A couple of days late, but better late than never, right?

For those of you who said you preferred the audio blog entries.  Was done a couple of days ago, so I will try to make another one sometime Thursday when I have free time. :)

Still staying tuned????

I'm going to attempt a written blog entry as I wait for an upload to youtube of an audio entry.  The entry itself is a couple of days old, so.. where I'm at right now isn't completely different, just more intense (if you will).  So much for changing the dialogue in my life.  The scenery is fine, so you know.

It wasn't a particularly bad day, and it wasn't the greatest day either.  My motivation continues to lag behind the wants of the will, spirit, and what I perceive in my mind's eye is nothing like the reality that surrounds me every waking minute.  Be that as it may, it doesn't mean I don't try and affect change, and even a little of that is welcome right now.  Still, I went from a relatively good place to being slapped back down the rabbit hole where all the dark things are.

Notice how much easier it is for me to talk about things when I'm not speaking?

It's still a trust issue, of that I'm aware.  And who knows just how long I will regain enough trust in the world and people to be able to just talk openly about anything and everything... with my own voice?  I guess my job right now is to just keep trying.

To those of you who wrote or called to beg me to keep doing audio entries, what I can say to that right now is.. I'll see.  All I can do is one step at a time, one day at a time, one life event at a time.  I understand to some degree (because you have pointed this out) that these entries are far more intimate and 'real' when you HEAR them.  Okay.  I can't promise audio entries 100% of the time, but I will promise to do what I can as time and energy allows.  Deal? ;)

Even so, tonight took an abrupt change when I had to remind T that I have to make a deposit in my account.  Long story short, I was met with a response filled with complaining, whining, insinuations, and more.  Well, good grief... sorry that I'm too sick to work right now, and sorry that the cards that have balances on them have those balances because of purchases made for THIS HOUSE.  Oh my God, but I'm really so tired of the dialogue.

I pray every night for healing, for energy, for an abundance of good health, and the ability to take my life into my own hands again, to remove the power he has over my life.  Oh, but how things will be different when I'm back on my feet again.  He's gotten far too comfortable with the control thing.

He does this nearly every night, making sure that I'm stressed, anxious, wide awake and unable to sleep.  And this is usually a given on the nights before we have to wake up at O'dark thirty the next morning.  I've a long ride tomorrow, 6 hours round trip and am loathing the idea, even knowing it's something I have to do.  I'll be in pain, and I'll be miserable.  My body isn't up to that trip but there isn't a thing I can do about it.  And now.... I get the added benefit of being ridiculously tired because T decided that unloading a plethora of negative statements and whining was a goal tonight.

As an aside, I got the new bed today.  I'm not sure it's going to be comfortable, though the manufacturer said it was the same firmness/softness as the bed that's already here in the master bedroom.  Chronic pain means even the most comfortable of beds feel like a torture device when it touches your muscles, joints, skin.  I may be a while on that recliner if this is the case, but I am incredibly grateful for that recliner, I admit.

Just checked the upload to youtube for that audio file and it's very, VERY slooooooooooow.  Just a shame it had to be tonight that I figured out an alternative way to getting those files uploaded, ad iMovie has decided to be a total butt and give errors uploading the usual way.

Well, I'm amazed at how much I can type now.  The shoulder still has crappy range of motion, but at least this part isn't as painful as it was.  And no worries, those of you who prefer the audio entries... I will still make those for the most part.

Now, while I'm able, I think I will attempt to do entries for my other blogs... specific to those blogs.  We will see, right?

Okay, so I'm outta here for the night.  Sleep tight... sweet dreams....

September 01, 2016: Life, rant, confusion... yeah, whatever.

Life.  Amiright?

Audio Blog Continues....

Healing being what it is, and a very long process at that, I'll be audio-blogging for a bit.  The last few days have been seriously confusing, chaotic, and stressful... so that's what I end up with when trying to talk about it.  Fun, eh?  :/

Pushing for healing.

Shoulder still isn't well enough recovered for me to type much, so I've done another video in the meantime.  Heads up: I'll be doing more on diet, nutrition, etc soon.

Thanks for listening. :)

Risk for Redemption.

