But Haven't I Spewed Enough Crap For One Day?

But there's never enough spewing of crap!  Well, I actually have spewed enough crap on my other blogs, but that doesn't mean I'm done.  With so much happening in my life right now, so much that interferes with my life and leaving me with no QUALITY of life... oh yes, there's much crap to spew. I assure you.

In so many ways I have the best seat in the house to the most ridiculous display of 'man' spewings.  Now I will say this about T---he's a good guy, a funny guy, and often very sweet. However, quite honestly he's still in the 'typical man' club just like most others.  Doesn't make him bad--it just makes him difficult to deal with, to reason with.

I'm just too tired for 'typical.'

So as I sit up front and center to one of the biggest shit-shows life has to offer I get the residual sound effects from the man camp.  How is it I get through a day is often beyond me.  I have way too much to deal with as it is, my health is shot to hell.. and I'm told, of all things, to "Avoid stress."  Uh huh.  And exactly how am I supposed to do that?  I'll wait.....

Incredibly, there isn't anything I can do to stop the stress as what I face here at home on a daily basis isn't something I can walk away from or avoid... or even ignore.  What a clever assessment on how things should be handled, right?  Just simply avoid stress.  Gosh.  Why didn't I think of that before?  *sigh*

With writing in ALL of my blogs today I'm finding myself understandably tired and drained.  That's not entirely bad, though, as once I've emptied myself of all that's bugging me I can proceed with putting at least mental/spiritual effort into filling that emptiness with something better, whatever that may be.

For the moment, and ONLY for the moment it's just me and my dog here at the house and all is quiet, calm.  I'd be smart to take advantage of that, so... I'm signing off for now and will try again tomorrow to talk about more substantive issues.  *snort*  yeah, I'm laughing too.

Till tomorrow....

Carrying on... but on a different approach..

So, as you guys may know (if you read my entries) my health has been chaos over the past year or so.  Okay, so before that too, but lately it's hit a whole new level of 'bottom.'  It is what it is.  Recently, due to being pretty much bedridden I began to wean myself off as many medications as possible, and so far... it's not helped.  But I think what's left to explore is possibly key.  About that in a minute.

I'm on a few medications.  A blood thinner due to a TIA in 2013 attributed to Afib, etc. I had ablations for 3 arrhythmias.  Two different medications for GERD, two different medications for (embarrassingly) chronic IBD, a statin, Prednisone and Imuran for AIH.  Over the past week I completely ditched the statin, and I ditched the Imuran shortly after weaning off Prednisone.

Yes, I'm at risk for a flare up of AIH by stopping the Imuran.  I don't care.  QUALITY of life is far more important to me than how long I live.  It's a weird thing to have to face that reality, but.. there's a chance the AIH may not flare again for a year or two.  We'll see.

So where I am, briefly because I feel horrible and am weak, is in hormone hell.  After taking the Prednisone for 3 months that has likely suppressed my adrenals, which affect other hormones...

Okay... sorry, but my arms are aching badly just from typing.

Sheesh.  More later.. I hope.

Fact after the fact.

Had an appointment with the Dentist re my "mild" sleep apnea.  This diagnosis, btw, was really surprising to me, because I knew I wasn't sleeping well but thought it was because I was waking up so much during the night.  Pain, etc., all played a roll in my tossing and turning at night, fighting will a stubborn pillow which refused to submit to my will, and wresting with a blanket that I once viewed as the softest, most comfy-cozy piece of fabric on earth.  I mean, microfiber is the shit, is it not?  Yet, it never occurred to me that I could have sleep apnea.  Who knew?

This diagnosis, as you guys may know from past entries here, and on my other blogs, happened a few months back, even prior to the AIH diagnosis.  However, the dentist I see who makes the oral device (CPAP is out of the question) revealed my "score" as "11."  I had no idea I even had a score, much less what that number was.  I really need a new pulmonologist.  Sheesh.

So the dentist held up my chart with "11" written with a black Sharpie and explained what was what, again, and what I should look for in changes as the device is adjusted over the next couple of weeks.  I asked him, as T did (he was there) what the number meant, and this is what he told me....

