Weak...

It's hard to post entries these days with the growing weakness in my limbs.  Even holding steady with Prednisone dosage the weakness just seems to take over everything, seemingly unstoppable.  I've made major adjustments in my diet, opting for extremely bland food and following a diet that's supposed to help a sensitive digestive system.  I've also stopped one of my medications for reflux (I'm on 2) because it can cause GI issues.  So far I've not seen a lot of improvement, but 'some' improvement is definitely better than nothing in that respect.  Still, the weakness is really taking over things, and I have to say.. I'm really sick of it all.

I dread waking up in the morning.  Sitting up on the side of the bed takes great effort, and lifting my arms to dress, etc. is becoming something I have to 'will' myself through.  I long for the days when I could bound out of bed, ready for the world and whatever the day holds.  This weak and tired person I've become I don't recognize, and yet here I am literally willing myself through what few tasks I'm able to do.  When will these doctors get to the bottom of everything?

Yes, the Prednisone and Aza (Azathioprine/Imuran) have helped SO many symptoms, brought my liver enzymes back into the normal range, but symptoms that persist have obliterated my quality of life almost down to zero.  What's next in the quest for 'healthy'?  I'm doing everything within my power to propel myself towards feeling better, healthy, vibrant--but my body isn't responding to anything and simply grows weaker by the day.  I've no idea what to make of it all.

The liver specialist I'm seeing remarked early on that he thought there was something else going on besides the AIH, remarking on elevated aldolase, which remained elevated even while on Prednisone.  My aldolase levels only returned to normal with the addition of Aza... not sure what that's about, but I know testing for myositis at this point is futile due to my being on prednisone and Aza--the two main drugs to treat myositis.  *sigh*

Well, my arms have completely given out, the muscles hurting badly as I type....

I'm out for now...

The Non-Attractive Art of Half-Assing Life.

I'm here.  I thought I would have to lay down and shut down for a while like I did yesterday (boy, was that something).  It's funny how anxiety can over-stimulate and shut one down in a brief time, and at this time I'm waiting for the shut-down part.  Honestly, I was gearing up for just a minor reboot, something I can achieve at times with just laying down and listening to some music for a bit.  However, that was quickly kicked to the curb by finding yet something else T had 'half-assed.'  Trust me, if he were a superhero like Spiderman, 'Half-assing' would definitely be his Spidey Power.

My mom, like most parents I believe, taught me "Anything worth doing is worth doing right."  Even as a child this made sense to me, so I usually went an extra step or two in doing most everything.  So how is it that someone my age, who claims his parents taught him manners etc, makes half-assing (among other things) something to strive for?  I just don't get it.

I find myself each day dotting the 'i's and crossing the 't's, things T leaves for me like I'm his mother.  And the worst of the half-assing is when it comes to a blatant lack of appreciation for something he paid money for.  Never mind, for the moment, the truly important things in life he half-asses.  Let's just stick to the material goods that somehow doesn't seem to be important enough to take care of.  And yes, this is VERY much important.

The sunroom here at this new house is really quite lovely, and through the coldest months and days (which aren't over yet) the boxes containing the large, round ottoman, the plastic bags that contained the cushion covers, and the boxes that contained the cushions sat outside and awaiting assembly.  I can certainly understand maybe not wanting to put everything together while it's freezing outside, especially when there's no promise of milder days in which to enjoy sitting outside.  But now that we've had a string of days in the high 60's and even mid 70's I didn't really see any reason to not assemble the patio furniture and make us of the sunroom.  We moved in while it was cold (November), and now it's time to get things put together.

Over the past couple of weeks I've asked T to put the patio furniture together--something that is REALLY easy since there's no real 'assembly' involved except for attaching the  legs to the base of the big ottoman.  The chairs don' t need assembly, and all of the 'work' involved is putting the cushion covers on the cushions; a relatively easy job for anyone who isn't sick.

