Thursday, February 25, 2016

The Similarities of Day to Day Life.



Or shall we call it "A life of perpetual sameness"?  Either way, I'm going to make damn sure I change this.  I have to.

I've posted enough here for you guys to know where I am at the moment.  Dealing with communication and respect issues from T, issues that make themselves known every day and every night without fail.  You also know by now that my tolerance for this is extremely thin, verging on non-existent.  Notwithstanding innocent goof and human blunders, somewhere in the chaos one has to actually SEE the damage being done.  "I" see the damage because I'm a recipient of most of it, but T sits quietly on the river "Denial" and refuses to move.  Ok.  Whatever.

He doesn't like my bluntness and doesn't want me to say aloud the truth that threatens not only to completely destroy this relationship, but the truth that's destroying my peace of mind, health, and happiness.  He's in blissful ignorance, so I don't have any choice other than to say exactly what's on my mind.

When I'm trying to open a discussion, when I need to point out behaviors in someone that TRULY need addressing, I use non-combative phrases.  I speak of how I feel, what the harmful behavior is, but I don't point fingers, name-call, label, etc., because that approach causes damage as well.  I know how to communicate, as long as people allow me to communicate.

Repeatedly disrespecting me is a huge deal and would be for pretty much anyone.  Not allowing anyone to disrespect me was a lesson only recently learned, so I'm still a little awkward with it and finding my balance and strength when approaching the subject.  I'm getting there.  Now, in the process I've become fairly blunt when I've taken all I can, and all PC is out the window.  I speak my mind now while doing my best to preserve the other person's (in this case T) self-esteem.  I've no interest in becoming what I most despise so won't allow myself to go there.

T believes that when I point out what he does that hurts, offends, and disrespects me.. that it's a form of disrespect and that I shouldn't say anything at all.  But I assure you, that approach NEVER works and is, in fact, quite harmful to relationships and the individuals.  If I shove down my feelings, ignore the disrespect, and take the punches in silence... I will eventually resent that person, and that person right now is T.  No matter how I try to explain this--he doesn't get it and shows no indication of trying to understand or stop the disrespectful behavior.

Again, as I've said many times before, I'm not trying to make T out as a bad guy or to demonize him. He's NOT a bad guy--he's just blind to the things he does and doesn't do that greatly and adversely affect me in so many ways.  I hang in there for the obvious reasons, and I do so because I hold hope very close, hope that he'll see what he's doing so it can be stopped.

I may be a bit foolish for relying on hope this way given my past experiences and hope-filled failures.  But there's no reason NOT to hope.  In fact, hope is the great buffer of all things, isn't it?  Life tends to slip apart when hope is lost.

Damage control: There's been a lot of this with most being unsuccessful.  And I'm no stranger to damage control given past relationships that left me holding the weight of fixing everything.  One person CANNOT fix a relationship, nor can one person break it.  If a relationship is going bad, guaranteed there are TWO people at fault, even if it's the behavior of one and the acceptance of that behavior by the other.  It takes two people to break a relationship and two to repair it; an absolute truth.

Sometimes there are victims, yes, but 'most' victims are willing.  Meaning, when you have a way out of a bad situation and don't get on board with preparing things, and if you stay and suffer the damaging consequences.. then you've willingly participated in that damage.

As for me, I was a willing victim.  I played the martyr in love more times than I like to admit.  My role in a past relationship which did a LOT of damage to my self-esteem, body, etc. I take full responsibility for.  I remained in a bad situation, and though I believed that he and I could fix things I refused to see and acknowledge (for far too long) that the weight of that burden was planted fully on me.  I should've left at the first sign of serious problems.

I should have bailed when the relationship began changing the way I saw myself, how I thought of myself, when it began to depress me and fill my entire world with anxiety.  I should have been my own best friend and stood up for ME.  Instead, I did everything I possibly could to change into the distorted version he wished me to become.  It doesn't take a genius to understand that my acceptance of abuses, be they emotional or physical, would nearly destroy me as a person; I get it NOW, but I didn't get it THEN, not until it was too late and the damage was done.

