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 to diagnosis..

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.

Same Shit Different Day.

I'll make this short and sweet, especially I feel horrible today.  Please check my other blog "All Things Ephemeral" for explanation (link on right of page).

So basically it's same ole, same ole... edging towards worse.  I've been too sick to get out of bed most days now, the pain horrific, and allergy specialist/immunologist says I need to see a rheumatologist again to assess for possibly Lupus or myositis.  His exact words were.. "You're allergic to yourself."

I laughed, but it's kind of not very funny. But hey, I'm keeping my sense of humor while it's still intact and accessible.

As for Mr. Man.  Well, the title to this blog pretty much says it all.

I'll have to finish this another time.. very sick.  In the meantime.... well, nothing. ha!

The elusive network of support.

I've been told throughout my life it's necessary, even vital to success when fighting against that which challenges.

Those challenges many of us face, be it losing weight, extracting oneself from a bad relationship, dealing with a break up or death of a loved one, financial hardship, health issues--I've been told that you simply can't do it alone.

Despite what I'm told, I'm testing that theory as we speak.

I don't need anyone to hold my hand all of the time, but when my resolve slips, my confidence wanes beneath unrelenting weakness and pain of which there's been no tangible hope of it ending soon, it would be nice to have someone who gives a crap present. And I'm not talking about someone being in the same room, but someone who is  Actually present.  Finding someone who can be actually present is a lot harder than it sounds.  At least in my experience.

I've dealt with people who say they love me but choose to be abusive and/or simply not there emotionally.  Trust me when I say this isn't my first rodeo.  And I can tell the difference between if someone is 'absent' with malice or not.  In my current situation there isn't any malice, but it doesn't feel a lot different from the situations I've been in where this was the case.

If you've not read the post below you probably won't understand what I'm about to say...

I've been so sick over the past week that I've been bedridden until today.  The why's and wherefores of the situation is in the post below.  But I'm going to be very blunt here, and at the risk of sounding like a weakling--which is far different from being physically weak, btw.  Still, my experiences over the past week have both saddened and introduced an anxiety about my vulnerability in the life I'm in at the moment.

Bedridden, for me, means sitting up for any length of time is impossible, that standing and walking are feats that make me feel like I've just done something magical.  Standing means my legs shaking so badly that I'm not sure I'll make to to whatever destination I'm heading towards, even if it's 6-10 ft away.  Sitting up, as well as standing and walking, means I feel a wave of extreme weakness wash over me from the top down, leaving an equally intense aching in its place.  This means that over the past several days I don't eat unless someone can bring me something.

The lack of appetite and early satiety, at least, has helped make this vulnerability easier to bear, though my body does send uncomfortable signals that I need nutrition.  I've also lost my taste for water and have to force myself to drink it.  Even with small sips my stomach revolts with waves of nausea.

T worked from home a couple of days this week and was home, of course, over the weekend.  I've never felt so much like an inconvenience.  But the worst of is is when I really, really needed help with something and he just was indifferent, if he heard me at all.  This isn't going to be easy to say, but I will for clarity here... at one point I was getting a bad headache with nausea which told me I needed to eat something.  I'd had a small container of yogurt and a banana (had to force the yogurt down because I felt full after a couple of bites), but it had been about 10 hours since I'd eaten when the sick filling came over me.  I asked T to please bring me something, anything, a banana... whatever... just to stave off the nausea and headache.  He was too busy, he said.  It was about an hour later when I finally ate something, and I had to eat it sitting on the side of the bed because I didn't have the strength to make it to the dining room.  I spent a few days, up until yesterday, having to take whatever food I could get down in the bedroom where I'm sleeping due to T's snoring.  Can't sleep at all in the same room with him.  Anyway....

In the hour it took to get a banana to eat I laid in bed contemplating what I was going through and wondering what it would be like if I became seriously ill and had to rely on him to take care of me until I recovered.  It didn't take long before I was consumed with homesickness, a longing for my simple life in my little apartment in Mobile.  This isn't the first time I'd had this feeling, btw, but this was by far the most intense.

