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View Full Version : life is still a rollercoaster after 3 yrs!



berylj
08-30-2009, 04:50 AM
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:rolleyes:

Doug
08-30-2009, 05:11 AM
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
08-30-2009, 05:46 AM
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
08-30-2009, 06:05 AM
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
08-30-2009, 06:19 AM
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. :o

jola57
08-30-2009, 06:35 PM
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.

Sangye
08-30-2009, 10:47 PM
Oh, Jolanta, I wish I'd known you were blue. I sure understand how it is.

I hope today you're feeling more like this : :) or (dare I wish for?) this : :D

I agree about this forum being the absolute best. I also belong to a Yahoo group, which I joined at the same time. It's just not the same at all--very hard to get a feel for who everyone is. The setup is discouraging. There's no way to easily look up other posts and follow threads. And no cute pictures! :eek:There are a number of people I'm quite concerned about on it, so I hang in there for them.

jola57
09-01-2009, 02:48 AM
Blue days rare as they are they still make me fill not like myself. After having a great time swimming in Harrison Hotsprings pool, I forgot my swimming suit, one that I realy liked, and I guess someone walked out with it. That may have percipitated my blue days. I still just can't believe that someone can steal a bathing suit, I am just so naive I guess.

Sangye
09-01-2009, 02:58 AM
I find that anything can trigger blues sometimes. I think we Weggies underestimate how much our bodies and minds are dealing with all the time. So sometimes it just takes something small to bring it all up to the surface.

I hope there's an even more fabulous bathing suit waiting somewhere for you to find it. :)

Geoff
09-05-2009, 05:58 AM
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

jola57
09-10-2009, 10:43 AM
Being completely devoid of Wegs specialist I see my rheum if I need to but its like shooting in the dark.

Terri
09-10-2009, 11:08 AM
[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
09-10-2009, 02:20 PM
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
09-11-2009, 12:53 AM
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. :D

berylj
09-11-2009, 06:23 AM
Hi doug
i was living in suffolk at the time of diagnoses 3 yrs now, luckily for me Adds, was my local hosp,when we found wg was a lifelong illness,then we decided to move to northampton to be close to my son & daughter,i said im not moving unless i can still attend dr jaynes clinic!i also had a brilliant supportive gp in newmarket, i now have a 2 hour drive to cambridge but its worth it, i understand the safe & secure part too,
we need a lot of reassurance, because it is a frightening & lonely disease at times,
the docs & nurses are also my heroes! dr rachel jones got me thru the 1st yr she now
does thurs clinics i attend fri monthly since a recent flare,
i hope you are doing well, best wishes berylj

Terri
09-11-2009, 10:01 AM
That is one of the reasons I love you guys...we can talk about anything and someone always has a helpful answer.

barbie279907
09-11-2009, 12:20 PM
Hi everyone i'm new to the support group and I need support.

Doug
09-11-2009, 12:51 PM
Hi doug
i was living in suffolk at the time of diagnoses 3 yrs now, luckily for me Adds, was my local hosp,when we found wg was a lifelong illness,then we decided to move to northampton to be close to my son & daughter,i said im not moving unless i can still attend dr jaynes clinic!i also had a brilliant supportive gp in newmarket, i now have a 2 hour drive to cambridge but its worth it, i understand the safe & secure part too,
we need a lot of reassurance, because it is a frightening & lonely disease at times,
the docs & nurses are also my heroes! dr rachel jones got me thru the 1st yr she now
does thurs clinics i attend fri monthly since a recent flare,
i hope you are doing well, best wishes berylj

Beryl- I'm doing well, but am sorry you had a flare! Anyway, I agree with your assessment of the medical professionals! There are some who need their faces rumpled or rubbed in reality, but the most are caring, over-worked, often under-appreciated marvels of humanity. I drive up to 4-1/2 hours for doctor appointments! (Now I'm down to semi-annual check-up with a doctor who comes from the next town over to a speciality clinic in my local hospital- not bad at all!)