"That number is the score they gave you based on how many times you stop breathing while sleeping."

Well.  Alrighty then.

So as he further explained, it's a score based on how many times a person stops breathing during the night divided by how many hours they slept.  The score means that, on average, I stop breathing 11 times per hour.

I sat there for a moment considering this information, and I wasn't sure how to react really because it was the first time I learned of this.  No one at the sleep study center told me, and my pulmonologist didn't bother telling me at all either.  It took a minute to digest.

So I guess there's a damn good reason I'm tired all of the time--in addition to all the pain and weakness.  But wow.  11 times an hour--and that's in the MILD sleep apnea range.  Crazy.

Over time it will be interesting to see how I feel as the device is adjusted forward.  This device, btw, moves the lower jaw forward a little to open up the airway and move the tongue forward--this is based on CPR maneuvers.  Pretty cool.  But it takes a little time because if the jaw is moved forward too quickly it can cause TMJ.  I already have issues with this due to grinding my teeth when I sleep, something the dentist has told me is solely due to stress.  In fact, when I asked him what the 'cure' is, he replied... "Not being stressed."

Well, I'm shit out of luck in that department.  Oh well.  So anyway, the adjustments for me have to be done a LOT slower due to this.

On another subject, I will have a new cardiologist soon.  My first appt will be in May.

Now that I've made my arms ache typing... I'll wrap this up.  There's more to say but I'll give myself a little time in that respect...

Home.

One thing I've known for certain for pretty much all of my life is that when I'm ill, I long for home.  When I was little I knew where that place was, and despite its terrible flaws it was still home.  As an adult I was surprised to find that I no longer knew exactly where home was.  So I would spend the majority of my adult life longing for a place that quite possibly, for me anyway, doesn't exist.  I've never been able to reconcile this; not physically, and certainly not emotionally.

The closest I've come to being "Home" once moving out of my mom's house at 18 is Mobile, AL.  I had a tiny little apartment, and though not every moment there was perfect, it felt safe, and it felt like a warn welcome every time I walked through the door--no matter how good or bad things were.  It was a safe place for me to be myself, where I could decompress, where I could dream, wish, hope and feel alive.  This is not the case where I am now.  Not even close.

How did I get here?  I got here the same way I got into every bad situation in my life; By pure blind trust.  It's a flaw of mine and one that's gotten me into more trouble than I can tell you.  I give people the benefit of the doubt, take them on their word, and actually believe what they say.  Well, to a point anyway.  The thing is, that 'point' in which I pivot and see the error of my ways is usually far too late to avoid any damage to my life, and to me.

I'll probably always be this way, a far too trusting person.  I'm okay with that, I guess.  But I really wish I were better at assessing and discerning the heart and motives of people BEFORE I get involved.  We all have our flaws, I suppose.

As I wait for the sluggish process of diagnosis beyond the AIH, I'm left far too vulnerable for my liking.  There are days I can't walk well, verging on not at all, and days where lifting my arms to look at my phone is almost too much.  The weakness grows more each day and the doctors I need to see are weeks out of reach since I'll be a new patient.  The waiting is going to end me in the ER at some point, I'm afraid.  But the worst of this is being this sick and living in a place where I know absolutely no one at all.

T only helps around here bare minimum, and as the chores, etc. pile up... I long for the simplicity of the life I had in Mobile, where I didn't have to clean up after another human who refuses to do what's necessary to not live in a dirty, cluttered house.  I can't live this way, so I struggle to pick up the slack.  And I'll tell you, the slack is far far more than what T actually does.

How the hell did he survive on his own?

I have to somehow find my way home--wherever that is.  I know I can keep struggling a little bit to find my way here, to at least hang in there until I'm better---or at least better enough to survive, to move, to do something to help myself.  At this rate I don't know if I can work, which scares that crap out of me.  Disability requires a definite diagnosis, and at this time I don't have one that explains fully how I'm continuing to weaken and become more and more sick.  What can I do if even typing an entry like this makes me shaky and nauseated with weakness?

I want to be well again, to feel good again, to have energy again.  I want to be in a position where I can find my way back home again.

Home.  I just want to be... home.