I had to forgive myself more than the other person, because it was ME who let myself down.  I didn't have my own back, and I allowed everything till nearly the end.  It wasn't until I had a TIA and ended up in the hospital (very shortly after the last blow up) did I realize to what degree I'd been beaten up inside and how it had shattered me.

In the hospital the doctors asked about my level of stress, had I been dealing with major life changes such as a death in the family, financial hardship, and/or a breakup.  That was the first time the lightbulb went on and I began to introspect as I lay in that hospital bed with nothing but the hum of the heater to interfere with what came to me.  The realization was harsh, brazen, and shattering in its truth.  I had to get out of the relationship; I had to let go; and I had to do it to save my life.

This wasn't a comfortable awareness when it came blazing out of the deep recesses in which unpleasant things go to smolder.  But there was nothing I could do, really, but allow it into the light and face what it was, what I'd always known but refused to acknowledge.

So the burning question for most people at this point, after hearing/reading about my experience, the question everyone I knew at the time had is: Why the hell did I stay so long?  I stayed because I was in love with him.  Isn't that why any of us stay in bad or toxic relationships, because of our feelings and our sometimes misguided hopes that he/she will change?

I wouldn't find out until much later, until it was far too late and the damage was taking over my life and destroying happiness, that the person I fell in love with didn't really exist.  If you've read my blogs for a while you've heard me say this, and that's because the realization that I fell in love with a lie is profound and one I struggle with today for obvious reasons: You can't say goodbye to someone who doesn't exist.

The mask slipped and I discovered the truth beneath.

To this day everything about me struggles to reconcile who I thought I loved with who I was actually dealing with.

I believe that this problem of irreconcilable truths, for me, is fanning the flames of what's happening in the current relationship.  While I knew this was a possibility there wasn't any reasonable way to prepare for the experience itself.  On one hand being protective is necessary, but on the other hand.. always being poised in defense isn't a good idea either.

This emotional struggle could end with closure; something I will never have.  I can't say goodbye to someone who never existed, now can I?

Yeah... and therein lies the biggest problem of all.  This fight, this struggle permeates day to day life.  T's disrespect, whether purposeful or accidental permeates day to day life.  Health problems worsen and take over day to day life.  There seems to be no end to this....


Wednesday, February 24, 2016

Preceding Sleep There is Music....



This is an amazing song and definitely meant for a great sound system of headphones.  I love Blue Stone... though whoever made this video chose a rather unfortunate graphic.  Anyway, here is a part of what my night sounds like...............


Write. Read. Delete. Repeat.



Such is the case in this blog and always has been.  This is the place where I have exposed my heart of hearts, my spirt, and my soul.  When I dare to be blunt about the thoughts in my head or the feelings I have those entries here are often deleted.  Not always, but sometimes.  I guess you might wonder why that is.  I suppose if you reach for something and get your hand slapped enough times.. you stop reaching; at least that's what I did.

Pouring my heart out used to be easy for me.  With all my emotions on my sleeve (most of the time) I was an open book.  Hiding my emotions wasn't something I did across the board but under the proper circumstances, and with utmost care.  However, one of the relationships I was in taught me to mistrust, to close and lock-down my feelings to where I no longer felt safe expressing them.  Eventually, I would learn to not allow anyone to even know I had blogs, much less give them the url's so they could read them.

Mistrust is quite powerful.

I long to be that open and trusting again, and perhaps I will get there if I keep trying.  In the meantime I hold back, and I hold back a lot.  There's so much to say and share here, but I have to UN-LEARN a learned behavior, and I've not yet figured out just how to do that.

In a perfect world I could pour all of my experiences, thoughts, dreams, wishes, rants and ravings upon these virtual pages and go on about my business.  In a perfect world.

I'm going to find a way to fix this...

Tuesday, February 23, 2016

This is one crazy ride.



