Recital is on it's way!!!

My but it has been a while since I've posted here! Most of my posting has been over on my other blog: Mission Attainable
I'm thinking I may just switch to posting everything in that one.... hmmm..... That's still in debate, however.
But in the mean time, an announcement needs to be made!!

MY SENIOR RECITAL IS ON IT'S WAY!!! WHOOHOO! (My classical one, that is...)
October 28th, at 8pm.

Am I ready!?.. That's the question of the century....

More to come on this matter.... But for now... Bed.

New video: Tea Time!

After being diagnosed with ITP, my best friend and her hubby came to town to spend some time with me....... This is what happened:

http://www.youtube.com/watch?v=kDBJUZtNzlI

Zoe.. the new addition to the family

New Blog!

I decided to start a separate blog just for the ITP stuff, health in general, and recipes:
I've called it: Mission: Attainable (<-- click to see it, if you wish)


This will be for music. :)

(And just for the record... my kitten just walked off with my fingernail clippers...)

A constant up hill

This feels like it will never end! I STILL keep hoping one day I'll wake up and everything will be back and normal again. Alas.. it's not.
I now have a cold... fungus... my period is on it's way.. and my count was 31 on Tuesday. Blarg. I find myself getting mad at everyone just thinking about things... so I'm resolved to stay in my room today as to avoid head biting. I've never been this moody.... not ever. I suppose it's not the greatest idea to blog in my current state... I'm resisting the urge to just go off and rant about everyone and everything. Yeah... think I'll read....

Got a hema!!!!!

WHOOHOO! I finally got an appointment to see a hematologist! Granted... it's not until May 18th.. but it's something! AAAaaaannnnd it's at UC Davis Med Center.... I'm keeping my fingers crossed that he'll be a hotty just like the rest of them when I was there in March. :)
So until then, I'm on my own. I made the call last week to go to 40mg of Pred... and now I'm making the call again to go to 30mg. I haven't told the school doctor yet.... she might not be pleased with that, but hey! You just never know until you try, right? Everyone thought my count would drop more, but it didn't!. so you just never know what'll happen. Needless to say, however, I will be watching my body like a hawk.

Odd headache today... It seemed to go away after every time I peed.... what's that all about? And my pee looked a little cloudy to boot. I'll drink more cran water tomorrow.

I got my medical alert jewelry in the mail a few days ago and have attached it to my platelet awareness bracelet. It makes for a good reminder to me to BE CAREFUL and not go bumping into things. I'm getting better about that, though the new bruise on my leg will tell you otherwise... stupid end table!

Here's to high platelets!!!!!

Oh tomorrow! Bring me joy!

So here's a sum up of prednisone vs. platelet count:

Starting platelet: 14
Week one of 60mg: 88
Week two: 78
Week three: 95
So then take it to 50mg
Week four: 42
Week five: 35

Hhhmmmm.... I see a trend here..... It seems like the Prenisone works, but only in high doses... and that will never do. Despite everyones advice, I dropped the Pred to 40mg (two days ago). So far I haven't had any random bruising.... so I don't think my count has dropped any further (or at least enough to cause symptoms). Yesterday I decided to not eat wheat for a week and see if that helps.... I just have no idea, but I'm willing to try anything. I have a slight pain on my left side.. not sure what that is about... I don't think it's anything more than needing to go to the bathroom though.... I'm not worried yet.

Tomorrow I will go to the county clinic and storm down the door. :)
Oh to see a hematologist! That would be amazing..... This disease is impossible to manage on your own.

The tunnel got longer..... doh!

So my count went down instead of up (from 95 to 42).... and the doctor wanted me to go back to 60mg. After hanging up the phone with her and chatting with my mom, we decided to stay at 50g and see what happens.... And after chatting with other fellow ITPers, I feel like it was the right choice... Apparently your body does a "where'd the Pred go?" dance.... So I'm gunna dance that dance, and get off of this drug from hell! The school doc is just concerned for me.. and she doesn't know anything about ITP, so she's shooting in the dark here with this one....

Hurray for PDSA!!! It is a life savior! I am soooooooooooooooooo glad I found this website.... just amazingly fantastic.

Website is on it's way!

I finally broke down and started working on my website using iWeb.... it's simple and easy and gets the job done for now.. so I can at least have SOME thing.

www.janzenesque.com

Not done with the mood changes...that's for sure...