MIA

The last several days have been fraught with a fatigue and weakness unlike anything I've ever known.  Basically, for the last several days I've been pretty much bedridden, only able to sit up for a VERY short period of time.  Painful, tired, and weak, I spent what little time I was awake researching if there was a medication I was taking that could be doing this.  What I found was across the board complaints about every drug I'm on.  Narrowing things down to a time frame when I began getting worse I found that cessation of Prednisone and AZA kicking in were likely the culprits.  Here is where things get tricky...

Prednisone and immunosuppressants are the go-to protocols for nearly all autoimmune diseases.  At the highest dosage of 40mg/day I felt amazingly well, energetic, and somewhat strong again.  It was about as close to 'normal' I've felt in years.  With the first taper I began to feel badly again, but eventually had to come off with a slower taper which ended about a week ago.  AZA (Imuran) was added along the way and is something one is kept on long-term to stave off flares of the disease, in my case autoimmune hepatitis -- don't confuse this with visual hepatitis (hep C for example).  This is an autoimmune situation in which my immune system thinks my liver is a foreign body that needs, well, killed off.  Overlapping AI disease is also suspected here, but symptoms cross over and overlap to the point where it's difficult to tell what else is going on.  Myositis or Sarcoidosis are suspects here given my aldolase was highly elevated more than once, even on the medications.  It is within normal range since taking the imuran in higher doses.

FAST FORWARD...

I don't know which is causing this horrid weakness and fatigue, and other symptoms as well, so I opted to call the doctor to TELL him I'm stopping the AZA for a time to see if that's the culprit.  His response was agreement, BUT he wanted me to restart the Prednisone at 60mg per day!  I told the nurse on the phone, who relayed the message to me, that I wasn't going back on prednisone because the side effects were intolerable and it causes so much weight gain, which I've just now begun to lose.  I'm not going back.  She said she would relay the message to the Dr.  I have an appt with him next week and know I'm going to have to give push-back because I'm UNWILLING to take prednisone again.

I've just stopped the AZA yesterday and am not doing well as I'm still weak, fatigued, and wanting to sleep most of the day.  I have a feeling some of this will improve as the AZA leaves my body.

I know the risks.  I know and accept that I could have a big flare of AIH and my liver could be damaged because of it.  But here's the thing: I have to wage longevity with quality of life, and in doing so have come to the conclusion that I simply can't have both.  I'm choosing quality over quantity.

And hey, for all I know it could take a couple of years before I have a flare again.  But as for any other AI disease going on, be it Myositis or Sarcoidosis, no one has given another diagnosis as of yet so there's little reason for me to worry about those possibilities.  Having been on the treatment protocol for those, because it's the same as AIH, it's going to be tough trying to diagnose either due to my taking prednisone and AZA for this long.  Even so, all I can do is see how it goes moving forward.

I'm actually quite surprised that I can event type, because the last several days I've barely been able to hold up my iPhone while laying in bed due to the weakness.  You've no idea how bad the weakness is.

Another thing I have to deal with, which I'm not sure is a bad thing, is the loss of appetite.  I mean, I've gone back to FEELING that I need to eat, where my body gives physical signals that I may need nutrition but don't have actual HUNGER.  Also, this is the third day where it's not just a lack of hunger but also very early satiety.  I've been taking in less than 1,000 calories a day, which I will pay for dearly if I'm not careful, especially if I'm dealing with Myositis.  But that's another talk show.

So for now just know I have to play it by ear and see how I feel, because I may not be able to post here every day---though I do hope I can because that means I'm either feeling better or one tough chick for posting when I feel like I'm going to fall off the chair any moment. ;p  C'mon.. that was funny.  See?  My sense of humor shows up every now and then.

How am I managing through all of this?.... well, I have to admit that's a whole other talk show....

Handle this, handle that, forget what it does to your soul.

I told myself that I could handle this today.  I promised myself I would at least try.  And I did, try.  I can't say I'm handling things well at all, because.. to be truthful.. I'm not.  But I'm trying.  Do I really believe I'm strong enough to get past this whatever-it-is?  Now that's the million dollar question, isn't it?

