Re: Amy's email

[Guest guest]

Hi Amy,

I just had to say that your response to Helen was excellent! I think it

helps to have the perspective from one who is newly diagnosed, and you perfectly

captured the acceptance process!

Thanks for writing such a great email.

In a message dated 12/23/2003 6:36:41 PM Pacific Standard Time,

purr-fect@... writes:

> Hi Helen,

> I'm sorry to hear about your diagnosis but know there is hope, even when

> it looks hopeless. This group here is a lifesaver for starters. I was

> diagnosed in Sept, I'm 34 with 2 young kids ages 6yrs and 9yrs....and I know

what

> you mean about the fear factor of it all. My disease is fairly progressed as

> seen by biopsy, I have all the factors that can possibly lead to ESRD ....BUT

> like others have said it's not 100% for sure that I'll end up there. Right

> after diagnosis I would put my kids to bed and sit and cry for hours. Then

> I'd get on here, read thru the e.mails, and find that many of my fears were

> being amplified by my lack of knowledge of this disease. It takes some time

> but after a few months you'll find you'll get your head around it and take

each

> day as it comes. Learning you have a chronic illness is hard, you will go

> thru the grief process and that is normal, let it come. I'm also finding that

> each day is different, some days I have all the energy in the world, others

> I need a nap (or two) bad. The few months right after diagnosis when they

> were trying to figure out medications and dosages were the worst. Reactions

to

> medications and the constant adjusting of dosages can really set your body

> out of whack, and with it your mental state. Just remember to take care of

> yourself. Keep in your head that once you have learnt more about the disease,

> it's progression, and it's nuances, once your medications have been figured

> out, and once you have lived with it for a bit that it WILL get easier.

>

> I've noticed the same type of problem you describe with regards to

> becoming more intolerant to things as time passes. I went in for allergy

testing

> and they found nothing significant, however there are so many more foods that

I

> just can't handle eating any longer. Food dyes cause my b/p to rise,

> cinnamon and oregano make me feel ill, peppers make me feel horrid, and the

list is

> growing. The allergist didn't have any explanation for it and neither has

> my nephthrologist. My personal theory is that perhaps I had a tendency

> toward being sensitive to these things before and now that my body isn't

filtering

> toxins as easily the sensitivities are more pronounced. But like I said

> that's just my personal outlook on the problem. I just try to avoid those

> things I know cause problems or eat them in small quantities a few times or

less a

> month.

>

> Take care and we're all in the same boat round here.

> Amy