Seems like I spend most of my time in speculation regarding my current circumstances.  If there were any other direction in which to channel my focus I would certainly do so.  I mean, no one likes to be bombarded by the kicks, knocks, and out-right punches life sometimes dishes out, and when these are broken by even an occasional time-out then... well, rest and recovery is the only real way to make withstanding the worst possible.  Not to say we're destined to buckle under the onslaught, but it certainly makes it easier to get back up when you have the strength and clarity to do just that.

I'm a bit lacking on the strength and clarity thing these days.

Introspection is the name of the game these days, and I've gotten pretty damn good at being able to look at myself and ask the right questions.  The answers to my questions, however, are a bit harder to find as the questions themselves seem to shift and change and grow more numerous by the day.  Still, looking, asking, and listening for those important responses from 'self' remain the most important part of healing; for me, this is absolutely essential.

Yeah, it's one of those days where I've yet to determine the course of my life.

I'm freaking lost (no surprise there).




Monday, February 22, 2016

Cold.



I'm in freezing mode--just one side of the coin of prednisone.  Withdrawal is kicking my ass and giving me issues (duh), so I don't have but a moment to post here.  Just checking in, more than anything.

Physically, I feel like crap.  Emotionally, I feel like crap.  My whole reason for getting out of bed each day is simply to take care of my dog and ferret, and.. well, pretty much to try and push-back against this depression that's trying its damnedest to win.

Really not doing well today.

Not at all.

I'm going to try and post again later...

Friday, February 19, 2016

Seven Days.



It's an important number to me.  Every 7 days my dosage of prednisone decreases.  While I'm tapering from this extremely powerful drug I experience many unwanted side-effects, much of which I can't differentiate from AIH symptoms.  At 5mg/week my body became my worst enemy, leaving me unable to walk from the living room to the kitchen, making it difficult to walk the very short distance from the room I have to sleep in now to the nearby bathroom.  From unshakable episodes of freezing to feeling as if my body is going to melt into a puddle, I never know from one minute to the next what I'll be dealing with.  The turning point for me a few days ago was waking up before the sun in the throes of a migraine.

Tapering 5mg/week was simply not going to work.

Another call to the dr. and I'm told to go back up to 7.5mg and taper down at 2.5mg/week.  The morning of the migraine I discovered that with that 5mg dosage the migraine would go away, and it was that same evening that I added the additional 2.5mg.  While this seems like numbers and boring, dry information, I promise it's much, much more than that.  My entire quality of life depends on a tiny little pill that had the ability to make or break my life in every way.

On one hand it's a life-saver, and on the other it's dangerous as hell.  It's the drug people with AI diseases love to hate.

The usual thinking on getting off prednisone is to slow the taper the lower the dosage gets.  I'm unsure if I will be able to go down to the 5mg again, but I'll certainly find out next Wednesday.  Just how I'll find out is yet to be seen.  Will I feel better?  Will I feel worse?  Will there be debilitating symptoms again?  Or will everything go smoothly?

Without answers I can't make plans.  With each day being a giant mystery that unfolds one minute, one hour, one symptom (or lack of) at a time I am no longer really in control of my life anymore.  Prednisone now determines everything---basically, it's made me its bitch.

I can be honest about this.  I have to be honest about this.  I'm willing to face this head-on even if it means I'm the recipient, on occasion, of a TKO by a drug that is supposed to save my life.  I'll get up, face another day (albeit at times unwillingly), and keep going.

All of the above has affected my life.  Okay, I accept that.  What I don't like at this time is no support network, no one listening (not including who reads here) when I really need to talk.  If I could just feel good, be without pain, lead an normal life, I can handle the other stuff.

In the meantime I'm ticking down the hours in those 7 days to reach toward that goal of being off a drug that whispers it will save me, while making me feel as if I'm dying.

Seven days at a time... we'll see where I will be when I'm finally free of the prednisone shackles.

We will see...