Forget it.  The whole idea of just "enduring" life is ridiculous and not something anyone should try on purpose.  I don't think anyone does, you know, do that on purpose.  Most of us are catapulted directly at the bullseye of defeat by forces we can't possibly overcome much less stop.  Some give in.  Some give up.  Some are caught between the two.  And me.. I've no freaking idea where I am in this mess.  I just know I don't like it here.  And why should anyone have to be where their soul, spirit fades beneath the gray?

Know when to get out while your spirit still has its wings.

The Handshake.

A relationship is like a handshake.  One person extends their hand and the other extends theirs in acceptance.  This is the best case scenario, however, and relationships leave one person waving their hand in the air and feeling foolish.  At some point that dance just doesn't work anymore and we have to decide wether it's all worth it or not.  But how do we know WHEN it's time to place our hand back in our pocket and walk away?

There's no difference in friendships and we've all seen those fail miserably due to one-sided participation.  It's not usually an instant fail, btw, and we come to the conclusion to walk away after a lot of energy is spent trying to be the one acquiescing, initiating, or taking the blame for the short-comings within the relationship machine.

So if we know how it works in friendships, why do we take so damn long with romantic relationships?  I think part of it is that there's a much larger prize at stake when it comes to that kind of connection that leaves you ultimately vulnerable and exposed.  That other person, unlike a friend (usually) has seen you literally at your worst, your best, naked, knows most if not all of your secrets, and the love and affection that ties it all together is not that easy to break.  In most cases.  Either way, there's just a lot at stake when talking romantic relationships vs friendships.

Friendships do last longer.  And if you think about it, it's most likely because you're not living with that person or trying to divvy up responsibilities, not relying on that person when it comes to the hard times.  I mean, yes, there is some of that, but again.... you just can't compare the two.  There is an exception, however, to this rule, and that is that we actually can apply what we are willing to put up with when it comes to carrying the load of that relationship.

I don't care about the numbers, myself.  Wether you call it 50/50 or 100/100 it still requires both sides to assess what's what and decide a compromise when one side is no longer able to carry the larger portion of the load.

My point here is this: At some point we have to acknowledge when something is harming us, wether it's physical or emotional harm, be it stress or overt abuse, we absolutely HAVE to make a decision at some point while we still have enough of ourselves left, before any real long-term damage is done.

Every day I'm reminded of how much I have to carry, what I'm left to be responsible for, and just how little energy and strength I have to take that on.  Physically I grow weaker each day.  My specialist has upped the Azathioprine about as high as I can take it, and I'm waiting to see if/when this begins to pivot the illness and begin to heal what's wrong.  In the meantime I'm extremely weak, often sick (nausea, etc.), and I have to lay down in bed several times a day now.  This means little gets done because I'm not able to do it myself.  Simple things, really.  Chores that I could handle easily back when I was healthy, living alone and with many more time-consuming responsibilities.  The difference between he and I is that I did what needed to be done and was glad to do it.  I can't live in a dirty or nasty environment so fight my way through the day trying to do what little I can.

I'm so so so done with this.

And since the communication is one-sided (out of his laziness. No joke there.) I'm beyond exhausted. I'm back to my focus being on ONE thing and ONE thing only--getting well.  I will be well enough to take my life back when the time comes and he's going to find himself in the dust when it happens.  It's his own doing, and he's not going to be happy about it when it happens, I promise.  He's been warned of this, and he's coasting along like he can't see it happening already.  But it is, happening already....

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.  And as for any support from T... nope.  I have to accept that I'm in this alone.  So be it....

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*

The O-M-G of L-I-F-E.

My brain isn't work very well today, as there seems to be a possible drug reaction of some kind going on.  Being ON prednisone, or coming OFF prednisone, or even the addition or accumulation of another medication in my system, something else entirely going on; no matter the cause, it MUST be addressed.  Soon.

After calling the after-hours number for my liver specialist I now have an early morning appointment tomorrow to see him to address whatever is going on.  Swelling in my face has progressed to my eyes, and with everything I am I know this isn't normal, not even for Prednisone, which is notorious for causing facial 'roundness' etc.  This is way more than that, causing headache, muscle stiffness, and a few other undesirable symptoms.  I have a very good specialist, btw, and I know he is doing everything he can to help me with the AIH and any drug side effects etc.  I totally trust him as a doctor.

