Chronic Epic Failures.

As I reach for health and healing, returning to MY life, it's not without obstacles.  If you've been reading here for a while, and reading my other blogs, this has become glaringly apparent.  So why am I STILL struggling with this?  Why is it I'm still stuck in limbo and unable to help myself?  And WHY are the obstacles STILL here?  I have to say... there's no easy way to answer those questions.

Ever hear of situations where someone is trying to lose weight, or start an exercise program (or both) and they're met with resistance from someone very close to them or.. someone living with them?  Yeah.  Well.  That's where I am and where I've been.  And now that prednisone has put weight on me I have to struggle to take care of that, because dieting doesn't quite cut it.  There's a lot of different physical mechanisms in place that thwart that.  Not that you can't lose, but it takes a lot more diligence.

I've spoken to T so many times now about not bringing home junk food and garbage food.  The junk is easy to avoid, but T's favorite thing in the world is frozen food.  Ugh.  Nasty stuff.  Okay on occasion, but for me.. it's wrecking my health beyond reason.  Too much sodium and sugar, too many processed carbs, not nearly enough veggies.  Why even bother buying that crap?

Each weekend T insists on buying the groceries.  In my current state I can't really go anywhere anyway, so I'm at his mercy.  How is it he can easily forget the stern warnings from my doctors about eating as clean as possible... is beyond me.  And not a single discussion, and there've been MANY, seems to get it through his thick skull.  smh.

So he chooses 'easy and cheap' despite the warnings, the risks, and the damage to my already compromised health.

I was told yesterday that my triglycerides are up AGAIN, and now my ferritin is elevated above normal.  NEITHER of those things are good!  *sigh*  WTH am I supposed to do?

I'm still searching for answers to this because, honestly, this is a very dangerous road to be on for me.

Dammit.

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)....

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.

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.

The Provocative Power of Cake.

King Cake.  If you live in the south, especially along the Gulf Coast, you know what this is and how it tastes if you get it from the right bakery.  But I'm here to tell you that the devil himself is in this colorful confection, and it has the magical power to lure you in with promises of heaven.  LIES! lol No, seriously... it's really really a BAD idea to have King Cake around when you're watching your diet closely.  Dear God, but T has yet to listen to me about this stuff!

Now, the King Cake in the photo is a little different than the traditional version, which is more a coffee cake than an actual cake.  But, I liked the photo---So there's that.  Now, if you're fortunate enough to get the cream cheese AND pecan-filled version, then you're in for a REAL treat.  But be warned, if you get it from the wrong place it may leave you disappointed.

Anyway....

So T brought home a KC last night.  OMG.  Help me!  I had a piece and am sure that there's crack in these things.  It's gorgeous, beyond tasty, and really something you should refrain from having around when you need to limit sugar and the like.

Today is a challenge with respect to eating better.  The devil's pastry is STILL sitting in the kitchen and I'm exercising GREAT willpower not to simply eat every last bite!  No, I'm not going to eat it, but I have to say I'm not very happy that the temptation is in there to begin with.

DAMN the forces that conspire against me!

Oh screw it!  Laissez le bon temps rouler!

Really?

Shakeology is an awesome product, and it tastes really really good.  It replaces a meal, or two if you can spend that much money per month (I replace ONE).  Sounds easy, and it used to be.  But what I have to deal with NOW is that the weakness I have, the weird and excruciating lower back pain (despite the prednisone, no less) actually prevents me from being able to stand and MAKE that shake!  Is this the Myositis part of my current life experience?  Is it something else?  I mean, really?

I have to wonder where this is all leading.

So what's the solution to this?  I've NO idea.  Having to lean my elbows on the counter JUST to be able to stand there at all doesn't exactly allow for making that shake every morning or afternoon.  WTH?  *sigh*

The rest of my diet has changed dramatically due to this as well, and since I can't even stand long enough to make a sandwich.  The unhealthy alternatives, you know... the ones that you can quickly nuke without any preparation, well that's become my way of eating.  Trust me, this is not a good way of eating if you're goals are good/improved health.