I didn't get a chance to see what he'd done until a short while ago, and wow... it really looks like a 10yr old put the cushion covers on.  I mean, wow.  To be truthful, it looks awful, right there on the verge of embarrassing.  It's a mess.  When he came into the kitchen to get something to drink I brought it up to him (he's working from home today), and the only thing he said was... "It was kind of hard to...." I guess I'll have to have him bring the cushions indoors so I can fix them myself.  Won't be easy with all the weakness in my arms, etc., but... I'm willing to try so the foam cushions aren't ruined by being bent and twisted inside the covers.

Honestly, I've known very few men in my life that will spend money on something and not care whether it's going to be ruined or not.  In fact, with it comes to patio furniture, outdoor grills, and yard work... most men I've known in my life care enough to take a great deal and take pride in taking care of and maintain those things.  Why does T half-ass everything, including the yard work?  Well, I honestly couldn't tell you.  It's really a huge mystery to me.  I have to light MULTIPLE fires under his ass to get anything done.  I just---don't---get it.

I've begged T to hire someone to do the yard work, even had to beg him to hire a 'handyman' that can help me with some other things around here.  Why?  Because he won't do it himself without WEEKS of prodding (no exaggeration), and that's IF he does it at all.  He won't even finish the yard work when he does do anything out there, which I also don't understand.  It's not a small yard (the back is relatively small), but it's not a giant yard either.  I'm lucky to get him to mow the front yard, much less take care of shrubs, rake leaves, etc.  I just don't know what to do, short of calling around and hiring somebody myself.

This is really, really stressful.  Among all the other things I have to contend with, this is just so so so draining.  I don't trust him, because he lies to me, outright and by omission, and fails miserably to follow-through with whatever task he begins.  Oh, how I wish I wear at least as healthy as I was about 3-4 years ago so I could just do it myself.  I could get it done.  But I can't.  I just can't.

Men constantly complain about women "nagging" them.  Well, in MY situation, it's either nag (in this case BEG) for things to be done OR hire someone else to do it, someone who will not only get the job done but do it right!

I hate to say it, but I'm poised at this point to take it upon myself to hire someone who can come here and do a few odd jobs, someone else to take care of the lawn that's been ignored.  T has made it clear he's incapable, and I just don't have the strength to keep begging and begging.  Shrubs that were supposed to be trimmed in the back yard in December or January are still untrimmed.

I'm the type of person to get things done that need done.  Everything from making my bed every day to sweeping and vacuuming on a daily basis (I have a Basset Hound who sheds), and making sure to dust (I have a bad dust allergy), make sure dishes are washed or in the dishwasher, cleaning the bathrooms on a weekly basis, etc... those things I've always made sure were done.  I don't like living in a nasty home and it becomes a TERRIBLE stressed to face a dirty house, sneezing and running nose with sinus headaches due to too much dust... oh boy, I can't even begin to express how it just wreaks havoc on my peace of mind.

I don't fault anyone for being a messy housekeeper.  It's not my place to tell anyone or judge.  But when it comes to MY personal living space, my home, and my health... I do draw the line.

For the past couple of weeks or so my eyes have been SEVERELY swollen with black circles, very dark black circles under my eyes, and crippling headaches due to allergy flair-ups that OTC Claritin has yet to even touch.  My eyes are red, itchy and sore, and I haven't had a decent night's sleep due to the congestion.  T offered to sweep and vacuum---which takes approximately 7-10 minutes, literally only 7-10 minutes, but he conveniently 'forgets.'  He forgets even when I've gone through a fortune in tissues due to constantly blowing my nose.  I try to sweep what I can, but it's getting where I can't do it anymore... and I need someone's help.  T promises to help, then he breaks his promise.. then wonders why I don't trust him anymore.

I totally understand oversight.  I totally get being too tired, etc.  But what I have issues with is that he promises to do these things then 'conveniently' forgets...for days and days and weeks.

