The Blandness of Being.

I'm in pain.  A lot of pain.  Trying to think and write here is often too difficult, so... I choose to avoid nonsensical blathering when I can.  But then, I get a few emails or messages on FB asking if I'm okay, why am I not posting, etc.  When this happens I make sure to come here and at least put in an appearance.  As for catching up, well, not sure there's much to catch up on.  But I'll try.

I'm still waiting on lab results regarding my adrenals and blood sugar.  My BP goes very high, then... very low.  No way to treat that, and until we know if my adrenals are struggling we may not know what causes the crazy swings in BP.  It's said that those swings are more dangerous than constantly high BP.  Well, so what?  If you can't do anything about it then why bother worrying?

All there is right now is day by day assessment and trying not to plan anything in advance.  Do you hear the blandness?  I feel it.  I see it.  I live it.

What do I do all day then?  Well, I'm learning Spanish so work on that when I can.  I listen to music, watch Trump rallies, etc. on RSBN.  Well, I use the link from RSBN's web site to the youtube version so I can chat with some friends there and participate.  Not the most glamorous of lives, right?  It's okay... I'm still breathing, so there's that.

Then there's the insomnia.  I believe a lot of the blandness of being right now stems from not being able to sleep well at all.  I desperately need to get the surgery on my shoulder as it hurts badly all night long.  But I have to wait for the results on my adrenals and find out what needs to be done, if any, prior to and during surgery in order to avoid a dangerous adrenal crash while undergoing surgery.  Adrenal Crisis is life-threatening, so the surgeon isn't willing to do the surgery until I get clearance to get it, etc.  Fatigue will absolutely flatten a person out, especially when it's chronic... and... it drains the adrenals.

All in all, the stress has taken its toll.  It took its toll years ago when I was in a BADLY stressful relationship for 11 years.  The relationship was BADLY stressful---as much as the 11 yr one, only condensed into a shorter time frame.  And now it's very stressful but for very different reasons.  T at least is open-minded most of the time to what's needed to avoid the stressful situations.  However, he's not good at all with follow-through, and even in that there is stress.

I pray every day.  I ask God to just shorten this suffering--and yes, it is absolutely suffering.  Anyone who's had chronic pain knows what I'm talking about.  I try and go through my days as normally as I can, find stuff that makes me laugh, smile, or inspires hope.  Motivation is out of reach but at least I can see it in the distance.

For all practical purposes.... this is just life for me at the moment.  I will have a lot of catching up to do when I'm back to full-strength me.....

Self-Preservation.

Why is it that, of late, I'm finding myself avoiding posting in my blogs?  I mean, yes.. I do sometimes go on at length, I know.  But for the most part I seem to wait till that part of the day when I least feel like talking, sharing, or even thinking.  And it's in THAT moment that I suddenly decide to post something.  It's just the oddest freaking thing, I have to say.

I wait till everything hurts.  I wait till I can no longer sit here like this, till I'm SO uncomfortable and in pain that I can't think straight.  Maybe, just maybe I'm avoiding actually talking.  Right?  Makes sense to me.  I'm an hour past tylenol and am still in avoidable, unmoving, unrelenting pain.  Yay.  NOT.

Sleep didn't come easily to me last night and when waking up under that onslaught I feel worse than ever.  I have an idea of what's causing the insomnia for the most part, and it's something I can avoid.  But then, sometimes the pain overrides all.  What else am I do to when nothing else works?  Side effects.  Joyful.

Still, I seek hope, motivation, and a passion for life that I know, that I MUST believe beyond everything, still exists somewhere within.  If I ever allowed myself to believe anything else I'd be in big, big trouble.  Granted, this wanting to believe isn't the same as actually believing.  I know this.  I get this.  I feel and know just how fragile this is and how susceptible it is to influence from outside.  That's the biggest problem here in finding my way---knowing that I'm up against the tidal wave of indifference radiating from T.  People who allow, or even choose to flip their internal switch to 'autopilot' are ignoring the consequences of their actions.  Why?  Well, my take on it is that it's just easier that way.  Relationships are work, but they're worth it if both parties carry their fare share of the responsibility.

Self-preservation has taken a firm hold on my life and me as a person.  I've been here before and recognize what it is I'm dealing with and know where this will ultimately lead.  My health being in a shambles right now is keeping me locked in place and shackled to a life that isn't mine, not even close to mine.  I don't recognize anything, and that.. is a very, very bad sign.  Still, I'm here... riding out the storm seeing no pause, no respite, no calm waters ahead.

Swim or drown?

That, really, is the ultimate question and one I have absolutely no answer to.  Not yet.

On to post in my other blogs.... I'll work my way through this today if it kills me....

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.

What is worth more than this day?

I've been blog by blog, fueled by a little too much coffee this morning.  And yet I feel accomplished as I discover that, once again, my mind has cleared a little (thanks to the Prednisone??) and I'm able to get my thoughts out.  My other blogs, well all of them, are being filled with ideas, expectations, hope, contemplations... and I am feeling uplifted for the moment...