I've considered replacing dinner with a shake so T can at least help.  I'm not sure how that will work, but it may be the only solution to the problem at this time.

This weakness stuff is ridiculous....

*ugh*

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.

Well THAT was an epic FAIL!

Look, you won't hear me say I'm perfect.  I'm not even willing to say I'm striving to be perfect.  Why on earth would ANYONE set such impossible goals for themselves?  Not me.  Not now.  Not ever.  The only thing I can promise myself, or anyone, is to do the very best I can.  Having said that, so far... I've kind of sucked at it.  Dammit.

If I mention prednisone, it's for a reason.  Anyone who's had to take high doses for any real length of time (more than a few days) understands PERFECTLY about what it will do to a body, even to someone's thinking and personality.  It's a steroid, so yeah, it can do those things, whack out your entire body.  Corticosteroid or not, it's STILL a steroid.  And this particular steroid is a complete BITCH.

Swelling is a huge and very common side effect.  It's also a concern in that it can raise BP to an alarming degree.  That same swelling (edema) can also make it hard to breathe or sit or stand or lay down comfortably.  And that is only ONE of the nasty side-effects.  The next biggie... APPETITE increase!

Now, as I've mentioned before, the mechanics of this are annoying and bewildering.  And puzzling!  On one hand your taste buds end up dulled, leaving foods that you once liked tasting like clay.  Nothing tastes good.  But your appetite is through the roof 24/7 and doesn't ever take a damn break.  Well, unless you get the nausea... but even then that gnawing hunger is still there, you're just now turned off by food and can't imagine WHY you want to eat when everything sounds down right disgusting.  What the hell?

Fine.  So most of us who end up in this place, the place where I find myself now, have tried so many things to make it so anything we eat won't be a hit against our health.  Thing is, there doesn't seem to be an easy answer on how to handle this where it actually works in keeping the water weight, or actual weight gain at bay.  Younger people, teens and 20s often have an easier time of this as their metabolisms are still pretty fired up.  And if you're suffering from the crushing fatigue that is one of the hallmarks of AI diseases, then you end up not being able to exercise, or only able to exercise so little that it hardly does any good.

Well, right now I realize I made mistakes in what I choose to snack on during the day.  The usual "Small meals, more frequently, to lose weight" idea DOES NOT WORK WHEN YOU'RE ON PREDNISONE!  Know this!  And if you're over 30... beware, because you're fixing to find out just how much slower your metabolism is from when you were in your 20s.  Is it guaranteed?.. this weight gain?  No.  Everyone is different.  But don't be shocked if you find yourself swelling up and retaining Lake Michigan.

I just keep keeping on and riding this thing out.  From all I read this can all be fixed once off prednisone, given that one's adrenals haven't completely shut down.  THAT... is another story altogether.

Sheesh.  I need to go lay down....

Almond Milk. Okay'den.

Really... nix the dairy, get some almond or coconut milk, and do your colon a favor.  M'kay?  Well, that's what I've done anyway.  I guess I just got tired of looking at the blender and bag of Shakeology and seeing the horrors to come if I drank any of it!  Thing is, it's NOT the Shakeology at all.  My problem, apparently, is dairy in some forms, so replacing the dairy with the almond milk was a smart choice on my part.  Yeah, I can boast about that just a little bit.  I mean, I made a smart step in the right direction.

I guess when determining how best to proceed in fighting off the effects of high-dose, long-term prednisone is to begin with baby steps.  I know some of you are the jump-right-in type, and I'm usually that way myself.  But when it comes to having something in your system that's going to ultimately wreak havoc on you if you make the wrong choice, you really have to make those choices carefully and with MUCH thought and research, and... planning.  You have to plan for the unexpected.  Seriously.

