Debbie

[Guest guest]

Thanks for the welcome! I'm trying to stay calm and rite now, I'm just

wishing the appointment would hurry and get here so my pelvis would quit feeling

like it's going to split in two! I am assuming this new pain is from my hips.

I noticed some minor discomfort a few months ago when I over did it bending or

crawling on the floor doing stuff like filing, or moving my computer around, but

now they hurt all the time, and the pain is getting worse. I practically live

with a hot rice sock on my lap. If it's not my ankles, it's my feet, or knees

or hands. Guess I'm done whining now. lol

Debbie Mc

[ ] Hi there!

> Hi all! I'm back on the list. I unsubed in December to rest more and

> hopefully rejuvenate. Unfortunately, it didn't help much. Still in and out

> of flares weekly it seems.

>

> Well, just three more weeks till my first Rheumy appointment. I'm scared

> and excited about this appointment. I'm scared he will say there is nothing

> wrong with me, and hopeful that finally I will be diagnosed. I do know,

> that with my initial blood work being normal just 6 months ago, the

> likelihood of him diagnosing me rite away is not very good. I sure wish I

> knew more about my Rheumy. His office is a 45 minute drive away, but he

> does come to his office locally for consultations on Tuesdays. I got lucky

> with only having to wait 6 weeks for my appointment. The scheduling

> department told me that he only does consultations in Salem. If I need

> treatment, I will have to go to Portland. Exactly what did she mean by

> treatment?

>

> I told you I was scared. lol

>

> Debbie Mc

[Guest guest]

Thanks for giving me the *slap* I so desperately needed. I won't cheat w/ Grant's band at all. I haven't yet and I won't. Thanks for the wake up call. His head really has some more rounding to do I'm sure and we have made it this far, so why quit. He'll be happy we didn't later in life. I am wondering if his head is rounding so well because he still has a BIG (bigger than a quarter) soft spot on the top of his head. The ped always comments on how great it is that it's still *wide open* at his age (10 mos). Thanks again for your encouragement!

, Mom to Grant (born 9/26/01) ...in DOCband since 6/14/02

[Guest guest]

>

> Thanks for giving me the *slap* I so desperately needed

:

Any time you need a good butt whooping, just give me a call!!! LOL

That's great Grant's soft spot is so open still! I'm sure that helps

his head rounding! Keep it up. Believe me, I know how sick of the

band you can get, been there.

Debbie Abby's mom DOCGrad

MI

[Guest guest]

, have you ever had the chicken pox?  If not, stay clear of those that have

them.  Childhood diseases are not what you want,  When I was pregnant with my

4th, I came down with the 7 day measles, got them from my girl friend's kids.  I

was never so sick in my life, pneumonia, sinusitis, pleuresy, and the day I

broke out with the measles, my kids broke out with the chicken pox.  What a

nightmare that month was, baby was born 3 weeks early, and had to stay in the

hospital for 6 weeks until all of the kids went through the pox and the measles,

my son had both at the same time.   So, beware my friend, do not go near them if

you have not had the pox, actually I have heard of people getting it twice!! 

Good luck, blessings, Bobby

 

From: Malseed <rodorbal@...>

Subject: [ ] Debbie

Date: Saturday, February 28, 2009, 8:20 PM

G'day Debbie,

I too endorse what my fellow compatriate Sue had to say. I wrote a diary

(not very good), but did record all the side effects I had from Glivec and

what I did, I refused to let CML run my life and still do. Life does get

better and I am now 18 months down the track. Sadly Glivec wasn't for me, I

could only tolerate 200mg, but I was lucky to be able to change over to

Tasigna and no entries in my diary since.

I well remember my first 4 days on Glivec - nothing happened for 3 days then

I woke up feeling like I had hit a brick wall front on and then struggled

for the next 3 days as in my job we were having an accreditation visit in 3

days. I don't know how I got through that day but I did and we got 20/20

which was even better! In the early days of Glivec I was so tired I would

have to sit in the car at lunchtime and sleep for 45 mins. I would set my

phone alarm and having the snooze helped me cope for the day. I am a night

owl and would have to go to bed at 9pm, but eventually that got better and

soon I was back to my old habits of not going to bed until midnight.

The only symptoms I had of CML was aches and pains in all my joints and

feeling tired as my initial white cell climb was found incidentally and I

had no other symptoms. About 3 weeks into having Glivec I woke up one

morning and found I didn't ache any more! Bone pain - well I was blessed in

that I only ever had a couple of slight transient aches in my arm, however

it seems the more disease burden you have the worse the pain as Glivec is

doing it's job killing off the nasty little phillies.

Throughout all this I have worked full time with a busy and demanding job,

shown my Labradors (they were the reason I got out of bed most days), have

sleepless nights whelping puppies and then had family staying for 6 months

and finally my husband had a stroke in August last year and I'm now his

carer.

Life goes on and we deal with it the best way we can. Life never stays

still!

Now - my daughter, her 2 children and a friend who is staying with me and

her 6 year old who has Angelman's syndrome (she was displaced by our

bushfires) have broken out with the chicken pox!!!!! So am I now going to

get them??? Que sera que sera.(sp)

The joys of living!

Regards,

from Down Under

#1149 Zavies Zero Club

Dx: 25/07/07

Commenced Glivec 400mg 27/9/07

Changed to Tasigna 800mg 3/8/08

PCRs:

23/01/08 - 13.01 %

14/04/08 - 0.08 %

12/05/08 - 0.02% (Glivec 200mg)

06/08/08 - 0.09 % (commenced Tasigna)

30/09/08 - 0.18 %

19/12/08 - 0.00%