infusions and a lot of misery, I made my out of anemia.  I've not gone back to vegetarian eating because I've still no idea what caused my anemia and didn't want to hurt my body further by aggravating the situation.  So far, knock on wood. My iron and ferritin levels are staying within the normal range.

I've recently found out that I'm lactose intolerant.  BOY am I!  Ugh.  So if I eat anything 'diary' it's yogurt, as it's the one exception for most people.  So far I think it's an exception for me.

I've had to be very careful with fruit as well, given serious GI issues that have yet to have a cause identified.  It's an every day fight among all the others.  I've talked about them today on "All Things Ephemeral," which you'll find a link for on the right.

Over the past few weeks my appetite has been MIA.  I also experience early satiety.  You might think this is a great thing because it will cause weight loss.  Well, it's only a good thing depending on what's causing it, and in my case, having come off prednisone recently, my body is refusing to let go of the prednisone weight.  This is normal, btw, and I just have to wait it out.  Still, not sure why I have zero appetite.

Typically I have a yogurt for breakfast, a banana for lunch, and attempt a normal dinner, which I often can't finish.  After I eat I feel weak and sick and have to lay down, praying that it doesn't cause GI issues and rapid stomach emptying, etc.  Not fun, I promise.

My arms are aching terribly from typing, so I have to move on and try to make entries in my other blogs (link list on right of page)....

MIA

The last several days have been fraught with a fatigue and weakness unlike anything I've ever known.  Basically, for the last several days I've been pretty much bedridden, only able to sit up for a VERY short period of time.  Painful, tired, and weak, I spent what little time I was awake researching if there was a medication I was taking that could be doing this.  What I found was across the board complaints about every drug I'm on.  Narrowing things down to a time frame when I began getting worse I found that cessation of Prednisone and AZA kicking in were likely the culprits.  Here is where things get tricky...

Prednisone and immunosuppressants are the go-to protocols for nearly all autoimmune diseases.  At the highest dosage of 40mg/day I felt amazingly well, energetic, and somewhat strong again.  It was about as close to 'normal' I've felt in years.  With the first taper I began to feel badly again, but eventually had to come off with a slower taper which ended about a week ago.  AZA (Imuran) was added along the way and is something one is kept on long-term to stave off flares of the disease, in my case autoimmune hepatitis -- don't confuse this with visual hepatitis (hep C for example).  This is an autoimmune situation in which my immune system thinks my liver is a foreign body that needs, well, killed off.  Overlapping AI disease is also suspected here, but symptoms cross over and overlap to the point where it's difficult to tell what else is going on.  Myositis or Sarcoidosis are suspects here given my aldolase was highly elevated more than once, even on the medications.  It is within normal range since taking the imuran in higher doses.

FAST FORWARD...

I don't know which is causing this horrid weakness and fatigue, and other symptoms as well, so I opted to call the doctor to TELL him I'm stopping the AZA for a time to see if that's the culprit.  His response was agreement, BUT he wanted me to restart the Prednisone at 60mg per day!  I told the nurse on the phone, who relayed the message to me, that I wasn't going back on prednisone because the side effects were intolerable and it causes so much weight gain, which I've just now begun to lose.  I'm not going back.  She said she would relay the message to the Dr.  I have an appt with him next week and know I'm going to have to give push-back because I'm UNWILLING to take prednisone again.

I've just stopped the AZA yesterday and am not doing well as I'm still weak, fatigued, and wanting to sleep most of the day.  I have a feeling some of this will improve as the AZA leaves my body.

I know the risks.  I know and accept that I could have a big flare of AIH and my liver could be damaged because of it.  But here's the thing: I have to wage longevity with quality of life, and in doing so have come to the conclusion that I simply can't have both.  I'm choosing quality over quantity.

And hey, for all I know it could take a couple of years before I have a flare again.  But as for any other AI disease going on, be it Myositis or Sarcoidosis, no one has given another diagnosis as of yet so there's little reason for me to worry about those possibilities.  Having been on the treatment protocol for those, because it's the same as AIH, it's going to be tough trying to diagnose either due to my taking prednisone and AZA for this long.  Even so, all I can do is see how it goes moving forward.

I'm actually quite surprised that I can event type, because the last several days I've barely been able to hold up my iPhone while laying in bed due to the weakness.  You've no idea how bad the weakness is.

