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...

Seven Days.

It's an important number to me.  Every 7 days my dosage of prednisone decreases.  While I'm tapering from this extremely powerful drug I experience many unwanted side-effects, much of which I can't differentiate from AIH symptoms.  At 5mg/week my body became my worst enemy, leaving me unable to walk from the living room to the kitchen, making it difficult to walk the very short distance from the room I have to sleep in now to the nearby bathroom.  From unshakable episodes of freezing to feeling as if my body is going to melt into a puddle, I never know from one minute to the next what I'll be dealing with.  The turning point for me a few days ago was waking up before the sun in the throes of a migraine.

Tapering 5mg/week was simply not going to work.

Another call to the dr. and I'm told to go back up to 7.5mg and taper down at 2.5mg/week.  The morning of the migraine I discovered that with that 5mg dosage the migraine would go away, and it was that same evening that I added the additional 2.5mg.  While this seems like numbers and boring, dry information, I promise it's much, much more than that.  My entire quality of life depends on a tiny little pill that had the ability to make or break my life in every way.

On one hand it's a life-saver, and on the other it's dangerous as hell.  It's the drug people with AI diseases love to hate.

The usual thinking on getting off prednisone is to slow the taper the lower the dosage gets.  I'm unsure if I will be able to go down to the 5mg again, but I'll certainly find out next Wednesday.  Just how I'll find out is yet to be seen.  Will I feel better?  Will I feel worse?  Will there be debilitating symptoms again?  Or will everything go smoothly?

Without answers I can't make plans.  With each day being a giant mystery that unfolds one minute, one hour, one symptom (or lack of) at a time I am no longer really in control of my life anymore.  Prednisone now determines everything---basically, it's made me its bitch.

I can be honest about this.  I have to be honest about this.  I'm willing to face this head-on even if it means I'm the recipient, on occasion, of a TKO by a drug that is supposed to save my life.  I'll get up, face another day (albeit at times unwillingly), and keep going.

All of the above has affected my life.  Okay, I accept that.  What I don't like at this time is no support network, no one listening (not including who reads here) when I really need to talk.  If I could just feel good, be without pain, lead an normal life, I can handle the other stuff.

In the meantime I'm ticking down the hours in those 7 days to reach toward that goal of being off a drug that whispers it will save me, while making me feel as if I'm dying.

Seven days at a time... we'll see where I will be when I'm finally free of the prednisone shackles.

We will see...

Migraine...

Just when I thought I would be writing about something OTHER than this whole Prednisone experience, I end up with symptoms that will land me in bed the entire day.  It's a good thing I like coffee, because when it comes to migraines... coffee does help.

Then there's the nausea.  With prednisone withdrawal and migraine comes nausea.  It's a very bad day, I can tell you.

I took the 5mg dosage for the day, gagged down a little food (you MUST take Prednisone with food), and am praying that little bit will ease the headache.  So far, the headache is a little better than it was when I woke up, but I don't know if it will return when the Pred leaves my system (had a very short half life).  I can only hope and pray and leave my bed un-made and waiting.  Trust me, I'm going to end up back in bed VERY soon.

I'm also freezing.  This was also the case yesterday, and it's been like this off and on for the past week; also another side effect of Pred withdrawal.  There's just so many of them, and NONE of them are even remotely pleasant.  I'm waiting to find out from my doctor if I can taper off more slowly... much more slowly.  I can't just be an invalid until my adrenal glands catch up.  That won't work at all.

So how in the world am I handling this?  I'm not.  Just being honest here---but I'm not handling this at all.  Am I trying?  Sure.  Of course I'm trying, and I'm trying as much as my body will allow.  That's the best I can do; that and forgive myself for not being capable of doing the things that need done.  My animals are well taken care of, so that's the most important thing.  Dishes can wait.  Sweeping can weight.  The rest is incidental.

What I'd really like to see happen today is the cessation of this migraine (totally), allergies calm down so I can breathe better, and to be able to relax, actually relax.

...I'd also like a new pillow.