Liver

One word that can change everything.  Who focuses on their liver?  No one.  But maybe we should...

Short and sweet for now, because I've told all in my other blog.. Where Fireflies Dream.  But basically my blood work came back showing Stage 3 Nonalcoholic Steatohepatitis (NASH).  It's hereditary, and it can happen to anyone.  Precursors are usually diabetes, excess weight, and a few other things, and people can have this for years without ever knowing.  Liver enzymes can be elevated during one test, normal the next, and varying degrees of both.  So some actually have no idea they're dealing with it until they have symptoms, or when it shows up on labs.  Either way, one must be their own advocate if faced with this, because too many GP's shrug it off and try to treat it themselves.  VERY BAD IDEA, to say the least.  This disease should be dealt with and monitored by a GI specialist.

Right now I'm still in the waiting game.  I have a follow up to discuss my lab results next week, and in a couple of weeks I am scheduled for an EGD and colonoscopy.  Duodenal ulcer is suspected as well, so the EGD is basically for that.  Now, whether or not he decides to to a liver biopsy at that time remains to be seen.  Grading criteria with labs is such that, in many cases, a biopsy is unnecessary.  However, in the case of NASH, because of the inflammation and damage doctors often opt to do the biopsy.  NASH, btw, is the more serious form of NAFLD (Nonalcoholic Fatty Liver Disease).

There's no actual 'cure,' but there have been cases where treating with diabetes meds help... even if one doesn't have diabetes.  Specific diet changes and exercise is really key to helping to stave off the progression of NASH into cirrhosis.  Many times with NAFLD people have been able to reverse the effects and heal their livers.  But if they revert back to anything that caused the issue to begin with (not controlling diabetes, eating a bad diet, etc.).. NAFLD can return.

Prognosis really depends on the individual case, how much damage is done (if any), etc.

This is all I have for now---shortened here due to feeling like crap and having posted the whole thing on Where Fireflies Dream.  I'm tired, and it's time to chill.

till next time.....

Being me: I often fail. But I always try.

Wow.  Talking about getting things out in the open about communication.  Posting what I did on Where Fireflies Dream was long overdue.  I could say it was difficult, and it would be the truth, but it was also very necessary.  What I deal with every day sometimes means I have to keep things inside more than I should (if that phrase even made sense).  And when it comes time to spill the contents of an otherwise overflowing mind, well, I have no real idea how it will land on the page (so to speak).  Still, what fun would it be if I always held back?

Maybe I talk too much here lately about my health issues.  Don't know.  What I do know is that I need to talk about it so I can sort through it all and find out exactly where I am with it all.  Do I accept what I'm told?  What do I do with the waiting, waiting, waiting?  How do I expect of others?  Do I give in and let the current take me into what looks like dark waters, or do I hold on and maintain the familiarity of who I am?  I don't know where this all will take me, but I have to remain me no matter what the outcome.

I've spoken a lot about living with someone who is indifference-with-feet, so I won't revisit that except to say it's my reality.  Looking for the place to draw the line in the sand with that has also been an investigation of sorts.  I really need those answers.

As for what's keeping me in this odd limbo is not knowing what my diagnosis is.  Yeah, it doesn't help to know what others have gone through, seeking answers for years while living with symptoms, etc., especially in the absence of a support system.  I can do this alone, but I really need to know what I'm dealing with.  Anyone get that at all?

Being me.  Sounds so freaking simple, doesn't it?  I mean, how can we not be ourselves, right?  It's amazing what changes when dealing with the unknown of this nature, unsure of how your life will be like going forward with X, Y, or Z diagnosis.  Never mind the effects of not having one at all and living with a mystery until someone figures it out.  Blood work, etc., doesn't always reveal what's wrong in a timely fashion.

Oh, and where's the coping mechanisms that keep me grounded?  Hell if I know.  Good days, bad days, dealing, not dealing, hope flourishes then fades.  Damn.

Being me.  Hanging on and remembering who I am.  Every day.  Wondering how I reach out and connect when it feels like I don't have the strength.  Remembering how I used to feel.  Seeking absolution in strange places.  Finding peace in hidden places.

I suppose my words sound random, unfocused, impotent.  Okay.  I'll give you that.  But isn't that what journals are for?  I often write when I can't talk.  Making sense isn't always the goal, at least on [virtual] paper.  Sorting through the confusion and the unknown isn't easy for me right now.