Another thing I have to deal with, which I'm not sure is a bad thing, is the loss of appetite.  I mean, I've gone back to FEELING that I need to eat, where my body gives physical signals that I may need nutrition but don't have actual HUNGER.  Also, this is the third day where it's not just a lack of hunger but also very early satiety.  I've been taking in less than 1,000 calories a day, which I will pay for dearly if I'm not careful, especially if I'm dealing with Myositis.  But that's another talk show.

So for now just know I have to play it by ear and see how I feel, because I may not be able to post here every day---though I do hope I can because that means I'm either feeling better or one tough chick for posting when I feel like I'm going to fall off the chair any moment. ;p  C'mon.. that was funny.  See?  My sense of humor shows up every now and then.

How am I managing through all of this?.... well, I have to admit that's a whole other talk show....

Spent and at a loss for words.

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

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

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

The Handshake.

A relationship is like a handshake.  One person extends their hand and the other extends theirs in acceptance.  This is the best case scenario, however, and relationships leave one person waving their hand in the air and feeling foolish.  At some point that dance just doesn't work anymore and we have to decide wether it's all worth it or not.  But how do we know WHEN it's time to place our hand back in our pocket and walk away?

There's no difference in friendships and we've all seen those fail miserably due to one-sided participation.  It's not usually an instant fail, btw, and we come to the conclusion to walk away after a lot of energy is spent trying to be the one acquiescing, initiating, or taking the blame for the short-comings within the relationship machine.

So if we know how it works in friendships, why do we take so damn long with romantic relationships?  I think part of it is that there's a much larger prize at stake when it comes to that kind of connection that leaves you ultimately vulnerable and exposed.  That other person, unlike a friend (usually) has seen you literally at your worst, your best, naked, knows most if not all of your secrets, and the love and affection that ties it all together is not that easy to break.  In most cases.  Either way, there's just a lot at stake when talking romantic relationships vs friendships.

Friendships do last longer.  And if you think about it, it's most likely because you're not living with that person or trying to divvy up responsibilities, not relying on that person when it comes to the hard times.  I mean, yes, there is some of that, but again.... you just can't compare the two.  There is an exception, however, to this rule, and that is that we actually can apply what we are willing to put up with when it comes to carrying the load of that relationship.

I don't care about the numbers, myself.  Wether you call it 50/50 or 100/100 it still requires both sides to assess what's what and decide a compromise when one side is no longer able to carry the larger portion of the load.

My point here is this: At some point we have to acknowledge when something is harming us, wether it's physical or emotional harm, be it stress or overt abuse, we absolutely HAVE to make a decision at some point while we still have enough of ourselves left, before any real long-term damage is done.

Every day I'm reminded of how much I have to carry, what I'm left to be responsible for, and just how little energy and strength I have to take that on.  Physically I grow weaker each day.  My specialist has upped the Azathioprine about as high as I can take it, and I'm waiting to see if/when this begins to pivot the illness and begin to heal what's wrong.  In the meantime I'm extremely weak, often sick (nausea, etc.), and I have to lay down in bed several times a day now.  This means little gets done because I'm not able to do it myself.  Simple things, really.  Chores that I could handle easily back when I was healthy, living alone and with many more time-consuming responsibilities.  The difference between he and I is that I did what needed to be done and was glad to do it.  I can't live in a dirty or nasty environment so fight my way through the day trying to do what little I can.

I'm so so so done with this.

And since the communication is one-sided (out of his laziness. No joke there.) I'm beyond exhausted. I'm back to my focus being on ONE thing and ONE thing only--getting well.  I will be well enough to take my life back when the time comes and he's going to find himself in the dust when it happens.  It's his own doing, and he's not going to be happy about it when it happens, I promise.  He's been warned of this, and he's coasting along like he can't see it happening already.  But it is, happening already....

The Status Quo.

It's been a week, and this entry is going to be brief and probably more than a little boring.  My goals, as I've spoken about often, are to purge thoughts, etc. in my blogs.  As of today my thoughts are fairly off, meaning I'm having trouble really understanding what it is I need to talk about.  This dullness becomes the color of all of my life these days as the prednisone withdrawal wreaks absolute havoc on my body; This is the worst thing I've gone through to-date.

While I know that withdrawal will bring miserable consequences, ones that often can't be avoided, the possibility that there is something else going on is [possibly] evident in what I'm experiencing.  Could it be that the withdrawal symptoms are simply symptoms of some other unknown problem yet to be discovered?  My liver Dr. seems to think so.  But damn.  I can't deal with this much longer.  Someone needs to get on finding out what the hell is kicking my ass SO badly that I have no quality of life anymore.

