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jennyjo
10-10-2009, 12:13 PM
So I was diagnosed about 2 months ago and am VERY and bummed about this disease. I am so confused as to how it happened and if I had not done certain things, had I never came into contact with it? I just feel and wish there were some way I could have prevented all this. It is overwhelming. Although I physically feel great, I am still worried about what might happen. Can anyone shed some insight into what I am going through? Are there any newbies diagnosed too? I am very sad today ;(... Am I gonna die??

Lala
10-10-2009, 02:33 PM
You are going through a lot right now, you will be okay, you will learn alot. you will have good days and bad days, you will learn to be careful, and what you can handle and what is too much. There are lots of us who will be here with you, some of us can live pretty active lives, then we have rest and take it easy, everyone has different symptoms and reactions, we are here for you, you will get tons of support from lots of people, all over the world.
big (((hugs)))

bunnie
10-10-2009, 02:47 PM
Hi jennyjo!
I sent you a PM.... It'll get easier, not necessarily overnight, but you will get a handle on it. :yes:
None of us knows the number of days we have left. Not my husband when he leaves for work. Not my kids when they ride their bikes to school. Not my sweet baby as she explores this new world. And certainly not me, who is learning to love each day, whether in pain, or having a good day!
You are stronger than you think you are,
God bless,
Deb

SandyR
10-10-2009, 03:43 PM
Hi Jennyjo!
I am sorry to hear that today is a down day for you. Lala gave you some pretty great advice. Being sick and dealing with the diagnosis and adjustment is extremely overwhelming. Don't worry, we are here for you when you want to get things off your chest or ask questions or just know that you are not alone. (((HUGS)))
Sandy

Bonita
10-10-2009, 04:32 PM
Like everyone is saying you have your good days and bad ones so try to hang in there. Everyone has been so kind in this website and so helpfull and know one understands better than someone who is going through what we are. Love and Prayers Bonita

mountaindreamer
10-11-2009, 02:39 PM
hi jennyjo, you have seen the compassion that our members have, and our devotion to each other. Living with lupus requires some adjustments, and what we considered to be normal, is no more...actually, "normal" changes from day to day, but we all still have laughs and enjoy our good days. There is some successful treatment options that are already available, and there is hope that a new medication will be available next year. We all worry about whether we will die, or whether we will become so sick that we can no longer care for ourselves....but that is ok, because we also really really enjoy the good times. WHL is full of strong shoulders, we will help you start easing your fears.

dsunshine
10-13-2009, 04:05 PM
Hi Jennyjo!
Welcome to WHL...so glad you found the site...this site will become your bestfriend for when you are feeling and having a moment just as you are...TAKE ADVANTAGE OF IT!!! You will find compassion/comfort/support and more than all of that people who understand EXACTLY what you are feeling and going through. From flare ups/rashes/meds/doctors...whatever. This site has helped me get through some tough times...specifically the wonderful members who tell their stories/check on you or just read whatever your complaint or truimph is...A cyber family. I am just shy of a year (Nov. 13th 2008) being diagnosed with Lupus and the past year has been a test/testimony and blessing. Don't think about dying...think about living/being pain free and mostly about going into remission! Claim what is yours...YOUR LIFE and know you beat this...it does not beat you!!!
Welcome again!!!

Saysusie
10-13-2009, 04:29 PM
Hi Jennyjo;
Well, as you can see, this site is filled with people who truly care and who are truly understanding. As has been said, you will have some good days and some bad days. We are here for you no matter what type of day you are having.
Having Lupus has nothing to do with being exposed to anything or coming into contact with anything. That much is known, what is not known is the cause of the disease. It is a genetic disease, but it is not hereditary. Many of us believe that we suffered from its symptoms for many, many years before we were finally diagnosed.
Since you say that you are feeling relatively OK now, what you must do is to take measures to ensure that you remain that way. You will have to make some adjustments in your lifestyle (like avoiding the sun and fluorescent lights, avoiding undue stress, eat healthy, make sure that you get recuperative rest, take all of your medication as prescribed, and keep your doctor's appointments). It might be a good idea for you to keep a journal of your symptoms (when they occur, when they worsen and/or when they ease up) so that you can go over it with you doctor at your appointments.
There are many of us who have lived with Lupus for a lot of years (I was diagnosed in 1985) and we manage to maintain a reasonably normal life. So, it is quite possible for you to do the same. As was also mentioned to you, do not think about dying...think about living your life the best that you can! We are here to help you!
Welcome to our family
Peace and Blessings
Namaste
Saysusie

dsunshine
10-14-2009, 10:26 AM
Welcome to our family
Peace and Blessings
Namaste
Saysusie[/QUOTE]

Hey Saysusie
I just learned NAMASTE in my yoga class...and have been using it as a greeting to people. Have to say...Yoga is helping this Lupie body especially with breathing and feeling NORMAL/BALANCED. Didn't care for it at first but it is helping MIND BODY SPIRIT...Thanks for adding that...funny how you learn something and then you start using or seeing it....

NAMASTE TO YOU

Saysusie
10-15-2009, 10:17 PM
DSunshine;
I love Yoga and, as you mentioned, with these Lupus bodies, it is one of the exercise programs that we can safely participate in. I'm glad that you are enjoying it and I hope that you can stick with it.
I've always loved the greeting "Namaste" because it gives honor to yourself and whomever you are greeting! I'm glad that you like it too!

Peace and Blessings
Namaste
Saysusie