Over the last few days I've had to go back to bed at least twice a day.  It's not like I don't resist the urge and try to keep busy, because I do put it off as long as possible.  Yet there ultimately comes a time when I can't fight the weakness etc. and have to lay down.  It sucks, it really really sucks, but when I reach that point there is absolutely no option.  I'm hoping my appointment tomorrow will shed some light and find a resolution to whatever is going on so I can begin to feel better again.

I would also like to not have the "OMG what now?" thing as a constant, daily occurrence.  I would like to not have my day sliced into tiny sections where I'm just trying to get from one little portion of my day to the next and wondering how I'll manage to keep going.  Relaxing isn't even relaxing anymore, because within a few moments of sitting or laying down I realize that there's nothing at all that is ever comfortable, and all becomes painful at some point.  I mean, WTF?

LIFE is a four-letter word.

Raisins Are Just Grapes That Have Lost Their Will To Live.

Why be a raisin when you can be a grape?  Seriously, the answer's pretty obvious.  Have you ever seen a grape WILLINGLY become a raisin?  EXACTLY!  That freaking grape is going to fight like hell to maintain the status-quo.  You can bet your life on it.

So wtf is that supposed to mean? you ask?....

Absolutely nothing, honey.  Absolutely nothing.

Look, I think it's pretty obvious that all of us have different ways of dealing with bad things that come into our lives.  No reason to be specific, because one person's 'bad thing' is another's 'rush.'  No really, I mean that with the utmost sincerity.  Ever heard of the phrase "The risk is the rush?" Well, many people actually LIVE their lives by that and take every single challenge and turn it into a gladiator tournament of which they very well intend to come out the victor!  I'm just not one of those people.

Hey, I'm honest!  And these days I'm hardly a gladiator.

When things are overwhelming, or if I'm irritated and fed up, well... I indulge in whatever it is I can find to make me laugh.  What else is there other than laughing when things totally suck?  Exactly! So today, that's kind of what I'm heading for.... it is what it is.

On one hand I could be doing something more productive and worthwhile, but not he other hand---Why? ;p Yeah, I do have days like that, trust me.  If I feel down or depressed I can at the very least summon my messed up sense of humor to turn things around.  It doesn't ALWAYS work, but I at least have to try.

Now I will say that when I bother EXPRESSING this, er, sense of humor of mine it's not always so well-received.  I can totally live with that, btw. ;-)  And if I end up offending someone along the way, well, I can't always help that.  People can choose to have a sense of humor, choose to keep going and not read what I post (here or anywhere), or let it all hang out and laugh with me.  Either way, it's not going to change how I approach a difficult day.  If it helps, I'm going to do it.  And yes, yes, yes... I do take others' feelings into consideration.  But seriously... life is just too damn short to take yourself so seriously all of the time.

Live it up, laugh it up, and make the best out of a sometimes shitty situation!

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.

OMG WW, WTF?

So if you saw my post in my "Boo's Juicy Bits" blog, you have a pretty good idea about where on the scale of frustration my meter's stuck at today.  Really.  As captivating as anxiety and stress is, I think I'll pass on that juicy bit today, thanks.  But dammit, the price is just too high, thanks to Weight Watchers and their constantly-changing diet plan--that used to NOT be like a 'diet' at all!  OMG, WW, WTF?!

I'm stepping past that for a moment in an attempt to get my bearings on things.  I'm working against prednisone weight gain here, and dammit if I don't have to PAY WW to be on a plan that makes little sense these days.  Crap, there I go again.  Enough of the WW talk---what do I do now?

Dang, but I'm tired of that question.

Okay, so is it not apparent that the question never changes from day to day?  Of course it is.  And every evening I go to bed convinced that tomorrow I'll approach things very differently, focus on something different in order to find solutions.  And then every morning I wake up to the same feeling of...

FKThisStupidDayandOMGEverythingSucksAndEveryoneSTFUAlreadyOMG!

