How does your Wegener's Affect your Family?

[pberggren1]

I guess I will have to find a friend to shower with.

[BrianR]

I'm very thankful that i have my father when it comes to thois disease. WIthout him, i wouldnt behere right now.

Other poeple in my family aren't exactly the kind of poeple to deal with these kinds of things. but w/e i have my dad to help me, and thats all i really need

What really hurts is when your peers at school talk down to you, thinking your making the whole thing up, and when you miss a week of school, they roll their eyes, and say " oh great your sick AGAIN?"

Thats when the pred kicks in and i can't help but give THEM the WG nose, hehehe....

cuz really, it's none of their business.

Check out Marta's t-shirts and hoodies on her blog at www.weggiesunite.blogspot.com There are some nice Pred Rage items there!

[Daggar]

A little "exaggeration" there Ginger ... but it's nice to be appreciated! I think you have to look into the mirror to find the #1 person responsible for you pulling through and doing as well as you have.... doctors a close 2nd....

Brian -- we have to decide on which one (roller coaster ride from hell seems to be the most appropriate).... how's Marta doing?

[Sangye]

Aww, you're such a great dad, Daggar. What a sweet thing to tell your daughter.

[delorisdoe]

I'm very thankful that i have my father when it comes to thois disease. WIthout him, i wouldnt behere right now.

Other poeple in my family aren't exactly the kind of poeple to deal with these kinds of things. but w/e i have my dad to help me, and thats all i really need

What really hurts is when your peers at school talk down to you, thinking your making the whole thing up, and when you miss a week of school, they roll their eyes, and say " oh great your sick AGAIN?"

Thats when the pred kicks in and i can't help but give THEM the WG nose, hehehe....

cuz really, it's none of their business.

Your post really got to me. I cant imagine how hard that would be at that age. I remember well people giving me the "you are faking it look". I find it hard to tell people about wg for a multitude of reasons one being I really dont get it myself so how could I explain it. Over the years I have just learnt to act as if its nothing. I can be pretty sick with it and I do my best to pretend all is well to avoid questions and that look. I have pretty much isolated myself because the only other option is to punch people in the face. I am thinking of all the things id say to peers if i was you. lol. good thing im not.

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.

[BrianR]

A little "exaggeration" there Ginger ... but it's nice to be appreciated! I think you have to look into the mirror to find the #1 person responsible for you pulling through and doing as well as you have.... doctors a close 2nd....

Brian -- we have to decide on which one (roller coaster ride from hell seems to be the most appropriate).... how's Marta doing?

I like the Roller Coaster one as well. Maybe Marta will design some new stuff on request??? And...her second rtx infusion went well yesterday and she is feeling no real ill effects other than tired. Now we wait, trust and hope it does what it is "supposed" to do.

[Sangye]

That's great to hear, Brian! Give Marta a big hug from me like this: But don't toss her around yet like this:

[DEE]

Thinking of you Marta graet news take care of you and your lovely family DEEx

[BrianR]

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.

Hana_MacKenzie_Rode.JPG

[Mitch]

I'm learning, as a caregiver from you. I'll pass this on to my husband, the patient....Thanks