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. :)

September 01, 2016: Taking Care of Me is Priority #1

Life.  You know.

Audio Blogs Continued....

NOTE:  This was done a couple of days before uploading.  From now on I'll try to remember to put dates on them for perspective.

Unbelievable how long healing takes with shoulder surgery.  Worse than that is trying to heal in an environment not exactly conducive to healing.  NOT my idea of actual 'living.'  Anyway, audio blogs continue until I can type without severe pain....

Pushing for Better.

I'm pushing harder now for healing and recovery from my shoulder surgery, so that means more intense physical therapy.  What that ends up meaning is more aching and less ability to type... for a time. In the long run this will lead to faster results.  So, sorry to say I have to do another video entry.....

Thanks for visiting & listening.

The Risk of 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...

So until my shoulder heals and typing isn't painful, I'll be making these audio entries.  This one is just an experiment, so stay tuned for other entries with an actual message or goal. ;)

Post-Surgery And The Life I Used to Have.

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.

Flat-Lined.

It's not as dramatic as it appears.  I'm referring to just feeling down.  I've posted in a couple of other blogs over the past week, but I'm having trouble posting in all of them right now.  Sincerely, I want to.  I do.  But I've been very sick and it's basically kicked my butt for the most part.  Still, I have things I want to talk about, things I would like to talk WITH someone about.  It's not always that easy, though, is it?  The communication process between humans these days has become ridiculously complicated and full of boobytraps.

It's not boredom.  I'm not bored but frustrated that my physical body and my emotional body are at odds.  I'm not living life.  I'm definitely not living MY life.  Anything that resembles 'life' is filtered through T, and that's no life at all.  No one, and I mean no one who has to filter their life through someone else's won't do it for long and will eventually, out of necessity, find a way out so they can breathe again, live again.  It's not a matter of IF but a matter of WHEN---always.

There's not much else I can say to paint a picture that you'd understand to any real degree.  That's not saying you guys aren't intelligent but rather than I'm having a difficult time expressing myself.  It's not you, it's me! lol

I have a friend, however, that I used to speak with quite often, someone who gets me almost intuitively, and I've not spoken to him in a while.  But he's always there when I reach out.  He lives in Atlanta, so it's not like we hang out.  When I speak to him, even via email, I feel 'heard' and respected.  His responses to questions etc are spot-on and given attention as if they're important.  He says.. they are important.  It's the same when he reaches out.  We have a wonderful friendship, unique really, and he's easy to talk to.  I did have another very good friend in CA but... he's lost his way to the occupy movement and has become one of those self-loathing whites who's associated himself with B L M.  I don't speak to him anymore--he's gone quite nuts and isn't even himself anymore.  But my Atlanta friend is exactly who he was when I met him some 14 years ago.

It's wonderful having a friend like that, it really is.  And he says I'm a great friend to him... he's one o the most awesome people I know, so there's love there, always has been.  There is, however, a very real difference between having to speak on the phone or email etc., and actually being able to hug that friend and say hello, etc.  Oh well.  It is what it is.  All I know is that if not for him... the misery would be beyond tolerable.

So what does all this mean?  It means SSDD.  I wish I could say something encouraging, that I'll be right back on track again and posting about more interesting aspects of life and more.  But the truth is, I'm still sick and feeling awful.  All I can do is frequent my blogs when I can and post about what's real.

Hopefully, and with prayer and perseverance, the narrative here will change--soon.

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.

The Blandness of Being.

I'm in pain.  A lot of pain.  Trying to think and write here is often too difficult, so... I choose to avoid nonsensical blathering when I can.  But then, I get a few emails or messages on FB asking if I'm okay, why am I not posting, etc.  When this happens I make sure to come here and at least put in an appearance.  As for catching up, well, not sure there's much to catch up on.  But I'll try.

I'm still waiting on lab results regarding my adrenals and blood sugar.  My BP goes very high, then... very low.  No way to treat that, and until we know if my adrenals are struggling we may not know what causes the crazy swings in BP.  It's said that those swings are more dangerous than constantly high BP.  Well, so what?  If you can't do anything about it then why bother worrying?

All there is right now is day by day assessment and trying not to plan anything in advance.  Do you hear the blandness?  I feel it.  I see it.  I live it.

What do I do all day then?  Well, I'm learning Spanish so work on that when I can.  I listen to music, watch Trump rallies, etc. on RSBN.  Well, I use the link from RSBN's web site to the youtube version so I can chat with some friends there and participate.  Not the most glamorous of lives, right?  It's okay... I'm still breathing, so there's that.

