It happens. Every so once in a while I'll start an entry, just to be pulled away to deal with something else, only to come back and find it didn't make it into draft. That's okay. Probably not meant to be said anyway, at least not all of it. Still, the early morning entry I was composing was about something very real, and something that instills a sense of urgency on my part with regards to my situation. Even so, I had two doctor appointments today to contend with, and changes that did, or will be, due to those appointments.
The day wasn't bad. Today was just a day that needed to 'be' in the great scheme of things called my life. Learn from what I can and walk away from it with a plan, a new plan if necessary. Things change. As information changes, so does my take on how to proceed. And today was definitely one of those days.
Skipping the annoyance of this morning, I will say that my first appointment went mostly as expected. Saw the liver doc, an AWESOME doctor btw, and we assessed my reaction to tapering off prednisone. Since the symptoms of AIH returned beginning with the first taper, he said this is what is used to gauge ongoing treatment/therapy to bring AIH under control and into remission.. long-term.
Basically, as expected, he added Imuran (Azathioprine) to the mix, so I'm now on prednisone, an anti-inflammatory and immunosuppressant, AND Azathioprine, a very powerful immunosuppressant. The way this protocol works is that I'm to taper down from prednisone while increasing the dosage of Imuran (brand name, btw.. just easier to type. I'm actually taking the generic called Azathioprine). The Azathioprine dosage will increase as the prednisone decreases until the Azathioprine reaches my ongoing dosage of 150mg/day.
I also had blood work done to re-check liver enzymes, Aldolase (as it was once highly elevated a few months back, returned to normal a few months later), a complete CBC, metabolic panel, and a test for a specific enzyme to see how well, or IF, I will be able to metabolize the Azathioprine. Some people can't metabolize it and need to use something else, because the drug will literally build up in the system and cause organ damage, mainly to the liver; that's something we definitely don't want. Doc wanted to start the medication right away, but he is going for a 1/3 of the dosage to begin with, and when test results come back we can assess if I can continue taking it.
In two weeks I have to return for more blood work, and in one month another follow-up. The blood work in two weeks is basically to make sure I'm still metabolizing the new drug, even if the first test for the enzymes proves favorable.
In the meantime, I'm struggling with dealing with T situations. I'm not angry, mind you. Not today anyway. But I am incredibly disappointed that he doesn't take anything I say seriously with regards to what he does, doesn't do, says, etc. Things really do have to change or this will not be a long-term relationship, that I can tell you. And yes, he knows this.
Okay, so what I will say about this morning is this: I don't sleep that well at night for a few reasons, so waking me up at 5am for a 7:15 appointment makes absolutely NO sense whatsoever. This morning I was awakened by T, who said it was time to get up. I was groggy, out of it really, and tired as hell. But I simply accepted what he said and did my best to get up and get going. Thing is, I didn't need but 30 minutes TOPS to get ready to go. And what did he do? He woke me and then went right back to bed himself.
....?????....
I was up, moving about, bewildered, befuddled, groggy, tired, sleep and sore, and I realized that I was the only one up and 'getting ready' so went to find out what was going on. I certainly didn't 'need' to be up this early, so I assumed HE had a reason for me to be. He was back in bed.. sleeping. I asked him if he had fallen asleep by accident, and he said.. "No. Just going back to bed." Yeah, I wasn't real happy about this. I wasn't upset he was in bed when he didn't 'have' to be up, but I was irritated that he made a point of waking me, knowing I would never get back to sleep again.
Let me clarify this completely by saying... there was NO reason I should've been up at 5am.
Anyone who has insomnia for ANY reason understand exactly how precious sleep is, and draining sleep deprivation can be on a body that is chronically 'unrested.'
So why did he do this? I've no idea. I asked, and he said he thought I wanted to take a shower. Um, NO.. when I have an appointment THAT early that shower is done the night before. He knows this. Overly cautious on his part? I want to give him the benefit of the doubt, I really do. I just wish he would PAY ATTENTION to what I tell him so this sort of thing didn't happen. And again, if you think I'm being unreasonable, try going MONTHS with very little to no sleep and watch how protective you get with that vital and necessary process.
There's no way to bend or twist the events of this morning beginning at O'Dark:30. I got over it pretty quickly with the infusion of a few cups of coffee. But things didn't have to start out so damn badly. They really didn't.
