Thank you, thank you Beth

[Guest guest]

Beth, just hearing your story and your relating the " in between " has made

me feel so much better. I really didn't lose my mind. You're right about

nurses being bad patients. I've been doing things that I think will help me get

better only to find out that it wasn't such a good idea (walking the treadmill

for too long, running the vacuum, cleaning the bathroom), not that I've been

able to finish all these tasks, but for some reason I'm having a very difficult

time accepting that there are just some things I can't do right now. This second

hospitalization has made me start facing the limitations I now have and try to

deal with them reasonably.

This group seems wonderful. Just knowing there are people here dealing with

similar issues and that I'm not alone in a world that doesn't really understand

how I'm feeling. My family is wonderfully caring, but I don't think they quite

get " it " yet, but then again either have I.

Thank you again so much for your words of support. They couldn't have come at a

better time.

>

> ,

> Hi and welcome to Breathe Support! I'm sorry you have reason to be here.

>

> I completely 'get' and concur with what you're talking about. It's the " in

between " time that will make you take leave of your senses. I'm a nurse too and

I do think that nurses are notoriously bad patients. We know too much for our

own good sometimes. At least that's true for me.

>

> My own 'in between' experience was three and a half years ago when I

was newly diagnosed. I was 46, home from a nightmarish hospitalization and

waiting to see what was going to happen next. I had made all the appropriate

phone calls, the specialist in NY, the pulmonary rehab referral etc etc and

there was nothing to do but wait.  One evening I was talking to my sister on

the phone, expressing my frustration and she said, " I think the hardest time for

a patient is the time in between when a diagnosis is made and treatment

begins " . (She's a physician). Well she said that and I burst into tears like a

little girl. She had hit the nail on the head.  What I needed was greater

understanding of what was happening to me and what I could do to help myself.

>

> It sounds like you just had your own nightmare hospital stay. I hope that

things stablize for you quickly. If the fibrosis is minimal as they say you may

be able to get back to a relatively normal life for now. Hopefully for a very

long time.

>

> Where do you live? Depending on your level of confidence and comfort in your

diagnosis you may want to think about being evaluated at a university medical

center with specialists in interstitial lung disease. If you go to

www.ipfnet.org you will find a map with 22  " Centers of Excellence " across the

country. These centers coordinate research efforts and to some extent

treatment protocol for the more than 200 forms of ILD.

>

> Please feel free to express yourself or ask any questions here that you want

to. We understand because we've been there.

>  

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08