Predicting Life

There's simply no way to predict how I'm going to feel from one day to the next.  Planning anything is out of the question and has been for at least a year now.  Life, for me, is measured by the information my body gives me when I first wake up, and mostly after I've consumed a good deal of coffee.  From the onset, once my feet hit the floor in the morning, I'm given a small hint, just one small message that tells me everything I need to know about how the rest of the day will progress (or not as the case may be).  The message is clear, but I honestly wish it weren't.

Quality of life isn't something I have right now, I have to be honest about this.  Some days are better than others, true, but my quality of life has diminished considerably.  If only I could feel the way I felt on that first week of prednisone---closest thing to 'normal' I've felt in years!  But as fate would have it, there's simply too much going on with my health for one simple pill, or even two, to put me in a healthy, strong place.

So I picked up copies of my labs yesterday and learned a few things.  For starters, what I understood to be increased PORTAL vein pressures was actually CENTRAL venous pressure.  NOT having portal hypertension is VERY GOOD news!  And on the flip-side, that CENTRAL venous pressure increase is extremely bad as it could very well be a result of my heart issues, lung issues, or both.  There's just too much overlapping findings here.

Liver enzymes are creeping towards normal, slowly, which is great!
Aldolase is now elevated again.
MCV is elevated again.
BUN/Creatinine ratio is elevated.
Calcium is low.

To the last, I don't understand at all.  I take calcium supplements, so I've no idea why my calcium is low now, except that it's perhaps the prednisone.  Still, supplements are supposed to keep that from happening.

Aldolase is another puzzling bit of information because it's related to muscle and/or liver damage.  But which?  My guess is that the doctor could be right in that there's another issue that has yet to be pinpointed and nailed down with a diagnosis---possibly myositis.  The muscle weakness and severe lower back pain and cramping when I stand up/walk could be a result of muscle inflammation.  But why isn't the prednisone making me stronger like it did in that first week?

One thing for sure is that there are a LOT of really awful symptoms that have gone and not returned since starting the prednisone.  I'm stronger in some ways, and weaker in others (depending on which day it is).  The one constant is that I still don't feel well, even if I do feel better.  It's at least something, right?  I'll take what I can get, but I do need my life back.

I've no idea what will happen next, what will be addressed next, or how long it's going to take to feel like a normal human being again.  My arms are so tired right now that I have to lean my forearms on the laptop as I type, because there simply isn't any other way I could do it.  Yes, it's a very bad day today, and I long to crawl back into bed and just wrap myself in my favorite microfiber fleece blanket.  Oh, you've no idea how much I want to do that very thing.

Even so, I'm up, awake, and I can't allow myself to fall into that trap of laying down every time I don't feel good. Hell, if I did that I'd never get up!  Still I have hope that with everything going on that someone will tell me what all I'm dealing with here.  My blood work will be tested again on Monday, and MAYBE there will be even more improvement with my liver enzymes, and MAYBE with those results, which should come back about a week later, more investigations as to what's still occurring will begin.  I know, however, that despite it all I'm told the liver issue is the most important right now, the most critical.  And I get that.  I really do.  But I still need to know if there's something else going on here, or if the AIH is actually messing everything else up.

And I definitely need to find out what the deal is with the central venous pressure, because that appears to be directly related to heart issues, and possibly lung issues as well.

I'm so tired.  So very tired.  Just so very tired.

Whatever the Hell That Means

Normal.  No idea what that means anymore.  Every day something changes, and I'm left completely taken aback by the sheer ridiculousness of it all.  But is it really ridiculous, or is it just that I'm finding I can't sort through the mess on my own and come to any conclusions as to how I'm going to deal with this ever-changing situation with my health?  I've gone back and forth so many times with this and have yet to come up with anything that makes any sense at all.  Maybe it's time I stop trying to make sense of what this is and focus on living with what I'm dealt with for the time being.  And maybe, just maybe, I need my head examined. ;p Okay, so that's always a given, isn't it?

My focus is lost as well, and that's to be expected I suppose.  Being sick, really sick isn't something that inspires keen insight and razor-sharp focus, now does it?  I get that, and I accept that as my reality at the moment. Still, where do I go from here?

I'm not sure who's reading all blogs, some of my blogs, or just one... but I've been trying to sort through this newness from every angle, and as you can imagine.. I'm mostly failing.  New symptoms jumped on board today, others have returned from my anemic past, and I'm left sitting here wondering who I can, if anyone, to ask for a re-test of my ferritin levels.  Things is, I'm just too damn tired, too sick... to want to deal with leaving messages for nurses and waiting for a return phone call to state my case.

Nausea and a complete absence of an appetite; a huge change from yesterday.