He doesn't understand at all when I tell him I'm not sure how long I can stay here, with him, in this life.  He behaves desperately when I am blunt and tell him that I'm getting sicker here and need to be around people who care about me, people who can help me now and then with things I honestly can't do myself right now.  He says he can do it, that he cares, that he loves me, etc.  And yet I continue to get sicker with problems that can easily be avoided altogether by taking 7-10 minutes out of his day to help.  If he can't or doesn't WANT to help, then he should say so and allow me to get someone who can.  And yes, I've discussed this with him and used those exact words.

I've told T he doesn't HAVE to help me, that he doesn't HAVE to do anything at all.  No one can make him do anything he doesn't want to do, including me, and I have no desire to force him to do anything.  But it doesn't change the fact that I can't breathe, I can't sleep, that my eyes are horribly swollen and painful and somewhat due to my allergies.

Ever seen anyone in the throes of allergies without the benefit of medication?  Yeah, it's a pretty miserable sight.  And what it FEELS like is much worse than what it looks like.  I'm miserable with prednisone and prednisone-withdrawal symptoms, which include swelling in the face and eyes and many other lovely symptoms, so I do NOT need to add allergy symptoms on top of it all.  Prednisone helps inflammation, even that due to allergies.  During withdrawal from Prednisone allergy symptoms can be FAR WORSE than ever before, and that's what's happening now.  I can't let the dust etc. build up throughout the house because it's making things 1,000 times worse.

Yes, I'm upset.  I feel horrible, and much of what's making me feel horrible can be avoided.  Oh well. I guess I just ask too much, huh?

Time to ask around and search for someone who can help around here with household jobs and yard work.  I'm done waiting.... just done.

Dear God, please make me well so I can be strong enough to take my life back... even if it means leaving here....

Friday Lost Meaning.

Fridays, when you're unable to work or do anything, when you're house-bound by illness (even if temporary) loses its meaning and becomes yet just another day of the week.  It's true.  I'm not exactly sure when Fridays actually meant anything to me, to tell you the truth, and I'm not exactly sure how to make Fridays (or weekends) special again.  Ah, who cares, right?

Yeah, that's kind of where I am today, muddling over the broken artifacts of a life I used to live.

Blah.  Damn prednisone.

Laugher is about the only thing that gets me from point A to point B from one day to the next, and if I can't make Fridays special, I can at least make them funny.  Right?

Yeah.  That's what I'm telling myself today. ;p

Outside of Normal.

NOTE: The font is wonky.  Blogger having odd formatting issues today.

Into my third cup of coffee while waiting for the prednisone withdrawal migraine to subside, I'm considering what my life will be like once I obtain "normal," whatever the hell that is.  Normal has been so absent in my life that I'm not even sure I'd recognize it if it slapped me in the face.  Honestly, who ares about 'normal' if you feel good?  Yeah--that's really kind of where I'm going with this.

At night, or during the day when I don't feel well, I lay down to appease the demands of my body and listen to music in hopes of remembering what it was like to feel well, to feel good, to have energy and vitality--to have ANY energy and vitality.  There I am, in pain, discarding hopelessness when possible.  Depression often wins, and it sure as hell tried to win yesterday and last night.  When did I become so susceptible to the whims of drug-induced thinking?  Since Prednisone, that's when.  I know this, and yet it's nearly impossible to distinguish the difference between what I really feel or am experiencing, emotion-wise, and the effects of my body scrambling to handle things without cortisol. People, I promise you, cortisol is absolutely necessary.

What I need at this time is for T to get his shit together and stop looking at what I'm going through as... well, as nothing.  Fat chance of that happening, which means I'm left to my own devices, and I don't have much in the way of devices these days.  My thoughts on this are pretty basic.  When someone is sick, especially THIS sick, it calls for change... even if temporary.  He doesn't change with the circumstances, and it's creating some serious havoc with my emotions and health.  How the flip do I deal with that?  Ugh.  Okay, so I'm really way off track here...

If normal had a job I'd have to say it didn't show up to work today.  Or yesterday.

OMG, seriously... this is too much.

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...

