Hiya Veej and everyone,

Not been here for a long time, and I am doing my best to come on every day and offer support as much as I can. Taking it a bit slowly, but it is so good to be back.

Take care.

godlenwings :angel:

Good to see you back! This place does help doesn't it. I have used it to rant and rave, get information, comfort and give comfort to others. Sometimes it just helps to talk yourself through things with people who get it. I love my family, and they are as supportive as they can be. Same with my work..I am VERY lucky, but well...they cant understand really.

I cannot imagine 30 years girl...just can't! Here I am only 3 years into it and already having to do IV cytoxan and solumedrol treatments monthly. This is my 3rd try at getting it under control.

I hate to ask, but how old were you whey they diagnosed you. I was just wondering, because my sister has SLE too. Her's is so different. She has had it over 10 years now and has just recently started to have to take daily medication. She was in her early twenties when she was diagnosed. I was 40 and it just took over so fast. I always wonder if the age is a factor. I am really hoping it will calm down soon.

Glad you are starting to bounce back! Take it slow and one day at a time.

Hi and thanks for the lovely welcome back.

I too have tried so many different meds over the years, some suited, some didn't. I have a good doctor in that he knows I want to control what I do with various meds and also tell him what I want to do for myself - my body after all hee hee !!

No problem re your question. I was 16 when diagnosed, but I came to realise that things had started 18 months-2 years before that. I would fall down on sports field and so on, never felt quite 'right' but hey I was young and nothing could touch me. At the same of my SLE diagnosis, I was also diagnosed with JRA, so it was very difficult. I stayed in hospital for 8 months and learned to do a lot of things all over again. When I came out I fought and fought - still do - to be me. My parents were the most loving, supportive and caring people, and they worked so hard to help me with physio at home and all the things that go with looking after someone you love. Emotional support is the best thing and I had it in buckets. We were told that I would never work, walk or do anything 'normal'. I hate that word. Afraid they said it to the wrong person.

I have lots of other medical problems, which mean that I am in a constant battle with my body. I can't do a lot of things, but the things I do, I do very well even if I do say so myself hee hee !!

As you know, with various types of lupus, the treatment for one typeis not always the treatment for another. For instance, I have SLE and am unlucky in that my internal organs are affected. I am restricted on what meds I take, because of the heart problems I am on stacks for that. Also plaquenil is out, because of the organ involvment. Some people have severe forms, others not so severe.

We have to rememeber that no 2 people with lupus will have the same symptoms. Even if you feel ok this week, next week you might feel like rubbish, but don't know what you did for this to happen.

I do hope both you and your sister continue to stay as well as you can be.

I tell my friend in the US who contacts me about things that she is a person with lupus. Lupus is not who she is. She is slowly getting used to that idea I think.

Wow, I have prattled on and on havent I ? Well take care.

goldenwings :angel:

I understand about the not being able to do things. I finally broke down and took my handicap placard. My rheumi has been trying to get me to go on disability. He says it will be a fast process due to my medical records and something called a "blue list". That I meet the criteria and it wouldn't be the battle I think it would be. I have just heard so many horror stories.

My mom has just bought this huge 5 bedroom house with plans for me to move in there. While I am fully aware of my declining condition, it is really hard to let go of my independence. I have a great job that I really love. I am really hoping this new med will have some effect on my kidneys and joints. My kidneys have just recently started to decline. They are also hoping to get my wbc count down to the 8,000 level. My Rheumi said that Cytoxan has been know to reverse the kidney decline. He has already ordered the HLA typing for a transplant just in case.

I am like you in being one of the unlucky ones with alot of organ involvement and plaquanil was never an option for me due to my eye problems. I would really like to be able to get my prednisone dose down to atleast 10mg a day. I have been on atleast 30mg a day for so long.

I also have scleroderma and it is having its own effects. The one thing I have learned is take it all day by day. Enjoy your better days, and hope that you don't string too many bad days together. Rest when you need to, and learn to say "No". That was the hardest part for me.

While I have alot of organ problems, my sister has always had more blood problems. She has recently really had problems with it. She has been having seizures from mini strokes.

It is so crazy how lupus has such a diverse effect. I also completely agree, lupus is a disease I have and it is a real pain in the a@@, but it is in no way who I am. I will fight it and fight it every day of my life to keep it that way too.

Hiya ESt,

Yaay, you go girl !!

I will write back later as it is 10.00 am here and I have lots of pc related thngs to do today, plus I am trying to sort out accessibility issues for the people who live in my village.


goldenwings :angel:

GW, So wonderful to see your post & to know that you are back home! It makes me feel substantially better to know that you're up to checking in here. I've been on the watch for you for weeks; so what you just heard was a transatlantic (thus faint) HURRAH. All my best to your hubby & you. Always, Vee

Hiya Vee,

Thanks for such lovely words. I am so glad to be back. I did in fact hear something yes I did heehee !! Good to be back.


goldenwings :angel: