MRI, Lab Results, and Fireflies!

The problem with my shoulder has gotten much worse and I'm pretty much unable to use my arm for little more than simple tasks... such as typing.  I was referred to bone doctor, who sent me for an MRI, which was yesterday.  An hour long MRI... did not sit well with my body at all.  I won't go into all of that now, but... now I wait to find out if it's a torn rotator cuff, which the bone doc thinks it is.  So much for that.

I also received a call from my PCD about some labs that were done about a week ago, and I'm once again being referred back to my hematologist.  Ugh.  The last time was about a year ago and was  for low ferritin (anemia).  I received iron infusions for that and was fine in that respect, and my ferritin levels were restored to normal.

THIS time, my ferritin is elevated.  Again, the last few tests it was right in the normal range where it should be.  I don't eat much red meat (not a big fan and prefer a plant-based diet), and any protein sources usually include chicken and fish mostly, and on occasion... red meat.  My multi-vitamin does NOT contain iron because I'm in pre/meno so well, to be blunt, I don't get any visits from Aunt Flow or Uncle TOM anymore, not in almost a year now.  No need for iron in vitamins when this occurs.

Anyway, so... I have to see the blood doctor to find out why.  Not sure if timing is the key here, or if this is just a really good indication that I'm NOT dealing with hemochromatosis, which is iron overload.  I don't believe for a second I have that.  But it still is almost always due to liver issues.  Ugh.. which most of you guys know I already have (Autoimmune Hepatitis, or AI).

Thankfully my ferritin level is only mildly raised... but I was told it's still needs attention because it means my body is absorbing more iron than it should.  I do have to say I find this odd since I really do eat very little meat.  No telling wth is causing this, but... another wait and see situation I guess.

On another note---FIREFLIES!

I've seen a few of these little guys flying about lately, but there were MUCH MORE yesterday.... and that's beyond awesome!  I DO NOT EVER, NOR DO I THINK IT'S OKAY to catch them in a jar!!  They're population is dwindling---a very sad fact---so in the very short season of their lives... let them live!  They have to have firefly nookie to maintain their population!  lol Well, it's true!

So my front and back yard is covered with them in the evenings... and, the big light at the end of the driveway is being turned off.  It's billed to us, so we can choose to have it on or not.  We're choosing NOT to have it on due to artificial light hurting the mating process of these amazing creatures.  We also don't over-mow the lawn so as to allow as much of the population to grow as possible.

I.  Absolutely.  LOVE.  Fireflies.

That Deleted Post

Okay, as you long-time readers/friends know, I often delete posts.  The last one is a bit too sensitive, so I decided to delete it until I learn more.  Yes, it's health-related, but I don't know anything about what it actually MEANS right now.  Best thing, imho, is to just let it be until I have a better understanding about what I'm dealing with.

If you read the entry before I deleted it, then you know what I'm talking about.  Given that, once I learn more I'll update.

Sheesh.

I really need a nap.  Seriously.  Life just has to get easier than this crazy rollercoaster I'm on at the moment.

$260+ Prescription and Epic Failure So Far

Maybe.  Maybe not.  Has it been enough days?  How long will it take?  WTH?  Without actually going into the failure of a very expensive medication, and without talking too much about the why's and wherefores of it all, I still have to get a few things off my chest with regards to where I am right now, today, tomorrow, and the rest of my life.

Let me start by asking the burning question: "What life?"  Yes, I'm breathing.  Yes, my heart still beats.  But there isn't any quality of life at the moment.  Now how is it that I'm supposed to do anything other than 'will' myself through each and every day when there LITERALLY is NO quality of life?  How do other people do this?  Oh, and I've looked, trust me.

I see videos, read blogs and articles and forum posts, and I just can't really connect with what they're saying, what they're talking about.  I don't understand what the hell is happening to me right now with all of this muscle weakness and shaking, which at times feels like I can't stand or walk.  Where is this coming from?  Medication?  I see no one really talking about this anywhere, and what weakness etc they may feel isn't enough to shut them completely down like this.  And I see people who are still able to get through their day and take care of common tasks, ones that are now nearly impossible for me.

What gives?

I keep looking, keep reading, keep learning, keep hoping and believing this will eventually get better. But there's one little problem with that method of 'coping,' and that's this: I have no real grasp on what "this" is!  How can you look for a solution, remedy, or cure for something that is yet unidentified?  You can't.

Yes, I know and understand I have AIH.  I get that. I'm on medication for this AI issue and hope remission will be quick.  I realize it generally takes 1.5 to 2 years for remission to be in place, so I'm prepared for that.  But these symptoms... wth?

My first week on prednisone was AWESOME, and I may have overdone things a bit, I admit.  Maybe the 8+ hours a day I spent that first week of feeling really great triggered something with the muscles?  I had chilled out the following week after the first taper because of the return of symptoms.  And yet while my dr increased the dosage again for a short while... it didn't help.  Did I trigger Myositis to flare up?  Is Myositis the other problem?  Doc seems to think so.  Damn.

