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....