It's My Blogger, I Can Whine If I Want To... Whine If I Want To....

You would whine too if it happened to youuuuuu! No, not really.  But it made for an intro that invoked a smile, even if a small one, right?  My busy week has left me wondering, unsure, and stuck in a health loop that I'm not sure will end easily.  Wow.  Like THAT doesn't sound familiar.

Life being what it is we just need to get things off our chest or deal with the consequences of, well, holding it all in until we lose it.  Right?  Right.  I suppose many people have their own way of dealing with or working through things life tosses their way, but for me.. I have many outlets.  Blogging, however is the one remaining on my list that I can actually use at the moment.  So be it.

I already talked about the elevated ferritin, so I'll leave that one be for the moment.  I saw an Endocrinologist yesterday who believes I have (((( wait for it  )))) Adrenal Fatigue caused by (((wait for it again! )))... long-term use of Prednisone.  I knoooooooooow!  *Putting on my best shocked face*  Basically what this means is that the prednisone put my adrenals to sleep and I have absolutely nothing to help me with ANY kind of stress.  I've been stressed for YEARS; Chronic, nearly 24/7 unbelievable stress, both emotional AND physical.  Then, I have to do a 12 day Pred Pac last year, then 3 months THIS year.  The thinking is that, because I went into Cushings Syndrome, my adrenals shut down.  And this is what happens when you develop Cushings.

I have almost every single symptom, and my Endo doc recognized what it is.  It can't be confirmed without blood work, and I got that today.  And tomorrow, because of the Pred, because of the Cushings, because of the possible adrenal fatigue.. I have to have glucose testing to see if my pancreas is damaged and I'm edging, or IN, the throes of diabetes.  My serum glucose is not showing overt diabetes, but that doesn't tell the entire story.  Type II diabetes is one of the more common side effects.  Nifty, huh?  *sigh*

The other appointment I had today was with my bone doc.  Got the MRI results back, and as suspected, I have a torn rotator cuff.  Surgery, because my arm is UNBELIEVABLY painful when I move, is the only option for me.  Day surgery, they'll repair the tear, file bone spurs, and send me home with pain meds and a few restrictions for a while.  There are two problems with proceeding right away with surgery is the fact that I have been on Prednisone and it was 'long-term.'  The other problem is the possible adrenal fatigue.  You can't add additional stress to the body when it basically lacks any defense.  Suppressed adrenals are VERY bad news, and in this case it would mean my body couldn't handle the physical stress of surgery, even minor surgery.  Getting upset at someone will shut you down completely when your adrenals are "asleep."

I can't go into all the details about adrenal fatigue because, literally, it would take a research paper to explain what it is in detail as well as the processes involved.  It's progressive if it isn't addressed and quickly.  People can be heading down that road for years and not even know it, and if you're on that road already... prednisone will push you right over the edge.  And it will.. WRECK. YOUR. LIFE.

So where I am right now in this is simple: Wait for blood test results to see IF what I'm dealing with actually IS adrenal fatigue, and go from there.

Not much else I can do.

Guess I'm done for now... arms too tired to type much longer.

Oh... hope you like the song I left for you guys....

MRI, Lab Results, and Fireflies!

The problem with my shoulder has gotten much worse and I'm pretty much unable to use my arm for little more than simple tasks... such as typing.  I was referred to bone doctor, who sent me for an MRI, which was yesterday.  An hour long MRI... did not sit well with my body at all.  I won't go into all of that now, but... now I wait to find out if it's a torn rotator cuff, which the bone doc thinks it is.  So much for that.

I also received a call from my PCD about some labs that were done about a week ago, and I'm once again being referred back to my hematologist.  Ugh.  The last time was about a year ago and was  for low ferritin (anemia).  I received iron infusions for that and was fine in that respect, and my ferritin levels were restored to normal.

THIS time, my ferritin is elevated.  Again, the last few tests it was right in the normal range where it should be.  I don't eat much red meat (not a big fan and prefer a plant-based diet), and any protein sources usually include chicken and fish mostly, and on occasion... red meat.  My multi-vitamin does NOT contain iron because I'm in pre/meno so well, to be blunt, I don't get any visits from Aunt Flow or Uncle TOM anymore, not in almost a year now.  No need for iron in vitamins when this occurs.

Anyway, so... I have to see the blood doctor to find out why.  Not sure if timing is the key here, or if this is just a really good indication that I'm NOT dealing with hemochromatosis, which is iron overload.  I don't believe for a second I have that.  But it still is almost always due to liver issues.  Ugh.. which most of you guys know I already have (Autoimmune Hepatitis, or AI).

Thankfully my ferritin level is only mildly raised... but I was told it's still needs attention because it means my body is absorbing more iron than it should.  I do have to say I find this odd since I really do eat very little meat.  No telling wth is causing this, but... another wait and see situation I guess.

On another note---FIREFLIES!