OMG, seriously... I can't stop thinking or talking about this.  See, this is why people need a diagnosis of SOME kind, because GUESSING or WONDERING wth is going on can drive a person nuts, especially when it's gone on too long.

Geez.... Shut up brain! :/

First Labs Post-Prednisone & Azathioprine

So looks like another medication is being added to the list--Lasix, a water pill.  This is needed to reduce the amount of EXCESSIVE water retention caused by the Prednisone.  I'm really glad to know about this addition, though it's going to be rough heading to the bathroom constantly.  Oh... but I'm SO very glad to do so!  You've NO idea.  But there is other news as well...

Liver enzymes: At the start my liver enzymes (which is NOT a liver function test) were elevated some 7-8 times that of normal, depending on which end of normal you do the math from.  Considered by the doctors I saw these were considered "significantly elevated."  Some people have way more elevation than that, but apparently research says that the actual numbers don't always indicate prognosis or how significant the disease is at the time of diagnosis.  But today, thankfully, I'm told that the one enzyme that is still elevated is only elevated by a little now and "Much better than where it was before." YAY!!  That's good news!

While I have to wait to get the labs actually in my hand to SEE them, I was also told that some tests came back showing mild muscle inflammation.  Not sure which test that was, but it doesn't really surprise me.  I have labs rechecked next Monday also in order to make sure the Azathioprine is helping, and not hurting things.

Good news, right!? :D  And hey, as long as those numbers go down and into the normal range, I can deal with some side effects from Azathioprine.  I mean, as we go along this journey the prednisone will be tapered... and THAT is DEFINITELY a good thing!  Not treating AIH means possible progression to cirrhosis.  Only thing statistics say about this that I don't like much is that 80% of people who go OFF medication to control AIH have a flare up within 1-2 years, and it often comes with the nasty addition of fibrosis or cirrhosis.  Yeah, I'm okay with medication inconveniences over death, thank you. ;)

So what's the deal with muscle inflammation?  I've no idea.  Guess that may be addressed next... we'll see.

How's that for some good news? :D

Dammit... tick tock, tick tock, tick tock...

Waiting again for a return call from the liver specialist's office.  Still waiting on lab results that were taken to assess how well the prednisone is working to bring liver enzymes into the normal range, assess where I am in the path to remission, to see if and when the dosage of Azathioprine should be increased as the prednisone is decreased.  No answers today as it's his day for surgeries and procedures at the hospital.  I guess I will wait another day.

The unresolved issue with insurance not paying for a much-needed antibiotic is really wreaking havoc on my life right now.  Nothing I've been given so far has helped, because the problem requires two antibiotics in order to cure the issue.  So why on earth is it that it takes over a month of asking, requests, etc for a good insurance company to give approval?  Why do they fight this knowing that ensuing problems caused by NOT taking care of this is going to cost much more?  WHAT is their thinking?  Well, from all I've gathered, from all i've learned, this is due to Obamacare.

Lovely.

But it's just a day, just another day.  I'll deal with it, be it BEYOND uncomfortable (miserable really), and wait another day for hope, answers, anything at all that tells me someone is going to help.  One thing I won't be doing is holding my breath, that's for sure.

I'm trying my best to not allow this to completely take me down.  I'm winning that battle so far, but I don't know how much longer I can do that.  I'm really tired of waiting.. and waiting.. and waiting.. and waiting.  You've no idea how much havoc this can wreak on one's body by ignoring it for this long.  NOT the doctor's fault... it's the insurance company.  And I have a really good insurance plan.  Imagine how it must be for those who have lower tiered plans!

Just another day waiting.

I guess I can do this one more day.

I think.

Fun Stuff and the Continued Muddle of Health

So, on a high note today.. I got an Apple Watch.  Pretty cool little gadget, and I really needed a watch.  Made perfect sense.  Came in a HUGE box, so (like my iPhone 6 Plus) I've dubbed it my "WatchASaurus."  Opted for the rose metal sport watch with the gray band and really like it.  Chose the larger face to make things easier to work with.  I'm happy with my choice, even if I did get startled terribly when it finished syncing and vibrated on my wrist. lol  Small price to pay, right?

I guess the next step is to make sure I have the Apple Watch app on my iPhone... apparently that's needed.  So that's the good stuff so far today.

The rest of my day--pretty mundane, and I believe it's due to the drop in prednisone.  See, I told you this stuff shouldn't be used for just any ole inflammation problem.  The sides (side effects) are terrible, but if it gets the job done then so be it.  Todays lovely side-effect addition: Depression.  Seriously.  WTF...

It basically just comes down to dancing with the devil and hoping you don't trip.  Prednisone and Eliquis (blood thinner) is a bad combo, but one that can't be avoided.  It's just all part of the package, and I have to learn to be watchful and careful while on Pred.

Strictly speaking, I know some of what I'm up against.  What I dislike at the moment is dealing with it alone, because I'm seriously confused and remaining a bit in denial in some ways.  Without anyone to really talk to about it, I'm just floundering about trying to find my way.