Then there's the insomnia.  I believe a lot of the blandness of being right now stems from not being able to sleep well at all.  I desperately need to get the surgery on my shoulder as it hurts badly all night long.  But I have to wait for the results on my adrenals and find out what needs to be done, if any, prior to and during surgery in order to avoid a dangerous adrenal crash while undergoing surgery.  Adrenal Crisis is life-threatening, so the surgeon isn't willing to do the surgery until I get clearance to get it, etc.  Fatigue will absolutely flatten a person out, especially when it's chronic... and... it drains the adrenals.

All in all, the stress has taken its toll.  It took its toll years ago when I was in a BADLY stressful relationship for 11 years.  The relationship was BADLY stressful---as much as the 11 yr one, only condensed into a shorter time frame.  And now it's very stressful but for very different reasons.  T at least is open-minded most of the time to what's needed to avoid the stressful situations.  However, he's not good at all with follow-through, and even in that there is stress.

I pray every day.  I ask God to just shorten this suffering--and yes, it is absolutely suffering.  Anyone who's had chronic pain knows what I'm talking about.  I try and go through my days as normally as I can, find stuff that makes me laugh, smile, or inspires hope.  Motivation is out of reach but at least I can see it in the distance.

For all practical purposes.... this is just life for me at the moment.  I will have a lot of catching up to do when I'm back to full-strength me.....

Sugar-Drunk. Not Kidding.

So today was the Glucose Tolerance Test (GTT) today.  Had to fast, of course, then drink 75mg of pure glucose and have my blood tested 3 times.  Well, it was a real PITA getting stuck that many times in one sitting due to having only two veins that are viable for that.... and they originally tried to draw from a vein on the side of my forearm.  O. M. G. NEVER AGAIN.  Horrible.  But after drinking the nasty-sweet drink I felt okay... at first.  Before long I felt a little queasy, then.... drunk.  No joke.  I was SO dizzy and stupid feeling that I had to ask the techs if it was normal.  I suppose it is somewhat, but they had to call my doctor to see if she wanted them to continue or abandon the test.  She said keep going---as long as I didn't vomit.

No vomiting, thank God.  Only the queasy feeling and massive dizziness.  Sheesh.

Got home... and just felt weak, shaky, wobbly.  All of that changed once I ate something with protein.  I'm not sure if reaction to the glucose is any indication of anything, but I would guess my pancreas is responding well enough and sending a fat dose of insulin in to take care of the sugar... hence the drop in sugar (a guess) with all the dizziness and nausea.

Their computers were down, so.. looks like it'll be a couple of days before I know the results.  My prediction: I'm fine, blood sugar-wise.  I don't have any gut feelings that I'm diabetic, and the doctor is only testing because the prednisone-induced Cushing's Syndrome can cause type II diabetes.  Still, I do expect this to come out just fine, honestly.

*sigh*  Another doctor's appointment tomorrow.  Phooey.

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....

Self-Preservation.

Why is it that, of late, I'm finding myself avoiding posting in my blogs?  I mean, yes.. I do sometimes go on at length, I know.  But for the most part I seem to wait till that part of the day when I least feel like talking, sharing, or even thinking.  And it's in THAT moment that I suddenly decide to post something.  It's just the oddest freaking thing, I have to say.

I wait till everything hurts.  I wait till I can no longer sit here like this, till I'm SO uncomfortable and in pain that I can't think straight.  Maybe, just maybe I'm avoiding actually talking.  Right?  Makes sense to me.  I'm an hour past tylenol and am still in avoidable, unmoving, unrelenting pain.  Yay.  NOT.

Sleep didn't come easily to me last night and when waking up under that onslaught I feel worse than ever.  I have an idea of what's causing the insomnia for the most part, and it's something I can avoid.  But then, sometimes the pain overrides all.  What else am I do to when nothing else works?  Side effects.  Joyful.

Still, I seek hope, motivation, and a passion for life that I know, that I MUST believe beyond everything, still exists somewhere within.  If I ever allowed myself to believe anything else I'd be in big, big trouble.  Granted, this wanting to believe isn't the same as actually believing.  I know this.  I get this.  I feel and know just how fragile this is and how susceptible it is to influence from outside.  That's the biggest problem here in finding my way---knowing that I'm up against the tidal wave of indifference radiating from T.  People who allow, or even choose to flip their internal switch to 'autopilot' are ignoring the consequences of their actions.  Why?  Well, my take on it is that it's just easier that way.  Relationships are work, but they're worth it if both parties carry their fare share of the responsibility.