So if you read my latest entry in "Where Fireflies Dream," you know I'm all about spending my time wisely.  There's no way I'm squandering precious time on foolish things or people.  This is just a fact. When I have a good day I spend that day wisely, and since I don't really have 'good days' at this time it's imperative that I don't waste a second on BS.  And believe it or not, posting in my blogs isn't a waste of time.  I get to speak my heart, share my feelings or experience(s) or whatever; most of the time it really does help me through this difficult period of my life.

But I'm not going to re-visit the whole time issue here.

So okay, Donald Trump (whom I support!) won the NH primary!  I'm SUPER happy about that!  And last night, after the results were announced, I felt genuinely happy and excited, and I still am today.. despite the difficulties I'm experiencing with my health.  It doesn't matter, because at least one really good thing happened; I'll take it!

Okay...feeling like crap so am going to post in my other blogs and go chill for a while.

A Required Miracle.

Finding the strength to not crawl back in bed and disappear each day is becoming more difficult.  Finding anything at all to keep me going each day has become tiresome, monotonous, and a waste of time.  Yes, I realize this is depression talking.  Yes, I know my 'reality' is skewed by depression right now.  Yes, I know I have to not give up.  But is 'giving in' the same thing as 'giving up'?  I'm thinking... no, that it's something very different.  Aside from a miracle where I'm instantly transformed, where my LIFE is transformed, I'm carried with the current of 'what is' and left without the required miracle to turn my current life into something else other than what it is--a disaster.

Yesterday I was pretty shut-down, and today is no better.  Even as I sit here I want SO much to just crawl back in my bed, cover up, and completely disappear.  But disappearing comes with a hefty price, and that price is guilt.  Guilt because I feel like I'm not doing enough as it is and going back to bed, even if I am sick... just feels wrong.  Yeah, I realize that guilt shouldn't be a part of taking care of oneself, but it often is just the same.

I really can't stand feeling like this.  You've NO idea.

I want to feel good, energetic, hopeful, and I want to love my life again.  But how?  How in the world can I actually love THIS?

Crap.  Crap.  Crap.

*sigh*

Shhhhhh....

A spa day, really?  No, not really.  Oddly, as bad as I feel I still feel too bad to even THINK about a spa day!  Would be a total waste of time right now.  Not kidding.

When I felt better I used to dream of having the proverbial spa day with all the bells and whistles.  For some reason, after this AIH began kicking my ass the very idea of spending a day doing ANYTHING seemed more like an invitation to torture.  If you live with any AI illness you'd know what I mean.  And not everyone has their asses firmly kicked like this.  But many do, and it actually is 100% guaranteed that if you're having a flare you're also living in hell.  How is a spa day in hell better than no spa day at all?  Hell no.  Not for me.

So I'll wait this out and plan on that spa day in the future.  I will appreciate it much more if I'm not sick the entire time and wanting to go home and take a nap or veg out because I don't feel good and can't think straight.  Yeah, waiting is the best choice, and it will be a far better experience if I do wait.

Waiting isn't always a bad thing, you know.

Predicting Life from the Sidelines

This is a very bad day today.  I managed to post about some news I learned yesterday, but I did so in my other blog.   And yes, I'm still attempting to post in my blogs by relevance.  Still, there will always be overlapping posts.  Having said that, let me say... I feel like crap today.  I really, really do.  I've had some success with drinking more coffee (hey, whatever works!) until today.  Today, I don't think all the caffein in the world will help.  Dammit.

One more cup; this is how I get through the morning.  I love coffee, don't get me wrong, but I certainly don't want it to be the reason I'm sitting upright each day.  Well, I guess today will be the day when I say coffee WON'T be the reason I'm upright, because it's just not working right now.  I have a feeling I'm edging towards being a limp noodle with the jitters.  Dammit again.

I sit here and feel like sliding off the chair onto the floor in a giant puddle of 'screw it.'  But I can't really allow that to happen, now, can I?  And yet I knew, as I always do, the moment I sat up in bed that today was going to suck to the highest possible power of suckiness.  I want so badly to go back to bed, to lay down, to sleep... to just not have to use my muscles to sit upright.. or walk.. or even stand.

