life is still a rollercoaster after 3 yrs!

[jola57]

Being completely devoid of Wegs specialist I see my rheum if I need to but its like shooting in the dark.

[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.

[berylj]

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]

That is one of the reasons I love you guys...we can talk about anything and someone always has a helpful answer.

[barbie279907]

Hi everyone i'm new to the support group and I need support.

[Doug]

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]

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]

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!