Self-preservation has taken a firm hold on my life and me as a person.  I've been here before and recognize what it is I'm dealing with and know where this will ultimately lead.  My health being in a shambles right now is keeping me locked in place and shackled to a life that isn't mine, not even close to mine.  I don't recognize anything, and that.. is a very, very bad sign.  Still, I'm here... riding out the storm seeing no pause, no respite, no calm waters ahead.

Swim or drown?

That, really, is the ultimate question and one I have absolutely no answer to.  Not yet.

On to post in my other blogs.... I'll work my way through this today if it kills me....

What to make of this week so far...

NOTE:  Actual talking will commence post-whining. *snort*

Begin Whining:  Waiting.  The Watchman Device isn't, at least in AL, approved by BC/BC insurance.  This means my cardiologist and electrophysiologist have to start the appeal process to get it approved for me.  So the waiting game sits in and I'm stuck on a blood thinner I believe is ruining my health.  So there's that.  I also found out I may have a torn rotator cuff and may need surgery.  Well alrighty then.  But hey, if that's what it is an I have to go through Sx and have my arm in a sling for a month... I can live with that.  The pain.. not so much.  Since when did I become such a wuss?

I've always had a high pain tolerance, but I've never had chronic pain like this either.  Guess I'll give myself a pass this time.

Somehow the idea of just living a normal life has receded into the background of dull static making it hard to hear myself think.  Everyone goes through a little something every now and then, and sometimes it's a big something.  It resolves, and people move on.  This has been a very long haul so far, but I'll do the same once I get past whatever the hell this is.  End whining:

Re-discovering 'me' again.  Sounds so damn egocentric, doesn't it?  Especially when you say it out loud.  But hey, it's not like anyone else can do that for me, right?  Getting through the steps of the day sometimes interferes with the process, trying hard to remember who I am and all that entails.  In my situation, since it's not somewhere I've been my entire life, it's a bit more difficult given this is an abrupt situation, rather than a chronic one.  It's a bit like a tidal wave of change that pummeled and stripped everything I knew about me and my life... completely away, removing almost all recognizable things and swept them out to sea.  Well, on one had that really sucks.  But, on the other hand it just means a clean slate.  Right?

Then there's the debris, having to clear that away.  Beginning to re-think and rebuild what was once 'me' is probably one of the strangest and toughest things I've ever face with regards to my own personal experiences here on planet earth.  Not to say it's completely bad, mind you, but it is a little unsettling to have to repair damage that was done that was beyond my control.  Medication and illness has a way of doing that sometimes.  So be it.

(Have I mentioned I absolutely love coffee?)

Anyway, there are choices I have to make.  Sounds reasonable, right?  The trick is having the strength and energy to see those choices through.  Like my choice, be it a small one, to visit ALL of my blogs today and catch up on things a bit.  Sounds easy as hell, yet even now my arms are so weak and achy that I still have to rest them on the laptop as I type.  So there's that.

What does all of this even mean?  I'm still fighting.  That's what it means.  I've walked right to the edge of just giving up but have managed to not step off into oblivion.  Isn't that how we all get through the hard times?.. not by saying there aren't difficulties but by saying there are and fighting being overtaken by them.  Well.. that's me anyway.

I'm still reaching for a better life, and that counts for something.  I guess.

Hola!

So, what else can someone do when they can't sit up but for a short time, can't walk well, and is in pain 24/7 (yes, it even wakes me up at night)?  I suppose there are a few options to help one not totally give up, but I chose something that I've wanted to do for years---learn Spanish.  And yes, I had to purchase a program, and yes.. it was pricey, but I'm ok with that.  At least my mind will be active, even if my body can't be right now.

Where the hell am I even going with this?  I've no idea.  I'm distracted by the hellacious pain that's setting in.  THIS is how life is right now.  Can't sit down, can't hardly stand up, very difficult to walk, and laying down even hurts.  Maybe it's time for another dose of Tylenol.  And yes, I do realize Tylenol is hard on the liver, but.. I can't take any NSAIDs because of the blood thinner.  In just about every direction... I'm screwed.

Damn.  Well, I tried.  I guess today just isn't my day.

When I'm without words, music...

When I'm without words, music...

Not dealing well with this at all.

So I vented on my other blog Where Fireflies Dream And you can go there and read if you wish.  Yeah, it's been one of THOSE days.  But I'll be back in a few minutes to post something else.  Back soon!!

Is THIS all there is?

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?

Nothing is ever easy--nothing important anyway.

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.