Really wish T would just step out of the way, because he isn't going to get his shit together anytime soon, or at all.  I've gotten mostly past the point of caring, though.  If I'm on my own, he's on his own as well.  He doesn't LIKE that idea, but it's true nonetheless.  It's time, still time, absolutely time for me to take care of myself, put myself first.. for the very first time in my life.

Changing the Dialogue to "Yes, it's okay to take care of ME."

I don't feel like writing another entry.  My body hurts, and putting AIH into remission is going to be a bitch.  But I have to allow myself that time, you know, to heal, to mend, to just be okay about how this needs to evolve.  It isn't comfortable saying I'm going to take care of myself.  I've spent my life as a mom, so caretaker is really the only title I ever knew.  As a child, my emotionally absent mom who preferred psychological torture and punishment, made it so even then I knew deep down that all I had was me.  Somehow, I made it.  Somehow that child survived.  And somehow.. I will continue to do so.

I'm fighting like hell not to lay down, to give in to the discomfort and pain, fatigue and sluggishness that began returning with the first taper-down of prednisone.  I'm fighting that, because if I don't... it will win.  And I can't have that.  So what I'm doing now is continuing to reassess where I am and planning a strategy that I know will help me.  Some of this I can do on my own, and some of this I will need help to keep that forward momentum.  T would be instrumental in that IF he were plugged in, here in the present, and not mired in doing the bare minimum required in life overall just to get by.  How can someone that unmotivated be so successful financially?  Don't know.  What I do know is that I'm mostly on my own, and that means all focus for healing must be spent aimed in the right direction.

Remission is the goal.  Feeling GOOD, even GREAT is the goal.  Being happy, healthy, inspired and excited about my life... THAT is a goal.  MY goals.  No matter if I have the actual stamina at the moment to make it all happen at once, but I can't give up.  What energy I have will now be directed solely at taking care of me.  I have to.  My survival depends on it.

I know what I need.  I've always known what I need.  There have been a couple of people in my life who decided THEY were experts on what I need.  And they were and ARE completely WRONG.  I knew this then, and I know this now.  My approach now is to listen to myself, because no one is an expert on me.. except me.

T has no idea what I need.  He's not horrible, mean, nor hateful (well, except on a couple of occasions when he chose to be an asshole and regretted it).  He is, in some ways, worse than 'mean.'  To me, indifference towards another person, not SEEING them, HEARING them, and unplugging because you're lazy is far worse in many ways.  But I'm not going to focus overly on that, because my point here is that he is of no help.  I have ME.

I've had to say it out loud, my truth.  I've had to say the words that make it real so I can take every measure to improve my chances and LIVE.

I have an autoimmune disease.  The one I have attacks my liver, specifically, but wreaks havoc throughout my entire body, leaving much damage in its wake.  I have Autoimmune Hepatitis, and I will have this disease for the rest of my life.  I don't have all  of the answers.  I don't know my specific odds just yet.  It's too soon with treatment for me to know anything but what I feel and experience daily as I strive for remission.

How long will remission last? Unknown.

The odds are great that most with AIH will relapse within 12-24 months, and with a second (or multiple) relapses prognosis becomes more grim.  I know with a second relapse I will be placed on an immunosuppressant, and most likely for life.

The drug that helps me hurts me.  But it's a necessary evil, because the alternative is early mortality if this isn't treated quickly and appropriately.  This is an aggressive disease that requires aggressive treatment in most cases.

There is a chance, a good chance, that I will never ever feel 100% like myself again.  There will be good days and bad days, and I won't be able to predict which days will be which.

This disease can and often does cause secondary problems, such as pulmonary.  I have to accept the fact that this has already occurred.

I have portal hypertension, and though it's mild at this time, it points to the presence of liver damage. I will believe, until told otherwise, that this damage is mild.

I wasn't told I have fibrosis or cirrhosis.  I will accept that as confirmation that I don't have those problems.  Yes, I know that this 'don't ask' policy I've taken on is a little silly.  But I'm sure my doctor would've told me it were the case if I had either.

This inner dialogue is what I live with now.  My constant mantra as I taper down the prednisone has returned to: "I can do this!  I can do this!" as I go about my usual daily routines and chores.  I talk myself through everything.

I miss that first week on Prednisone, when I felt the pain subside, my energy return, and my thinking clear.  I don't know if that feeling of returning good health is something that will return.  I don't know much of anything at the moment.

I understand that what little information that is out there for this disease simply isn't enough to help me understand what's happening to me.  I'm confused and need answers.  But there simply isn't enough out there for me to glean any real understanding of this situation that has radically changed my life.

I'm told I have the "Type 2" variety, that mostly effects young women... but can happen to older women too.  Type 1 is rare enough, but Type 2 is even more rare, and often with a poorer prognosis as those patients, patients like me, often don't respond well to treatment protocols, have partial success, or quick and multiple relapses causing further liver damage.

I know diet doesn't help, it doesn't heal, it has no effect except in the case of salt intake and cirrhosis. I don't have cirrhosis, so I'm not sure how much salt will effect me if at all.  I can't turn to diet to fix this.  Nothing will fix this.  Treatment is management of the disease, as there is no cure.

