Audio Blog Continues...

Healing is a slooooooow process right now, so audio blogging will be the order of the day for now.... bear with me, as the last few days have been chaotic, tiresome, stressful... and just confusing....

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.

But Haven't I Spewed Enough Crap For One Day?

But there's never enough spewing of crap!  Well, I actually have spewed enough crap on my other blogs, but that doesn't mean I'm done.  With so much happening in my life right now, so much that interferes with my life and leaving me with no QUALITY of life... oh yes, there's much crap to spew. I assure you.

In so many ways I have the best seat in the house to the most ridiculous display of 'man' spewings.  Now I will say this about T---he's a good guy, a funny guy, and often very sweet. However, quite honestly he's still in the 'typical man' club just like most others.  Doesn't make him bad--it just makes him difficult to deal with, to reason with.

I'm just too tired for 'typical.'

So as I sit up front and center to one of the biggest shit-shows life has to offer I get the residual sound effects from the man camp.  How is it I get through a day is often beyond me.  I have way too much to deal with as it is, my health is shot to hell.. and I'm told, of all things, to "Avoid stress."  Uh huh.  And exactly how am I supposed to do that?  I'll wait.....

Incredibly, there isn't anything I can do to stop the stress as what I face here at home on a daily basis isn't something I can walk away from or avoid... or even ignore.  What a clever assessment on how things should be handled, right?  Just simply avoid stress.  Gosh.  Why didn't I think of that before?  *sigh*

With writing in ALL of my blogs today I'm finding myself understandably tired and drained.  That's not entirely bad, though, as once I've emptied myself of all that's bugging me I can proceed with putting at least mental/spiritual effort into filling that emptiness with something better, whatever that may be.

For the moment, and ONLY for the moment it's just me and my dog here at the house and all is quiet, calm.  I'd be smart to take advantage of that, so... I'm signing off for now and will try again tomorrow to talk about more substantive issues.  *snort*  yeah, I'm laughing too.

Till tomorrow....

"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.

MIA

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

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

FAST FORWARD...

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

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

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

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

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

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

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

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

Handle this, handle that, forget what it does to your soul.

I told myself that I could handle this today.  I promised myself I would at least try.  And I did, try.  I can't say I'm handling things well at all, because.. to be truthful.. I'm not.  But I'm trying.  Do I really believe I'm strong enough to get past this whatever-it-is?  Now that's the million dollar question, isn't it?

Forget it.  The whole idea of just "enduring" life is ridiculous and not something anyone should try on purpose.  I don't think anyone does, you know, do that on purpose.  Most of us are catapulted directly at the bullseye of defeat by forces we can't possibly overcome much less stop.  Some give in.  Some give up.  Some are caught between the two.  And me.. I've no freaking idea where I am in this mess.  I just know I don't like it here.  And why should anyone have to be where their soul, spirit fades beneath the gray?

Know when to get out while your spirit still has its wings.

The Status Quo.

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

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

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

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

This is really getting ridiculous.  And as for any support from T... nope.  I have to accept that I'm in this alone.  So be it....