Prednisone is known for messing with blood sugar, known for massive water retention, and a plethora of other undesirable side effects.  They're necessary evils for those who have to take it to avoid potentially life-threatening complications of various diseases.  In my case, I'm using it to get my body in remission from autoimmune hepatitis, something that will destroy my liver if I leave it untreated.  I accept what must be done, of course.  In the meantime, up until today I've had to fight off relentless hunger, which is a common side effect of Pred.  Today.. is quite a different story altogether...

I noticed a few days ago that my taste has changed, and while at first it was only slightly noticeable, today a wave of nausea hit me and I realized my hunger was absolutely and completely GONE.  In fact, the thought of food makes me sick to my stomach.  This is a major turnaround and one I'm not quite sure what to do with.  And yesterday, my tongue felt sore... as it does today, and with that soreness is an almost numbness.  What gives?

No answers yet.  But I'm starting to wonder if the prednisone has already begun messing with my blood sugar in a major way.  I'm choosing not to think that, but instead.. I'm thinking maybe the anemia is returning.  I don't know WHAT the hell is going on, but I can tell you I don't like it one single bit.

So now what?

I have absolutely NO idea.

I hate freckled bananas

I mean, they look like they've lost their will to live.  And the really brown ones, that's just overt depression.  The key to helping them is to give them a new reason to live; you know, like.. banana bread.

Now what?

Post-IV iron infusion and feeling worse than ever.  I'm told, and I've read, that this is actually normal. Great.  But then there was the appointment with my new cardiologist yesterday, and that is yet another topic of confusion, in a sense.  I mean, all this stuff is really wearing me out, and every time I walk in to a doctor's office thinking that a, b, or c will finally be understood and resolved, something else comes along behind it.  All I can think now is.. "Now what?"

....I will get to the more personal stuff in a bit.

First is my BP creeping up (no idea why).  Right before my iron infusion it was 155/82, and at the cardiologist's office it was at 179/81.  Wow.  So, naturally, my cardiologist (whom I will refer to now as Dr. W.) brought that up straight away.  Back on a beta blocker I go... yay... NOT!  Those things make me feel terrible.  I'm not sure my BP is consistently high enough to warrant that, but we'll see.  left her a message bringing up the fact that the nurse who took my BP yesterday pumped the cuff up SO tightly that my entire body tensed..and I squeezed my eyes shut.  Look, I've had 3 children WITHOUT any pain medication, so when I say something hurt.. I'm not exaggerating.

The other issue is with regards to the Grade II Diastolic Dysfunction.  I've been scheduled for a nuclear stress test on the 29th.  This is going to be a 6 hour ordeal, but I've been through this before (2013).  The last one landed me in the OR to get a heart cath. This time there shouldn't be any arrhythmias because of the ablations I had in 2014 for Afib, SVT, and Atrial Flutter.  But, I'm assuming she wants to check for functionality with regards to the DD (diastolic dysfunction).  I was told not to exercise until after the stress test.

Echo done on my left arm yesterday to investigate the swelling that's been occurring since 2013; ruling out venous issues such as a clot.

On a more personal level...

Mr. Indifference is still mostly disconnected from everything outside of 6 inches past his own skin.  I've brought this to his attention many times, and all it does is elicit a lot of "I'm sorry" comments, infused with mild desperation.  Yes, I've pointed that out as well, reminding him that his being desperate for things to be better doesn't make things better.  In fact, it just makes things worse because he appears selfish when this happens.  I would really like to believe he's not selfish.  But, facts are facts.

Maybe I'm just too exhausted from that 2nd infusion.  I mean, the night of I crashed severely, and yesterday I was laid out on the sofa, pretty much useless and sleepy.  Yeah, who am I kidding, right?

I really don't know how I feel about this these days.  From time to time throughout the day I think I know, but then I breathe a few more breaths and I'm once again... unsure.

I'm just not going there...

Bated into an argument.  Who doesn't just LOVE that?  Just kidding.  NO ONE loves that...

Anemia, grade II diastolic dysfunction, low vitamin D, lung issues that my pulmonologist has only begun to get to the bottom of, increasing BP that we've yet to find a cause of, and I won't even begin to list the plethora of symptoms plaguing my days.  The very LAST thing I need is someone willing to turn just about anything into a debate.  And I don't mean that something is said and someone has to defend themselves in any way.  Nor am I referring to the act of simply stating a different opinion of something.  I'm talking about the ART of argument... for argument's sake.  I just don't understand this at all, and it's wrecking my peace of mind.  That has to stop.  Soon.

I don't even attempt to participate in this BS.  And while it's glaringly apparent that these types of arguments serve NO purpose at all, T insists on embarking on the contrary.

