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Rubyslippers
12-19-2008, 07:49 PM
Hi,
This is alittle hard for me...I'm 34 years old and I have had Lupus since I was about 12 years old. I have never wanted to talk to anybody about it...but lately things are getting harder for me. I have had it all...pulmonary embolisms, renal thrombosis, menopause at 25, osteoporsis, nephrotic syndrome and all of the other joys of the disease. I've managed up to this point dealing with this on my own...but I saw this group online....and I was hoping that maybe some support from others, who know what I'm going through, might give me a sense of peace...maybe just knowing I'm not alone might help. So...Hi all...I'm Ruby. :roll:

rob
12-19-2008, 09:15 PM
Hi Ruby,

I'm Rob. I'm 40, and was diagnosed with SLE five years ago. You don't need to be concerned about whether you are alone or not with this, because you are not. I tried to deal with all of this by myself too, but I finally had to actually talk to another person who actually has Lupus. I went for a couple of years talking to no one. When I did decide to talk, I realized that despite the good intentions of those around me, the only person who could truly understand was another person with Lupus. That need led me to this site, and I've found friends and understanding here more than any other place, or group I've been around.

You mentioned, that things are getting harder for you. That seems to be the way this goes for many of us. We slow down, the opressive fatigue and myriad of other symptoms can drain us of every last bit of strength. Sometimes, when I can actually sleep, I sleep the clock around, and two hours after I wake, I can't keep my eyes open. I call it "lead blanket" fatigue. You feel so slow, heavy, and bogged down. But, I do manage to have some good days too, and that's enough to keep me going through the bad ones.

Anyway, I just wanted to say welcome, and make yourself at home. This is a really active forum, and I'm sure others will be along shortly to say hello.

Rob

Rubyslippers
12-20-2008, 12:30 AM
Thanks for the words. It has been getting harder for me lately...harder relating to people. I'm finding the common ground is not there. I've been dealing with Lupus and being sick for over 22 years...and I've always managed relationships with "healthy people" but now I've been struggling. I can't relate much to them anymore. I'm glad to be here. It will be different talking to someone who knows the world I live in. So, thanks for the kind words...and thanks for sharing with me. -Ruby

Rubyslippers
12-20-2008, 12:35 AM
messed up my editing...

Angel Oliver
12-20-2008, 04:57 AM
Hi Ruby and welcome!!

So glad you found this site cause everyone are so lovely here and we all understand what you are going through. YOU ARE NOT ALONE!! I am Angel and have been ill since 2004. I was told i had different named illness's but the most recent one is Lupus, but i am awaiting blood results. Please know i will give you support where i can and everyone here are very knowledgeable on Lupus.You will make many friends. Welcome Ruby....i understand!!!!

Love Angel.xxxx

sits_inthe_corner
12-20-2008, 12:36 PM
:D Hi Rubyslippers and welcome,

I'm not diagnosed as yet. Lupus runs in the family and I've had many of the symptoms since I was in my late teens, what I dont have is a doctor worth a fiddlers _____.

Any way

This is a great site, glad you found us :)

The Diva58
12-24-2008, 03:46 PM
Hello everyone you are kinda sorta my Christmas gift to myself. I have SLE and just got home from the hospital I had a tube placed in my heart I call myself the million dollar woman I have two others in both legs. I was diagnoused in 2002 with Lupus,but as I think back to my childhood I feel like I was born with some gene that causes it.I tell all my Dr.s I now rent my body from Lupus as it really runs the joint :lol: :lol: . I am 58 live with my Tibetian spanial,I named her Ms.Celie after a person in the Color Purple. I am not a very talkie person but I shall try to post as often as possible,so for now Merry Christmas to all.