I played a bit with the idea of composing an audio/vid for myself, just something to remind me that there was, in fact, a time when I felt like a normal human being, when pain was minimal and sometimes absent, when I could behave normally, when restrictions of body (and now spirit and emotion) hadn't taken hold.  I know I used to feel better and actually participate in L I F E.  But for the life of me, my mind edits at will and separates the now from the then, the me I became and the me I once was.  So to keep it all in perspective... I made an audio movie with pics ranging from 8 months ago to 4 years ago, before this big crash in everything that is 'my life' and 'me.'

I was hesitant to upload it here (still am), but a friend of mine said "Do it.  Put it ALL out there, and to hell with what anyone thinks!"  It feels odd to see my own face all over this video, but... it's mostly for me anyway, something I can look at and recall that L I F E was there in me, and maybe.. just maybe... I will start believing again.  enough of the typing... arm aches horribly.

The compilation set as a reminder of where I once was in my L I F E and H E A L T H, remembering a healthier, happier me... taking a risk for redemption of myself, an apology to tell the woman I've become.... 'I'm so sorry I let you down."

Experiment #1...

Until my shoulder heals and typing is no longer painful, I'll be making these audio entries.  This first one is only an experiment, but I'll be making more soon with an actual message. lol  ;p  Thanks for hanging in there with me.  xo

Post-Surgery Pain and the Damaging Effects of Indifference.

This is difficult.  Post-surgery for frozen shoulder and minor rotator cuff tear and I'm feeling like hell.    It will take a long time to recover and regain full use of my left arm, and dammit but it hurts to type.  I almost decided to do an audio blog but not enough privacy the last couple of days to do that.  So I'll make this just a quick check-in.

I'm not sleeping, mostly getting up several times a night to move my arm, elbow... to alleviate what pain I can.  This is often a tearful process.  I don't know when the big crash will come, but it will.  A human being simply can't withstand not sleeping like this.  On Wednesday, then on Saturday... things will change and hopefully for the better.

Sleeping on my side after this kind of surgery isn't the best idea, and it creates a world of pain, swelling to an unhealthy level in my arm.  This became the catalyst for ordering one of those Tempur Pedic beds.  NOT the cheapest thing in the world, but a very necessary one at this point as the healing process is going to take a long time.  So be it.  It's adjustable so I can support the back of my legs and have the back of the bed upright to manage sleeping without being on my side.  Saturday, a Laz-boy chair will arrive, and mostly for the same purpose.  As it stands now my options are to sit straight/upright or lay in a flat bed.  Both options mean pain and swelling.  But hey, those recliners are awesome and it's not like it won't be fully enjoyed way beyond the shoulder healing.

I suppose at this point I'm just rambling, but everything I am is consumed with the pain and trying to work past it without taking the powerful pain killers I was given.  The side effects sucks, and that means I'm making damn sure to take them sparingly.  But either way, my point is basically that I'll be dealing with this for a while and probably not making a lot of sense when I post.

There most likely won't be daily entries for a while, but I will try my best.

Post-surgery with all it's unbelievable pain has opened up a part of me that I really would rather leave closed, shut away, and ignored.  That echo chamber of the past and present merging in unsettling ways rumbles below the surface, always, making itself known at the darkest of hours and experiences.  I find myself unsettled---not just my circumstances or thoughts.  In the wee hours, especially when awakened by the almost ceaseless pain, true anxiety sets in and grips me.  Most of the time I can overcome it and get past it's frightening messages.  But then there are times when it takes hold and I find myself incredibly vulnerable and needing a strong, positive presence to jerk me back into a brighter reality.  Things is... I have no such strong, positive presence.  Yeah.
What to do with that.

As you guys know, indifference has been my companion.  T's indifference rears it's true self amidst the pain that really feels as if it's going to rip me apart.  You see, the first part of knowing how to squash pain naturally is to avoid stress at all costs, because stress destroy's the body's own ability to send much-needed pain killers to it's needed location.  Over time, especially in the presence of AI disease and fibromyalgia.... the breakdown of this mechanism is swift and brutal, leaving me without any natural defenses.  This sucks.

I've been brought to tears by the sheer intensity and duration of this pain, and the fibro is in a massive flare-up now, adding wide-spread, diffuse pain to that of the post-surgical.  While it's nothing to brag about, I will admit that I've been brought to my knees by the force of it all, crying so hard I felt as if my head would explode.  Late at night, when it's at its worst T will simply get up, stand there... and say nothing, do nothing, offer nothing.  I've had to tell him it's best he stay away rather than bring that indifference to the already miserable situation.