As I type this entry I have to lean my forearms on the laptop, putting my arms at my sides often as well because I simply cannot hold them there for long.  This weakness is hardly tolerable on any level.

I'm simply too weak to keep typing... just wanted to check-in...

This is really getting ridiculous.

Weak...

It's hard to post entries these days with the growing weakness in my limbs.  Even holding steady with Prednisone dosage the weakness just seems to take over everything, seemingly unstoppable.  I've made major adjustments in my diet, opting for extremely bland food and following a diet that's supposed to help a sensitive digestive system.  I've also stopped one of my medications for reflux (I'm on 2) because it can cause GI issues.  So far I've not seen a lot of improvement, but 'some' improvement is definitely better than nothing in that respect.  Still, the weakness is really taking over things, and I have to say.. I'm really sick of it all.

I dread waking up in the morning.  Sitting up on the side of the bed takes great effort, and lifting my arms to dress, etc. is becoming something I have to 'will' myself through.  I long for the days when I could bound out of bed, ready for the world and whatever the day holds.  This weak and tired person I've become I don't recognize, and yet here I am literally willing myself through what few tasks I'm able to do.  When will these doctors get to the bottom of everything?

Yes, the Prednisone and Aza (Azathioprine/Imuran) have helped SO many symptoms, brought my liver enzymes back into the normal range, but symptoms that persist have obliterated my quality of life almost down to zero.  What's next in the quest for 'healthy'?  I'm doing everything within my power to propel myself towards feeling better, healthy, vibrant--but my body isn't responding to anything and simply grows weaker by the day.  I've no idea what to make of it all.

The liver specialist I'm seeing remarked early on that he thought there was something else going on besides the AIH, remarking on elevated aldolase, which remained elevated even while on Prednisone.  My aldolase levels only returned to normal with the addition of Aza... not sure what that's about, but I know testing for myositis at this point is futile due to my being on prednisone and Aza--the two main drugs to treat myositis.  *sigh*

Well, my arms have completely given out, the muscles hurting badly as I type....

I'm out for now...

Finally.

I

t's not over yet.  The prednisone hell continues in SO many ways, but at least the expression of itself that comes via a voracious appetite is beginning to subside.  Finally.  Nothing is perfect, of course, and it does take some time to completely subside and return to normalcy, and I am holding on... holding on... and holding on.

I spent a bit more time in my other blogs, so I don't have much to spare here.  I just wanted to check in for those wanting more information on this whole prednisone tapering and withdrawal business.

....that's all I have.

Nausea, diet, eating... who cares?

I'm trying my best today to touch base in all of my blogs.  Don't expect something scintillating or awe-inspiring, because I can promise you... that's not going to happen today.  I'm beyond sick with Prednisone withdrawal symptoms and am waiting for my dr to let me know if I can taper slower.. to ease the migraine headaches and nausea.  It's simply just too much to handle.

I've not decided if I'm going to continue the Shakeology.  And I LOVE Shakeology.  It's not about the cost or what it is or if it works (it does), but I'm unable to even stand at the counter long enough to make a shake at this point.  It will get better.

Basically, all weight loss efforts are put aside for the moment.  Maintaining my weight will be the goal, and achieving better health is the goal.  Once I'm at a point where my body isn't being torn down by illness or Pred withdrawal, I can focus more on weight loss.  At least at this time coming off the Pred has lowered my appetite and, as of today, obliterated it altogether.  I'm guessing what I'm going through is a necessary evil I will just have to endure for a while.

Remembering to be gentle with myself isn't always easy.

Somehow, some way, I will overcome all of this.

Weak. Tired....

It's been a few days, hasn't it?  Tapering off Prednisone is kicking my ass.  I'm so weak, cold, tired, dealing with nausea.  I'm about to go lay down for a bit, cover with a snuggly blanket and try my best to warm up and feel better; I really don't like that this has become my current 'Norm.'  When, oh when, will this start to improve?  When will I be able to re-join the land of the living again?

No answer...

I just can't sit here anymore...

Too Weak to Care.

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

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

What a crappy trade-off.

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

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.

That Deleted Post

Okay, as you long-time readers/friends know, I often delete posts.  The last one is a bit too sensitive, so I decided to delete it until I learn more.  Yes, it's health-related, but I don't know anything about what it actually MEANS right now.  Best thing, imho, is to just let it be until I have a better understanding about what I'm dealing with.

If you read the entry before I deleted it, then you know what I'm talking about.  Given that, once I learn more I'll update.

Sheesh.

