How does your Wegener's Affect your Family?

[pberggren1]

That's pricelss Brian. I too find cleaning and house work not a chore when I am able to do it. I actually enjoy cleaning.

[Sangye]

How does WG affect your family? Well...my 4 year old daughter summed it up today while we were skiing together. I asked her "now what do you want to do", intended to determine whether she wanted to go up the ski lift again for another run or call it a day. She said, and I quote directly as I remember it exactly..."I want to make my mommy's sickness go away".

I am not angry, annoyed, put out in any way or feel any added burden; (I have always LOVED vaccuming and do not understand those of you who think it's a chore!) I just want Marta to get better and will do whatever it takes. Same with my 4 year old. I sure as hell am not celebrating this crappy "thing" that all you wonderful people have to deal with every waking (and "sleeping") moment but it has brought our family even closer.

Here's a photo of Hana taken today at Marmot Basin while she was skiing and obviously thinking about her Mom. The antennae (sp?) are her braids woven up through her goggle straps. She has VERY long hair!

Peace all.

Attachment 914

Gosh Brian, I bet I'm not the only one tearing up reading that. Amazing how kids are always processing things, even when they look like they're involved in another activity.

What an adorable little munchkin Hanna is. I hope Marta gets stronger really quickly and can get back to having fun with you two.

[Daggar]

......leigh p.s. if i am correct it is your dad that does not like my unwillingness to lean on family and friends etc and this is why i am this way.

Leigh..... not me. What ever works for you -- we're all wired differently. Just don't "pretend not to be sick" to the point that you put yourself in danger...

[delorisdoe]

i found the post you responded to in my firts post where i commented that i dont share anything wg related with anybody.



Deloris, I'm not much help with knowing what the disease and treatment feels like -- my daughter is the unlucky one -- but your statement about keeping everything to yourself is very scary from a caregiver's perspective! You need to be able to communicate with those around you and let them know what is happening with you..... it makes a huge difference!

All i was trying to explain was that my reluctance to let anyone know of my disease has everything to do with what your daughter experiences at school. I cant filter who i will and will not share with so it just became easier to keep it all to myself. you said you find it scarry and my concern is that your daughter could isolate herself as i did and i thought that you would not like that so much.

I did not mean to sound harsh or offensive. I just read what she wrote and remembered myself ten years ago. Feeling isolated due to something few people understand can lead to what I have become.

oh and no wories...i dont pretend not to be sick to my doctors. well not really anyway.

leigh.

[Daggar]

Now I remember.... it was the "not letting someone know when you were sick" that set off the alarm bells...

No fear of Holly isolating herself -- she's very vocal about how she feels. She's fairly shy around people she doesn't know well so the attention she received when going back to school after such a long absence drove her crazy and still does.

She does have a circle of friends that have been together since Kindergarten and I know they confide in each other.

She doesn't post much -- unlike her D -- but she reads a lot of the threads from this site and that has helped her to understand that she's not alone.

This site and the doctors have helped me be there for her when she needs to ask questions.

Are you from Ontario?

[delorisdoe]

Yes I am from ontario

[Daggar]

Born in Renfrew ... spent 4 years up north of Kenora (bush country) for high school... moved to Alberta at 19

Most relatives on my side are in the Ottawa or Toronto area.

Seems like many, many years ago

[delorisdoe]

I suppose you could say I am from Toronto area

[ArlaMo]

My husband grew up mostly in Kenora! His dad owned a fly-in fishing resort on Delaney Lake.

[Daggar]

Wow... we lived further north up toward the town of Red Lake. My dad worked for STELCO fo many years and was transferred from eastern ontario up to the Griffith Mine which closed down back in the 80's.

I have friends who still have fish camps in the area (Lac Seul - English River - etc) and I usually haul my brother-in-law back every year for some serious fishing!! Great therapy!!

Kenora has changed quite a bit over the years.