It is times like this that I long for "home," whatever and wherever that is.  No one to reach out to, to plead to, or talk to.  Not a parent, sibling, or best friend.  No one.  It's only when either by exhaustion or prescription intervention does the pain lessen a little, just enough for my mind to bring forth an image of a healthy, happy, joyful, fulfilled and pain-free me.  When I fall asleep... it sometimes carries me into dreaming, those thoughts.

My arm is in a lot of pain at the moment, so I'm going to sign off.  I hope that each day with willpower and physical therapy.. and even the weaker moments when I allow myself the prescription help to relieve the pain... maybe I'll get stronger, better.  I have 3 days of PT this coming week... and I pray it's the start to real recovery.

I need this pain to stop.  I really do.

Hopefully I can post tomorrow.

PS... I was amazed at how many page views Where Fireflies Dream received.... gave me a smile.

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.

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.....

One Hundred and Twenty One.

So far the numbers, the diagnosis... just fails to sink in.  But as I read articles and forums of people with pre-diabetes talking and sharing information I've come to realize one thing that is more than just a little common: Most with "Prediabetes" tend NOT to take it seriously.  I'm one of them.  Even as my family history shows the incredibly high risk of type II diabetes it still just doesn't mean anything to me right now.

My mom and oldest sister both died of complications that began with diabetes.  That puts me at risk, a much higher risk of developing type II diabetes than the average person who doesn't have a family history.  And yet---I somehow just... don't... care.

9 days ago my Endocrinologist, who diagnosed me, gave me a sample of medication I'm supposed to inject once a week.  A 'sample' because some don't tolerate the medicine well AT ALL.  On one hand that's a reason I've not started it yet, but on the other hand I don't want or need the horrific possible side effects and wonder if it's worth the risk.  It's the only thing I can take at the time because of other health issues.  But still...

I take my fasting blood sugar each morning and it's been fairly consistent, with this morning being 121 (elevated by about 10 points from a few days ago).  Fluctuation is all.  But it still doesn't register. I'm aware and I don't care.

At the moment, and probably not due to any blood sugar issue... I'm hurting all over.  Time to lay down.  Pain, pain, and more pain.  Honestly, my intentions were to talk nutrition and plant-based diets vs other diets.  I'm just too weak and uncomfortable.  Maybe tomorrow....

Till later.....

Well. Damn.

If there's anything that I'm NOT afraid of it's doctors and needles.  I don't mind a shot when necessary, and I don't mind blood work or IVs when needed.  However, one thing I discovered today is: I rather NOT okay with giving injections to myself.  And that, unfortunately, is what it's come to... at least right now.

So I saw my Endocrinologist today regarding my lab results for Cushings, Adrenal Fatigue, and... blood sugar issues.  The latter was a big concern because I ended up with Cushing's Syndrome while taking Prednisone, long-term (approximately 3 months).  My allergist stated flat-out that I would be lucky NOT to end up with Type II Diabetes due to my reaction to the Prednisone.  Lovely.  Especially given that my mom and oldest sister both had it (both deceased).

I have other health issues so the drug my doctor wanted me on can't be an option right now.  Lucky me, instead I get an injection... a treatment for Diabetes that's used for PRE-Diabetes/Insulin Resistance--which is where I'm at right now.  Damn.

Serum fasting glucose, Glucose Tolerance Test, AND serum Insulin were taken to assess IF I were in trouble and how badly.  My fasting INSULIN was double what it should have been, my fasting glucose was 111, and at one point... my fasting glucose (in the past few months) was 123.  I had NO idea about that 123 FG.  So here I am having to give myself a lovely injection in my abdomen (skin) once a week for 2 weeks to see if I need to continue that or not, long term, OR... if she's going to put me on another protocol.

The GOOD news is, at least on this one test, my adrenals are perfectly fine and right in the middle of the normal range.  She doesn't completely trust it so wants to test them again in 2 weeks to see where it is.  I also have to have my A1C tested again in a couple of weeks.

It's begun.

I'm NOT looking forward to giving myself an injection, even IF it's an automatic device and pre-loaded.  Just YUCK!!