I really need a nap.  Seriously.  Life just has to get easier than this crazy rollercoaster I'm on at the moment.

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?.....

Cross-Post Rant Ahead.. "I'm DONE"

Trust me when I say... it's taken me from approximately 7:20am to 10:37am JUST to calm down enough to write.  Waking to indifference each day is grating on my nerves and sucking the life out of my life.  I'm not in the greatest of moods at the moment, and I'm not about to pretend I am.  It's been one HELL of a morning... let's just start there, shall we?

Okay, so all of my life I've believed that the old saying "Anything worth doing is worth doing RIGHT" is a damn good foundation for anyone's life.  Half-Assing ANYTHING reveals a lot about a person.  And by 'half-assing" I mean not putting everything you have into what you're doing.  Not to say your "everything" may not be on the same level every day, but putting in 100% of what you can is all anyone can really ask.  And why not?  Why would anyone do anything less than 100%?  When you take shortcuts you leave someone else to make up the difference in distance you weren't willing to go.

NOTE:  As always, unless I'm writing something aimed at someone in particular... the word "You" is used loosely and not meant to point fingers at anyone here.

My health is bad--I've spoken of this a lot in my blogs.  Dealing with one confirmed AI disease (AIH) and going through the paces of confirming a second means.. I'm NOT in remission.  I won't BE in remission for a very long time (I'm told).  The blood work COULD very well improve, the numbers will improve and possibly quickly, but 'remission' is more than numbers.  I won't go into all of that, but suffice it to say every single day is a battle to get through.  So here I am living with someone who, by nature, does ONLY what he can get away with and not a scintilla more.  What does this mean?  It means I have to take up the slack.  I not only have to do what I need and have to do, but I have to take up the slack from what he only does PART-WAY.

Half-Assers are a HUGE pet peeve of mine!

Look, I realize there will be days, times, and situations where you may have to take a short cut or do what you can in that moment.  But I also know that there are things that HAVE to be done correctly, thoroughly.  I mean, you can only short-cut your way through things until you end up with a completely and totally chaotic mess that SOMEONE ELSE will ultimately have to deal with.  Why the hell would you do this to someone, especially someone you claim to "love"?

This morning, like so many mornings (every morning!) I found myself forcing my way through cleaning up after T.  And I mean, cleaning up as in it takes me some 45-hour JUST to pick up the slack of his half-assed whatever.  Have I spoken to him about this?  Of course I have, and 2 years ago, when it really began, I was very calm, loving, and discussed the matter with him in hopes he would see what he was doing.  I mean, he's a grown up, and I'm not his mom.  He can pick up after himself, because he's no Ward Cleaver and doesn't treat me like Joan.  The family of the 1950's and 1960's are GONE.  Marriage and relationships aren't centered around women being in servitude.

Now, women who are treated with respect, treated kindly, appreciated.. will do almost anything for their guys.  It's how we're wired.  We're wired to be caretakers, caregivers, at least most of us.  However, when taken advantage of we often will begin to back off from all those things we once did easily, eagerly, and happily.  When taken for granted... we don't see any reason to continue giving when there's only taking from the other side.

And please, don't confuse this 'give and take' with material things or money, etc.  Because those things don't bring happiness, not ever.  What I'm talking about here is doing one's part in the relationship without placing the blinders on and thinking it's really just all about the other person doing all the work.

I've been in a relationship where everything was dumped solely on my shoulders.  People who know me, who pay attention, find out quickly that I can't be bought.  You can't buy your way out of unhappiness.  You just can't.  Being poor and happy is FAR FAR superior than being well-off and miserable.  Money can't get rid of unhappiness.. I really can't stress that enough.

Doing your part, that's what it's about.  Not placing necessary pressure or expectations on the other person is what it's about.  Respecting the other person's time is what it's about.  And soooooo much more, or course.  But when it comes to half-assing your way through chores because you know the other person will take up the slack for you... that's a sure-fire way to turn that person off, long-term.  And good damn luck getting them to be turned on again.

Being taken advantage of is not good foreplay.
Being taken for granted is not good foreplay.
Doing and not doing things that make the other person's life more difficult.. is not good foreplay.
Being overtly, blatantly lazy isn't sexy.
Indifference isn't sexy.
Ignoring someone isn't sexy.
Not respecting the other person's space, time, and needs isn't sexy, nor is it good foreplay.
Being mean, hateful, abusive.. isn't sexy, and it makes for LOUSY foreplay.