Angel Oliver
12-24-2008, 11:40 PM
Hello Diva alias Million Dollar Woman,

I chuckled when i read that! Welcome and hello to this site.Oh and Merry Christmas too. Everyone on here are lovely and very knowledgeable about Lupus.My name is Angel and have been sick since 2004.I am awaiting blood results in January, but the doctor says i have Lupus.They said i had M.E before so i shall wait to find out.
I hope you have or try to have a lovely day today and i am so glad you found us.

Love Angel.xx

sits_inthe_corner
12-25-2008, 05:26 AM
Welcome Diva58,

Glad you found us...we all float every once in a while and then rise to the surface to post. Alot depends on how we are feeling.

Sometimes the most I can to is read as I get very foggy and forgetful when I try to form a thought for a post.

Every one here is very kind and understandy.

Danica01
12-25-2008, 10:15 AM
Merry Christmas Ruby!!!! We are all here to get you through all of this :wink: You are not alone and we will continue to hold your hand gently as we all navigate our way through this illness. I am sending happy thoughts and gentle hugs to you on this beautiful Christmas morning :x-mas:

Saysusie
12-28-2008, 08:30 AM
Ruby;
Hello and welcome to our family where, as you've seen, everyone certainly understands what you've gone through and you are most certainly never alone. I think that many of us, when we look back, have come to understand that we've suffered from the symptoms of Lupus for many, many years before we were diagnosed.
I was diagnosed in 1985, but I look back at my High School and Jr. High School years and have realized that the many illnesses, aches, and pains that I suffered then were probably due to Lupus and the doctors just had no idea. They blamed it on my age, my physical activities (I was an athlete), and, of course, my imagination!
I am glad that you decided to join us. You will find people here with a wealth of information, limitless understanding, a genuine desire to comfort and an unending gift of caring. There is always someone here when you need to talk and this is a place where you are never judged, never dismissed and are always welcome. You Are Not Alone!

Peace and Blessings
Saysusie

Saysusie
12-28-2008, 08:35 AM
Diva58;
Welcome to our family. I know exactly what you mean by renting your body from Lupus. I've never thought of it that way, but it is such an appropriate description :lol:
Since you are the million dollar woman, that means that you are a very valuable person. We want you to know that you are not alone and that you are certainly valuable to us.
I am approximately your age and have been diagnosed with Lupus since 1985 (although I think that I suffered from Lupus for many years prior to that). We both have many many more years ahead of us and so it is important that we continue to take very good care of ourselves and that we learn how to manage Lupus (and its varied overlapping illnesses) so that we can continue to live a relatively normal life.
I'm glad that you found us and that you decided to join us. You will find that this is a place where you are always welcome and were everyone is dedicated to helping you in any way that we can!

Peace and Blessings
Saysusie

rob
12-28-2008, 05:36 PM
Hello everyone you are kinda sorta my Christmas gift to myself. I have SLE and just got home from the hospital I had a tube placed in my heart I call myself the million dollar woman I have two others in both legs. I was diagnoused in 2002 with Lupus,but as I think back to my childhood I feel like I was born with some gene that causes it.I tell all my Dr.s I now rent my body from Lupus as it really runs the joint :lol: :lol: . I am 58 live with my Tibetian spanial,I named her Ms.Celie after a person in the Color Purple. I am not a very talkie person but I shall try to post as often as possible,so for now Merry Christmas to all.

Hi Diva,

I like your analogy of "renting" your body from Lupus. For me though, I gave up renting it and I now steal my body at gunpoint from old Mr. Lupus whenever possible. I'm glad you joined our group, and I just wanted to say welcome!

Rob

Rubyslippers
12-28-2008, 08:08 PM
Thanks for the kind words!
I'll get you my pretty...and your little dog too.

KathyW1958
12-29-2008, 04:55 AM
Hi Ruby and Diva,
Welcome to the site. My name is Kathy and I have SLE, Lupus too. It is a very hard illness to live with at times. I am glad that you found this site. There are a lot of really nice folks that come in here and it sure helps to be able to talk with folks that understand what we are all going through. I hope that you two keep posting.

Hugs,
Kathy