I learned that I have to find a way to disconnect from my situation while still IN my situation.  I've done it before, but I was a LOT healthier then.  How do I do this?  That's the million dollar question, isn't it?

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....

Screams behind the silence.

Be proper.  Be respectful.  Don't say anything.  Allow it to hurt.  Walk away.  Seek solace within.  Shut out the world.  Be careful.  Bury it deep within.  Try and forget.  Sedation in sleep.  Don't talk.  Don't FEEL anything and it won't hurt.

No matter what I tell myself the truth behind the feelings won't give me respite.  I've refused to allow myself the freedom of addressing what "I" need in the past and felt the sting of days and weeks and years lost, years where I was put on pause and left to wither inside.  Right now I can't say I'm doing well in that department again.  This time... I feel myself, who I am, once again collapsing beneath it all.

I try to remain as silent as possible, as still as I can bring myself to be.  That silence, though no one understands, is louder than anything they could actually handle.

WTF kind of life is this anyway?  None.  None at all.

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.

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...

---O---M---G---!

My goal was to try and feel better today, to recover or otherwise heal the invisible sucking black hole that seeps every ounce of energy I have.  My goal was very simple, and in most cases easily obtained by not having stress, by not having anxiety, and by not having to deal with begging or pleading my case to get help with something important.

The 'something' at this point isn't even relevant, because T is a repeat offender when it comes to the pushback, etc. that comes with trying to keep up with my health.  I've no one else in which to ask for help.  No one at all.  I'm exhausted, spent, and hollow inside.  Vibrance exited my life, not with illness, but with the lack of a support network.  Not a soul in my life in which to have a heartfelt discussion about any of this.

An hour into writing this T decided to pick a fight with me.  I'm not in a place to fight, argue, and have no desire to continue to do so.  At the moment, in this half-alive and spent existence, all I want right now is to have peace, tranquility, happiness, joy, and the kind of hope that brings possibility into being.

At the moment.... where I was once just irritated, I'm just empty.  Where in all of this is any sign of life?  I literally feel like a ghost walking the earth.

Where are all the gentlemen in the world, the full-formed males as it were?  Where is the guy that can look at a situation and see something in need of repair, correction, instead of just seeing something to complain about?  It took me at least a year to realize how much was going to be left up to me to carry this relationship.  I'm just not up to it, whether anyone likes it or not.  It's a no-can-do for me.  Plug-in or get out.

I did know a couple of guys who fit the description of "Gentleman" here in my time here on planet earth.  One of them I knew I couldn't be in a relationship with because I didn't feel anything 'romantic' for him.  I saw him as a dear friend, but that's about it.  The other is another story, but one meant for another time, another post.  But the art of being a gentleman is surely all but dead.  Few men respect women these days.

I believe taking a couple of years to tell someone that X, Y, and Z are harmful to me, pointing out behaviors that could be EASILY changed, most often without much effort, that could take a tremendous amount of stress off me and improve both our lives.  Not even things terribly complex, but things nonetheless that are so numerous as to when they occur to be a major problem.

It's time to crawl in bed, cover up, put the headphones on and listen to music---my most favorite escape these days.  I have no other coping mechanism and can handle only so much for so long.  It's hollowed me out completely.

I don't trust T anymore.  It's not about cheating, because he's not that type.  But it is about his constantly, and on a daily basis, habit of breaking his word, then trying to twist things back around on me when he fails to keep his word.  I'm not going to bear his cross as I have my own to carry.

It's been a shitty day for sure.  It's time I make today disappear into music and dreams.  Tomorrow means I will be alone, and that my friends... is a good thing.  In the meantime I will try and find another reason for getting out of bed.

Where have all the gentleman gone?...

The 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....

Waning Patience.

Patience used to be one of my strong points, though that doesn't mean that under certain circumstances that I didn't have my patience tested, sometimes to the extreme.  And it's okay to lose one's patience now and then, because shoving emotions down only makes for a more emotional outcome/reaction later on.  I'm all about being honest with emotions, not burying them so they rise later as a twisted, overblown version of themselves.