Wednesday, February 17, 2016

Migraine...



Just when I thought I would be writing about something OTHER than this whole Prednisone experience, I end up with symptoms that will land me in bed the entire day.  It's a good thing I like coffee, because when it comes to migraines... coffee does help.

Then there's the nausea.  With prednisone withdrawal and migraine comes nausea.  It's a very bad day, I can tell you.

I took the 5mg dosage for the day, gagged down a little food (you MUST take Prednisone with food), and am praying that little bit will ease the headache.  So far, the headache is a little better than it was when I woke up, but I don't know if it will return when the Pred leaves my system (had a very short half life).  I can only hope and pray and leave my bed un-made and waiting.  Trust me, I'm going to end up back in bed VERY soon.

I'm also freezing.  This was also the case yesterday, and it's been like this off and on for the past week; also another side effect of Pred withdrawal.  There's just so many of them, and NONE of them are even remotely pleasant.  I'm waiting to find out from my doctor if I can taper off more slowly... much more slowly.  I can't just be an invalid until my adrenal glands catch up.  That won't work at all.

So how in the world am I handling this?  I'm not.  Just being honest here---but I'm not handling this at all.  Am I trying?  Sure.  Of course I'm trying, and I'm trying as much as my body will allow.  That's the best I can do; that and forgive myself for not being capable of doing the things that need done.  My animals are well taken care of, so that's the most important thing.  Dishes can wait.  Sweeping can weight.  The rest is incidental.

What I'd really like to see happen today is the cessation of this migraine (totally), allergies calm down so I can breathe better, and to be able to relax, actually relax.

...I'd also like a new pillow.

Tuesday, February 16, 2016

So Incredibly Weak.



It's been a few days, hasn't it?  Tapering off Prednisone is kicking my ass.  I'm so weak, cold, tired, dealing with nausea.  I'm about to go lay down for a bit, cover with a snuggly blanket and try my best to warm up and feel better; I really don't like that this has become my current 'Norm.'  When, oh when, will this start to improve?  When will I be able to re-join the land of the living again?

No answer...

I just can't sit here anymore...

Wednesday, February 10, 2016

Perseverance is Determination on Crack.



On occasion I'm reminded of just how little my mind is okay with what's happening in my life.  Sometimes it reminds me that those things I can't do at the moment are weighing heavily, and so heavily that I'm struggling to maintain on a daily basis.  While I understand that this won't be forever, my being so damn limited, it's still wreaking havoc in my waking hours, as well as in my sleep.  How to get past this and find peace is going to be a process, and one that will require much patience on my part.  And oh, but I don't have much patience these days.

I'm not willing at the moment to go into details, and mostly because I just don't have the energy for explaining everything.  All I know is that my physical limitations right now are driving me crazy, anchoring me to this house, and preventing me from ACTUAL living.  I can't engage in anything these days and have become mostly a non-participant in my own life.  How the hell is that going to work as I wait out the too-slow process of 'normalizing' my health?

Perseverance is determination on crack.

I fuel the fire with caffein in the morning, then take to my bed when my body can no longer handle sitting upright for any reason.  My days are measured and sliced by how many times I have to lay down in order to get back up.  Yeah, you heard that right.  If I do even one small task that requires the most minimal of effort I'm wiped, totally wiped of energy, stamina, and I'm laid out for a few minutes---to hours.  I never know what I'll end up with, energy-wise, strength-wise until I'm done doing whatever it is I need to do.  Oh, and those tasks that drain me... they often consist of just walking from one room to another.

Now, I will say that I believe a lot of this is because I'm coming off prednisone and at a relatively fast rate.  The damage of being ON the stuff has concerned my liver specialist, so he wants me off asap.  This happens with consequences.  The immunosuppressant I'm on... Aza (aka Imuran/Azathioprine).. is on board enough now where it should be helping me come off the prednisone with few side effects.  Problem is, I'm sensitive to medications, always have been, and I tend to get most of the side effects.  yay me. NOT.  It is what it is.  Either way, I'm trying my best to persevere and not give up, despite the side effects and discomfort and depression.

