Facts 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...

This Journey

It's incredibly hard to type these days--to do anything really.  I'm completely off the prednisone as of yesterday, so now I wait to see what comes when my adrenals have to go it alone without the assistance of that drug.  We'll see.

I sleep so much these days.  I toss and turn at night because of the pain in my body, sleeping sporadically and not deeply.  Tylenol has become my best friend again, though I know I have to adhere strictly to not going over the dosage etc.  But it's a necessary evil.  Early morning, when I'm able to take another dose, I wait for the pain to subside enough to allow me to fall back asleep and, hopefully, catch up on what sleep I did miss.  Still, in the morning when I rise... the weakness, the aching is there--always there.

Getting out of bed, getting dressed, finding my way to the kitchen, dining room... is not the easiest tasks these days and is worse as the prednisone comes out of my system.  My legs, arms, hands, they all shake until I have enough food or coffee in my system.  This is, I believe, another symptom of tapering from prednisone, as it greatly affects blood sugar; high when on it, drops when off.  It's just one more monster I have to defeat.

The prednisone weight is another issue but one that is, honestly, not nearly as important and FEELING better.  I'll be able to take the weight off when my adrenals aren't fatigued anymore, and I'm good with that. I have to be good with that.  But this horrible weakness and fatigue--it's so hard to handle, so hard to live with.  Hell, I'm really not living at all but simply--surviving.

I sleep so much.

I'm sleepy now.  I wanted to go right back to bed but got up too late to make that even remotely possible.  Plus, if I give in to sleeping all day long... I won't have an easy time coming out of that.  Prednisone cessation, after having been on high doses and on a long time, can also bring on depression.  Maybe this is what that is, all this sleeping.  Can't take anything for it even so because of the Eliquis.  Will have to just ride this out and pray it ends soon--very soon.

I want to live again.  Be happy again.  Thrive again.  I want my passion for life back so badly.

I'm so sleepy, so tired.

No Thoughts

What am I to make of this?  I know I'm really feeling sick today, very very sick.  Nausea has taken over out of the blue and I'm not exactly sure why.  It's not the Prednisone, because I take that with a meal, and it's not the Imuran, because I also make very sure I take that with a meal AND take it at night.  So what's the deal with my being this damn sick all of a sudden?

Okay, so it can't be the AIH, because I'm on treatment for that.  This is another problem rearing its ugly head, I can tell.  Alarms are sounding inside telling me that something isn't right with this.  The horrendous lower back pain that began a week or so ago is getting worse, MUCH worse, and I can't seem to get a handle on it at all.  This was an issue when I was anemic, so maybe that's returned due to the bleeding GI tract.  Yeah, so that was gross to mention.

But my mind is tired today as well.  I can't think straight, and it makes me exhausted trying to think at all.  Yet, here I am typing away in my blogs.  I guess I'm just making a valiant attempt at normalcy.... whatever the hell that is.

... ugh.

Drowning in coffee doesn't help

Two doctors appointments today, woken at 5am for no reason, sleep at the top of my priority list, yet sleep is out of reach for today.  When the night comes, it's my respite in time, though not in sleeping or dreaming.

Belonging to myself is the best thing I can do for myself.  I'm focusing on what I must in order to heal and survive amid the grasp of this ill-timed machine some call life.  God, but I am as tired as it gets today.

If only I couldn't gotten just a little more sleep this morning.  I'm tired of that phrase rolling about my head on far too many days.  I'm not even going to go into the plethora of ways T has found to make sure I wake, and wake, and wake beginning in the wee hours of every morning.  Why?  I've no answer to that, but I have spoken to him at great length about suggestions so I'm not repeatedly awakened by those things that really don't have to be as noisy as he makes them.

OMG, but I seriously need a good night's sleep.  On occasion I'm blessed with blessed, beautiful, and much-needed sleep.  But most of the time there simply isn't enough quiet and still to last throughout the night for me to get adequate rest.

I long for languid days, just a few of them.  If I can have days that promote stillness, peace, inner-sanctum, then I will rest easy on those nights.  It's not a difficult concept.  Is it?  I mean, is that really so lost on people that no one gets that when they disturb someone's sleep repeatedly it WILL take a tremendous toll on them eventually, that it's a matter of IF and not WHEN?  Really?

I will feel better when I'm finally able to lay my head down and feel the peace wash over me...

How tempting a vacation is from my life; how necessary; how perfect; how utterly insane it is NOT to pay attention to that one important and vital necessity to survival.