But what happens when you're with someone who either beats you down emotionally (or physically as in some cases) for feeling, expressing or sharing those feelings?  After a time one of two things will happen: Either you will suppress your feelings to a self-damaging degree, or you will become very reactive as the bruises are poked and prodded on a regular basis.  And that's putting it mildly.

Long ago, as a child, I learned to not express anger.  Kids are taught, as we all know, that losing your temper or expressing anger isn't a good thing.  Well, for the most part this is true.  We have to learn to express our feelings in a controlled manner when possible.  Some situations do warrant not holding everything back.  However, when people teach children to NOT express anger there is a very real possibility, a very strong one, that the child will grow up suppressing anger, and many go on to suppressing most, if not all, emotions/feelings.  This is a disaster in the making.

I learned quickly that expressing anger AND sadness was a punishable "crime."  Whether the punishment was shaming, guilting, being sent to my room, grounded, scolded, etc... it didn't matter, because the outcome was always the same---negative feedback.  This did a lot of damage and I'm still trying to get past that damage, to heal and feel whole again.  It's not easy, I'll tell you, and I wish my mom would've had the foresight and intuition to teach me to FEEL while learning healthy ways to EXPRESS those feelings.

With each relationship I got into I became a huge sponge that absorbed everything that was thrown at me.  Every unkind and hateful word, every mean-spirited criticism, every joke about me in which I was always the punch line (a treasured abuse by narcissists, btw), even the stonewalling became something I took on as a part of myself.  No wonder I'm broken.

My relationships became an extension of my experiences with my mom, with almost ALL of them carrying on the hurtful legacy I would carry and eventually be crushed by later in my life.  My choices in men weren't the smartest, and I'm willing to admit that I didn't SEE or recognize what I was doing until just a few years ago.

The relationship I'm in now is more than trying, to put it mildly.  T isn't an 'abuser,' but he's simply, more often than not, just not here.  The blatant absence, even in his presence, is a perfect reflection of yet another favored 'punishment' met out by my mother, the indifference and tuning-out being the most painful of things, damaging in their deliverance and painful as a well-delivered punch, maybe even more so.

My days are brought with not being heard, not listened to, with even the smallest gesture of respect something I rarely receive from this guy who claims to 'love' me.  Communication is a nightmare in which I can never wake it seems.  At nearly batting 100 at this point, T literally hears perhaps the last couple of words in a sentence or phrase, often not even acknowledging that I had spoken.  Repeating myself constantly has become a stress I no longer want to have, so I rarely initiate conversation with him for this reason.

My past is laden with such things, though of a darker and more abusive nature.  While I didn't recognize it at the time my entire being was being eroded in such a way that I would only see the situation for what it was only after my spirit was broken.  Even into this relationship the insidious nature of that erosion of self continues to make itself known and without any hint of what can heal what is still an open wound.  That's okay for now, though, because if I can recognize what's happening I can eventually find a way out, to allow healing even if it's in small, minuscule measures.

I have a confession to make.  This whole 'not being heard' thing has worn me to the bone, leaving my capacity for patience wanting, to say the least.  Yes, Prednisone in my system, and even in its exit from my system brings with it moodiness as it doesn't allow anymore for the cortisol (the anti-stress hormone) to swoop in and save the day.  There is only what is in my system artificially until my adrenal glands wake up and being doing their job at full capacity; the waiting totally sucks, I promise you.

Being within 2 feet of T and not being heard is something I'm not okay with anymore.  I don't have the desire to repeat every sentence or word every day of my life.  I just have no desire or energy for such a thing, and it makes communication enormous work and a frustrating endeavor that I've lost almost all interest in.  I find myself in tears as T is the only person I'm around these days, and the realization that I'm so at his mercy while he HAS no mercy is staggering in its significance when it comes to my life and my health.

This is not a situation all that unfamiliar to me.

