life is still a rollercoaster after 3 yrs!

[berylj]

hi,i am sure i had wg for years before finally my kidneys almost failed & my gp who had some knowledge of it sent me to addenbrookes hosp. in cambridge, where they have a vasculitis clinic,
initial treatment was high doses of pred & immun suppress.the first 6 mths were horrendous!partly due to side affects from drugs,thanks to good
support from my gp & patience from my family(sometimes sorely tested)
i got through the worst,i would say to anyone newly diag. to take one day at a time, however bad you feel & sometimes you will wonder if you will get thru, my doc told me from the start 2 years is how long it takes to get it under control,you then realise life is changed,its THEN when you have to learn to live with it! after 18 mths ive relapsed, so back to pred, & more
frequent visits to clinic, talk about swings & roundabouts with this wg,
i am retired, so in many ways wg does not affect me as much as younger people with more active lives,
had monthly clinic app, yesterday, was asked to take part in research into
brain involvement in diseases that involve the immune system. sounds like fun!
wish i had found this site few years ago,we need all the support we can get,because its so rare, it can be very lonely & scary out there,
if i can help anyone get thru a bad day i would be happy too, often still needful myself!
i must stop waffling on! best wishes berylj

[Doug]

Beryl-

What a thoughtful, encouraging, yet realistic entry!

When I first had WG but was able to go to work again, I followed the postings of a fellow who came down with it in his early seventies. He'd been diagnosed a couple years ahead of me, so he'd had time to heal a bit. He'd returned to normal activities, was very upbeat, positive, a role model for me since I didn't know about any support groups (this one hadn't been started yet) and his life after diagnosis sounded wonderful. Then he died. The family noted this fact and I found his obituary in a paper local to his homeplace: neither indicated WG as the primary cause, but don't think that didn't send a panic into me!

The point: the more weggies stories you hear, the more questions you ask, the more weggies you meet (!), the more you interact with other weggies on support forums like this one, the more realistic you can be about this disease, its effects, and how it may affect you. Knowledge is power!

I hope you continue to post!

[berylj]

hope i didnt sound too saintly! after clinic visit im always upbeat for a few days,
tomorrow i will probably feel sorry for myself & swear at the walls that is the way it goes! but now ive found this site i can log on for a chat with other wg sufferers,
best wishes berylj

[Doug]

Hey! It doesn't hurt to come across like Mother Theresa as long as you don't believe it! Ha! As for the upbeat/downbeat business, isn't that the life of a weggie? I recently had a few symptoms. It put me in a somber mood, of course. Then they went away. I'll mention them to my WG doctor, but more likely than not, I'm still in remission. If not, well, I know the routine!

[Sangye]

Welcome, Beryl. I'm looking forward to hearing more from you, on a Mother Theresa day or not! (That cracked me up, Doug)

As far as swearing at the walls, oy. If these walls could talk.

[jola57]

Ah, I have been a bit quiet the last few days because ... here it comes ... I was feeling blue. Yes even I get blue once in a blue moon. I just felt like I have nothing to contribute and just feeling dumb. It didn't help that I was on my sleepless in Mission week. Thank goodness these blue days are so rare.
Beryl, I was diagnosed November 2006 looked at some other forums and this one by far is the BEST. No other like it. Venting, laughing, crying, joking, sharing, helping,
but most of all creating a family. Just knowing that someone is a stroke of a keyboard away is a great comfort. I don't have a WG specialist anywhere near and just a regular rheumy and my gp treat me, so the wealth of info here keeps me going.

[Terri]

[QUOTE=Doug;5207]Beryl-


The point: the more weggies stories you hear, the more questions you ask, the more weggies you meet (!), the more you interact with other weggies on support forums like this one, the more realistic you can be about this disease, its effects, and how it may affect you. Knowledge is power!

THANK YOU DOUG!
I WILL SEND THAT TO MY SISTER-IN-LAW WHO THINKS THAT I SPEND TOO MUCH TIME DWELLING ON MY DISEASE.

[Doug]

There is a saying, perhaps a bit harsh (you know your sister-in-law better than anyone else on the forum) that goes: You can't win an argument with an ignorant person.

Tell her what you will, but remember you are the one who wins by knowing your way through the maze of questions WG brings into your life. Main thing, don't let her cause you stress. You are on the right track for you, and you are the one having to learn how to live with WG.

[Sangye]

I agree with Doug. You've got finite energy (she does, too, but just doesn't realize it). Don't use it trying to convince her or anyone else why/how you are meeting your needs. I bet you'll find that once you stop defending yourself, she'll stop saying it.

When we don't set proper boundaries with others, we're actually extending an invisible invitation to them to bite our ankles. Put up a nice little picket fence and keep the yappy dog out.

[Geoff]

Hi Beryl,
Great to read your story. Like you I visit Addenbrookes in Cambridge and see either Dr HEwins or Dr Jayne. Stella, Jane, Karen and the others in the clinic are fanatstic and very supportive. As wierd as it sounds, I look forward to going there for my check ups as I feel SAFE and SECURE. Maybe I'll bump into you and we can chat over a coffee in the food concourse. All the very best, Geoff