You treat me like shit, I'm going to shut down.
You abuse me, mentally, verbally, or physically.. and I'm going to shut down and NOT be into you.
Take me for granted and I'll stop doing things for you.

It's taken me years to get to this point, and I've been a welcome mat for a couple of people and won't ever allow myself to do that again.  I don't need anyone THAT much.  If I'm treated badly, eventually I won't feel anything at all for you, and you're going to find out that you really just can't un-ring that bell.

You can't buy me or my love.  I'm not for sale.  If you do something you claim is out of kindness or whatever, and you use it against me later.. you've given your true motive away!  Once I SEE you, what and who you REALLY are, I won't be able to see that 'other' person ever again.  Once you blow it, you blow it.

T is lucky in that there's still about 2% hope here.  This morning was just about the final straw, but I fought and worked my way past it, and I'm telling you it was DIFFICULT!  He knew, too.  He knew the moment I pointed out to him what he'd done.  He tried to backpedal, tried to reassure himself that he'd not blown it VIA me.  But what was done was done, and the disingenuous nature of what he did wasn't lost on me at all, and it broke something inside and change, again, the way I see him and feel about him.  Being disingenuous is exactly like lying, and I'm DONE being okay with men who lie to me, either by omission or right-out.  DONE.

That 2% of me that is still open to his finding a solution and fixing the whole disingenuous thing is stretched very thin.  He's running out of time.

Honesty and respect are MORE important than love.  My last relationship taught me that, opened my eyes to the fact that without those first two things.. LOVE CAN'T EXIST!  Love CANNOT exist in the absence of honesty and respect.

Besides struggling through a VERY PAINFUL morning trying to finish half-assed attempts at whatever, I also had to deal with the tuning me out thing, the thing where he pretends to vaguely respond because he knows he didn't hear a thing I just said.  No matter... I don't repeat myself anymore.  I do let him know, however, that I get that he didn't hear me and that all the begging in the world to repeat myself isn't going to make me do so.  After a year or more of this not listening/tuning me out thing.. I've grown intolerant to it.  I've told him that, fine, if he's that disinterested in what I have to say then I'll simply 'tell someone who gives a shit.'  He doesn't like it, but it's no longer about what HE likes and doesn't like anymore.  I've taken the first step in getting MY life back, replacing the disrespect he shows towards me with my own SELF-RESPECT; something I really should've done a long, long time ago.  Better late than never, I say.

So this morning was NOT a good morning.  But I'm going to spend the remainder of my day taking care of myself, focusing on what I can do to help myself heal, and incorporating those things that will protect me from further harm from anyone, especially from the person I'm living with.  Yes, I still have to work through the damage from the past relationship, but that's already underway and will help with my current situation.

Well, that's where I am today.  It will get better, and I will keep persevering... as long as I can.

This Timeline

After yesterday's major energy crash, today I find myself contemplating the things my mind wants to do that my body won't allow.  I didn't handle yesterday well at all, and I found myself wondering how much is going to get worse before it gets better, and just how am I to ride it out from day to day when even the simplest tasks are becoming glaringly impossible.  Where is this leading, when will it get better, and why can't I see my life's timeline anymore?

So I've ventured into another realm as of yesterday, and that is changing my diet radically.  The Prednisone weight will have to be put to the side at the moment, because I'm now having to deal with changing my diet so as not to be incredibly sick... let's just put it that way.  I'm now having to construct a pretty bland diet in order to stave off the turmoil that seems to have taken over my GI tract.  Yeah, I know.. not pretty.  It is what it is.

Bland chicken and rice, bananas, white toast (HATE white bread, btw), veggies, cooked carrots, etc.. is now going to become the norm until we find out how to get that $1,200 Rx.  We're trying a different route today, one that makes the dosage a little lower (have a copay card we're hoping will work with this dosage change).  Why on earth does this even have to happen?  Ugh.  Obamacare SUCKS and has messed up SO much with insurance.  Anyway, back to the topic at hand...

The bland diet will have to do until I can get that Rx.. which I needed at least a month ago.  The waiting continues....

On another note, I still feel 'dull' today, tired, brain-tired, lethargic... all fun and games when Azathioprine dosage is tripled.  And the fun begins with taking massive precautions to not get a cold or flu or whatever.  This is.. also just the way it is.  Welcome to my 'new normal.'