I have hypOglycemia symptoms and have had those in the past.  I won't explain the process here of what happens BEFORE a person ends up diabetic, etc., because it's more time and energy than I have right now.  But hypOglycemia symptoms suck pretty bad.  Weakness, shaking, fatigue, cold sweats, headaches, etc.  What fun.  However, we're not exactly sure what's causing the chronic pain.  Endo says she also wonders about a myositis situation given the elevated Aldolase on a couple of occasions.  It's not elevated NOW, but I also was on prednisone and Imuran for 3 months, so that took care of any inflammation there might have been in my muscles.. causing muscle breakdown.

I don't know how anyone will ever be able to nail down the cause of the muscle pain after my having been on corticosteroids.  I just don't know.

Well, the pain is pretty severe so am going to sign off for now.  Wish me luck in the morning when I have to give myself my first injection.

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....

It's My Blogger, I Can Whine If I Want To, Whine If I Want To...

You would whine too if it happened to youuuuuu! No, not really.  But it made for an intro that invoked a smile, even if a small one, right?  My busy week has left me wondering, unsure, and stuck in a health loop that I'm not sure will end easily.  Wow.  Like THAT doesn't sound familiar.

Life being what it is we just need to get things off our chest or deal with the consequences of, well, holding it all in until we lose it.  Right?  Right.  I suppose many people have their own way of dealing with or working through things life tosses their way, but for me.. I have many outlets.  Blogging, however is the one remaining on my list that I can actually use at the moment.  So be it.

I already talked about the elevated ferritin, so I'll leave that one be for the moment.  I saw an Endocrinologist yesterday who believes I have (((( wait for it  )))) Adrenal Fatigue caused by (((wait for it again! )))... long-term use of Prednisone.  I knoooooooooow!  *Putting on my best shocked face*  Basically what this means is that the prednisone put my adrenals to sleep and I have absolutely nothing to help me with ANY kind of stress.  I've been stressed for YEARS; Chronic, nearly 24/7 unbelievable stress, both emotional AND physical.  Then, I have to do a 12 day Pred Pac last year, then 3 months THIS year.  The thinking is that, because I went into Cushings Syndrome, my adrenals shut down.  And this is what happens when you develop Cushings.

I have almost every single symptom, and my Endo doc recognized what it is.  It can't be confirmed without blood work, and I got that today.  And tomorrow, because of the Pred, because of the Cushings, because of the possible adrenal fatigue.. I have to have glucose testing to see if my pancreas is damaged and I'm edging, or IN, the throes of diabetes.  My serum glucose is not showing overt diabetes, but that doesn't tell the entire story.  Type II diabetes is one of the more common side effects.  Nifty, huh?  *sigh*

The other appointment I had today was with my bone doc.  Got the MRI results back, and as suspected, I have a torn rotator cuff.  Surgery, because my arm is UNBELIEVABLY painful when I move, is the only option for me.  Day surgery, they'll repair the tear, file bone spurs, and send me home with pain meds and a few restrictions for a while.  There are two problems with proceeding right away with surgery is the fact that I have been on Prednisone and it was 'long-term.'  The other problem is the possible adrenal fatigue.  You can't add additional stress to the body when it basically lacks any defense.  Suppressed adrenals are VERY bad news, and in this case it would mean my body couldn't handle the physical stress of surgery, even minor surgery.  Getting upset at someone will shut you down completely when your adrenals are "asleep."

I can't go into all the details about adrenal fatigue because, literally, it would take a research paper to explain what it is in detail as well as the processes involved.  It's progressive if it isn't addressed and quickly.  People can be heading down that road for years and not even know it, and if you're on that road already... prednisone will push you right over the edge.  And it will.. WRECK. YOUR. LIFE.

So where I am right now in this is simple: Wait for blood test results to see IF what I'm dealing with actually IS adrenal fatigue, and go from there.

Not much else I can do.

Guess I'm done for now... arms too tired to type much longer.

Oh... hope you like the song I left for you guys....

"You've chosen lessons of pain"

I received a message with this video in it yesterday.  I have no idea who the person is who sent it... but, oddly.. this is one of my favorite songs and one I listen to every night.  Headphones on, dark room, and songs to obliterate the thoughts....

Getting it all off my chest.

