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debstar
09-04-2011, 03:54 PM
Hi all,

Since I am 'lurking' around in the Forum, I figure I best introduce myself.

My name is Deb, we live in Western Australia and the reason I have joined this Forum is that my (much) younger sister has been diagnosed with Lupus. I have told her about this forum, after reading up on here and she has now joined also (YollyDolly).

As a family member I try to be as supportive, understanding and encouraging as I can, which in turn means I am researching and educating myself as much as possible on the disease.

I also hope that the forum will provide understanding and support for Yol, especially in a way that she can see she is not alone and many of you are going thru similar experiences (it is always nice to know you are not alone).

Anyways, I hope all of you are keeping as well as can be and I look forward to getting to know you a lot better.

Thanks for reading :-)

Debs

steve.b
09-04-2011, 05:40 PM
welcome debs,

i have a lot of admiration for family of sufferers, who are as supportive as you.

thank you for taking the time to find us.

it is great to have you here !!!!!!!!!!!!!!

Elo
09-04-2011, 05:42 PM
Hey Debstar! Welcome to the forum (: Your sister is lucky to have you in her in her life.
We have a section in our forum specifically for Friends and Family of people with SLE, and you're not the only one on here supporting a loved one.
I'm not sure if you've read the Spoon Theory or not, but if you're looking to understand more what it's like to live with a chronic illness, then perhaps reading it might give you a little insight.

Thanks for joining the forum and trying to be a supportive person in your sisters life - I'm sure it means a lot to her. It's very hard when people don't understand what you're going through - but even harder when they don't seem to care or believe that you're sick.

So, just, thanks. On my behalf and hers.

Spoon Theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/)

tgal
09-04-2011, 06:03 PM
Hi Debs! First let me welcome you to WHL! Has you have (hopefully) figured out this is a wonderful group of people who came here the same reason you and your sister have. It is nice to be understood and not feel lonely. It is nice to go when you have questions (even if they don't have answers someone will usually say "OMG that happens to me too!" LOL. You should be applauded for being so supportive of your sister and for trying to educate yourself. Many of us don't have that. As was mentioned before "The Spoon Theory" is a great way get at least a glimpse of how we feel sometimes.

Please feel free to look around. There is wonderful information in the old threads or if you have specific questions please feel free to ask! We are family here and I want to welcome both you and your sister to our WHL family. We really are glad to have you!

debstar
09-04-2011, 06:33 PM
Thanks for making us feel so welcome :-) I have read the Spoon Theory and agree it is a very good, nice way to try and get others to understand what it is like for all of you.

I think the main purpose I have at the moment is to try and encourage my sister to accept the situation/condition and in turn to be pro-active in trying to manage it.

I look forward to getting to know you all a bit better :-)

Debs

debbie-b
09-05-2011, 04:56 AM
Hi Debs,

You are an awesome sister.
This is just what Yolly Dolly needs right now, understanding and support from her family. I can tell you from experience, it does help alot.
There is so much we have to deal with, it nice to have someone close to you, who can help you deal with this ugly disease.

Debbie

magistramarla
09-05-2011, 09:27 PM
Hi Debs,
Welcome to WHL. As others have said, you are a wonderful sister for being so supportive of Yolanda. It will help her so much to have you learning about this disease right along with her, and when she needs an advocate, you can be there for her.
You are great!
Hugs,
Marla

Desleywr
09-05-2011, 10:06 PM
Hi Deb I have just joined today. Where is Stoneville? I live in Rockingham WA.

debstar
09-06-2011, 05:45 AM
Hi Desley,

Welcome, although that feels a bit odd since I am new myself :-)

Stoneville is in the Hills, just past Mundaring.

Debs

Desleywr
09-06-2011, 06:04 AM
A beautiful place! Welcome it is so nice that you are supportive of your sister. I have just finished a six week course for people living with a cronic disease. They main point most of us had was the lack of understanding and support from our friends and close family .... You are the rarity thank you and I have a great deal of respect for you and your support for your sister.

debstar
09-06-2011, 03:12 PM
Thanks for the compliments Desley, although they are not warranted. There is not much we as 'outsiders' can do and I have no doubt I am at times terribly annoying (ask Yol :-) as I try to instigate her to take charge of the situation and 'help herself' as much as possible. With this I mean lifestyle changes, educating herself on the disease, exercising, recognising triggers etc.

It seems to me that having a good understanding and control of yourself is/can be a great help in managing this.

Where did you do the course on Chronic Illnes? This may be another good option for Yol (and myself). I am always keen to learn more.

And yes, I love the Hills! It is peaceful and serene up here, although the kids tend to wreck the serenity ;-)

Debs

YollyDolly
09-12-2011, 03:10 AM
She has no idea how awesome she is and just how knowing someone is there helps! I like how she pushes me to find out about it because even though I whinge I know I have been better off knowing about the disease etc. Knowing that someone else is in some way going through what you are is an immeasurable amount if help and reassurance. Thanks guys!