Consideration. That's so very important to me. It's the sister of respect and vital to any type of relationship. Shit happens, I get that. Shit happens because we're humans living on planet earth and it's in our very nature to have shit happens. But a little respect and consideration goes a long way. I don't get upset with him or blame him when his snoring still wakes me up in the other room. He can't help it. Some people snore, especially guys. I wouldn't get upset if he had to go to the restroom in the middle of the night and woke me in the process. That's a natural body function and anyone who BLAMES a person for that is totally messed up in the head, plain and simple. But I don't see any reasonable excuse for ignoring when someone tells you something important.
I need sleep just like anyone else. Is that just too much to ask? Am I asking for the impossible by saying... Will you PLEASE listen to me when I'm talking?
*sigh*
Showing posts with label insomnia. Show all posts
Showing posts with label insomnia. Show all posts
Monday, January 11, 2016
The entry that never was
Labels:
AIH,
answers,
blog,
chronic illness,
compassion,
connection,
control freaks,
health,
hope,
indifference,
insomnia,
joy,
living,
lost,
self esteem
Tuesday, October 20, 2015
Sleep, oh those little slices of death...
....how I NEED them! Well, sometimes. This elusive and popular activity, sleep, keeps me at arm's length whenever I try to embrace it. It's taken a few appointments with doctors, and an orthodontist, to finally get to the bottom of the HEALTH-side of this issue. As for the other side, the emotional one, well... that may be more complex of a process. In fact, there's no "may" about it.
I'm sitting here at my laptop wondering...why I'm sitting here at my laptop. This is how sleep deprivation gets you. As the world becomes more surreal, the intuitive side and the creative side begin to meld together, thus creating a loss of place. Do you understand that phrase when I say it? If you do, you've been here in this garden in forever dusk. If not, I'm not entirely sure I could explain it to you where you'd actually understand. Just know that it's a lot like being in a dream while awake..and leave it at that.
This sleepless state changes my perception of just about everything, and in turn my attitude towards just about everything also changes. Emotional. There's just no two ways about it. But this emotion is both limiting and freeing, as the daily filters which keep our tongues in-check fall away. And yes, those filters are quite necessary in everyday, polite living among society. I don't worry about it overly much, because the more tired I become the funnier the world gets. And also more irritating. I don't think you can have one without the other in this respect.
Last night as I waited for sleep to rescue me, I realized this love/hate relationship I have with sleep depends on my level or worry, anxiety, loneliness, or the need to BE alone for a bit. I'm sure this is true for everyone, but I cannot tell you how impossible the act of falling asleep becomes when you, on some level, despise it! I'm working on that, but there is also a great deal of 'dealing' I need to do in order to get there. My quality of life is failing because of this unresolved nightmare. No pun intended.
I have hope now that the health aspect of this insomnia and inability to remain asleep will be resolved. I'm far too worn out to discuss it now, but I'm confident about this next step, next phase, next.. 'nothing new.' Truly. I've been here before.
You know what? I just can't sit here anymore. Yeah, it's THAT kind of day. lol
I'm sitting here at my laptop wondering...why I'm sitting here at my laptop. This is how sleep deprivation gets you. As the world becomes more surreal, the intuitive side and the creative side begin to meld together, thus creating a loss of place. Do you understand that phrase when I say it? If you do, you've been here in this garden in forever dusk. If not, I'm not entirely sure I could explain it to you where you'd actually understand. Just know that it's a lot like being in a dream while awake..and leave it at that.
This sleepless state changes my perception of just about everything, and in turn my attitude towards just about everything also changes. Emotional. There's just no two ways about it. But this emotion is both limiting and freeing, as the daily filters which keep our tongues in-check fall away. And yes, those filters are quite necessary in everyday, polite living among society. I don't worry about it overly much, because the more tired I become the funnier the world gets. And also more irritating. I don't think you can have one without the other in this respect.
Last night as I waited for sleep to rescue me, I realized this love/hate relationship I have with sleep depends on my level or worry, anxiety, loneliness, or the need to BE alone for a bit. I'm sure this is true for everyone, but I cannot tell you how impossible the act of falling asleep becomes when you, on some level, despise it! I'm working on that, but there is also a great deal of 'dealing' I need to do in order to get there. My quality of life is failing because of this unresolved nightmare. No pun intended.
I have hope now that the health aspect of this insomnia and inability to remain asleep will be resolved. I'm far too worn out to discuss it now, but I'm confident about this next step, next phase, next.. 'nothing new.' Truly. I've been here before.
You know what? I just can't sit here anymore. Yeah, it's THAT kind of day. lol
Labels:
answers,
body,
change,
deprivation,
finding self,
happiness,
healing,
insomnia,
life,
self,
sleep,
sound,
spirit,
subconscious
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