Well, it's a little cathartic to be able to vent, to scrutinize, to assess, to get it all out when something's bothering me.  If you want to know exactly what I'm talking about... it's HERE.  PART I and PART II were needed as this was, well, you'll see if you're curious enough to go there and read.  The discussion was about Beta men vs Alpha men and the necessary balance of power in a relationship.  I'm past that now, moving on, and wondering what the hell I'm going to do about my life as it is at the moment... not much of a life at all.  Aren't I always struggling with this?  Don't answer.

Exhaustion overcomes on the other side of stress.  I'm pretty much there at the moment and fighting like hell to defeat its encroachment.  What I'm left with is a familiar struggle to find my strength and focus again.  It's okay.  It is what it is.

I have to face each day like I don't remember the one before.  I can't allow myself to have any regrets, or allow the sense that I lost yet another 24 hours of my life.  There aren't any do-overs.  What I do is wake and think to myself.. "Today is the day."  It's a mantra of sorts, and one that has yet to actually work.

I'm spent.  Working on those two hefty entries has left me with virtually nothing.  So, if you're curious... click on the link above to read the most of today's crapola.

The fireflies have returned...

From my other blog:

I often see them outside the bedroom window at dusk and in the dark.  Sometimes one will cling to the outside of the window sill... and just blink... almost like it's saying hello.  The whimsical part of me remembers better times, before the pain and weakness, when I would go outside and just stand there among them.  There really was no place or experience more peaceful.  Now, I watch from afar, wanting desperately to be a participant again... in life.

Not sure when or if I'll ever be 'normal' again.  I'm losing hope, I have to admit.  My own light flashed brightly then.. simply went out for the most part.  And here I am, waiting in the dark, just waiting for those with the power to help me heal to... help me heal.

I waver these days between hope & depression.  And, there aren't any 'up' times at all anymore.  This severe pain, worse than anything I've ever known, has literally taken over my life.  Now, my life is measured, literally, between those doses of Tylenol... as I wait.

I've sent up the flare....

When I'm without my voice, music...

When I'm without my voice, music...

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....

Is THIS my "New Normal"?

And what I'm left with in the end is--not a single answer, solution, nor any real strength to wait until the next step reveals itself.  Over the span of more than a month now, ever since titering off the prednisone, my body has become my worst enemy.  It's weak when I need strength, it's 'loudly' painful when I need peace, serenity, rest.  And for the life of me nothing seems to get better as the days pass one after the next.  Nothing, it seems, is working.

There is hope, right?  People always say "There is always hope."  But the time for continuing to believe in something that has yet to be true--is coming to an end.  Once again, though most want to help, doctors are throwing up their hands and telling me--they don't know what to do, what it is, or how to help me.  I still have one last appointment, with an endocrinologist this time, who may be able to help.  Is this going to be my last hope?  I don't even have the strength to ponder that question.

So in this "New normal" of mine, real life doesn't exist.  Nothing beyond the windows means anything, and all inside this house can continue to collect dust in it's blooming irrelevancy.  Honestly, I've never experienced ANYTHING like this before and don't know what it is I'm dealing with.

I have no appetite whatsoever, and food doesn't even taste good anymore.  You'd think I'd get some benefit from that, like weight loss.  But no, thanks to the prednisone after-effects I can eat less than 1,000 calories a day and not lose a single ounce.  yay.

You're probably thinking "Oh, that sounds just like depression!"  Well, perhaps.  Except.. depression makes it so you don't WAN'T do do anything, go anywhere, and while it comes with physical pain, etc... what I'm dealing with isn't quite like that.  Oh, I GET depressed--but who wouldn't?  My mind and spirit WANT'S to do things again, not spend most of my time in bed (literally), wants to go places, take my camera and explore, and have at least an ordinary life if not an extraordinary one.  The DESIRE is there, buried deep beneath weakness, fatigue, pain, nausea, and so much more.  It's there, but it's being held hostage at the moment.

My life now, day by day, is marked by two thoughts: Morning: "Maybe today!"  And evening: "Maybe tomorrow!"

Is THIS my new normal?  Is this all there is, all I have to look forward to?  Will I ever feel good again?  Will I ever feel anything but pain, fatigue, and discomfort?  Will I ever have JOY again?

Will I EVER feel good or experience joy again?  Will it always be about pain, misery?

Will I really have to spend the rest of my life feeling like I have the worst case of the flu 24/7?

Will I ever... get answers to those questions?