I understand that NOT treating this disease brings early mortality, so I'm planning on sticking with the protocol, even if it does bring on board unpleasant side effects.  Weight gain, etc with Pred is a given.  Been there, done that, and one struggles terribly after coming off to take this corticosteroid weight gain off.  But.. I suppose choosing life and some weight gain at first is better than death.

So be it.

The dialogue in my life has changed.  My inner dialogue has changed with the circumstances, and I have to learn how to deal with T's insensitivity where I'm concerned.

...which is another entry for another time.

Autoimmune Hepatitis

It's been a BUSY week.  Finally moved into the new house, and still struggling to get everything in its place, organized, etc.  I'm worn to the bone, I have to admit.  Well, maybe a few miles past that, I believe.  Yeah, there's a reason for that.

So the liver biopsy results came back and I had to have a follow up to discuss them.  I already knew there were elevated portal pressures, but that's about it.  As it turns out, I have Autoimmune Hepatitis, a very rare AI disease.  It's a life-long disease, but it can be managed in most people.

First on board is the high doses of Prednisone (not one of my favorite drugs, I assure you), but it seems to be changing things quite a bit.  I'm NOWHERE near anything remotely NORMAL, but I can certainly tell the difference already.  I went from barely able to stand long enough to make something FAST to eat... to WAY overdoing things here at the house.  What's the comparison? We're talking a few minutes PRE-Pred to 8-9 hours POST-Pred!  Trust me, this is HUGE!

Symptoms: Dear God there are so many:

Crushing fatigue
Right upper-quadrant pain
Fluid in abdomen
Weakness
Insomnia
Appetite loss
Weight--up and down, but mostly up
Joint pain--SEVERE
Arthritic-like pain, swelling, and inflammation--SEVERE at times
Muscle pain--SEVERE at times
Back pain--SEVERE most of the time
GI upset--Don't even get me started on that one
Peripheral Neuropathy
Itchy skin
Can't think clearly
...and more.

What causes it?  They're not entirely sure, just like most AI diseases.  Nothing I could have done in my life would have prevented this.

Risks:

Development of fibrosis, cirrhosis, and liver failure requiring transplant.  IF managed properly, progression to those unhappy outcomes can be slowed.  Other risks can be anything from Osteoporosis to inability to clot blood properly, leading to possible internal bleeding.

This particular disease can cause issues with the lungs as well, which MAY explain the unexplainable damage to my lungs.  Maybe it will be connected and not some other insidious thing I have to deal with as well.

The above isn't all the risks, but it's the most common.

Treatment:

First line of treatment is Prednisone, with or without the addition of an immunosuppressant.  In my case, my hepatologist has decided to begin with Pred.  If this course of treatment brings it into remission, then maybe the second drug won't have to be added.  However, if the disease flares again, that's when the immunosuppressants are added.

Prognosis:

This question isn't as easy to answer, because everyone is different and far too many variables go into assessing prognosis.  Some factors involved include abstaining from drinking, or not drinking more than the maximum the Hepatologist says is allowed, not taking OTC or Rx pain medications that can stress the liver: Acetaminophen and NSAIDS are the main two to avoid.  Having a healthy diet (which is often tailored to the situation, so I've *read*).  You basically need to take good care of yourself and avoid anything that can stress or harm the liver.

Life expectancy depends on the above, and a small dose of luck.  Some people can keep their AIH in remission for quite some time, others may be resistant to the medications they take to control and/or bring the disease into remission.

Remission:

Remission is the goal, as there is no cure at this time.  I'm not sure why I stand at this point because I've only just learned I have this and already have elevated portal pressures, aka Portal Hypertension.

So, here I am, still trying to wrap my mind around the idea that I have this.

The journey begins.

Still fighting to find my bearings

Something isn't right.  "Something" hasn't felt right for a few years now, maybe since about 2012, maybe 2011.  When things break, the pieces often remain, cutting their way through the soft fabric of life.  I guess I'm realizing I was more malleable than first thought, and the strong, restraining hands of  someone I loved reshaped parts of me that I actually liked.  Not to say I'm not still in here--because I absolutely am.  Such is the part of me that fights like hell to keep me safe, protected from all the hurtful, jagged edges of what's left.  Because.. the parts of me that didn't mold to the whims and needs and demands of that person...shattered.  Where am I?

The barriers I've built around me have protected me in some ways, and they've also crushed me in others; Vulnerability is no longer something I give into.  Instead, I strive to be the strongest I've ever been, though it's not a comfortable posture for me.  So what of the discomfort, then?  It is what it is and it will remain because of my will.  It is MY will that allows or disallows what happens to me as a person, a woman, a friend, a lover, a mom... every facet that makes me who I am is ultimately at the mercy of MY will and no other but God's.  His will is ultimate, but my will is His gift to me.  And no, I'm not going off on a religious tangent.  I'm simply taking responsibility for the damage I allowed others to do to me, and also for my inability to completely regain control of the clanging thought-machine inside me that clatters on and on.

It's just one of those days sitting in the midst of one of those weeks in what I now call one of those lives...

