View Full Version : Hello
11-14-2008, 05:13 PM
Hey everyone, i'm Tabby from London U.K. I was diagnosed with Lupus in 2004 and since then its been....... (Don't really wana say)
It started off as joint pain, my knees first. Went to my G.P and was told i have artheritis! But as for my age then,19 he wanted a specialist to see me. The specialist diagnosed the SLE. At that time i didn't know what it was, never heard of it and didn't no anyone who had it.
Then came the joint pain all over, every joint was hurting. It got so bad that my mum had to turn me over when i was lying down.
Doc gave me steroids, which were a god send. I felt the worst was behind me and boy was i wrong........
At the start of 2006 i lost sight in my left eye, 2 months after that i woke up in hospital with tubes hanging out of me. i was in the ITU department of my local hospital. The Lupus had started to effect my blood which had caused blood clots in my kidneys, brain and my optic nerve (the cause of loss of vision). I had had a stroke.
I'm doing ok now but memory is a bit off so don't now if them dates are accurate lol.
Its taken me a long time to find people in the same boat as me, i don't no maybe i thought it would just go away. 5 years and it hasn't, i Just need to find someone like me to feel normal. I now it sounds stupid, but isn't it what we all seek...........
11-14-2008, 05:25 PM
and no that doesn't sound stupid at all. We've all had that experiance. Even though our families know that we are in pain and suffering, they do not understand the depth of it or the tiredness and how it can pull us down.
The constant change in how we are feeling and what we are able to do one day but not the next confuses the people around us.
This is a very warm supportive and informative group of people you have found on this site.
I'm sure the others will be along soon to welcome you. You'll find us to be fairly informal and friendly.
Feel free to ask any questions you may have or vent your face off :lol:
I'm 48 yrs old. I've had wolf face since I was 19 yrs old and various other rashes and sun sensativity.
Over two years ago I developed arthritis though out my body. The worst areas are in my knees and rib cage. They are now thinking I have psoriac arthritis.
Recently I found out from a cousin that my uncle had rheumatoid arthitis. Untill now I did not know that we had any family history with this. Psoriac arthritis is related to rheumatoid.
I am extremely tired today..so please forgive my horrific spelling and grammer and typing. It gets worse the more tired I am.
My mother had lupus and my sister has it. I'm still waiting on a diagnosis even though I've had a possitive ANA and a boardline ANA.
By the way I'm in Canada.
Looking forward to reading more from you and once again welcome to the site.
11-14-2008, 05:35 PM
Thank you so much for your kind words, they have brought a smile to my face :D
Its a nice feeling to now your not alone
11-14-2008, 06:02 PM
Welcome to the site. My name is Kathy and I have SLE Lupus and the doctors believe that I have had it since the age of 5 or there abouts. I will be 50 in December, so I have had this nightmarish illness for many many years. All of my joints are affected and have been for years. I am just getting over a cold. I just got over a flare and well I know that I will most likely go right into a flare right after I clear of this cold. I mean that is the way it goes for me most of the time. I am sorry to hear that you had a stroke. My younger sister also has Lupus and she had a stroke 18 years ago. I hope that you keep posting and you can say anything you like. We all understand how you feel big time.
11-14-2008, 06:09 PM
Thank you Kathy for your kind words
Your story puts a perspective on things. Hope you feel better soon. ( I apologies in advance as am gonna go into aunty mode here) try hot water with lemon, honey and ginger in it for the cold. Always helps me when i have a cold.
My name is Rob, and I was diagnosed with SLE five years ago. I live in New England, Maine to be exact. I actually don't live too far from Sits in the Corner, who I see you've already met. It's been five years of wishing Lupus would just go away for me as well. It hasn't. I get a flare every two or three days like clockwork.
Due to the effects of cognitive dysfunction (fog), my memory is pretty much shot too. It took me a long to to be able to talk with others about the disease. When I did, some people were supportive, others were not. But even the most supportive people in my life could not understand what it's like to live with this disease.
Then I found this site. This is the first place I have ever been where I could talk to others with Lupus. It has made a world of difference knowing I'm not alone. This is a place where you don't have to be worried about being called a hypochondriac, lazy, or just someone faking it and looking for attention. We are indeed all in the same boat here. And as far as being "normal", we all share many of the same symptoms, fears, and problems here, so you are pretty normal sounding to me.
Anyway, I just wanted to welcome you. Please make yourself at home here.
11-14-2008, 06:21 PM
Thank you so much, I'm overwhelmed by how nice everyone is. for the first time i can talk about whats happening to me with out hearing "ah you poor thing, it will be ok soon". :mad:
I thing maybe, just maybe i will find normality :wink:
11-15-2008, 02:30 AM
The phrase "normalacy" is relative...rolling around laughing here.
Any where but on this board I am abnormal....but here with all the shared symptoms bob's N bits ... I'm normal. Guess it's all about what crowd you run with. :lol:
11-15-2008, 07:39 AM
My name is Robyn. I currently waiting on official diagnosis, but found this place while doing research. Everyone here is wonderful. I have been able to have questions answered or just have silly conversations.
I look forward to getting to know you better. I love to chat, which makes this place even better!! :D
Talk to you soon.
My name is YPT and I am new to this site too. Welcome. Please feel free to get on here and chat because trust me, it helps. No matter how much your family and friends love you, they can never really understand what you are going through. Really, I don't even know how to explain it to my family any more so I have adopted this site as my new family. I hope you get to feeling better real soon.
Nice to meet you.
11-15-2008, 10:11 AM
Hello Tabby; :lol:
My name is Saysusie and I am the moderator/administrator of this site, which is dedicated to my daughter, Lauri.
You've already met some of our members and have seen how kind, supportive, and informative this family is. I just wanted to add my welcome to those that you've already received. I also wanted to reiterate that no question is too big, too small, or insignificant! It is not stupid to want to share with others who understand you and your illness and who will be able to provide you with needed answers and much needed support.
I'm glad that you found us and I hope that we can always be of help to you!
Peace and Blessings