Sunday, August 05, 2007

Princesse and Infliximab; a Love Story

The girl in the picture, taken in 2005, did not know she was going to have a facial disfigurement that people in the street would stop and stare at. She didn't know what it was like to feel like a monster and a freak. She was an average girl, worried about spots, greasy hair and what she ate. She didn't know what the future held, and she didn't care. She was happy. This girl can't be brought back to life, she's been through too much now, been in some very dark places deep within herself. But the 2007 Princesse is stronger, and happier, more appreciative and has a new sense of self. Young Princesse can't come back, but her health can...

As I said a while ago, I was to begin a new treatment for my condition, as things were only deteriorating. The drug, which is called Infliximab, is fairly new, and is not prescribed for my illness, however, my wonderful doctor managed to find an infliximab specialist who was willing to take the risk by treating me (and let’s face it, it was a huge risk).

Last Tuesday I arrived at the hospital and prepared myself for the six hour stay while I was attached to an IV, feeding my veins with this ‘magic potion’.

Frankly I was terrified. It’s a newly discovered drug, and not tested on people who have my condition. It can also cause cancer of the blood. And, by the time I arrived at the hospital, I had convinced myself I would take an allergic reaction and that I was going to die.

But I didn’t take an allergic reaction, and I saw a difference in the lesions only 24 hours after the infusion. Five days on, and I am a different person. Although my lesions are still here, the swelling is going down and the redness is paling.

But what makes me want to cry with joy is the fact that my nose, is no longer swollen and lumpy, misshaped or disfigured. I HAVE MY NOSE BACK!!!!!!!!!!!!!!!!

Fair enough it’s still pink and not normal colour but I have great camouflage make up for that. The main thing is my nose has taken on its natural shape again and I think I might die with happiness.

And the crazy thing is that I’ve only had one infusion! The next one is a week on Tuesday and I’m very impatient to get back to that hospital and be attached to the drip and watch as the magic potion does what it should.

The storm is almost over and I really feel like I am the luckiest girl on earth right now.


Lis of the North said...

Wow, a brave AND happy Princesse. Am delighted to learn that maybe medical science has finally worked for you, and am hoping that the new treatment continues to go well. But whatever happens, remember that anyone whose opinions matter knows that you have a beautiful soul, and noses can't change that :)
take care xx

Princesse Ecossaise said...

Oh lovely Lis, thank you! I do have high hopes for this treatment and it feels wonderful to be able to have hope again. I can see the tunnel at the end of the light! Hooray!

I think after everything that has happened I will always know who my real friends are, the ones who didn't give a damn that I loked a little different, the ones that let me cry on their shoulder (and leave snot and mascara on their shirts mmm) I'm glad I've had to go through what I have, because without it I may never have realised how looks truly are unimportant. I was awfy vain I know how to appreciate what I have!

Gordon Scott said...

Sorry to hear about your problems and I'm keeping my fingers crossed here on Tiree that this medicine will work for you.

doow said...

I first came here just the other day after you left a comment on my blog. Your writing immediately sucked me in and I ended up reading quite a bit.
I look forward to learning more about you, but in the meantime I just wanted to say that it was great to read that the Infliximab is working wonders for you. Best of luck with the treatment :-)

Princesse Ecossaise said...

Thanks Gordon and doow for the kind words! I'm keeping the fingers crossed too and like I say, things have already started to change - it's a miracle!!

Doow, I like your blog very much, and I'm not joking but I would eat those biscuits you know! No idea what was wrong with them!:-p

Cheers for the support folks!

sugar007 said...

Not only are you a 'brave little soldier' but your experience has made you the person you are today!! Really pleased that the medication is working great for you, long may it continue..Hip Hip Hooray!!!

T.D. Newton said...

Hey, that is so great that things may be looking up for you and your condition. I'll keep my fingers crossed for you!

P.S. I'm glad you didn't die! If you had, none of us would ever know!! We'd leave sad comments like "why haven't you blogged lately? we miss your funny stories!"

Despina said...

So so happy for you Princesse! (You were never ever a monster or a freak because real monsters are people who look normal but actually have no hearts.)
You are an incredibly strong person and I admire you so much for coping with your illness so well. Best wishes, hugs, and a little tear for you Princesse,

Princesse Ecossaise said...

Oh Sugar I adore being called a brave little soldier haha! Although I shouldn't really take any credit for being brave - I'm a big scaredy cat!!!

TD believe it or not I did think about blog friends when I was leaving to go to the hospital. I told my brother that if I were to die he should probably write something on here lol...I'm a silypuss

Despina thankyou babe! Those are really, kind words, you're so very sweet :-) I think I know a real monster, she went to school with me. She looks quite normal but I'm almost certain she has no heart!

Love you aaaaaaaaalllllll