Fwd: Re: Welcome to cfparents

[Guest guest]

--- Mcesana@... wrote:

> From: Mcesana@...

> Date: Mon, 9 Oct 2000 15:44:50 EDT

> Subject: Re: Welcome to cfparents

> To: cfparents-owneregroups

>

> In a message dated 9/30/00 12:33:13 AM Pacific

> Daylight Time,

> cfparents-owneregroups writes:

>

> << cfparents-owneregroups >>

> Hi, all, I don't know whether I properly responded

> to my welcome to the group

> as I

> belong to two groups and two lists, and occasionally

> delete too much of my

> sent mail to check, so I'll try to duplicate the

> first E-mail. I am a

> 63-7ear-old mom with

> CF who has three grown " children " in their thirties,

> one of whom has CF also.

> I

> am a neuropsychologist, but am retired and on SSI,

> Social Security

> disability, and

> Medicaid, called Medi-Cal in California. We are all

> surviving, and of

> course, all

> my children are carriers. I live in Berkeley,

> California and am a widow (not

> due to

> CF) and have licved here off and on for forty

> years, spending some years in

> Oregon

> several years after my husband's death, working at a

> wonderful job. I became

> disa-

> bled, not due to CF primarily) in 1990, worked for

> nine months, and became

> disabled

> again. I have numerous conditions some of which are

> the consequences of CF,

> some of which have not yet been shown to be directly

> related, though I am

> diabetic,

> probably CFRD rather than Types I or II even though

> those run in my family,

> too.

> As I am Hispanic, we have mediteanean gene copies,

> and although many of my

> other relatives have CF, too, most are relatively

> long-lived unless they

> carry, in our

> case, a DeltaF508 gene copy. Many of my CF-affected

> first cousins (huge

> Sephar

> dic clan) are older than I! I have severe arthritis

> which may or may not be

> related to

> CF, and numerous other conditions that bore me

> (literally) to tears, so I

> would prefer

> not to get into all the details; we have time for

> those and they may come up

> as responses to the posts of others anyway. My CF

> " child " is probably

> slightly more

> affected than am I, but nothing stops her; she is an

> engineer! So I think

> what I want

> to say by discussing ages is that there is reason,

> given modern technology,

> for hope

> both for my child and for yours and sometimes I need

> support as a CF parent

> more

> than for me as a patient, having gotten well

> accustomed to that! Thank you

> for putting up with this long post, and thank your

> for this group, n

>

=====

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Do not walk behind me, for I may not lead.

Do not walk ahead of me, for I may not follow.

Do not walk beside me... just leave me alone.

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