I'm dealing with illness because of the unrest and DIS-ease I've felt for so long, with the majority of it beginning when I blindly walked into a situation I didn't want to recognize for what it actually was.  I fell headlong right into the abyss and hit bottom.  Dammit, but I should have had my own back.  I have a good understanding of this NOW and am being diligent, watchful.  And yet, contemplating what my life is now in the wake of the experiences isn't exactly pretty.  Not at all.

Nothing is improving.  My health continues to worsen, and all the tests I've gone through over the past few weeks, all of the tests I'm going through THIS week will tell me where I am in all of this.  While it may not be the best course of action on my part I will wait for the doctors to render their final diagnosis and allow them to push me in the direction I need to go.  I'm so bogged down in near-defeat that I can't seem to propel myself in the right direction.

I will let the current take me.

Break out the Fava beans and Chianti...

Ok.  Ok.  Just kidding.  First of all, the pic of the flowers (yes, enhanced for artistic effect) were given to me by T yesterday.  I have to admit I was very surprised, but he said he knew I wasn't feeling good and wanted to do something for me to make me feel a little better.  The gesture is incredibly sweet, and it comes on the heels of some news.

As you may know from reading other posts, and/or my other blogs, I had a transjugular biopsy on my liver a couple of days ago.  Yesterday I received a call from my GI/liver specialist's office telling me he wants me to have an ultrasound on my liver on Monday to double-check some things because they found elevated portal pressures (hepatic portal vein).  I told T I had an ultrasound scheduled on Monday (also have another appt with my hematologist at the same hospital) and why.  I guess maybe he's getting the idea now that I'm not making up symptoms and that I really do feel this bad.

This is the most difficult about having chronic illness, or just an illness that doesn't present with something you can see clearly with your eyes.  Many times there are signs and clues, such as deepening dark circles under and around the eyes--to the point where it looks like someone hit you in the face, maybe the person's eyes look 'duller' and less bright and 'open,' or maybe it's a number of things that, had you not seen the person for a while would startle you.  Too many people suffer with different illnesses and are often not believed, shrugged off, and worse... because they can't SEE everything going on.  Even with a diagnosis it seems that, unless it's cancer, etc., no one believes that you can be extremely sick and still be able to stand.. at all.  I simply don't get this brand of compassionless thinking.

I'm not going to focus on people who lack compassion or the ability to try and understand what they've not experienced, so I will leave my thoughts on the matter as-is.  Right now my focus, my goal is just to continue to wait for test results in order to get answers, as well as solutions.

Staying in a peaceful mindset is going to take a bit of work today.  I'll keep trying just the same.

PART 1: I wasn't supposed to be... awake.

But I was... the entire time during the procedure.  It's not exactly the nightmare they make movies and write books about, but it more than surprised me, and it most DEFINITELY surprised the radiologist performing the procedure.  Really.  I was supposed to be asleep.

I arrived at the hospital yesterday morning to have a liver biopsy done.  I'd already researched enough to know what to expect, talked to people in the forum I belonged to to hear their experiences.  I wasn't expecting to be this surprised.  Oh, but I was.. and in more ways than one.

When the radiologist came in with another doctor to talk to me about the procedure, what to expect, how it will work, etc., he mentioned HOW they were going to access my liver.  Now, this is where the first surprise came in...

He began telling me that Dr. S wants things done a particular way and that the procedure I'm having is "tricky" because it involves entering the jugular vein and inserting a wire that will be able to reach the portal vein in the liver in order to check the pressure there.  He began telling me the risks to the heart and lung and liver.  I listened, but I was confused because I thought I was to be there for just the biopsy and didn't know anything at all about checking the portal pressure.  Skipping ahead...

We talked a little about the procedure, and the radiologist reassured me that Dr. S was very specific about what he wanted done.  I asked if anything bad had ever happened during the procedure with anyone he's done it on and he said that the only thing that has happened in his (long) career was one patient's heart went out of rhythm and wouldn't go back in, so they had to stop the procedure, send him to the cath lab to shock his heart back into normal sinus rhythm.  Ok.  Only one event.  So I said..  "Ok.  Let's do this."

The Dr. assisting the radiologist explained about the two medication that I'd be given, that I wouldn't be put completely under but would be unaware of what's going on and wouldn't feel anything, except perhaps the lidocaine they would use on my neck where they would make the tiny incision to access the jugular.  He said I would just 'sleep' through the procedure and would not have any recollection of it at all once it's done and I'm awake.  I was familiar with this because I'd had a heart cath in 2013, and ablations on my heart in 2014... so that twilight sleep I know about and have experienced.

...Off to the OR we went.

Once on the table the anesthesiologist told me she was giving me the first dose of sedation, and that it would be done in stages until they're ready to begin the procedure, then she added "The lidocaine may bring you out of this for a moment because it stings, but it will be brief."  By the time they were ready to begin I was loopy as hell, but I was awake.  One last dose was given, because I was awake... and I think I nodded off for a minute or two.  Then I was awake again.

Awake, aware of my surroundings enough to hold a conversation.

I heard the radiologist say he was administering the lidocaine.  Oh yeah---I definitely felt that.  But it quickly receded and I felt nothing in that area.

