Overdue Introduction

[annekat]

Hi, Al! Nope, no problem talking about bodily functions. My holiday was low-key, really didn't want to go out in what you drove through. My closest nearby relatives are in Disneyland right now, of all places. Curious about all the Portland/Beaverton/Arizona connections, and yes, when newspapers were newspapers..... I canceled my subscription to the Daily O a couple years ago. My mother, who grew up in Olympia, Portland, and Seattle, worked for the newspaper in Davis, CA, as a writer and editor. She learned her journalism skills in high school in Seattle.

I feel my Wegs is on the mild side, from what I've read of others' ordeals, except for the lung involvement, which could have really gone south but cleared up quickly on Cytoxan. And yes, I'm grateful for no kidney involvement at this point. Thanks for the pep talk, I may need it. I'll keep you posted, and yes, I can stand a little nagging from the right people.

Now, I just need to find some avatars. Your new one certainly looks northwesty.

Anne

[Al]

Hi, Al! Nope, no problem talking about bodily functions. My holiday was low-key, really didn't want to go out in what you drove through. My closest nearby relatives are in Disneyland right now, of all places. Curious about all the Portland/Beaverton/Arizona connections, and yes, when newspapers were newspapers..... I canceled my subscription to the Daily O a couple years ago. My mother, who grew up in Olympia, Portland, and Seattle, worked for the newspaper in Davis, CA, as a writer and editor. She learned her journalism skills in high school in Seattle....I feel my Wegs is on the mild side, from what I've read of others' ordeals, except for the lung involvement, which could have really gone south but cleared up quickly on Cytoxan. And yes, I'm grateful for no kidney involvement at this point. Thanks for the pep talk, I may need it. I'll keep you posted, and yes, I can stand a little nagging from the right people.

Yes, Anne, the Daily Zero is, like many another paper, not what it used to be. My daughter, got out just in time.

We all need pep talks, and we all need nags. And, according to my mantra, we need traveling buddies on this strange journey. (Still, you would have to use the phrase "gone south" to me, a Sick Old Man...!)

Al

[annekat]

Yes, Anne, the Daily Zero is, like many another paper, not what it used to be. My daughter, got out just in time.

We all need pep talks, and we all need nags. And, according to my mantra, we need traveling buddies on this strange journey. (Still, you would have to use the phrase "gone south" to me, a Sick Old Man...!)

Al

Sorry... I wasn't even sure "gone south" was the phrase I wanted to use. You look pretty well in your picture, and we're all sick.... but special healing thoughts go out to you for whatever your most troublesome Wegs issues are. (Oops, there's that "but you look so well" comment again!) BTW, I visited the WegMap and saw that there are more familiar names in the state of Washington than I thought.

Anne

[Al]

Sorry... I wasn't even sure "gone south" was the phrase I wanted to use. You look pretty well in your picture, and we're all sick.... but special healing thoughts go out to you for whatever your most troublesome Wegs issues are. (Oops, there's that "but you look so well" comment again!) BTW, I visited the WegMap and saw that there are more familiar names in the state of Washington than I thought.

Ah, yes, the "you can't possibly be sick" ploy...! Actually, I usually invoke the SOM phrase only on special occasions. Don't want to devalue the currency, you know. In fact, we are all (blessedly, if heartbreakingly, many are much younger than I) sick, as you point out. Yet we live, until we don't. So we dance with the hangman, as long as the music plays. Spin 'em up!

Al

[Rose]

[QUOTE=Al;50426]. Small world, indeed


Feel I must comment here. Here I am in South Africa, feeling quite isolated as far as this forum us concerned being the only person from this part of the world on here...at least active. Having this illness in common does make me feel like part of the extended family. Feel more so with this thread as my 23 year old daughter lives in Portland, Oregon. She went there to study 5 years ago. Loving living there but also misses home...guess both places have pro's and cons (eg Portland the weather, South Africa the crime) and one of the pro's in Portland is her long time boyfriend!

[Al]

Feel I must comment here. Here I am in South Africa, feeling quite isolated as far as this forum us concerned being the only person from this part of the world on here...at least active. Having this illness in common does make me feel like part of the extended family. Feel more so with this thread as my 23 year old daughter lives in Portland, Oregon. She went there to study 5 years ago. Loving living there but also misses home...guess both places have pro's and cons and one of the pro's in Portland is her long time boyfriend!

Geography is a funny thing, Rose. When my ancestors left the Old Country, they knew they were leaving for a lifetime, permanently breaking with everyone, and every thing they couldn't carry on the ship. It's not so much like that anymore. I have visited many parts of the world (not yet South Africa, alas), for business, tourism, or both. And I intent to travel more before I die. Still, I realize that loneliness is something we all face, regardless of where we are are whom we are with. My point was that the forum transcends geographical constraints, not that we are unemotional beings! Your daughter has followed her heart. But what about yours? What are your favorite pros and cons? But first things first: How are you doing?

Al

[mishb]

Welcome to the forum Anne.

Did I mention I love bubble wrap .........yes it's true and one of my brothers gave me a massive box full of it for a christmas present last year, so there is plenty to go around.

As Al mentioned, we all try to take care and help each other in our own little ways.

Rose, you are not alone, we are all here for you too, and in this 'cyberspace' we are all right on your doorstep.

And as for the weg map with the little country 'down under' ...........well, there's not many Aussie's on this little map...... where are you all??

[annekat]

Thanks for the welcome, Michelle! I really appreciate this forum and everyone on it! As I mentioned before, I would be lost without it, and the Internet in general for that matter, but especially the forum! I dread to think how limited my knowledge of Wegs would be otherwise. No, going to the library to look it up wouldn't cut it.

And Rose, nice to hear about your daughter in Portland! I hope you'll be able to visit her there if you haven't, though I'd recommend coming in the summer, and try to get out and see some of our magnificent Northwest scenery!

Anne

[Rose]

Yes, welcome Anne. Like you i was a lurker for quite some time but so happy that i eventually posted and became an active member of the forum. I don't really discuss my illness much with anyone as they really do not understand so it is great to vent, rant and share experiences here with people who are travelling the same road.
I know how beautiful your part of the world is through photographs that my daughter is forever taking annd posting on FB for my enjoyment, the most recent being photos of the trees with their beautiful autumn colours. Nothing she would love better than for myself and her dad to visit there. My husband is keen but I have lost all trust in my body and I am sort of scared to venture abroad in case anything happens.

Michelle, when I am on the internet, on the forum you could all well be on my doorstep as , as Al says, the forum has no geographical constraints. I think it wont be too long before I feel less alone here as I have recently made contact with the patient support group of the VF in South Africa. Apparently there are quite a few of us Weggies around so i am looking forward to chatting to some people and discussing the South African perspective and hopefully find a doctor with experience and one who cares.

Al I am doing OK. Down to 12.5mgs pred. Still have some sinus issues but much improved overall. We have had a long, hot dry spell here in Johannesburg which i don't think helped my sinuses but we have had some good rains over the past few days so i am hoping things will get better quickly now.

[annekat]

Rose, it sounds like you and I are doing about the same, 12.5 pred and some sinus issues. Though I am still on Cytoxan, having only been diagnosed in spring of this year. I want to taper to 10mg. but am not sure I'm quite ready. I had taken the 10-day runs of pred in the past for sinus infections, pre-wegs, and never had any idea about this problem of low-dose tapering after being on it for months. I was so surprised to read about people tapering 1mg at a time or 2.5mg at a time. It sounded crazy to me! Now I understand, and find it to be one of the hardest parts of the whole ordeal!

I'll probably post some pics of the NW for my avatar, when I get around to it.

Anne