It's another day.  It's another day living with an autoimmune disease that is far from reaching remission.  I know the deal, summon the patience needed to accept the situation and it's processes, the time it will take to reach remission.  1-2 years.  I can do this if I focus.  Yes, there will be good days and bad days and struggles and set-backs, but there will also be victories.  It is what it is.

Acceptance.

Today began a little rough, not feeling well in the least.  However, and maybe not the best idea, I used a bit of extra caffein to boost myself to the next level here.  It worked.  So far it worked.  I can't do this every day, obviously not healthy, but I can do it when I need to.

Today is a good day.  And I'm going to get some things done.  Are there obstacles?  Yes.  Always.  But that's life, isn't it?  In the meantime I will take advantage of what energy I have, even if it is caffein-induced, and I will use it for what needs done.  Oh but I would love to have a take-it-easy kind of day, actually NEED that.  But not today.  Not today.

So I will listen to music, have this last cup of coffee, and find the drive and determination to complete tasks that are, quite frankly, not the easiest things for me right now.

I'm tired.  So tired.  But today is a good day.  And I'll take that.

Ever-Wondering Why I Bother to Give a Damn

It was a long holiday weekend filled with packing, moving a few loads over to the new house, and lots of anxiety having to be around T for that long.  I'm not being mean here, I assure you, but the magnitude in which he's "just not there" is ever more apparent when we're around each other too much.  And honestly, it drags me down and wears me out beyond words.  Not sure how I can handle this much longer.

I try very hard to be patient and understanding, but it's nearly impossible to feel those things when the other person is simply not trying at all.  I'm a ghost in my own household (notice I didn't say "home"), and the weight of being absolutely trapped is taking a tremendous toll on me both physically and emotionally.  Life isn't supposed to be this hard.

He's supposed to go visit his family in Florida next month, and no.. I'm not going.  By choice.  I'm simply not up to that long drive right now, and honestly... I really need the time alone; maybe I'll be able to breathe for once.  I'm a little scared I'll like being by myself much more than I realize.  Though it really wouldn't surprise me...as I crave space, peace, breathing room, a place to stretch these broken wings and try and remember what it feels like to fly.

...It was another weekend with my pointing out all the ways he tries to control me, how he treats me like a child, how he doesn't respect me... and as always it falls on deaf ears.  Oh, he vehemently INSISTS that he understands what I'm trying to say to him, that he gets it, that he will try harder, and so on..and on..and on..and on.  His words mean very little to me anymore, and his WORD... means even less.

I can't rely on him following through.

Honestly, I could understand his not being able to follow through on some things if there were a REASON.  But there's not.  He simply just... doesn't.  And it's very telling.

In the meantime I try desperately to hold on, to remember who I am, to remember my dreams, wishes, hopes, goals, and to remind myself that my needs matter too.  I also have to work on not being completely rolled over by him when he does this; and I have to say it's nearly impossible.  I mean, let's face it---I'm not the toughest person, and I'm sensitive to both people and environment.  And my environment right now is NOT conducive to happiness, joy, OR healing; three things of which I need desperately in my life.

How the hell did I get here?  Rhetorical question, really.  What I should be asking myself is 'How did I get here AGAIN?!'

Okay, so truth be told I'd have to say I HAVE asked myself that question and know how I got here again.  I'm not in the awful places that I've been in the past with relationships, but this one isn't healthy for me at all.  So what do I do so that I can thrive, live, and be able to breathe in my own space?

That's the million dollar question, isn't it?

And I'm working on that...

I am.  I have to.

HAVE to.

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: IV infusion... bringing health up to speed?

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.

Infusion Confusion and Various Other Junk and Stuff

One step at a time.  How many times have I said that statement?  Well, I'm still in the process of figuring things out.  Or, at least the doctors are figuring things out.  Either way, though progress looks slow, it's still progress.  I'll take it.

Saw the hematologist this morning.  He ordered new labs to re-check my ferritin level so we can proceed with addressing the low iron/ferritin.  The levels have to be re-checked to confirm that the problem is still there, and if it is (which he suspects) he wants to address it with IV therapy (iron infusion).  It will take 2 treatments, one week apart.  Then once the treatments are done my ferritin/iron levels will be monitored over time to make sure it doesn't begin to drop again.  They won't have my lab results back until later this afternoon, and if it shows low ferritin again.. they'll make an appointment for the IV infusion.  Could be worse!  Some folks have to have an actual blood transfusion if it gets too bad!  Mine isn't that bad, thank goodness.

Pulmonary issues still to go.  Have to do the breathing test, which I'm assuming is because of the "Mild, scattered scarring" in my lungs.  Which I don't understand at all and try not to think about too much.  It's all still up in the air at the moment as to where my pulmonologist will take things.  We will see.  Just hoping the chronic cough I have is just the low iron.

Still in the wait-and-see phase.

Now... about those damn dreams again!.......