I've seen a few of these little guys flying about lately, but there were MUCH MORE yesterday.... and that's beyond awesome!  I DO NOT EVER, NOR DO I THINK IT'S OKAY to catch them in a jar!!  They're population is dwindling---a very sad fact---so in the very short season of their lives... let them live!  They have to have firefly nookie to maintain their population!  lol Well, it's true!

So my front and back yard is covered with them in the evenings... and, the big light at the end of the driveway is being turned off.  It's billed to us, so we can choose to have it on or not.  We're choosing NOT to have it on due to artificial light hurting the mating process of these amazing creatures.  We also don't over-mow the lawn so as to allow as much of the population to grow as possible.

I.  Absolutely.  LOVE.  Fireflies.

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...

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.

Twilight--my favorite time of day.

It's a small part of the day and one you may miss if you blink.  Stay awake.  Just stay awake.

Almost the entirety of my escape processes include music, where the fabric of reality and the fantasy of reclaiming a life I once had clash in, sometimes, startling and colorful ways.  I don't delude myself into thinking that I don't know what really is or isn't; who cares?

Falling asleep listening to carefully constructed playlist is the only oasis I know.  While some songs grant me enough peace to fall asleep others wake me, and it's the message rushing to the forefront of those that bring me out of my slumber that are the most unsettling, the most telling.  I sometimes think of those moments as my subconscious crying out for help, that the sleeping soul and the wakeful spirit will be one again.

Creativity sleeps.  Dreams are too distant to remember.  Hope sits quietly beside me, distant and unmoved.  Memories are places my conscious mind tries to take up residence when I'm unable to sleep and surrender to what smothers my soul.  The abyss is real, and the truth looks down and recognizes its reflection in the darkness.  It's not as grim as it appears on the surface.

I no longer try to make my conscious and subconscious shake hands and call a truce.  The battle is a quiet one below the surface....

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....

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...

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.

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.

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....

Cross-Post Rant ahead!... "I'm done"

Trust me when I say... it's taken me from approximately 7:20am to 10:37am JUST to calm down enough to write.  Waking to indifference each day is grating on my nerves and sucking the life out of my life.  I'm not in the greatest of moods at the moment, and I'm not about to pretend I am.  It's been one HELL of a morning... let's just start there, shall we?

Okay, so all of my life I've believed that the old saying "Anything worth doing is worth doing RIGHT" is a damn good foundation for anyone's life.  Half-Assing ANYTHING reveals a lot about a person.  And by 'half-assing" I mean not putting everything you have into what you're doing.  Not to say your "everything" may not be on the same level every day, but putting in 100% of what you can is all anyone can really ask.  And why not?  Why would anyone do anything less than 100%?  When you take shortcuts you leave someone else to make up the difference in distance you weren't willing to go.

NOTE:  As always, unless I'm writing something aimed at someone in particular... the word "You" is used loosely and not meant to point fingers at anyone here.

My health is bad--I've spoken of this a lot in my blogs.  Dealing with one confirmed AI disease (AIH) and going through the paces of confirming a second means.. I'm NOT in remission.  I won't BE in remission for a very long time (I'm told).  The blood work COULD very well improve, the numbers will improve and possibly quickly, but 'remission' is more than numbers.  I won't go into all of that, but suffice it to say every single day is a battle to get through.  So here I am living with someone who, by nature, does ONLY what he can get away with and not a scintilla more.  What does this mean?  It means I have to take up the slack.  I not only have to do what I need and have to do, but I have to take up the slack from what he only does PART-WAY.

Half-Assers are a HUGE pet peeve of mine!

Look, I realize there will be days, times, and situations where you may have to take a short cut or do what you can in that moment.  But I also know that there are things that HAVE to be done correctly, thoroughly.  I mean, you can only short-cut your way through things until you end up with a completely and totally chaotic mess that SOMEONE ELSE will ultimately have to deal with.  Why the hell would you do this to someone, especially someone you claim to "love"?

This morning, like so many mornings (every morning!) I found myself forcing my way through cleaning up after T.  And I mean, cleaning up as in it takes me some 45-hour JUST to pick up the slack of his half-assed whatever.  Have I spoken to him about this?  Of course I have, and 2 years ago, when it really began, I was very calm, loving, and discussed the matter with him in hopes he would see what he was doing.  I mean, he's a grown up, and I'm not his mom.  He can pick up after himself, because he's no Ward Cleaver and doesn't treat me like Joan.  The family of the 1950's and 1960's are GONE.  Marriage and relationships aren't centered around women being in servitude.

Now, women who are treated with respect, treated kindly, appreciated.. will do almost anything for their guys.  It's how we're wired.  We're wired to be caretakers, caregivers, at least most of us.  However, when taken advantage of we often will begin to back off from all those things we once did easily, eagerly, and happily.  When taken for granted... we don't see any reason to continue giving when there's only taking from the other side.

