Re: The past week with Jan .. both high and low

[Guest guest]

Rick,

So sorry that Jan had shingles! My husband had it a couple months ago and we

were told that it could be recurring so watch out.

How lucky that you were able to get her and get the care for her that she

needed.

This is my fear for the future.. when you think your child is in a program that

you can sit back and trust.. things fall through the cracks.. not because anyone

is doing anything wrong.. but everyone isn't being vigilant enough.

Hard choices for parents... how to let go while still watching things.....

[Guest guest]

" further notes .. Shingles is an old person's disease "

I hate to disagree with you here Rick, but Shingles can be " caught " by anyone

who has had chicken pox. My brother had shingles when he was in his early 20's.

Tis a matter of " luck " . You do need to have had chicken pox first, but tis

something that anyone can get at any age. Yes- tis usually older ppl, but can be

anyone..........Shingles is allot more painful than chickenpox, and if caught

early can be treated so tis not so bad.

Aussie Leis- mum to nearly 12, Natasha 7 , 6 and Liliana

17 months

Life is too short for drama & petty things, so kiss slowly, laugh insanely, love

truly and forgive quickly

and FRANK wrote:

> Rick,

> So sorry that Jan had shingles! My husband had it a couple months ago and we

were told that it could be recurring so watch out.

>

> How lucky that you were able to get her and get the care for her that she

needed.

> This is my fear for the future.. when you think your child is in a program

that you can sit back and trust.. things fall through the cracks.. not because

anyone is doing anything wrong.. but everyone isn't being vigilant enough.

> Hard choices for parents... how to let go while still watching things.....

>

>

>

>

[Guest guest]

Wow....I'm glad that Jan is feeling much better.

Not sure though about the old people disease. My son had chicken pox at one and

then a year later he apparently had shingles and by the time I took him to the

dermatologist he commented " this is the ending rash of what looked like

shingles " which would explain the pain he was experiencing and I never could

figure it out. I'm glad that you were able to catch it and she was able to get

some medication to help.

Mattern

DOWN-SYN@...; ;

DS_Teens_Plus ;

From: rdill@...

Date: Fri, 13 Nov 2009 21:25:20 -0800

Subject: The past week with Jan .. both high and low

This is about my daughter Jan who is 36 and living as independently as

she can. It is just a look at some of the issues of independent living

.... and of some of the things related to her leukemia in her late 20's.

A week ago (friday)I was expecting Jan to come visit us for the

weekend, but she didn't show up. She usually has a ride with our local

handicapped transportation provider, Outreach. When I called her she

said that she wanted to spend the weekend on her own, but in the

conversation I discovered that she had been sent home both Thursday and

Friday by different staff at the program where she volunteers because

she had a rash that they thought might be hives and might be

contagious. We had received no calls about this and Jan in her usual

stoic fashion has simply put up with it, hoping that it might get

better. She suspected that the Advil she was taking for pain might have

given her hives and threw it out.

Well, I went to her apartment a half hour plus away and picked her up.

Once she got home her Mom immediately identified the problem as

shingles. The rash was laid out in a line from her back below the

shoulder across to her arm and down her arm to the base of her thumb.

The rash at this time looked remarkably like chicken pox. OK, Mom went

to med school when Jan was 10.

Last Saturday I got on the phone to see if her primary care physician

was working. I got the " help " nurse first who said that that doctor

wasn't working and could we start with a phone appointment. That was

easy and the doctor on the other end accepted the diagnosis and

prescribed pills and a creme for the pain and an anti-viral which might

reduce the time that the illness continued.

It's been a pretty interesting week. Jan is tough, but she rated the

pain at 8-9 (on the scale of 10) and she has a lot of experience. It

has gradually subsided to where it was at 3 or so last night and tonight

was just an itch.

She hasn't really been sick in the normal sense, sho she has been hiking

most days. Today she did a four mile hike on her own up and down hill.

That is part of the routine we've always used to try to keep her fit

enough to both build back from adversity and also to help bring strength

for what is to come.

I tried contacting the agency supporting her but was not able to find

anyone to talk to. Finally a couple of days ago I sent off a broad

email to multiple recipients about this incident and also about things

that seemed to be falling into the cracks such as money management,

paying bills, apartment care, etc. Jan is very self confident and

gives the air that everything is in control. The caretakers are

supposed to be able to see beyond this. Then there is the issue of no

communication with the parents (or apparently within the organization).

I got a very concerned call from the woman in charge of all adult

programs who has been wonderful at supporting Jan. Things will be taken

care of.

I am NOT mad and my inputs are to help both Jan's care and the

organization.

Background I didn't know was that when Jan was hiking on Sunday, the

week before, she complained about pain in her shoulder. She was with a

peer (with ds) and the other woman's mom. This shouldn't have triggered

anything, but it was probably the first sign of the shingles which often

comes with pain before the rash.

Rick

..... further notes .. Shingles is an old person's disease which occurs

to people who have had chicken pox and where the virus has hung out for

decades looking for a second attack. There is a preventative for it,

but most pople don't get that.r

In Jan's case, she had chicken pox when she was six or so. When she had

her bone marrow transplant at 30, she lost her immune system which is

part of the larger blood system. As we currently understand it,

replacing her blood system with her brother's gives her a totally new

blood system but does not transfer the immune system from the donor. We

have slowly given her some of the early childhood shots, but we hadn't

anticipated this.

My amateur guess is that with her immunity to chicken pox gone, the

virus came in for an attack. Hopefully, she will build an immunity to

this persistent virus from this attack.

It wasn't Jan's leukemia that made her susceptible, but the bone marrow

transplant. This story is not really applicable to those with leukemia

who are " cured " without a transplant.

Anyway, it is now pretty much over. We aren't expecting it back.

r

_________________________________________________________________

Windows 7: It works the way you want. Learn more.

http://www.microsoft.com/Windows/windows-7/default.aspx?ocid=PID24727::T:WLMTAGL\

:ON:WL:en-US:WWL_WIN_evergreen:112009v2

[Guest guest]

Thanks for sharing, Rick.  I love it that you share Jan and what is going on in

all of your lives regarding her experiences.

I just wanted to add that shingles can strike anyone, anytime, who has had the

chicken pox or exposure.  My identical twin sister, during a time of severe

stress in her life, had a horrible outbreak of shingles.  She was in her 20's. 

Both of us had chicken pox around the same age as Jan.  I have never had

shingles but I know from my twin that it is VERY painful.  Poor Jan! It may be

that the bone marrow transplant DID take away her ability to combat the virus,

but just to let you know... anyone who has had chicken pox can, under just the

right circumstances, have an outbreak of shingles, young or old.  The reason it

is called an old person's disease is because most young people's bodies DO fight

it better than the elderly.  But if a young person's immune system is

compromised (lifestyle, other illness, stress) they can certainly get shingles.

Thanks and I hope she continues to heal rapidly and that everything at her

placement is resolved in her best interest (and others!).

Blessings, Kiersten

 

[Guest guest]

Glad that Jan is feeling well again. My little guy is 4. The more I hear of

people with DS living independently, the more hope I have that my son will too.

Thanks for the info.