I'm trying....


Tuesday, February 9, 2016

Shhhhhh.



It's quiet.  I like the quiet and often prefer it to even music at times.  Listening for guidance, watching for signs of life in an otherwise empty space, not knowing whether to trust my instincts and give in, fight--these are every day experiences for me; sometimes by choice; sometimes by chance; but always for a reason.

I'm heading to my oasis in a moment, a room I use as my 'Girl cave,' a place that is inherently me in all it contains, inspires, and presents.  My own place where I can retreat, nap, contemplate, and create if I had the energy.  It's a good place.  A very very good place.  I feel at home in there, more at peace. It could just be the decor, all the familiar items from my former life of 2 years ago, the soothing familiarity invoking that feeling of "Ah."  It's really my space and I am very protective of that space, I promise you.

So I took that Lasix for the first time a little while ago and am waiting for it to kick in.  This means I'm retreating to my room where I can be near a bathroom... yeah, it's a very powerful diuretic, prescription, and boy is it going to keep me busy this afternoon.  It's okay.. because it's needed to combat the prednisone water retention, which is making my BP shoot up in the are of 194/82.  NOT a good BP reading.

Time to head into the other room...

Okay, bladder... let's do this!

Yikes!

Friday, February 5, 2016

Just Not Going to Worry About it.



I'm not talking about the recent findings on my labs.  Since it points to kidney issues but doesn't have any proof of such (imaging, etc), and since the 'damage' showing in the labs COULD very well be due to Prednisone and/or Aza (Azathioprine), then I'm just going to choose not to worry about it.  I mean, it's not going to help anything if I worry, so why bother?  I can choose to focus on what I do know for sure, as opposed to focusing on what MAY BE.  I choose the latter.

Since a couple of you asked, I thought I would just give you the basics, in case you're curious.  As of my last lab results, of which I received the copies at the beginning of this week, it shows I have Stage 2 CKD.  Now, one reason I'm not worrying about this too much is because the findings are an estimate based on weight, height, gender, and several lab values.  It's NO guarantee that I have CKD, when it very well could be AKI or ACUTE Kidney Injury, and possibly due to some other factor.  In order for CKD to be a diagnosis, one has to have those elevated labs and ratio numbers for at least 3 months.  For all I know, the next time I get the labs done.. everything could very well be right within the normal range.

Oh, and if you don't know what CKD is---Chronic Kidney Disease.  This can be completely idiopathic, or it could have a direct and verifiable cause.  Since I don't know if I'm in CKD or if I'm experiencing AKI... I have to wait.  So why not wait it out until I know?  Right?  This makes the most sense to me.

Here's a little information in a screen shot:  This is pretty much the given belief in the medical community, and though it's rather like a waiting game, it's important to know for sure what's going on and why.  This also causes some doctors to take the stance that waiting is not the best idea because once the damage is done, it's irreversible and can cause major problems for the heart.



Like any other major medical problem, early detection and treatment provides the best outcome.  Thing is, deciding something is indeed a major medical problem should be done with certainty.  I guess it's a damned if you do and damned if you don't scenario.  Still, I think waiting may not be the worst idea.

I've seen changes with kidney function in my labs before, and the numbers have been creeping towards this for a few months now.  I also suspect that if my doctor's suspicions are correct and I do have Myositis.. the destruction of muscle tissue and protein breakdown may affect kidney function values; this is me guessing, of course, and one reason I'm leaving things up to the doctor and future lab results.

So that's it in a nutshell, the reason I deleted the post a few days ago about this issue.





Tuesday, February 2, 2016

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.


Monday, February 1, 2016

$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! :/



The Sound of What's Within

So much for strong suggestions

ME22 & NE23.  NEFL Eagle cam. Screen shot and photomanipulation by me. Copyright American Eagle Foundation. My physical jour...