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.....