Word to the wise---develop discernment with regards to what is going on in these circumstances.  I've decided to pick my battles and completely ignore anything that harms me.  This will be MUCH easier once into the new house, as I will have my own office/room separate from the combined living areas that people can't really expect to avoid one another.  I intend on making that room my own personal sanctuary, a place to decompress.  The sunroom will become the same.  I intend to make sure those environments are conducive to good health, peace of mind, and a place where I can work on shaking off the negativity that surrounds the situation.  And yes, of course this absolutely possible.  Not only possible, but necessary!

My dreams of late point to this necessity for positive vibes, healing vibes, hopeful vibes.  My subconscious and conscious are in-sync and connecting the dots on a daily basis.  Moment by moment more information is revealed, leaving me to understand how extremely important it is to my health, my LIFE that I protect myself from these external and harmful interactions.  You'd think I would have learned about this by now, right?

Dreams.  They reveal much if we pay attention to the message.  I know mine reveal quite a bit.  It's a combination of the imagery, an almost-metaphor-like movie playing out in my mind as I sleep, revealing what actually IS.  Sometimes the message is grim.  But honestly, most of the time the message is one of HOPE.  I understand this on a deep level, despite the unsettling way it unfolds as I sit in the theater of my mind.

No matter if my first reaction is to just allow myself to be baffled by it all, dreams being what they are.  I still possess the capacity for allowing the message to come right through.  And I'm more than okay with that, even if the message isn't exactly comfortable.  Hell, if it weren't comfortable it would be easier to recognize and face in the light of day!

I don't allow myself to dwell during the day, so I'm pretty sure what plays out at night is that which I won't address during the day.  Yeah, yeah... that's a 'duh' statement, but it still needs to be said.

What do I do with this information?  I've not one single clue, folks.  Not one.  Assuming my subconscious still knows more than my mind is willing to see, I guess it's just a matter of time when I'm shown what to do with it all.

Until then.... Please pass the popcorn!

PART 1: IV infusion... hope this works!

So I got the call yesterday that my labs confirmed the iron deficiency and that I will be scheduled for an IV infusion.  It will take about 30 minutes for the infusion (not bad), and another 30 mins for observation for any reactions...which can be quite severe/dangerous (anaphylactic shock).  Then I have to go for a second treatment one week later, then it's observation from there to watch for any declines in ferritin, and also to see if the levels are increasing to where they should be.

I'm really hoping this will take care of the awful fatigue and other symptoms, which may not be all due to the ID/IDA with all the other issues going on.  It will be nice to have my body temp in a more normal range where I don't feel as if I'm freezing all of the time.  My temp at the doctor's office yesterday was 96.0*F.. it's been running very low like that for some time, I'm assuming, from the ID/IDA.

Let's just say... these are all steps in the direction of obtaining better health.

In this quiet place

I guess in some ways I've just allowed myself to vent in order to keep from losing my mind.  A lot of us do that.  And every day I try and find ways to make myself think differently, feel differently, and live differently in order to find myself again.  I'm okay with admitting I'm lost right now, and I believe being lost isn't always the worst thing a person can be or feel.  If you're lost, maybe it just means you've wandered many paths to find the right one.  It's certainly a better way of thinking about it than simply taking the stance that you're unable to find you way---no matter where you are.  I'm reaching out, but I can't really say who or what it is I'm reaching out TO.  It is what it is.  Questioning too much right now just makes things far too complicated.

So how do I feel today?  Self-assessment says I'm feeling tired, run down, and I'm experiencing some irritation with these possible PVCs.  They, along with the iron deficiency anemia make me breathless, fatigued, and TOTALLY uncomfortable.  Just scratching the surface of that, because I'm really not in much of a mood to talk about every detail.  And I'm pretty sure it's not what anyone wants to read.

Here I am, then... just contemplating WTF to do next.  Which is pretty much par for the course these days anyway.  Life is a constant weirdness.  What can I say?  (smiling, here)

Well, the next step (I guess) is just more of the waiting game.  I get to see my PC doc on Thursday about the anemia and what, if anything, do we do about it.  I say 'if anything,' because a larger part of me hopes it will just go away.  Yeah, yeah.  Still, why not expect it to resolve on its own, rather than expecting it not to?  Rhetorical statement.

I'm not going to dump everything in this one entry, because it will turn into topic-salad quickly.  That, and it will end up one of those novelettes that I'm known for writing at times. ;p  Be happy I'm sparing you that much, at least!  Getting to the point these days, as you know, isn't my strong point, so it just stands to reason that I, for now, keep the topics somewhat separated.  Easier for you.  Easier for me.

Blah blah blah.

And junk.