Anyone Else Here With SLE Lupus ?

Hi, Noel! Just wanted to say hello, send along a few (((cyberhugs))). I hope you're well.

Perhaps others will see your thread in these wee hours of the night/morning and join in.

No, I don't have it --- that I know of! I have a friend who has it and she really has a lot of problems. It's up and down and up and own. I really feel for you!!! I hope that others will come on here and share their experiences with you. I wish you all the best!!!!

On 10/8/2014 dooBdoo said:

Hi, Noel! Just wanted to say hello, send along a few (((cyberhugs))). I hope you're well.

Perhaps others will see your thread in these wee hours of the night/morning and join in.

Hi dBd! Thank you so much for the hugs... backatcha (((( dBd ))))

On 10/8/2014 AngelPuppy1 said:

No, I don't have it --- that I know of! I have a friend who has it and she really has a lot of problems. It's up and down and up and own. I really feel for you!!! I hope that others will come on here and share their experiences with you. I wish you all the best!!!!

Hi AngelPuppy Thank you for the hello! I'm sorry to hear about your friend, I hope she's been having good days. There may not be anyone else here with SLE, it's not very common. There is one other person that I know of over on Viewpoints.

Hi, NoelSeven. I, too, have lupus (along with Sjogren's Syndrome and Raynauds). I agree that many people don't know much about lupus. It affects us in so many ways and it really is hard for others to understand...especially when on the outside we look okay! I hope you're doing well and feeling good.

On 10/9/2014 cag said:

Hi, NoelSeven. I, too, have lupus (along with Sjogren's Syndrome and Raynauds). I agree that many people don't know much about lupus. It affects us in so many ways and it really is hard for others to understand...especially when on the outside we look okay! I hope you're doing well and feeling good.

Hi cag

Thank you for your response! I'm sorry you have Sjogren's, I know that's a common accompaniment with lupus. I have Raynauds, also. Our season of real trouble with that is coming up. I suppose you already know the quick treatment of putting your hands in the dishwashing tub of warm water, or just regular warm water in a tub or sink.

I'm ok, it's a day to day thing, as you know. The up-and-coming holiday time is hard for me. All the stress and work of doing so many things.

I'm not able to take Plaquenil, so I'm winging it on my own. Are you able to take it?

I hope you're doing OK, also.

Noel

Noel,

I used to take Plaquinil, but it wasn't working for me. I'm now taking Cellcept, among the many other medications. I honestly can't say that I feel any better with the Cellcept, but my levels are all a little better than when I was taking Plaquinil.

I know what you mean about the upcoming season. These last few days have been a preview of what is to come. Thank goodness for the hot water. In the cold weather months, whenever I come inside, I make a beeline to the sink for the hot water. I'm always on the lookout for really warm gloves, but so far have not been successful. I buy a few new pairs each year hoping that they will be warm enough, but nothing so far.

The holidays are rough...we want to get so much done and often push ourselves a bit too much. So, do what you must, but remember to take care of yourself and give yourself the rest that you need.

Thanks for posting...it's good to hear from other people who are going though the same thing! Have a great weekend!

Carolyn

On 10/10/2014 cag said:

Noel,

I used to take Plaquinil, but it wasn't working for me. I'm now taking Cellcept, among the many other medications. I honestly can't say that I feel any better with the Cellcept, but my levels are all a little better than when I was taking Plaquinil.

I know what you mean about the upcoming season. These last few days have been a preview of what is to come. Thank goodness for the hot water. In the cold weather months, whenever I come inside, I make a beeline to the sink for the hot water. I'm always on the lookout for really warm gloves, but so far have not been successful. I buy a few new pairs each year hoping that they will be warm enough, but nothing so far.

The holidays are rough...we want to get so much done and often push ourselves a bit too much. So, do what you must, but remember to take care of yourself and give yourself the rest that you need.

Thanks for posting...it's good to hear from other people who are going though the same thing! Have a great weekend!

Carolyn

Hi again Carolyn

I don't know anyone with Lupus, so I really feel like I'm winging it on my own. I do scan lupus boards once in awhile and learn some new things, but that can be pretty scary. There are no lupus support groups in my area, either.

I get newsletters from the Lupus Foundation, by way of email. Pretty dry, though. My daughter shows me things about lupus pinned on Pinterest, I get a lot of info from that. It's really good when you find out about something you think only you have experienced

Best wishes for your weekend, also!

Noel

Hi Noel, et al.

Because I'm kind of an idiot and I'm lucky to remember my name or really lucky when I can remember what day it is (50 times a day!), I don't remember the different types of Lupus.

But this movie just popped into my head today and I was wondering if you had seen it. It starred Brooke Shields and Cherry Jones as a gay couple. They had a baby (that Cherry Jones' character bore) and then her character ended up with the REALLY bad type of Lupus (where you don't live long) and it went on with her parents trying to take their daughter away from Brooke's character. Anyway - amazingly great, and sad, movie.

I thought about this when I remembered Cherry's character out in the yard for their daughter's birthday party and she started getting REALLY sick from being out in the sun abnd I know, although I don't have what she had, whenever I go out in the sun, even for a few minutes, I start getting really red and sick. I guess that's some manifestation of the auto-immune system unable to do its job.

Anyway, I think of this movie often and would love to see it again so I have it on 'search' on one of my Tivos. It's such a beautiful movie and what that character went through was just so brutal and heartbreaking.

D'oh! ETA to add that the name of the movie is 'A Different Kind of Family'.