Now that I have THAT out of my system...

All I want is to feel better, like a normal, healthy human being, to be able to do what I need to do, to work, to thrive, to survive.  Except, that last part is in opposition to all the other things, like working and junk.  I have to take these serious medications in order to survive, and yet I feel like I'm doing anything BUT that.  WTFAS??

Battling the prednisone bulge, water retention that I SWEAR could sink an intact Titanic, cravings that are absolutely out of this world, and the muscle weakness that absolutely refuses to abate; how's that for a fun time?

Over the last several days I'm dealing with the weakness that makes my arms and legs shake, that feels a whole lot like my blood sugar is crashing--though I know it's not.  My labs, my BG, was great last checked, so I doubt very seriously this shaking is from that.  So what then?  Myositis?  Okay, okay, okay... I did say I was going to focus on something else.  Guess I should do that--find a youtube video or something, anything, anything at all that will inspire me.  Hope.  Ideas.  Possibility.  Even if it's simply learning more about what I am dealing with, and also what other thing (Myositis) I could be dealing with....

Seriously.

WTH?

Finding Me

I'm not lost.  I'm not invisible, though I FEEL that way most of the time.  I know who I am, for the most part.  I can look at my life objectively and see where I've gone terribly wrong.  I have a sense now of protecting my health, my sanity, my life, and I won't allow anyone to derail that.  I've come a very, very long way.

I have a purpose just like any other, and a couple of relationship experiences has taught me that I can't lose sight of the fact that I don't need anyone else telling me I'm worthwhile.  Selfish people will spend a LOT of time telling you you're not worthwhile, not worth their time, effort, love.  And why do we allow this?  The answer to that is different for every person, but the one thing that we all have in common is the TYPE person we chose to bring into our lives.

I'm right here, right now, alive and feeling; I've always been here.  Though a couple of people I had in my life tried frantically to diminish who and what I am, and they nearly succeeded, they FAILED.  I know this because I was able to finally walk away from the situation and felt that terrible, heavy weight lift as I did so.  Even in the absence of real closure I know I saved myself by steering clear.

This situation I'm in now with my health is a big uncertainty in my life and I have to accept that.  I have no idea, going forward, what to expect and have to take things one day at a time, literally.  What little energy I have can't be spent on yet another person who doesn't have my best interests at heart or in mind.  Now, on the surface that may sound selfish, but since my health and life are at stake.. I can't leave anything to chance, nor can I just pour my life and future into someone else the way I had in the past.  There's nothing selfish about taking care of myself, and it's taken me a couple of years to actually believe this.

I don't care if anyone thinks I'm selfish right now.  I do all I can for others as much as my energy and health will allow.  The people who love me understand.  And the people, past and present, who don't love me don't understand at all and stand in judgment.  Thankfully, the numbers in that particular group are ridiculously small.

This is not the time for me to turn my focus away from the very real AI disease(s) I'm dealing with.  Both the one confirmed and the one yet-to-be-confirmed are very serious and require life-long treatment.  No one has given me a prognosis, because there's really no way to at this point.  No one can guarantee me anything, and what they're left with is telling me the possibilities as far as what my life expectancy is WITH and WITHOUT treatment.  I've started treatment, as you guys know.  I've begun that journey, but it's going a lot slower than anticipated.  Still, my odds with treatment are far better than without.  Even knowing THAT I'm given NO guarantees of what will be a year from now, 5 years from now, or even next month.

All I can do is take very good care of myself and avoid stress and anxiety.  And herein lies the biggest problem--my life with T, my past that haunts me... all bring stress and anxiety in like a flood.  Not 24/7.. but enough to make each day just one more opportunity to work my way past that.

Finding myself sounds so damn cliche, and so much so that I cringe just thinking those words.  But it's something I can't ignore.  I'm here, but I don't recognize the person in the mirror, the sick person with the dark circles under the eyes, etc.  It's okay, though.  I know and understand the drill.  That sick person in the mirror needs TLC, patience, understanding, and love.  I'm really pretty much the only one that can provide that.  It's still me in there, looking back...


It's still me in there looking back....