hello from Boston

[Guest guest]

Hi Margaret and welcome to our group. I am on " digest "

and things being so crazy, I have just caught up on the week's email.

Here in Boston, we still feel affected by the terror of last Tuesday:

almost everyone, including me, knows one or two people directly

affected by the tragedy: it is difficult in

Boston to schedule a funeral these days. I was lucky and

knew that my family was safe on Sept 11-- but this morning we were

told on radio and TV that Attorney General Ashcroft advised that

Boston " may be " the target of some attack in the next 48

hours, so for the first time I am anxious for my children and husband.

It is probably another of these false alarms. One of my coworkers, who

is a Muslim, has been verbally harassed, which makes me sad ; another

today attended a memorial service for a 27-year old lost in WTC 2. I

have friends who live in lower Manhattan that seem to be living in a

war zone and are chronically depressed.

I was diagnosed two years ago but had my first RP flare in my

mid-20s but wasn't diagnosed until 20 years later. Although I

was 44 at my diagnosis, I do have a daughter who was born when I was

41 (as well as an older son) so I know how exhausted you can be with

young children and RP. I don't know about you, but I seemed to

have a major flare after the birth of each of my kids. One thing

I'm sure of: sleep is very important for RPers. This disease

makes us tired and it's very important to get as much sleep as we

need. Chronic pain is much harder to cope with when you're

tired. I know as a mother getting a good night's sleep sounds

impossible but it's important to strive for. I get my husband to do a

lot of the evening tasks, like getting the kids into bed, which helps.

My daughter often tucks me into bed. I do the morning

shift and get everyone ready for school/preschool.

I think that young people with RP may be more likely to go into

remission. Without any treatment, I remitted for 10 years and

only started to go chronic in my 40s. Let's hope with some

decent medical treatment you'll do better! It's important to

have a good rheumatologist--they're the ones who are more likely to

know of modern treatments for autoimmune diseases. Best of wishes to

you and the rest of the group, SUE

--

[Guest guest]

Hi Margaret and welcome to our group. I am on " digest "

and things being so crazy, I have just caught up on the week's email.

Here in Boston, we still feel affected by the terror of last Tuesday:

almost everyone, including me, knows one or two people directly

affected by the tragedy: it is difficult in

Boston to schedule a funeral these days. I was lucky and

knew that my family was safe on Sept 11-- but this morning we were

told on radio and TV that Attorney General Ashcroft advised that

Boston " may be " the target of some attack in the next 48

hours, so for the first time I am anxious for my children and husband.

It is probably another of these false alarms. One of my coworkers, who

is a Muslim, has been verbally harassed, which makes me sad ; another

today attended a memorial service for a 27-year old lost in WTC 2. I

have friends who live in lower Manhattan that seem to be living in a

war zone and are chronically depressed.

I was diagnosed two years ago but had my first RP flare in my

mid-20s but wasn't diagnosed until 20 years later. Although I

was 44 at my diagnosis, I do have a daughter who was born when I was

41 (as well as an older son) so I know how exhausted you can be with

young children and RP. I don't know about you, but I seemed to

have a major flare after the birth of each of my kids. One thing

I'm sure of: sleep is very important for RPers. This disease

makes us tired and it's very important to get as much sleep as we

need. Chronic pain is much harder to cope with when you're

tired. I know as a mother getting a good night's sleep sounds

impossible but it's important to strive for. I get my husband to do a

lot of the evening tasks, like getting the kids into bed, which helps.

My daughter often tucks me into bed. I do the morning

shift and get everyone ready for school/preschool.

I think that young people with RP may be more likely to go into

remission. Without any treatment, I remitted for 10 years and

only started to go chronic in my 40s. Let's hope with some

decent medical treatment you'll do better! It's important to

have a good rheumatologist--they're the ones who are more likely to

know of modern treatments for autoimmune diseases. Best of wishes to

you and the rest of the group, SUE

--