Stop it!

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

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

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

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

O. M. G.

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

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

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

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

W. T. F. ???

I really really wish he would just freaking STOP IT.

Ugh.

Nothing Tastes Good.

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

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

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

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

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

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

Till next time....

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.

Fact after the fact.

Had an appointment with the Dentist re my "mild" sleep apnea.  This diagnosis, btw, was really surprising to me, because I knew I wasn't sleeping well but thought it was because I was waking up so much during the night.  Pain, etc., all played a roll in my tossing and turning at night, fighting will a stubborn pillow which refused to submit to my will, and wresting with a blanket that I once viewed as the softest, most comfy-cozy piece of fabric on earth.  I mean, microfiber is the shit, is it not?  Yet, it never occurred to me that I could have sleep apnea.  Who knew?

This diagnosis, as you guys may know from past entries here, and on my other blogs, happened a few months back, even prior to the AIH diagnosis.  However, the dentist I see who makes the oral device (CPAP is out of the question) revealed my "score" as "11."  I had no idea I even had a score, much less what that number was.  I really need a new pulmonologist.  Sheesh.

So the dentist held up my chart with "11" written with a black Sharpie and explained what was what, again, and what I should look for in changes as the device is adjusted over the next couple of weeks.  I asked him, as T did (he was there) what the number meant, and this is what he told me....

"That number is the score they gave you based on how many times you stop breathing while sleeping."

Well.  Alrighty then.

So as he further explained, it's a score based on how many times a person stops breathing during the night divided by how many hours they slept.  The score means that, on average, I stop breathing 11 times per hour.

I sat there for a moment considering this information, and I wasn't sure how to react really because it was the first time I learned of this.  No one at the sleep study center told me, and my pulmonologist didn't bother telling me at all either.  It took a minute to digest.

So I guess there's a damn good reason I'm tired all of the time--in addition to all the pain and weakness.  But wow.  11 times an hour--and that's in the MILD sleep apnea range.  Crazy.

Over time it will be interesting to see how I feel as the device is adjusted forward.  This device, btw, moves the lower jaw forward a little to open up the airway and move the tongue forward--this is based on CPR maneuvers.  Pretty cool.  But it takes a little time because if the jaw is moved forward too quickly it can cause TMJ.  I already have issues with this due to grinding my teeth when I sleep, something the dentist has told me is solely due to stress.  In fact, when I asked him what the 'cure' is, he replied... "Not being stressed."

Well, I'm shit out of luck in that department.  Oh well.  So anyway, the adjustments for me have to be done a LOT slower due to this.

On another subject, I will have a new cardiologist soon.  My first appt will be in May.

Now that I've made my arms ache typing... I'll wrap this up.  There's more to say but I'll give myself a little time in that respect...

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.

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...

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....

Too Weak to Care.

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

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

What a crappy trade-off.

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

The Death of a Diet.

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

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

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

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

If it's not one thing....

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

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

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

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

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

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

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

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

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

I'm out of here.. for now.

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.

That Last Nerve

I've spent the better part of my morning researching ways to obtain the OLD weight watcher's materials.  Not THAT hard to find, mind you, but people apparently think their stuff is worth a fortune, with some asking as much as $124.00 for materials that came FREE with a $70 membership.  I guess they've caught wind that the NEW WW plan... rather sucks.  Okay, fine.  But seriously, gouging is really really tacky.  Yeah, I'm sitting here a little irritated that I HAD those materials and gave them away in 2013.  Hindsight... ugh.

Due to the prednisone I'm on (and trying to taper off of now) the best I can hope for by following a weight loss program is to avoid gaining too much weight.  That's not a typo.  Even if you diet and exercise like crazy on prednisone.. you'll still gain.  Yes, some people don't, and that's usually the younger folks who are taking prednisone on a shorter-term basis and have those fabulous younger metabolisms.  In my case, I'll be lucky to not gain while dieting.. because many people have.

Looking around on eBay and Amazon I was able to find a couple of kits that, while not complete, still have enough of what I need to get by.  Seriously, WW shouldn't have messed with something that was already about as perfect as it gets.  So why do they do this?

From what I read, WW likes now likes to come out with something 'new' and 'improved'... just about every new year.  Now, I have no issues with keeping in line with new research etc., but to simply change something that works just to lure more people in is, imho, a total disservice to customers who are relying on WW being that 'diet' and 'isn't a diet.'  As their new plan stands now... it's difficult, chaotic, and people are finding it extremely frustrating and difficult because it just doesn't fit into everyday life like it once did.  This means standing at a work or holiday function near the carrot and celery sticks while everyone else there feasts on the good stuff.  No really, it's true.

The old WW would have you eating what everyone else is eating, only in moderation and/or using your 'weekly' points.  Why on earth did they change this when they had to know it would be more difficult to fit WW into their lives realistically?  And the worst part is that some say they're simply not losing or losing well on this new plan.

Oh, and don't even get me started on their new web site!  I've never seen such a chaotic mess with missing plugins, missing buttons, and mincemeat navigation.  There's a lot of discussion in the forums regarding how frustrating site navigation is.  It looks like WW went for 'pretty' rather than 'functional,' and it's a shame because members are already frustrated as hell with the new plan.

I have to say that what started as a 'go get 'em, tiger!' attitude turned into my wanting to scream at the top of my lungs in frustration.  Okay, maybe the whole screaming thing was a bit of an exaggeration, but I can say with 100% certainty that WW has gotten on my last nerve.

Ugh.