And please, don't confuse this 'give and take' with material things or money, etc.  Because those things don't bring happiness, not ever.  What I'm talking about here is doing one's part in the relationship without placing the blinders on and thinking it's really just all about the other person doing all the work.

I've been in a relationship where everything was dumped solely on my shoulders.  People who know me, who pay attention, find out quickly that I can't be bought.  You can't buy your way out of unhappiness.  You just can't.  Being poor and happy is FAR FAR superior than being well-off and miserable.  Money can't get rid of unhappiness.. I really can't stress that enough.

Doing your part, that's what it's about.  Not placing necessary pressure or expectations on the other person is what it's about.  Respecting the other person's time is what it's about.  And soooooo much more, or course.  But when it comes to half-assing your way through chores because you know the other person will take up the slack for you... that's a sure-fire way to turn that person off, long-term.  And good damn luck getting them to be turned on again.

Being taken advantage of is not good foreplay.
Being taken for granted is not good foreplay.
Doing and not doing things that make the other person's life more difficult.. is not good foreplay.
Being overtly, blatantly lazy isn't sexy.
Indifference isn't sexy.
Ignoring someone isn't sexy.
Not respecting the other person's space, time, and needs isn't sexy, nor is it good foreplay.
Being mean, hateful, abusive.. isn't sexy, and it makes for LOUSY foreplay.

You treat me like shit, I'm going to shut down.
You abuse me, mentally, verbally, or physically.. and I'm going to shut down and NOT be into you.
Take me for granted and I'll stop doing things for you.

It's taken me years to get to this point, and I've been a welcome mat for a couple of people and won't ever allow myself to do that again.  I don't need anyone THAT much.  If I'm treated badly, eventually I won't feel anything at all for you, and you're going to find out that you really just can't un-ring that bell.

You can't buy me or my love.  I'm not for sale.  If you do something you claim is out of kindness or whatever, and you use it against me later.. you've given your true motive away!  Once I SEE you, what and who you REALLY are, I won't be able to see that 'other' person ever again.  Once you blow it, you blow it.

T is lucky in that there's still about 2% hope here.  This morning was just about the final straw, but I fought and worked my way past it, and I'm telling you it was DIFFICULT!  He knew, too.  He knew the moment I pointed out to him what he'd done.  He tried to backpedal, tried to reassure himself that he'd not blown it VIA me.  But what was done was done, and the disingenuous nature of what he did wasn't lost on me at all, and it broke something inside and change, again, the way I see him and feel about him.  Being disingenuous is exactly like lying, and I'm DONE being okay with men who lie to me, either by omission or right-out.  DONE.

That 2% of me that is still open to his finding a solution and fixing the whole disingenuous thing is stretched very thin.  He's running out of time.

Honesty and respect are MORE important than love.  My last relationship taught me that, opened my eyes to the fact that without those first two things.. LOVE CAN'T EXIST!  Love CANNOT exist in the absence of honesty and respect.

Besides struggling through a VERY PAINFUL morning trying to finish half-assed attempts at whatever, I also had to deal with the tuning me out thing, the thing where he pretends to vaguely respond because he knows he didn't hear a thing I just said.  No matter... I don't repeat myself anymore.  I do let him know, however, that I get that he didn't hear me and that all the begging in the world to repeat myself isn't going to make me do so.  After a year or more of this not listening/tuning me out thing.. I've grown intolerant to it.  I've told him that, fine, if he's that disinterested in what I have to say then I'll simply 'tell someone who gives a shit.'  He doesn't like it, but it's no longer about what HE likes and doesn't like anymore.  I've taken the first step in getting MY life back, replacing the disrespect he shows towards me with my own SELF-RESPECT; something I really should've done a long, long time ago.  Better late than never, I say.

So this morning was NOT a good morning.  But I'm going to spend the remainder of my day taking care of myself, focusing on what I can do to help myself heal, and incorporating those things that will protect me from further harm from anyone, especially from the person I'm living with.  Yes, I still have to work through the damage from the past relationship, but that's already underway and will help with my current situation.

Well, that's where I am today.  It will get better, and I will keep persevering... as long as I can.

Today

Catchy title, huh?  I'm tired and a little low on the enthusiasm here, so my guess is that things aren't going to be too impressive as far as how I think, feel, or speak.  But it doesn't mean today isn't filled with possibility--because, as it turns out, it is.

The exercise bike is due to be delivered late this afternoon, so that's definitely a positive.  I also have to get blood drawn again and see my hepatologist about tapering the prednisone and increasing the Azathioprine dosages. Today has some promise to it, and I'll take that.  I'll take whatever good comes my way.  Still, I feel the depression trying to take hold, and I'm fairly certain it has a lot to do with the combination of prednisone and just the way things are at the moment in my life.

Today--I have to find a way to rise above it.  I just do.

Have to.

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.