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04/18/2011 05:11 PM

weekly discussions

capecodgirl
Posts: 39
Member

Hi All,

I am new to this support group and since we are so few in numbers I am wondering if we can try and go online at a certain time, and day each week. I will try and check this website every Monday eve EST. Hope to catch a few people on line.

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05/18/2011 05:16 AM
capecodgirl
Posts: 39
Member

Hi All, I have been trying to reach out to many of you and I think I am having some trouble with some of my messages going through so I am sending a general post as many of our issues, concerns and fears about this disease are a common thread.

Prednisone gives us so many side effects and effect our self esteem(wt.gain, cushing face, irritability, sleeplessness) that we go off it. It gives me all that and more, but it is my friend because it really does stop the inflammation and make me feel better. Once that happens the dose is lowered to more tolerable levels. I also now take methotrexate so the Prednisone can be lowered still.

I am very fortunate to have found the Vasculitis Center at Johns Hopkins. There are only several institutions in the country that I believe have enough expertise in this area to most optimally deal with this disease. So please do yourself a favor and go to one of these Centers. I have found my overall health and treatment to be improved since going to JH.

I am so glad to see so much activity on this site and all of us reaching out for answers and support.

capecodgirl


05/19/2011 07:52 AM
mom2cutie
mom2cutiePosts: 24
New Member

Yes, I am so glad the site is coming to life. This disease is so rare and we all have such different stories that it will benefit all of us greatly to be able to communicate about our experiences. I hope to talk to more of you all.

Keep Positive Smile

mom2cutie


05/20/2011 10:47 AM
capecodgirl
Posts: 39
Member

Hi again,

Hoping people can go online on Mon. pm for a chat. I am in the EST in the US. Anyone have a time that works for them? capecodgirl


05/20/2011 01:23 PM
janiebeth
 
Posts: 3
New Member

Hi, i would love to chat.....im in the uk though so not sure on the time differences!!!! Im sure i can work something out as long as its not 3 am here or something silly!!

Jane


05/22/2011 06:40 PM
capecodgirl
Posts: 39
Member

I will try to turn my computer on around 6pm EST. I am still trying to figure out this site . I downloaded the mdjunction toolbar so I can chat. I'm really not that computer iterate so I hope this works out.

From the US to UK to Australia our struggles, fears and emotions are all so similar. We all hate Prednisone. I will always be on it but my goal is to go down to the lowest effective dose and to have as much control over my body. I know that I put on phenomenal weight with the Prednisone but that cannot be my excuse for overeating or eating the wrong foods. And I need to exercise whether it is walking or using my weights.

That being said it's time to exercise.....


05/23/2011 05:37 PM
capecodgirl
Posts: 39
Member

Hi Dian, I see that you are on line but cant see where to chat with you. Are you there? I will send you a pm

05/30/2011 11:06 AM
capecodgirl
Posts: 39
Member

HI EVERYONE,

Happy Memorial Day for those in the US. Don't know if I will see anyone on line tonight. Summer is here. That means shorts and the dreaded bathingsuit. YUCK!

I am going to start Lasix hopefully to drop some water retention. I don't think I'll drop the 40 lb. I've gained but anything will help.


05/30/2011 12:59 PM
Penny1041
Penny1041Posts: 8
New Member

Capecodgirl,

I have water retention as well,mostly in my left hand and left ankle. I am on a medicine that doesn't really help. In a way, I have just accepted the fact that I am not gonna be pain free or feel like I did in the past. Its a bad attitude in away but this way I dont get disappointed from having high hopes..

I hope your having a great weekend as well as everyone else in our group. Hang in there everyone!

Penny


05/30/2011 02:11 PM
mom2cutie
mom2cutiePosts: 24
New Member

It is so hot here in Virginia today. Mid 90s with lots of humidity. I did take my 5 year old son swimming today. Dreaded bathing suit for me to. I'm up about 30 lbs from last summer. Mostly due to the prednisone. But it is saving my life at the moment. I just have to keep remembering that. My blood pressure is under control with the new med and low sodium diet. Man, that is hard to stick to. Everything has so much sodium in it.

Hope you all enjoyed your weekend and what's left of our 3 day holiday. Back to work for me tomorrow.

Lenora

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