After a fantastic few days, we are now back down again.. and feeling really crappy, frankly. Not just emotionally, but physically as well. It's hard to put a finger on it, though... so I'm wondering if it has anything to do with the side effects of tapering the Prednisone... Yes.. that's right.. I said tapering. :) Finally! I'm at 50mg now (since Thursday)... lab work on Tuesday, so hopefully the platelet count will be the same or improved.... we'll find out soon enough!
But for now, I'm just trying to get through this quagmire of funkness.

Platelets up!

95! Alright! All time record for me. :) (So far as I know, anyway)
I have a doctors appointment scheduled for June 1st (though the county).. and hopefully from there I can get to a specialist. In the mean time, I'll keep getting labs done through the school and seeing the doctor there. I do believe we're going to discuss tapering me off the Prednisone tomorrow. Oh my goodness, that would be amazing! I've started hallucinating at night.... JUST like fever dreams when I was younger... expect without the fever. So yeah.... it's time to be rid of this stupid drug!

On another happy note, I started my period! Heheheh. Would I have ever dreamed that I would say such a thing? Nay, I say..
It's interesting... For the first time I really feel how nice it is to bleed. Usually being on your period means cramps and a lot of mess and hassle for 4 or 5 days. But because I've been so upset about being on the Prednisone.. AND birth control... that I was just completely relieved to have something "normal" back in my life. And because I'm simply enjoying that normalcy without caring about the drawbacks of a menstrual cycle, I can feel for the first time how nice it is. It's so hard to explain... It's like a release of negative energy... an unloading of a burden... a sigh.

I take far too much for granted when it comes to my body. I will stand for that no more. :)

The Man With the Umbrella

Yesterday I could feel a bout of depression slowing coming.. I knew it was the Prednisone, but there was really nothing to do about it... so of course, I started to analyze how I was feeling, and put it into a mental image/feeling.
What I came up with was a man, cloaked in black, standing in the front doorway holding an umbrella. Yes... that sums it up quite nicely I do believe.

Today that man finally walked all the way inside. Though I must admit, it's fun to joke about. I told my mom about it and once I finally broke down and she saw my tears I said, "The man with the umbrella finally came in!" It helps take some of the sting out of things.

Not working?

Yesterday I got a call from the school doctor, letting me know that my platelet count had not only NOT gone up, but in fact, went down... Though not by much.. It's in the 70's now. *sigh*
Thankfully, I can go to a REAL clinic now and then from there *fingers crossed* go see a specialist.
I will darned if I'm going to stay on this Prednisone if it's not working! .... we all know how I feel about it....

On a different note: Sailing was AMAZING! Gale force winds of 40 knots! HA! The last time our Captain was in winds like that was on the ocean... gooooood times! :D No one was going to let me do anything, even if I wanted to... so I just kicked back and enjoyed the roll of the sea.
We all got pretty soaked by the end with intermittent rain and crashing waves.
Then we docked in a different marina and had a double birthday celebration (for me and another friend), and we had the creepiest waiter any of us had ever seen! And he looked like Mel Gibson’s second cousin..... AND he had the hots for me.. for whatever reason, I could not say. Of all the women at that table, I was bar non the ugliest with my Prednisone acne explosion all over my face... But there you have it.

Then we all piled back onto the boat and night "sailed" home (We had to motor the whole time.... the crazy storm had passed and left us with no wind and a beautiful clear night sky).
Just a wonderful day and fantastic adventure, once again! Never a dull moment with this crew!

And then to boot! I actually slepted well and LONG! For the first time since coming home from the hospital! What a fantastic feeling! Sleep!

The side effects....

Today was a VERY good day. Got a lot taken care of in terms of school, work, and getting some financial help through the county so I can see a specialist! :D And tomorrow I reward myself with some sailing... aahhhhh... the whole thing that started this mess... Well... didn't start, really... If I hadn't of gone sailing two weeks ago, I might not have gone to the school clinic.. where I wouldn't of found out about my platelet count... and thus wouldn't have been the wiser to be careful about bumping my head or other body parts.... and then maybe would have done so, and thus MUCH bigger problems would have come up. ...... Like how that works?

Anyhow! The picture is how I'm currently feeling about the Prednisone... Yes, of course it's worth it... my count is up, right?... But oh man oh man.. the side effects are just killing me! I find out tomorrow if I can start tapering the dose. I have a good feeling it'll be the case... the only question is: Once I start to taper, will the platelet count remain up?.... It's the question of the year..... it should win an award.....

