Too Weak to Care.

Well, that's only partially true.  I care about my life, my health, my well-being, but it isn't easy when there is absolutely no energy or strength to deal with, well.. difficulty.  Today is a day fraught with fatigue and weakness, and the inability to make sense out of everything that's going on.  In other words, I suppose, this is just a typical day.

"Typical" has lost its meaning for me.  Is "Typical" now a significantly decreased quality of life?  Is "Typical" interchangeable with "Normal" in a way that crushes all hope of feeling better?  Finding answers to these and other questions have proven to be nearly impossible, and in the wake of confusion, in the midst of medications not working or bringing too many bad side effects on-board, while switching from one medication to the next, as my health continues to deteriorate... where in this do I apply the words "Typical" or "Normal"?  I honestly can't figure out how to do that without disintegrating any and all hope for improvement.

What a crappy trade-off.

I'm just too tired to continue typing, but I hope tomorrow will be a better day...

This Timeline

After yesterday's major energy crash, today I find myself contemplating the things my mind wants to do that my body won't allow.  I didn't handle yesterday well at all, and I found myself wondering how much is going to get worse before it gets better, and just how am I to ride it out from day to day when even the simplest tasks are becoming glaringly impossible.  Where is this leading, when will it get better, and why can't I see my life's timeline anymore?

So I've ventured into another realm as of yesterday, and that is changing my diet radically.  The Prednisone weight will have to be put to the side at the moment, because I'm now having to deal with changing my diet so as not to be incredibly sick... let's just put it that way.  I'm now having to construct a pretty bland diet in order to stave off the turmoil that seems to have taken over my GI tract.  Yeah, I know.. not pretty.  It is what it is.

Bland chicken and rice, bananas, white toast (HATE white bread, btw), veggies, cooked carrots, etc.. is now going to become the norm until we find out how to get that $1,200 Rx.  We're trying a different route today, one that makes the dosage a little lower (have a copay card we're hoping will work with this dosage change).  Why on earth does this even have to happen?  Ugh.  Obamacare SUCKS and has messed up SO much with insurance.  Anyway, back to the topic at hand...

The bland diet will have to do until I can get that Rx.. which I needed at least a month ago.  The waiting continues....

On another note, I still feel 'dull' today, tired, brain-tired, lethargic... all fun and games when Azathioprine dosage is tripled.  And the fun begins with taking massive precautions to not get a cold or flu or whatever.  This is.. also just the way it is.  Welcome to my 'new normal.'

But that timeline that I used to be able to see, even if a bit blurry, is just gone.  I suppose this means I'm going to be living day to day until I feel a bit more like a human being, and I will continue to take steps in the right direction when I can.l

The exercise bike is partially put together... T doesn't care to use it so it's just at the back of his mind. But when the day comes that it's FINALLY assembled... I can at least begin exercising.  Unless my doctor feels that with active Myositis this is a bad idea.  Either way, even if I can exercise even a little everyday it should only benefit me, right?  And the eating thing... bland diet or not things have to be done differently.   And this is the only way I see my life right now, just getting from one moment to the next, one day to the next, one thing to the next.

...And who the hell knows what's next?  I sure don't.

Dammit.

Well Crap...

Honestly, I wasn't going to make another entry today, but some major symptoms of perhaps an overlapping condition reared it's head in a HUGE way, prompting me to call my liver doc again.  I'm sure the guy is about tired of hearing from me about now.  He knew there were two situations, both of which is being treated as a separate entity since that's what we believe they are.  Treatment for the second GI issue seemed to be working since my first dose Monday night, but today... it all changed in a VERY dramatic way.  Trust me when I say, I'm going to spare you the details for your own good.  Let's just label it "IBS" and go right the hell on past that and pretend we don't have to actually think about what that is. ;)

Either way, what drugs I'm on.. two should be helping with this, and the other (Imuran/Azathioprine) can actually cause the problem.  I'm aware that dietary intake can have an effect on things, so I'm nixing, yet again, ALL dairy from my diet.  Or most dairy.  I'm not sure this is the problem yet since I've not seen an actual pattern here.  And yes, I had to come off my vegan/vegetarian diet a few months ago due to iron-deficiency anemia (Not diet-related).  Healing took precedence over my ethical reasons to abstain from eating animal products.  That being said, I'm not sure how long this is going to last in light of the recent upswing in certain IBS-like symptoms.

Initially I was to be one two different medications related to these symptoms, as my hepatologist believes there is a large possibility I'm dealing with a gut bacterial overgrowth.  SEXY, huh?  Well, thanks to my insurance and FREAKING OBAMACARE changes, my insurance company refuses to pay for the $1,200.00-$1,500.00 medication.  That's just ONE medication.  Why can't I take something cheaper?... because I'm on a blood thinner and most of the medications in that class can cause serious bleeding events when taken with a blood thinner.  So I've been waiting for a month now to find a way to get the medication I need, as the symptoms continue to grow worse, and more intense.

The reality is that this IBS-like condition, and I'm calling it "IBS-like" because my doctor still believes it's bacterial in nature and not a disease process.  Once treatment can be started then we will see if things resolve.  But when the hell will I get to actually TAKE the medications?  THAT is an ongoing problem.  On an aside, I did finally resolve my problem with my blood thinner going from a $25.00 2015 cost to a $361.00 2016 cost via insurance, and because my insurance refuses to pay any portion.  THANKS OBAMACARE!  UGH.  I found a Rx copay card application, finally, on the drug manufacturer's web site, signed up, and now my medication cost's a whopping $10.00 per month!!  I'm very happy about this and relieved as well.

So the secondary issues that comes with the IBS-like symptoms involves a lot of bleeding.  Yeah, yeah.. I know this topic is gross, but it's one a lot of people have to deal with, and if anything at all I say here helps even ONE person, then I'm going to talk about it.  So anyway, the bleeding issue is worse because of the "attack" I had today.  And oh boy, I really wasn't expecting this attack to be as severe as it was.  I'm sitting here at the moment pretty much scared to eat anything.  Yeah, even the accelerated hunger from the prednisone can't even break through that fear, and for good reason.

The nurse I spoke with about this new event hasn't called back, but my Hepatologist is a very popular doctor and is extremely busy.  They always get back with me, but it may take a little time.  They may be contacting my insurance again re pre-approval for that drug I desperately need to take, or possibly take care of this problem.  Is it related to the AIH?  I've no idea.  But it's being handled as a separate entity.  I don't care how it's handled as long as it's handled and I can get it resolved.

Of all the things I despise, I honestly have to say that Barrack Obama has all but destroyed our once fairly decent health care system.  Pledging to make health care/insurance available to ALL of us, what he ACTUALLY DID was FORCE people to buy insurance they can't afford or face severe tax penalties for not complying.  Furthermore, it forced the hands of health care providers via insurance changes to make up for the new system.  What an F'ing disaster, and one that has far-reaching repercussions for anyone who had insurance to begin with.  Not only that, but I still couldn't get or afford health insurance even when I wasn't insured.

In the meantime I'm dealing with debilitating symptoms and blood loss.  Seriously, any wound that bleeds is a problem when you're on a blood thinner.

....And don't get me started on the excruciating lower back pain... I won't even venture a guess as to what's causing that.

Crap.

Crap.  Crap.  Crap.  Crap.  Crap.