My taste buds are so whacked out nothing tastes right at the moment.  The cruelty factor here is that if something is SWEET.. I can taste it more than anything else.  My nemesis, sugar, is out to get me. Dammit!  And salt, is something that is BARELY detectable now.  Coffee doesn't even taste right... though I'm not about to say it tastes bad, because it doesn't.  So this altered sense of taste makes the dieting and eating right a lot more complicated than it would otherwise be under normal conditions.  What a freaking mess.

So back to that almond milk thing....

As it turns out, almond milk actually doesn't taste much different than dairy.  Even with an altered sense of taste I can see this.  I've had almond milk before, btw, and I know it doesn't really taste all that different.  At least not to me.  So if you're looking for a dairy alternative, try almond milk first.  I also love coconut milk.. yes, milk.  I also love the water, but that's not suitable for shakes.

I'll be perfectly honest here--all these choices, good and bad, aren't helping me lose weight because of the prednisone on board.  Doesn't mean YOUR experience won't prove vastly different.  I'm just saying that if you're having to take this stuff just be informed and prepared for your body to not respond the way it normally would.  If you go into dieting, eating better, etc. with that in mind.. then you won't likely be so disappointed in the scale numbers.  It's going to be okay.  Prednisone's side effects are temporary, and if you're taking prednisone you are most likely for a good reason... I hope.

So two thumbs up for almond milk, which is naturally not high in calories btw...

Here's to health, despite that damnable prednisone!

Hello World...

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

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

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

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

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

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

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

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

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

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

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

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

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

I'm not holding my breath....

Almond Milk, Shakeology, and DAMMIT I'm sick!

Okay, so not like with a cold or flu, because not only would that make actual SENSE, but it could land me in the hospital with pneumonia; happens to those on immunosuppressants.  But today I'm dealing with nausea.  Intense nausea.  I'm down a couple of cups of my usual coffee quota, and I'm here to tell you that the idea of drinking or eating anything at all is trying to make me yack.  No really.  Not joking.

I'm going to try, though, you know... having another coffee.  Because I'm just hardcore like that.  Or ninja.  I'll take either.

No shakeology today again.  I didn't want to risk another bout of what happened yesterday as my GI tract is NOT happy about something.  I have purchased some almond milk in order to nix the diary out of my diet again.  Maybe that's wreaking havoc or playing with fire in some ways, so no real reason to continue poking the bear in that respect.  Listening to my body has become a skill I've almost mastered.  Kind of a have-to skill-set I must say.  At least in my case.

Anemia:  You guys may remember I had to deal with that and had two IV iron infusions a few months ago to remedy the situation.  Prior to the diagnosis I was dealing with horrendous back pain, body pain, nausea, loss of appetite, and several other issues.  Now, much of that continued past the IV iron infusions as they were the result of the Autoimmune Hepatitis I have and didn't know I had then. But my backache went away, and some of the nausea.  Not all, but it took the edge off.  So with the return of a lot of the symptoms I've been dealing with, and considering I now have a bleeding GI tract, maybe my ferritin has plummeted.  I hope not, because I re-introduced meat, of all things, back into my diet to help heal the anemia.  Heme iron is superior for the body and doesn't require any food combinations or supplements.  Once I get my health back on track I'm going back to vegetarian/vegan.  It's a moral choice, and also.. I really don't like meat that much.

This nausea is driving me crazy.  I have the shakes, sick to my stomach, nausea feeling in the back of my throat, and I have a sore tongue.  Oh, and lets not forget that despite the prednisone I'm still on... my appetite left the building like Elvis today.  Good grief, I wish my body would make up its mind.

So what to do?  Most likely will have to call my hematologist and request ferritin testing again, just to be sure.  Just in case.

I'm tired of blood tests, to tell you the truth.  I don't mind the needle, etc.  I just really hate having to go to the hospital or doctor's office to have it done so often.

Sheesh.

My stomach... ugh.