JItter jitter jitter

Today is the very first time I have honestly felt jittery.... and jittery is putting it mildly. I want to go bounce off the wall and do a dance, and chat a mile a minute. My leg is bouncing wildly up and down with no sense of time to the music I'm listening to... it's just going on it's own rocket pace. And emotionally I feel really good... too good.. *shifty eyes* I'm getting nervous that this is all going to have a serious down swing.... Ugh!

The cold that seemed to wiggle its way into my life hasn't done much. Slightly runny nose... and that's about it. Maybe the GOBS of zinc really did help... cause this is the lightest cold I've ever had in my life. But it's only been around for two days so far.... maybe it's just holding out on me and waiting to strike when I least expect it.

Sleep is CRAZY! Beyond awkward.... strange..... Really...really.... weird. My dreams make no sense (I typically have very cool, cohesive dreams... plot.. themes..etc..) if I even dream at all. Convenient for me, once the sun comes up seems to be the best time for sleep... about 3 hours.. from 6-9.... which is fine for now, being on spring break. But next week life needs to continue.. and life STARTS at 6am. Oh boy.... I foresee many naps at school...

Why I get sick...

Okay.. I'm on a drawing kick.

Chocolate Mint "Ice Cream"

Prednisone Coaster!!

So today is a euphoria day, to be sure. I'm not surprised, with the past few days being totally downers.. it made sense that an upswing was on the way.
I'm not the greatest at drawing... but this was fun and totally represents how I feel at the moment (and the effect on my family):
You've got me in the front, having a blast (currently).. my poor mother hanging on for dear life right behind. My dad, slightly less effected, but still holding on behind that. And then my brother, casually sitting in the back, looking off to the side... not effected at all. :)

Down day, up day

So yesterday I got NAILED with a bout of depression. It lasted into today, but is subsiding finally. I feel like it's more because of the birth control I'm on more than the Prednisone. So I'm going to go off it tomorrow... The doctors wanted me to wait till my count was up over 100,000... But you know what?.. They were at 60,000 for YEARS and I was fine.. so darn toonen I'll be fine now too! I have never in my life actually WANTED to have a period. O.o Who knew?



<-- Improv dinner cause there was nothing prepared in the fridge and I was majorly craving some greens:
Broccoli, ginger, zucchini, asparagus, mushroom.. lightly steamed and mixed with spinach, kale, almond slices, and a ginger sesame seed vinaigrette.

It was wonderful. :)

Breakfast of champs!

I've been adding raw, dark greens into my life... here's one of my personal favorites:

Mixed grains with some fruit (this is a cooked apple with cinnamon)
Banana, chard, kale, parsley, broccoli, spinach, a date, and raw coco powder mixed with water in a high power blender (vita mixer for me)...

Great Green Globs of Gofer Guts! HA!

Taste great.... but beware of making it for your friends.... Not the most appetizing looking thing in the world.....

ITP

Last week I was diagnosed with ITP... which stands for *big breath* Idiopathic (or Immune) Thrombocytopenic Purpura.. It means my immune system up and decided to start attacking my platelets. Why?.. Good question. Stress seems like an inducing factor, but it's hard to say.
I started getting these random, nasty bruises about two months ago.. which slowly increased in their frequency as the days went by. I've always been easy to bruise, so I didn't think too much about it (though everyone else was quite concerned for me).
Then a week ago I went sailing... had a wonderful time... and at one point (most likely while I was tacking), I bumped my arm. The next day I had a massive bruise there... I mean just MASSIVE. It looked like I got whacked with a baseball bat. NOW I was concerned....
So I went to the school clinic to get a CBC, and low and behold, my platelet count was at 14,000. And off to the E.R we go!
After MANY rounds of questions by the doctors (which ruled out other diseases), they finally arrived at ITP. They didn't know much about it, so there wasn't too much to talk about. They gave me Prednisone to suppress my immune system and give my platelets a fighting chance. I've been on it for a week, and my count is up to 80,000... so clearly SOMETHING is working. The only real drag is the side effects... Acne... munchies.... zombie like brain function (which doesn't help with school work)... very tired nearly all the time. At least with the munchies part I've been VERY good... I eat when I'm hungry, but it is all extreme health to the power of 10... I've actually managed to loose two pounds! Heheheheh..
Oh yeah.. and nasty medical breath.... Bleck!