I felt the cath wedge go into my jugular, and I continued to feel it go down my chest, felt something strange with my right lung, felt it proceed past my heart--to which my heart fluttered a little--and then nothing... for now.

I heard every word said, heard the radiologist talking to the doctor that was there, even remember hearing him calling out the numbers once he began reading the wedged pressure and free-flowing pressure.  I remember the numbers exactly.

A couple of times the anesthesiologist raised the blue drape over my face to look at me, and I returned with a smile.  Then... they changed Caths and went back in to take the biopsy samples...

The first "snap!" I heard had only a little discomfort with it.  The second "Snap" was a bit more painful and I said.. "Oh, that one smarts!"  This was the first time the radiologist knew I was awake.

"How much did you give her?" I heard him ask the anesthesiologist.  "She's awake."  She responded with the dosage she'd given me, and he said.. "Wow.  I would be on a vent if I'd had that much."  He has a smile in his voice, so I know he was just joking a bit. Plus I was familiar with this radiologist as he'd done the biopsy on my thyroid nodule a year ago.  He's good guy, a really skilled radiologist.

So the third "Snap" I heard came with significant cramping across the entire front of my ribcage, where the liver is.  And oh yeah.. THAT one definitely hurt.  And folks, I have a high pain tolerance for stuff like this, having kids, etc.  So when I say it hurt.. I mean it.

Once they were finished they removed the blue drape and one of the nurses told me she was applying pressure to the little hole where they'd entered the jugular.  She told me there may be a bit of a bruise there and that she was sorry if the pressure she was applying hurt.  It really wasn't that bad, and I told her so.

As I lay there with pressure being applied to my neck the anesthesiologist came over and apologized that I felt pain and explained she wasn't sure why I remained awake.  I assured her that it was okay and that the pain I did feel didn't last a long time, that I was okay.  They returned me to recovery.

I told my nurse there what happened, and she looked at me as if I'd grown a third eye. lol  The other nurses turned around (my bed was right next to the little desk where all the nurses sat) and gave me a look of horror. haha   Hey, no events... so to me this was a good procedure.

I'll have the results in a few days, I think.  But I don't believe I have portal hypertension at all.  I believe Dr. S just wanted to make sure due to some of the symptoms I was having.  As for the presence of any cirrhosis... I don't believe that's the case either, or Dr. S would've seen the prominent veins in my esophagus etc. when he did the EGD a couple of months ago.  What I DO expect is to see  if NASH is actually present and to what extent, and if there is any fibrosis or not.  I fully expect the outcome to be okay, with perhaps  NAFLD or maybe NASH if inflammation is present.

Reminder: My other blogs

A couple of you have sent me messages on FaceBook regarding a few issues I promised to talk about or update about.  I have.  You may have just missed where I spoke about them.  This was the problem I mentioned previously about keeping all 3 of my blogs.  But you guys begged me to keep them all, so I did. :)

So as a reminder, and to either clear up confusion or create more, here are the links to my other blogs.  You can always find them in the menu section (side bar) under Alter Ego.  Also, in case you've forgotten, mostly the separate blogs are for focus, so that all topics don't all end up getting blended together in one place.

Hope this helps...

Where Fireflies Dream

http://gothicwell.blogspot.com

All Things Ephemeral

http://autumnwhisperstome.blogspot.com

Boo’s Juicy Bits

http://boosjuicybits.blogspot.com

Each blog is designed for a specific purpose and focus, true, but all of them overlap in many ways.  I may end up burning myself out posting on one, and may not get a chance to post an entry on the others the same day, or at the same time.  There will be times, in other words, where it may appear as if I've not made an entry...when I actually have but on a different blog.

A brief explanation of the blogs may help a little bit.  Just remember that even if a topic/blog may not interest you, I may have spilled everything there and not posted elsewhere.

Where Fireflies Dream was intended to be a place for dreams, wishes, hopes, plans, goals, etc.  But it's evolved over time into something bigger than that.  That's about all I can do to explain this blog.  There are days when the focus is implied, and days when I'm speaking in contrast to what the focus actually is.

All Things Ephemeral is the original blog, the one I built and posted on about anything and everything you could possibly imagine.  I used to give quite a bit of details, which often meant deleting entries after a time that said too much.  Hence the name "All Things Ephemeral."  Now, I've not recently unloaded in detail there, so most of the entries remain intact.

NOTE:  It must be said that when I do post in great detail there the post may not remain for long.  So if you make it a habit of reading posts in this blog you probably won't miss anything.  If you wait too long.. the entry may be deleted.

Boo's Juicy Bits:  Now this blog is mainly about health and diet in the context of flirtatious fun.  With health issues wreaking havoc, however, it's changed the entries for the most part.  But as things change and I get on top of things... it will return to its original and flirty content.  I'm not about faking things to entertain, so you guys will know pretty much where I am by what you read there.

Again, ALL of these blogs intersect in some way.  They all have a purpose, to which I've tried to keep true on, but they still cross over one another in ways.

Okay.  Enough of this.  Again, you can find the links to the Alter Ego blogs in the bar to the side of each blog.