Terri
09-12-2009, 12:46 PM
You certainly came to the right place for support.
Tell us what you need and something about yourself.
If you need to vent, depressed, need advice?
Let it out:)

DuaneHart
09-12-2009, 05:09 PM
Hi Barbie--welcome to the club.
I was diagnosed just a few months ago and am still trying to learn how to deal with this. I'm on Methatrexate and prednisone. The pred is about killing me--the sweating is unreal. My doctors assure me that I am making progress even though I don't feel like it. If I can just get rid of the extra 45 lbs I've gained since being on the pred would really help me feel better. You have found a great bunch of people here to help you!

Sangye
09-12-2009, 11:24 PM
That pred weight is just awful. Because my activity level is still extremely limited, I haven't budged it. It's a visual reminder of how this whole thing feels like someone hijacked my body. I wonder where they're hiding the old one. I'd like it back if anyone happens to find it in an airport locker or something. :rolleyes:

DuaneHart
09-13-2009, 01:31 AM
I was thinking about just taking a drive and see if I can find mine lying along side the road or in a ditch somewhere!

Luce
09-13-2009, 02:53 AM
Duane, the pred does get easier as and when you are able to taper, honestly.

I haven't lost any weight but the sweating, leg cramps and being wide awake at 3am have virtually disappeared now I'm down to 5mg of pred.
I still think I have a small amount of moon face and a slight hump at the back of neck/top of my shoulders, but my partner says he cannot see it.

Terri
09-13-2009, 09:31 AM
[QUOTE=DuaneHart;5574]
If I can just get rid of the extra 45 lbs I've gained since being on the pred would really help me feel better.

Believe me DuaneHart you are not alone.
I've been saying the same thing for two years now.:o
Just when I get down on the pred and start to lose a few pounds....along comes a flare and I have to go back up on the dosage.:eek:
At the present I am down to 7.5 mg pred and 8x2.5 methetrexate once a week. My moon face is finally starting to phase out some.
Hang in there. It will get better.

coffeelover
09-14-2009, 02:44 AM
Just when you look at your self in the mirror and think "not bad" moon face is lessened some one bursts your bubble!
I decided to go to church choir practice after 1 1/2 year absence (due to trach) and one of the members said to me after she asked me what my illness was and I quote "I thought there was something wrong with you because your puffy cheeks". ARGHHHHH! You can't win.
Oh Yeah...I am back and still on 10 mg of pred. Rheumy not ready to lower that dose yet.
coffeelover

Sangye
09-14-2009, 03:54 AM
It's always so difficult trying to explain pred to people. I can't blame them, really. The only type of steroids most people know about are anabolic steroids, that put muscle on you. Hard to explain that corticosteroids make you lose muscle and gain fat.

I'm convinced that unless someone has been on them, they can't really understand the degree to which they stimulate the appetite and convince your brain you're actually starving.

Even though I know I couldn't have, I still look back on my days on high dose pred and think I could have controlled myself better. :mad:

crackers
09-14-2009, 08:18 AM
sangye when i was on a high dosage of pred control was something that didn't exist.i was an eating machine especially chocolate bars and cakes,something i'd never previously eaten.i've been on 10mg since june of this year and my eating habits are now back to normal.in fact they are probably healthier.i've lost 7 pounds since the reduction and sue reckons i am beginning to look my old self again.i seemed to put on 50 pounds overnight but it's a lot slower coming off.
john.

Sangye
09-14-2009, 09:31 AM
I even ate in the middle of the night--something I'd always been repulsed by. Thankfully that stopped as the dosage dropped. I got about 10 lbs off without much problem, but not a single pound since. It just doesn't budge.

Jack
09-14-2009, 03:38 PM
You are obviously not ill enough. Everyone knows that ill people are thin and pale!

I'd say there was nothing much wrong with you. ;)

crackers
09-14-2009, 07:18 PM
that's very true jack.people have told me i look better now than before i was ill so i must be imagining all this.
john.