But that timeline that I used to be able to see, even if a bit blurry, is just gone.  I suppose this means I'm going to be living day to day until I feel a bit more like a human being, and I will continue to take steps in the right direction when I can.l

The exercise bike is partially put together... T doesn't care to use it so it's just at the back of his mind. But when the day comes that it's FINALLY assembled... I can at least begin exercising.  Unless my doctor feels that with active Myositis this is a bad idea.  Either way, even if I can exercise even a little everyday it should only benefit me, right?  And the eating thing... bland diet or not things have to be done differently.   And this is the only way I see my life right now, just getting from one moment to the next, one day to the next, one thing to the next.

...And who the hell knows what's next?  I sure don't.

Dammit.

Autoimmune Hepatitis, Myositis, My Life

One more appointment out of the way.  One more trip to the lab to get more blood work.  More talk of a secondary AI disease (Myositis), and discussion of Paroxysmal Muscle Weakness.  All in a day's work, right?  All joking aside, it's just movement in the same direction, albeit slowly but surely.

Getting from point A to point B is mind-over-matter now.  The excruciating pain in my lower back I'm told isn't electrolyte-related and is part of the "Myositis" issue.  My Hepatologist, if I understand correctly, can't make that diagnosis definitive, as it requires a rheumatologist to do so.  This can be very difficult, however, unless one is lucky enough to find a rheumy doc who is also a D.O.  Now, I won't go into the whole 'what is a D.O.' thing here because it would just take too much time.  What I will say is that I prefer D.O.'s over the average M.D. because their D.O. training means they're trained and take the stance of... looking at the whole person, rather than the parts.  In other words, they look at the big picture.  My GP is a D.O., and every specialist I have to deal with I tried to choose based on whether he/she is a D.O. (such as my cardiologist).

Mind over matter, literally...

I have to WILL myself through every step I take now.  The muscles in my lower back literally LOCK into place the second I stand, preventing walking in a normal way... or sometimes walking at all.  In other words USING those muscles is almost out of the question.  The leg weakness, the arm weakness, I'm told, is also due to the AIH and most likely even more to the myositis.  Myositis is not something anyone wants, trust me, and I'm not sure where it will end.

Geting a definitiv diagnosis isn't really going to be so easy.  AI diseases are complex, and many of them have to be, in part, a diagnosis of exclusion, though not always.  Many autoimmune antibodies aren't found to be present in about 20%-25% of people with AI disease, and the other factors are sometimes hard to catch.  When someone spontaneously goes into remission... that makes it more difficult.  With aldolase levels elevated again, with the problems with the muscles in my back, etc... it could be easier to get a diagnosis.  Not sure.

Eventually, the Aldolase levels could normalize and stay there, though myositis could be rampant.  The reason for this is that Aldolase will decrease as muscle tissue is destroyed, so it's not the most reliable predictor for severity or even presence of the disease.  Where I'm lucky in this is that I'm being treated for Autoimmune Hepatitis, which includes Imuran/Azathioprine... which is used to treat myositis as well.

"You're Aldolase is elevated AGAIN.  And THAT'S while you're on prednisone and Imuran!  Imagine what it would be if you weren't."

He's right, of course.  The Aldolase levels are elevated but still somewhat lower than before treatment.  Maybe we can stop the destruction of muscle before it gets too bad.

So what am I to make of this?  Don't know.  Just waiting for the definitive diagnoses so focus can be shifted solely on getting these things in remission.

Prednisone tapered another 5mg, Imuran from 50mg/day to 150mg/day.

This is where things get risky.  I can't get a cold and need to avoid situations where infection can happen.  With my immune system suppressed to this degree, even a cold can land me in the hospital.  So precautions must be taken, and I have to pick and choose where and when or if I go in public and take precautions accordingly.  I have to stay clear of sick people at all costs.

I can't do a flu shot until I'm off the prednisone, so that will complicate things further.  I SHOULD have gotten a flu shot weeks ago, but I had no idea I would need one that badly.  Lesson learned.

Bottom line today is that I'm forcing myself to sit here at the table, to type, to keep on keeping on without succumbing to the call of the couch.  Yeah, I would like nothing better than to completely veg out on the sofa... or crawl into bed for a long nap.  I have no idea what I'm to give in to.

My next bout of research, though I've done a little preliminary, is to see what I can and cannot do with regards to exercise given that I'm most likely dealing with myositis.  The commercial grade (gym quality) exercise bike arrived yesterday and isn't put all the way together just yet.  No biggie... it will get done, and I need some time to figure stuff out.

OMG... I'm so tired, my muscles ache.  But I think this may be due to the increase in Azathioprine.  Boy... am I in for a rough ride, I think.

Signing off.... for now.....