Well... this liquid diet is kicking my ass today, so I'm off here for now.

*waves*

Liquid diet and decisions, decisions, decisions

Today is the day before my EGD and colonoscopy (just had one last year), and as anyone who's gone though a colonoscopy knows... the day before, the liquid diet, and especially the prep... is absolutely awful.  So that's what I get to deal with today.  It is what it is, and it's only until tomorrow afternoon.

I honestly can't remember if I even spoke about it here, but I have to have the EGD and colonoscopy due to nonalcoholic steatohepatitis and my ferritin being pretty low.  Normally with liver issues the ferritin goes UP.  In this case the Dr suspects a bleeding situation, such as peptic or duodenal ulcer, the latter being the highest suspicion.  Either way, today isn't going to be fun or easy.  C'est la vie.

On with the liquid diet consisting of mostly clear Gatorade.  I also have a few other things on the list that I'm allowed, but I have to drink 8oz of Gatorade no matter what, and then begin drinking the prep solution (mixed with clear Gatorade) at 4pm, and begin the doses of dulcolax at 3pm and again at 5pm.  Why am I telling you guys this?... so if you ever have to go through this, you'll will have had a heads-up as to what you'll possibly be facing.  Trust me, I wish I'd known before my first one, because I would have INSISTED on another prep than the old kind.  It's horrendous, and I flat refuse to EVER drink that stuff again.  Why the hell doctors still use that garbage is beyond me, especially when there are far kinder preps out there at their disposal.  Just saying.

Diet---decions.  I'm striving toward a Vegan diet and have been transitioning from an ovo-lacto vegetarian diet.  Not eating meat is easy for me--of which I've explained in the past.  Meat isn't that important to me, and I don't crave it like some people do.  And when I have eaten it in the past I usually felt sluggish afterwards.  Fish, however, didn't have that effect on me.  Still, giving up meat was simple.  My problem now is my health issues and the change in diet that's on the horizon once we get down to the bottom of things with the low ferritin, liver issues, etc.  Oh, and finding out the hard way that there was hidden dairy in something.  I will spare you the horrors I go through if that happens.  But anyway....

Much is unknown at the moment on how to proceed from here.  So many ill effects from medications I've taken in the past, including weight gain and completely f'ing up my metabolism to the point where I'm finding it difficult to lose.  *sigh*  Still, aside from that I do wonder what I will be asked to do.

Will the doctor tell me I have to eat meat?... will I have to go Paleo?  I know low-carb is one way to fight what's going on with the liver, but... low-carb and Vegan/Vegetarian do not mix!!  All of what I've read people are on a low-carb, higher fat and protein diet.. such as South Beach.  I really don't know what I'll be told, but I do know that if I really am dealing with NASH... I'm at a huge risk of fibrosis...then cirrhosis.  Though rarely do people who have NASH reach that stage, it is still a risk.  Nothing like those who drink, however.  I'm at least quite fortunate there.

So considering the possibility of having to deal with adding animal products back into my diet I'm left feeling a bit lost and uncertain.  I don't think I can do it, even if the doctor says it's necessary.

There has to be a way for me to maintain my chosen lifestyle and achieve the results I need....

Really?

It's been a confusing and unsettling series of events over the past several months.  Health issues overlapping relationship issues are taking tolls on me that I'm having difficulty keeping up with.  Damage control has become the name of the game each and every day, and I must say...this is NOT how 'life' is meant to be lived.  This.. is not living at all.

Living life.  Isn't this supposed to be something that comes naturally?  I mean, as ridiculous as it is to even say out loud, I still feel like this is the big question of the day.  After posting in Where Fireflies Dream I feel like I got some debris out of the way and am able to really touch on what it is I need.  Not that I didn't know what those things were, because I did... do.  It's just that I wouldn't allow myself to really think about those things for more than a few seconds, because dwelling on them (imho) didn't seem like the productive thing to do under the circumstances.  Know what I mean?

Stating the obvious to affect change largely doesn't work.  Well, actually... I've found it doesn't work at all.  So what then?  What now?  How do I proceed to correct the imbalance in my life so I can FEEL ALIVE, have an actual life, and also breathe.. thrive.. and reignite the vibrant flame that once burned inside me?  And just how do I go about doing this when I feel like shit all of the time?

Tomorrow I see the GI specialist again to figure out, I assume, what to do about my unhappy liver.  I don't drink, smoke, and I don't take but the most necessary medications.  And... I avoid Tylenol now like the plague.  I don't know what he will say tomorrow.  I have no idea if he still wants to proceed with a liver biopsy--something that is avoided if possible.

Damn.  I'm too tired to continue here.  Perhaps I'll come back a bit later.  WTF.  *sigh*

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.....

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.....

Holding onto just being me...

...with no excuses.

I've come to a crossroads where my f'd up health and maintaining balance in my life intersect in such a way that I'm left with making a choice between hanging on fiercely to who I am in the midst of life-changing circumstances.  Sounds like an easy choice, doesn't it?