*sigh* Most of my confusion comes from facing the unknown.  I just wish I could get the answers I need to know how and when I can proceed.  Tick tock, Dr. V... I need those test results.

A set of expressions

I'm worn out from posting in two parts on one of my other blogs--Where Fireflies Dream.  So forgive me if this is less than scintillating or entertaining.  What you'll see here is a little bit of what's left after unloading.  It happens.


In the midst of doctors' visits, lab work, diagnosis' that have, till now, been ridiculously vague, I feel exhausted inside and out.  Doesn't mean I've given up---just given out.

"You have Myositis," he said.  But even as he spoke with certainty he left room for the possibility that this isn't the case, and mostly I think that because he ordered more blood work to repeat labs already done (that were abnormal), and to add a couple that weren't previously done but needed.

Duodenal ulcer will be confirmed or discounted as a Dx when the EGD is done in 3 weeks.  Autoimmune Hepatitis.. unsure how he intends to proceed with confirming or discounting that one.  My follow up appt is 2 weeks after the procedures.  I have a long wait ahead of me.

As I wait for the new lab work results, I can't help but feel somewhat anxious.  Myositis being a diagnosis mostly of exclusion, I know that what 'may' lie ahead isn't going to be cut and dried nor easy.  C'est la vie.  Right?  I know this and can accept it.  But it's not easy.  I truly want someone to finally tell me what's wrong and what's to be done.  It's long overdue.  And yet, from what I've discovered during my research is that most people go to several doctors before getting a diagnosis.  In my case, I think the buck will stop with Dr. V.  He knows his stuff.  He obtained his degree at Johns Hopkins and chose to come back to AL to be near his family.  He seems very confident in what where he's going with all of this.

But DAMN if I just wish we could get on with it so I can begin the process of healing.

This waiting sucks.  And this waiting really sucks because I have to do it alone.  Blogging about a little of it is all I really have.  So be it.  Hopefully I'll get my life back once we figure out FOR SURE what's going on and how best to deal with the problem.

Till next time.....

Does knowing help?

So I've really unloaded on one of my alter ego blogs, if you guys are interested in reading.  It's on Where Fireflies Dream.  All the info regarding my appt with the specialist yesterday, findings, etc., etc., and even a bit of an unloading of things on a personal side of things.  I'm not sure what I'll have left for ATE, but I will try.  Forgive me if it all comes out more as musings than actual accounts of what transpired yesterday--all of that has been purged to the other blog.

I feel a bit like I'm standing on a cliff over a wide expanse of beach and ocean.  No.  Not really.  That's simply my desire.  Where I actually am is in a vast and vacant desert of which no life can sustain.  It's temporary and will last about as long as it takes to process the information I received from the doctor yesterday.  Though, being scared at the moment is hard to shake, I'll admit fully.  I mean, how can you just receive news like that and not be affected?  I'm shaken, and that will likely pass in time.

I'm waiting at the moment for yet more blood work results that will, or will not, or suggest, etc. if one of the major things I'm dealing with is Myositis/Polymyositis.  I'm praying that will NOT be the case, that my Aldolase is significantly elevated for another reason, that the unbelievable muscle weakness I have is due to something else entirely, that all these awful symptoms will be explained away easily and be the effects of something else entirely.  Hell, at least if it's autoimmune hepatitis it can be managed, and worse case scenario... a transplant is needed if it's gone on too long and did too much damage.  Hell, at this point there's nothing in my blood work to show there's liver 'damage,' just the implication that the liver is in terrible distress for some reason.  But Myositis/Polymyositis... a much more bleak scenario.  Then there's the great possibility of an ulcer...

I have an endoscopy and another colonoscopy scheduled in 4 weeks, and a liver biopsy may be needed (yet to be determined).

This is what I have to work through, and do so alone.  No siblings or relatives I can talk to, get encouragement from, no one to make happy memories with really (that's explained more fully on Where Fireflies Dream.. alter ego blog links are in the side menu).

So what now? What do I do, where do I start, how do I not lose it a little bit until I can wrap my head around what may be happening, what my doctor is convinced is happening?  How do I do this alone and in a city where I still don't know anyone?

Feeling poorly so have to sign off and find some happy thing to focus on, watch something on the boob tube that will make me laugh.  Damn, wish I just had someone, a friend, who knows me well and that I can talk to...

Until next time...