I've been down this road before, only the terrain looks a little different.  Being sick, having major health issues arise (such as a TIA, which I had in 2013) and having someone in my life who was indifferent, 'put-out' by my being sick, having my emotions, self-esteem and body pushed beyond any reasonable limit damaged my health--both physical and emotional.  This was on a far, far greater scale than anything I'd ever experienced in my life and mostly due to my not understanding what it was I was dealign with.  I know now, of course, but it's not of any help at the moment.  I'm at T's mercy, totally, so when I try to talk about anything, especially the most important things and am tuned-out to the point where I'm literally talking to myself... I admit... it's brought me to tears over the last week or so.  I'm too weak, to tired, and way too sick to be able to handle this in any healthy fashion.

Yesterday was so incredibly hard.  I spent most of the day in bed, covered up, dealing with a tuned-out T to freezing one moment and overheating the next.  It was just too much at one time, and I didn't handle it well.  I fight to get out of bed every day, to try yet one more time while embracing the hope that today will be the day I feel better and more like myself.  It's all I have.  Yet my day was spent in bed yesterday for the most part because I was unable to find any motivation to even so much as sit upright and watch tv.  There's a lot of details I'm not adding, but I honestly don't have the energy to type much more than I have.

All I know is that history is somewhat repeating itself, and the damage from the past is fusing with the damage from the present, leaving me spent, depressed, and defeated.

It's really all I know right now...

Why Am I Here Again?

T

he question hangs in the air.  On a daily basis I ask myself why I'm 'here,' meaning in this life, in this city, in this place.  WHY am I STILL here.. is the real question.  Oh, I know how I got here; that's not the problem.  And in many ways I know why I'm still here, too.  I mean, I'm not well at all.  Not at all.  And it's not like I have a mom or sister, etc. that I can go move in with.  My siblings are just people I share DNA with.  I have nowhere to go, or I would absolutely go.

In no way do I take pleasure in stating the cold, hard facts about T, and there's nothing enjoyable about living with someone who is SO blatantly disconnected and indifferent, so completely tuned out.  So much disrespect, yes.  But I think, more than anything, that his diminishing what I'm going through is the absolute worst.  I distance myself because that's the only way I can regain my balance and have any peace.  I will continue to distance myself to protect my health.  It's the right thing for me to do.

I'm too weak to go into details right now.  Soon, though... I hope....

When Past Experiences Fade.

What I've found is that our past really does change us.  It doesn't change WHO we are, per se, but it certainly changes how we think and how we approach familiar, yet uncomfortable, situations in the future.  Once the damage is done it's done.  We can seek counseling, religion, friends or family to aid in the healing process, but we can't change the scars that remain once the healing is complete.  And this is IF the healing is complete.  Some of us never quite reach that level of healing, unfortunately.

I'm not going to say I'll never heal from my past unfortunate experiences, and I totally accept the fact that the scars are there for a reason; We can't wish or hope or anger them away.  And why would we?

For me, the damage left by awful experiences of past relationships aren't always apparent or noticeable.  With each day's accomplishments and trials the past may be readily in focus or blurred beyond recognition.  My mind only calls up what it needs, or what it believes is relevant.  Is it always actually relevant?  Of course not, so it's up to me to determine what's what and act accordingly.  For example, being disrespected usually brings past experiences readily to the forefront.  It is what it is.  And during those times when the ugly parts of the past fades... I don't question the opacity of the lens I'm viewing through but accept the gift and move through my day.

The past doesn't always color my world, and I'll take the blurry days over the stark reality of the scars left from an emotionally-violent past.  Today is one of those blurry days, and I'm grateful for that little gift.  But it doesn't mean I've forgotten.  There isn't any way I can forget.

I remember because of the scars.  I remember because I'm not lost on the value of the lesson.  I remember because those memories, painful as they are, keep me in-check much like the painful burn of a flame that makes us pull back before too much harm is done.  I remember because I'm supposed to.

The sum of me, all the parts that make up the whole, is only whole when I'm aware.  I can't bury or ignore those dark experiences that hurt and changed me no more than I can bury or ignore those great experiences that made my spirit soar to amazing heights, that inspired me.  Acceptance is healing, and it's a place I can thrive in.

It's time for me to sign off.  I'm cold, tired, and it's time to just heal a little while.....

Out of My Hands.