After posting in Where Fireflies Dream I feel like the remnants of what is left to purge are like shards of broken glass.  In some ways I have to be very careful exposing all of my feelings, thoughts, and so forth.  And I don't believe for a minute that I have to explain why this is.  So I won't.  What I will say is that talking about problems, rather than burying them, is far more healthy.  So if anyone isn't in the mood to listen--now is your chance to skedaddle! ;)

I've discovered that the Montgomery, AL area.. and surrounding areas, is NOT the best place to be when you need great medical care.  But I was blessed in finding a fabulous Dr... a D.O., which was confirmed by complete strangers this past Friday... who happened to overhear a conversation between Tom and I.  These two people were pharmaceutical reps who were very familiar with local doctors.  In fact, both of them use my Dr., so.. that was a definite great thing to hear.   They also offered a lot of advice with where to go to get help with this ridiculous situation regarding my health.

Nothing is ever chance.

I also discovered that the guy I'm with, while a total sweetheart, is not really in the now or connected with what's going on with me.  This causes huge problems because I'm forced to hold back a lot of information from him, and to even keep a distance between him and what's going on with me.  I withhold information, which he knows I do and why, because trying to talk to him about this..my health..seems to just fall on deaf ears.  So be it.  I reach out to one or two people when I need to--at their offer and, often, their insistence.  But this has done great damage to my relationship.  And I know all to well where this eventually leads---my complete and total disconnection from that person. And yes, I've talked with him at great length about this.  He gets upset and does a lot of promising about things, but... nothing follows those promises.  So I've told him to not make promises anymore.  Don't say "I'm sorry" anymore.  He says he understands why.  And still... nothing changes.

So here I am holding onto being me...with everything I have.  I can't waste anymore precious energy on those things that continue to wreak havoc with my health and my life.  Tom understands, he says, and he is steadfast and not uncertain about what he wants.  But he doesn't do anything to keep me wanting this.  And it is VERY hard to keep wanting this by just telling myself that I do.  Make sense? I have to agree that on many levels it makes no sense whatsoever.  But it is what it is, right?

Step one: Heal.  Step two: Continue to heal.  Step three: Allow healing while maintaining my spirit, joy, happiness, and every aspect of who I am.  Period.  Step four: Keeping doing the first three steps until I'm well.

While a larger part of me has once again retreated into isolation, that small yet significant other part of me is a wide open door.  I suppose in some ways it's a lot like a lock and key...

For now I'll focus on a couple of important things like making decisions regarding the rest of the house renovations, which has turned into something major. lol  That's okay.  The house's resell value down the road, should we need it, is going to be awesome.  Location and view... and all these updates.. oh yeah, it's resell value is really going to improve significantly.

The other focus is my health--finding out why my liver values are significantly out of whack, what all the other abnormal ranges mean, and finding a doctor willing to put it all together.  A GP can only do so much, and mine has done a lot and is working with me to get to the bottom of things.  His focus at the moment is the liver issue(s)... serious enough to get everyone's attention and eclipsing anything else that's going on.

What I will do...

Listen to music because it lifts me.
Read books or articles that lift, lighten and inspire me.
Find things that make me laugh.
Keep looking ahead in short distances.
Learn to relax, REALLY relax.
Enjoy what I like, what brings me joy.
Avoid sharing my feelings and thoughts, wishes and desires with anyone who makes me feel bad.

....and much more.

I will do what I can do and keep doing it.  It's my life, so I have to do what I must to protect my health, my spirit, my joy, my happiness... and who I am.

Off the grid and minding the muddle

Life's details are vast and varied these days.  Keeping up is an act of will, perseverance, and a whole lot like everyday magic, when you think about it.  How crowded and hurried the days are, and yet how brazenly slow.

Renovations continue in a less frenzied state, though they do have their moments of speeding up so I can barely keep pace.  Nature of the beast, I suppose.  But at least things are moving along.  Still so much to do.  Not far from done, it's just that once you get one thing updated, the things near it look... well, you know.  At some point you have to stop and reel yourself in before you end up rebuilding your house! ;)  It's all good.  Things are nearing the finish line now.

On the matter of health I'm attempting the act of patiently waiting to see specialists with regards to the lung nodule and.. whatever is going on with my liver...muscles...or whatever it is that's throwing my liver enzymes, etc. out of whack.  Things are highly elevated that shouldn't be, another is dropping that SHOULD NOT be, back in vitamin D defiency again, sliding back into anemia again, and... more.

It was really shocking to get pages and pages of blood work in my hands and see just how much had flown out of the normal range.

Now I await the 2nd pulmonologist appointment, and the GI/Hepatologist appointment, a follow up with my rheumatologist with another discussion about all the labs that are out of whack.  But the good news is that I finally found a good primary care doctor, a DO! :D  THAT, I am very happy about.  Only one visit with him, but he has good reviews and... I like him so far.

Well, time to sign off.  But.. I will try my best to post more often.  There's a lot of abdominal pain, and referred pain.. so I may not be here every single day.  But I will try my best. :)

Till then....  Listen to this with me... I LOVE this song.. sexy, weird, crazy, naughty... and sounds sooooooo good in my car! ;)  Kind of weird for a vegan to post, huh? lol