Saturday, March 30, 2013

Vive les Mornings!

YES, vive the mornings and with them, the Prednisone hit that's now thankfully, down to 30 mgs/day, which allows me to actually get some things done.

Since starting on 60 mgs/day, then eventually down to 50, then 40, I have to say that at those high doses, (in relation to my body weight), the weaning was really nothing in terms of withdrawal and the fatigue and often, returned symptoms that usually go with tapering off of this powerful, hateful but life-saving drug.
When I hit the 30 mg mark however, things changed drastically and the days now go like this: I have my cherished breaky and fistful o' meds, check the pooter a bit and if the knees are good that day, (previously diagnosed osteoarthritis, due to the MPA), I put on my knee braces and hit la rue to walk hard and fast with dear Tony for a good 4 k's, which does our spirits both a buttload of good and no doubt, the ole ticker and bones too.

Then I usually have a nice hot bath, take care of whatever housely duties I can + virtual stuff and prepare the blessed luncheon.

This usually takes me up to 12:30-1-ish and little by little, by one or two pm, I hit the great wall and slowly but surely start to feel my eyes sting and water and my brow seemingly flex and twist up by itself with the burn and undeniable authority of extreme fatigue.   I observe the thoughts getting foggy and the muscles start to disagree with the bones and the coldness gets harder to shield myself from.

Gravity somehow becomes more powerful too at this point and wow, it's utterly incredible how fast I become punch-drunk-tired like I have never experienced EVER.  Partying, hangovers, jet-lag you name it--NOTHING comes remotely close this deeeeeeep drain and so I wanted to dedicate a blog post to its-----magnificence.

And if I understand things right, weaning down to 20mgs, (coming up in 8 days already--the goal being to stop at 10mgs/day), will be even more erm-----remarkable.  I think it's because my adrenal glands are no longer working normally and so my cortisol levels are not even near "the charts".   When the Pred runs out for the day, basically, so do I.  I must research this phenomenon more.

So I nap.  Or doze.   Or often just lie there thinking, observing, reflecting on things, scanning the Net on my phone, or read if my brain will allow it.  A lot of the time I'm just sorta zenning, often making mental notes for my "Positive Psychology Day" journal, (which is the practice of each day for a month, writing down five positive things and is supposed to reset things in one's brain), or petting Tone-Bone or planning wonderful snack time. 

It's a strange new life that's for sure, but wow, I gotta say that even with all the challenges, I'm so very happy to be living it.  Especially when I think of all those years of serious and crippling pain that went so horribly mistreated and so sadly undiagnosed.  Now, just knowing what I am dealing with is such a load off, I can't express.  One can't learn about what one doesn't know one has and MAN, have I been learning--and I've only just begun.  

On the subject of being happy to be alive, it's also absolutely soul-blowing how many fantastic, sweet and amazing souls have come into my life since it changed so much on January 10th.  People whom I cannot WAIT to meet in person, some whom I have already and I am so very grateful for them all.  They are showing me in no uncertain way that the Universe IS listening and wants to help me out and I appreciate it all SO MUCH.  You guys know who you are and when I'm better, look out, 'cause the hugs are gonna be off the hook! 

And then there are the more distant, "older stars", out there, dear friends and family who have been in my life for years who since the hospital have been helping me get through this crazy thing so much easier with every facebook check-in & poke, phone call, blog comment, email, postcard, message on the answering machine, audio-letter, bit of guitar playing or song sent, skype call or text or cel phone sms--to you all, I reach out across the ether and give my most heart-felt HIGH-SOUL-FIVES to!  Those transmissions are just plain GOLD to me and I thank you guys from the bottom of my mojo-tank.

I look SO forward to when my immune system is back online and if possible, I can hug each and every one of you in person as soon as I get the chances.  

You guys are like the mornings to me.

+++vibes & thanks,

: J


Anonymous said...

Et vive toi!!

: ))

Jude said...

What a heartfelt post Miss J., I'm so happy for you that you are at least now able to deal with your health issues and work at getting better.

I understand what a blessing it is to have people in our lives that care about us and are there for us when the chips are down. And there sure are a lot of people who care about you! :-)

Enjoy the weekend, Happy Easter!

Juanita Grande said...

Thanks much, Jude dear. :)

It's really been a helluva keeper day--and it's not even 4pm.

Just had my lil snack, gonna have a hot bath now and then have myself a lie-down.

You have a great Easter weekend too there and get yer egg-on good!

(((bunny-hugs 'n the very best o' vibes))),

: J

Frutchy said...

hi juanita it's funny to write this name because, juanita that's me! (too) sort of. U know... anyway we have only just met but it feels like I've known you all my life and I hope we will see a lot of each other walking the dogs and stuff ... justa ... juandering !
your courage and "positivude" are an example for me dealing with some small health issues myself. allow me to say that you look much better in real than on the picture :)
easter bunny hugs

Juanita Grande said...

Dear Janet,

How NICE to read your comment here!

I too am so very happy to have met you and look forward to our next visit.

It's a beautiful sunny day here and even though I am bleary-eyed with lack of sleep, I'm blissful and ready to enjoy it.

See you soon, my other Juanita!


: J

Anonymous said...

Four k with the puppy is great! Does this mean I do not have to walk super slow when we are kicking around Paris now?

Reona said...

Aww Nita! Thanks for posting! Much love to you and ((hugs)) on this Beautiful Easter morning! xoxo Spumone

Juanita Grande said...

Ohhhh, I dunno about THAT, Le Hee, as if I'm in my street clothes and lookin' fahiiiiine, ; ) I'd rather not be flooring it around town. Nice and slow, seeeeeee? Niiiiiiice and slowwwwwww... ; D

But yes, defo faster than we were going the last time we were together in Pareeeee. That was not a good knee-period, that's for sure!

Pet an elephant for me, ehhh?

: J

Juanita Grande said...

Thanks, dear Spumoni!

Always great to read you here.

Big fuzzy bunny-hugs right back atchya, friend,

: J

Anonymous said...

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Rocky said...

Thanks for the heartfelt post cuz. Your approach to this life-threatening illness is most admirable.
Just keep taking it one day at a time and you will grow into the answers you need to give your life the direction and meaning you need for the journey.

Juanita Grande said...

Love you, Cousin.



Anonymous said...

Your positive attitude in the face of daunting adversity is inspiring.

Looking forward to the day you blog of being energetic and pain-free.

Keep going!

Cheers, nobby

Juanita Grande said...

Thanks so much, Nobby and SO DO I!!!

I wonder what juanders will come in those times? : )

But for now, I milk the pockets of feeling fine...

Always good to read you here.

: J