This isn't the first time someone has sought to control me.  One big difference with the previous experience with a control freak is that, this time, it's not as much abusive as damaging in more insidious ways.  While I strive for better health, reaching for remission of this AIH, striving to lift myself above the miserable effects of illness and its treatments, I find this mountain I have to climb isn't of my own making, and I wonder often... how the hell did I get here?

Point blank--when someone is dealing with health issues that REQUIRE certain dietary changes you just don't go against better judgment, advice, and information.  With everything I'm dealing with, with my BP skyrocketing into stage 4 hypertension (brought about by Prednisone, I'm told), you don't hand that person a bag of salty chips and walk away.  This is basically what T is doing.

How do you "Forget" something so important?  The deep-seated indifference has become a danger to my health now, and given that I can't even so much as walk across a parking lot, much less through a grocery store, I'm completely at T's mercy here.  I can't walk, stand, or do anything without excruciating pain in my back---something they've not gotten to the bottom of.  All we know so far, due to an MRI, is that it's NOT spina-related.  AI or what, then?  Doesn't matter at this point.  What matters is that I do the things I'm supposed to do to get myself well, healed, and healthy again.  And the one person who has most of the control has chosen to disregard even the doctor's advice.  WTH??

Bringing home everything I'm not supposed to eat.  Salt, sugar, junk, processed foods, and deciding that a piece of meat for dinner is somehow healthy... I simply don't understand.  I have to eat more vegetables and fruit, yet I can't stand at a counter long enough to make salad.  Ugh.  It's exhausting even talking about it at this point because I'm weak and having trouble thinking.  Where is this going to leave me in the end?  Destroying my health one meal at a time is what's happening now, and I have no idea what to do about it.

I've been here before, though it was much much worse.  Getting 'sick,' even with the cold or flu, wasn't allowed.  And if I DID get sick, or if something was making me less-than healthy or energetic, I was treated like garbage and made to feel horrible for 'daring' to get sick to begin with.  Back then, just a few short years ago, I had no idea I was dealing with THREE heart arrhythmias AND an autoimmune disease that was trying to destroy my liver.  I didn't have health insurance, and the clinic I went to wasn't aggressive with testing for most things.  All I knew is that I didn't feel well or was very sick and tired and hurting a lot of the time, something that my ex wasn't on board with.

You find out quickly who cares for you when you become sick.  Trust me on this.

This time around I'm with someone who emphatically claims to love me, care for me, and tells me I'm the most important person in his life.  He volunteers this information---I don't ask for it.  My last relationship taught me to not trust people, anyone in fact.  Maybe one day I'll get past that.  Maybe not.  I have no idea.  So when T tells me he loves me then sets out to undermine my attempts at healing and obtaining better health... it makes me not trust him, or his motives.  Echoes of the recent past have come back to haunt me, laying waste to so much I've strived to overcome.

I guess I have to accept the fact that in many regards this whole thing is out of my hands.  As long as I'm too sick, too weak, and too painful (lower back) to fend for myself 100%... I'm vulnerable and at the mercy of another.  And for the second time in my life the people who I'm at the mercy of don't really have my best interests at heart.  Well, T does... but fails to remember what's needed and necessary for me to recover.  I really don't know how to take that.

I'm heading to the other room here in a few minutes, my retreat, my decompression chamber.  The day is somewhat overcast, which will make rest and relaxation a bit easier.  There's something soothing in cloudy days.  While I need and want and love those sunny days, the clouds are still welcomed from time to time.

Life... or Whatever.

NOTE: This particular entry has sat in my drafts for a few days, a couple of days.  There are times when I have to ask myself.. "Do I really want to share this?"and the reason is that wanting to and NEEDING to are two entirely different things.  I have to decide.  I have to know why I'm sharing.  I know it sounds silly to some, but my choice in the matter is for a very good reason.  And today I'm taking the FIDIAW (Fk it, do it anyway) stance.  Why not?

Let's get on with it then, shall we?

There comes a time when you have to make a choice between your health and happiness, and the PROMISE of health and happiness.  Knowing what the difference is between those two things is critical for emotional, and many times physical, survival.  No one, and I mean NO ONE is worth allowing your health to be torn down, your emotional health beaten and battered.  I've been here before, and I recognize what it is, and I'm not going to lay down and let myself be trampled underfoot.

