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...