I'm running out of steam even as I write this.  And today is not the day to run out of steam.  Today I have to search and research and compare high-end exercise bikes for the home.  It's that time.  And dammit, how am I to exercise when I can't even sleep????

Shhhhh...

That inner voice needs to shut the hell up and think peaceful thoughts.

Sleep.
Exercise.
Healthy eating.
Healthy spiritual self.

God, please help me get some sleep today...

In the wake of a 12 hour night

Insomnia is the usual case for me, especially over the past year.  Very difficult to fall asleep, and even more difficult waking up.  It's not that I don't wake up, it's more that I feel like I've been hit by a truck when I do.  This has been destroying my quality of life for some time now.  And last night was an unusual event as I slept for about 12 hours.  I do have to say, however, that it wasn't an unbroken sleep.  But even if within that broken 12 hours I managed to get 11 hours, I can feel a bit of change today.  Hasn't resolved everything, but I feel somewhat different.  This has to be brought under control.  And this... effects EVERYTHING about my life.  EVERYTHING.

Sometimes, after I have a fairly decent night's sleep I wake up feeling odd, too aware of everything.  I'm not sure this is a good thing, to tell you the truth.  In fact, it's quite unsettling.  In the fog of sleep deprivation and other limiting health issues it's almost a Godsend to have reality blurred somewhat.  I know it sounds crazy, but you don't know my life.. not really.  My 'life' hovers on the edges of that blurred reality for the most part, and when the lines begin to sharpen around what I've been ignoring and the stark reality of what actually IS...my anxiety builds.  Why?  Well, isn't it obvious?  Frankly put---I don't like my reality.

Changing my reality:

I've not given up.  I'm searching for answers.  If those answers are WITHIN me, then those things are buried DEEP, because I can't seem to access them at all.  So what's next?  Yeah, you hear that a lot here, don't you?  If I had the answers to that I'd already being doing it, trust me.

Still, I have to compartmentalize everything these days just so I can deal; I think we all pretty much do this.  I guess the trick is to not completely seal everything off.  *shrugs*

Healing.  Healing is absolutely NECESSARY to getting back to myself again.  I have to heal in mind, body, and spirit.  No matter what, I will have no quality of life if I don't heal.  So how do I do that?  How do I heal while in a place that isn't conducive to healing?  THAT is the million dollar question.

I'm stuck:

What do I do?  Where do I go?  How do I start?  When do I start?  How long will it take?  Which path is right?  Will I find my footing?

There isn't a single soul around that I can talk to about this.  The few people I have to talk to I can't open up to.  It's difficult to talk to someone who's not listening.

There's nothing that instills mistrust in another person than trying to talk to someone about something critical, important and having them shrug it off as if it's insignificant.  I'm not a fool, and I can tell when someone really could give a shit less.  All it takes is once, and I won't open up to that person again...

"Sorry to hear that.  Hope you feel better soon."  Wow.  Can't tell you how much this one puts me off.

Platitudes are not only insulting and hurtful to me, but they make you look shallow and self-absorbed.  Seriously.

It's been said that we live in a 'ME ME ME' era, and I have to agree.  Opening up to another human being, wether a friend or relative, is almost pointless these days.  At least it's been this way for me.  And...this is why I have blogs.  Opening up to people usually just brings on the deadpan platitudes that actually make me feel worse.

Does anyone in this country give a shit about anything at all?

Even T is deadpan, self-absorbed to the point of not seeing or hearing or feeling anything about anyone around him.  Most of all me.  But I'm adjusting to that, which means... my feelings toward him are changing radically, and now... irreversibly.  He was warned about this some time back, so he knew the risk of maintaining the status-quo.  Once I accepted that I have to focus on myself in order to heal, to get well, to reach for a better quality of life, to be happy, hopeful, and vibrant... things became both easier and more difficult at the same time.  I never expected this to be easy.

Back to sleep...

My dreams tell all.  I tend to dream a lot these days, and I dream of a reality that isn't, or at least used to be, MY reality.  I'm never tired, sick, painful, or alone in my dreams.  When I sleep.. I'm exactly where I want to be in my waking life.  I know what it is that I want, and my subconscious is showing me every single night how vastly WRONG my actual life is.  Many times I absolutely hate waking up.

It's going to be a long process, reaching my goals, and I will have to remind myself each and every day what those goals are.  I will also have to do everything in my power not to give up, because what happens in the reality of my life makes me want to give up.  This isn't a good thing.  At all.

So, what now?