Overt bullying is easy to spot.  Narcissistic behavior, once you know what it is, can be easy to spot.  But there are other delivery methods of delivery when it comes to destructive behavior, so you have to be very careful not to fall prey to the guilting that precedes that behavior.  Those many-times subtle clues can save you a world of stress, anxiety, and damage; heed them, or pay the consequences.

Past experiences with a narcissist has taught me much; not just about what to look for in terms of what's good or bad for me, but also in my own reactions to the information.  I don't always practice what I preach, because I am human and still not healed from the past experiences, but I'm at least aware of the decisions I make and what they can and will most likely do to my ultimate survival.  Being aware is a good thing.

There is nothing worse than being at the mercy of another:

After my last couple of relationships, one that lasted the better part of 11 years, I learned to despise having to depend on a single soul for anything.  And by 'depend' I mean for anything, be it emotional support, love, companionship, or even financial help if the proverbial shit hits the fan.  Many people have loving family, friends, and/or a significant other who is there for them through thick and thin, and in those kinds of relationships all parties on all sides do what they do out of love and compassion, not expecting anything in return for whatever help and/or support they provide.  Bonds like that are truly a blessing, but a blessing I know nothing of myself but for my sons.  Thing is about having kids, even grown kids with kids of their own, is that you do everything in your power to keep them OUTSIDE of the problems and worry.  My sons would worry horribly if they only knew what goes on in my life, and what I've gone through in the past.  They know very little, and that's because I love them and know they would worry themselves sick and make decisions at their own peril just to help me.  No.. I'm not about to do that.

Being at someone's mercy when your chronically sick is worse than any other kind of dependancy.  You find out quickly who gives a shit and who doesn't, and it will usually bring out the very worst in people.  I'm finding this to be the case across the board and have plenty of history as proof.  Not being comfortable to talk to anyone about anything, holding back the truth about how bad I feel, what's really bothering me, that I need someone to talk to, someone to just listen without judgment, just to be gentle at times, kind... is really a hell on earth, I have to admit.  But then, this isn't a new experience for me.

As my health declines, as my energy wanes, as I'm completely anchored to this house by symptoms of both AI disease and the treatments, as I watch life rush past me while I'm unable to participate, as asking for any help requires begging, reminding, and the 'guilt' that's pushed at me for having asked, I long SO VERY MUCH for the freedom of being single, living alone, and answering to NO ONE at all.  You're probably wondering how I could live alone and not ask for help if I'm having to ask for help NOW.. right?  Well, therein is the problem I have, and one that is so much worse than the illness I'm dealing with.

AI disease is forever, but relationships don't have to be:

Wow, yeah.. I actually just said that.  I suppose I've been able to recognize that I SUCK at choosing which men I become involved with.  So it only makes sense that I stop choosing at all.  Oddly, this is the decision I made after my last relationship.  I didn't need or want another relationship because I'd had just about enough of all it entails and found the price (paying with my self-esteem etc) was just too high.  So if there is anything I can actually STOP that's doing me harm, why shouldn't I?  After giving my all in this situation and the last, and still struggling just to maintain, I have to wonder at the insanity of that choice.  Right?  It just doesn't make sense to stay in a situation that is ultimately going to destroy you in the end.

I have absolutely nothing left inside---again.  How did I get here... again?

Well, foregoing the fact that the above is a rhetorical question, let me just say that I don't recognize anything good or uplifting in staying here.  I've developed an unwillingness to sacrifice myself again, and maybe because there's still a tiny part of me that clings to hope about some kind of future.  Whatever it is, it's a loud and urgent voice warning me to beware of who I give my power to.

I feel the need to distance myself.

This is also something quite familiar, a reaction I recognize as an act of necessary self-preservation.  My need to retreat, the need to just sink into some safe place where I can heal, be at peace, and turn my thoughts and energy to the possibility of having a much better life, a healthier life, by finding my way out.  This could just be wishful thinking, too...