Desleywr
09-13-2011, 12:51 AM
It was held in Rockingham and I believe they have more of the six week course. Why not contact her
Kellie Wilson
Living Well Coordinator
Rockingham Kwinana Division of General Practice
PO Box 252 Kwinana WA 6966
22B Pace Road Medina WA
Challenger Lodge 17 Read Street Rockingham WA
T: (08) 9439 9500 | F: (08) 9419 4805
www.rkdgp.com.au
Good luck

Saysusie
09-13-2011, 08:13 PM
Hello & Welcome YollyDolly and Debs - two sister who are so lucky to have one another :-) I am so glad that you both are here and you've already met some of our members and seen how warm and compassionate this place is.
I am also happy to hear that you are both educating yourselves about this disease, Debs to be supportive and YollyDolly to become and informed patient with the ability to be her own advocate.
Please feel free to roam around our site here, read the stickys and join in on any conversation that you like. Again....welcome to you both :-)

Peace and Blessings
Namaste
Saysusie

rob
09-14-2011, 11:11 AM
A beautiful place! Welcome it is so nice that you are supportive of your sister. I have just finished a six week course for people living with a cronic disease. They main point most of us had was the lack of understanding and support from our friends and close family .... You are the rarity thank you and I have a great deal of respect for you and your support for your sister.

There are many people in this world who do great and noble things. At the top of that list is a family member or friend of a person with Lupus who decides to be supportive, and tries their best to understand. The person who even if they cannot fully understand Lupus, sticks with you anyway. When I was first diagnosed, I had no support from anyone. The fear and isolation was overwhelming, and I almost didn't make it through that particular part of my life. If I had had just one friend or family member who tried to understand and be supportive, that dark part of my life would have been a lot brighter.

All of you family members and friends who stick with us, you are giving us an irreplaceable gift. It means the world to us.

Rob

debstar
09-14-2011, 04:01 PM
Thanks for all the welcoming and supportive messages. I feel humbled. I know I cannever fully understand Lupus, as I do not have it, but I will ontinue educating myself on it. I have a huge amount of respect for all of you living with this disease and take my hat of to you for the support you show eachother and the obstacles you all have to deal with.

I feel like I am slowly getting to know you all a bit, but there is also a small element of guilt being on here knowing I am so lucky not to be a 'sufferer'. Hence, I don't post to much in subjects I obviously do not have experience in.

In saying all this, we all have cards that are dealt to us that we have to manage & live with, including myself, but mine just happen to be from a different stack. (what I am trying to say here is that my life may seem ideal on this forum, but it isn't)

Debs

Debs

tgal
09-14-2011, 04:10 PM
Thanks for all the welcoming and supportive messages. I feel humbled. I know I cannever fully understand Lupus, as I do not have it, but I will ontinue educating myself on it. I have a huge amount of respect for all of you living with this disease and take my hat of to you for the support you show eachother and the obstacles you all have to deal with.

I feel like I am slowly getting to know you all a bit, but there is also a small element of guilt being on here knowing I am so lucky not to be a 'sufferer'. Hence, I don't post to much in subjects I obviously do not have experience in.

In saying all this, we all have cards that are dealt to us that we have to manage & live with, including myself, but mine just happen to be from a different stack. (what I am trying to say here is that my life may seem ideal on this forum, but it isn't)

Debs

Debs

NEVER feel guilty for not having this disease! You actually have more strength then many of us because you come here voluntarily. You come to help your sister not because you need any advice from us about your health. When you get this disease you simply HAVE to find answers. That is why we come. You, on the other hand, came so you could understand your sister. You are more strong then many of us.

Of course your life isn't perfect. No one's is. You have your own issues it just appears that your's does not have a name. Although we enjoy finding each other because it makes us feel less alone I can say, without a doubt, that not one member here would wish you to have this disease. We respect what you are doing and respect you for that. Feel free to ask questions or chime in. Just because you don't have it doesn't mean that you don't want to understand it. You do want to understand or you wouldn't be here

Nat
09-15-2011, 04:29 AM
Hi Debs,
So good to see someone being so supportive of a family member with Lupus. I, luckily, am in the same boat as your sister, by having fantastic family members who are so supportive. I also have a great bunch of friends and work colleagues who are all so supportive and understanding of the limitations this disease places on our lives. Unfortunately people aren't as lucky as your sister and myself like tgal and rob said but at least everyone knows they can come here and get the support they need!!

YollyDolly
09-15-2011, 05:01 AM
My col étude have been great so far as this is the first time it's all really flaring up since I was first diagnosed and most of tha family that I inform about it are pretty understanding but not many have taken to researching or educating themselves which is a big help because then you don't feel like you are the only one that understands what you are going throu and sometimes, well most of the time Deb is telling me more about the disease then I know. But I have been doing heals of research so getting to be a smart one onthe topic :) thanks!! xx

debstar
09-15-2011, 03:34 PM
You just need to listen to your sister Yol! :-)
xoxox