I'm sitting on the sidelines of my own life, trying to predict from one day to the next, one hour to the next how much 'life' I will actually have at any given moment.  My body isn't predictable.  What I do or not do today can, and usually does, affect what happens tomorrow, or a few tomorrows.  If I overdo things, I pay for it.  And when I don't, I still end up paying a price for something I didn't even know I was or wasn't doing.  So what's the point, right?  How in the hell am I supposed to know what to do, what not to do, when doing nothing sometimes is just as bad as doing anything?

I'm really not making much sense here.

I've managed to get out of bed, so there's that.

Dammit.

Back on Track: Let the Spewings Commence

Now that I've gotten a few things off my chest today (lol), I can take some time to be randomly random.  Ha! I guess I'm just not feeling right today and am going with where this off-feeling takes me.  Why not?  It's not like I have a big day planned or anything.

Okay, so to tell you the truth I'm fighting the urge to go lay down and take a nap.  Naps in my case are a VERY bad idea, because it just invites insomnia come nighttime, something that I have to deal with even with very little sleep.  And guess what happens when someone loses a lot of sleep on a regular, ongoing basis?  For starters, your perception of things become a bit warped.  Yeah.  It's true.  I mean, sleep deprivation is one of the seven altered states.

At the moment things feel completely 'off' to me.  I'll eventually go watch tv, because it's a fabulous distraction when I need one, but I won't say I'm looking forward to it.  Why?  Well, because I have things to do, and it just feels wrong to sit there staring at the tv set when I could be doing something that would make my day more productive.  That is, IF my body would ALLOW me to do something, anything at all but be in a sitting or reclining position; something I'm not particularly fond of, btw.

So this is how it looks when my brain is as tired as my body.  No, really.  It is.  Coherent thought goes right down the toilet, and in its place comes the ramblings of an extremely tired mind.  While on one hand it's frustrating for me to not get my point across, to not know where the hell I'm going with any of this, on the other hand.. it's funny as hell.  Well, I'll look back on this post on a good day, snicker a little, shake my head, and laugh at the attempt to make some sense. ;p

And this, in effect, dear friends.. is the crap I spew. haha.  Hey, if I can laugh about the bad days, then I really think I've got a good chance of surviving the weirdness after all.

...more spewings to come...when my brain is back on board again. ;)

Really? I mean, really?

What a day.  Would be a better day if I wasn't completely taken over by the new meds, AIH, and resulting 'wheverthehellisgoingon' things I'm dealing with.  New symptoms come on board as I go, and dammit if I don't end up completely befuddled as to what's causing them.  Today, nausea rears its ugly head, and honestly.. I've NO idea WTH is going on NOW.  Meds?  Illness?  Anemia returning?  As for the latter, it certainly would make perfect sense given the symptoms.

Just so doggone tired of all of this stuff.  You know?  And, honestly, I'm pretty tired of the voice in my head that is constantly trying to figure out the why's and wherefores of all that's happening.  Well, at least my Rice Crispies aren't talking to me, right?  There's that at least. lol

Okay, so I'm still able to laugh and smile, but it's not easy to do so.  Weak, shaky, nausea, intense lower back pain (which stopped the last time I had IV iron infusions), taste buds about dead, and my tongue is sore.  *sigh* seriously.  What the actual hell?

Drink this, take that, take it with a full meal, don't take it with this or that, take it at this time... omg...

Sitting here looking at my coffee cup, knowing that I'm down 2 cups and afraid to drink anything.  Will it STAY DOWN if I do, is the burning question.

Phooey.

So yeah, I'm doing a lot of complaining today.  I could just not say anything, but my body is complaining and setting off alarms saying something is still wrong, something isn't right at all, there's something else being missed here.

I know it.  My body knows it.  I don't have to say a thing, but it's there just the same.

....going to try another cup of coffee....