Lupus.....

[stomp]

Sister living with Lupus

My heart and prayers go out to all who suffer from this Lupus. I have watched my sister live bravely with it for years. She sleeps on an air bed on top of her regular bed and has a fan blowing on her all night long all seasons. She says that practicing yoga helps, and as many have said, maintaining a positive attitude is essential. I will tell her about the tea. She didn't give up looking for doctors who understand this Lupus, and she finally found one. My sister also laughs a lot, and keeps the rest of us laughing, too.

God bless you,
Mary

[Nezbah]

My heart and prayers go out to all who suffer from this Lupus. I have watched my sister live bravely with it for years. She sleeps on an air bed on top of her regular bed and has a fan blowing on her all night long all seasons. She says that practicing yoga helps, and as many have said, maintaining a positive attitude is essential. I will tell her about the tea. She didn't give up looking for doctors who understand this Lupus, and she finally found one. My sister also laughs a lot, and keeps the rest of us laughing, too.

God bless you,
Mary

Kewl!!! Glad to hear that she has a positive attitude and laughing. It's the best possible thing. Yes, it's hard to find Dr's who truely understand this disease, glad she found one. Unfortunately its something we're going to have to live with all our lives, we'll have good days and bad ones. But what keeps me positive is well, my family, my silly son, and having people around me. However, going to powwows and watching the lil one dance or making him/beading etc his regalia keeps me going. Having the drum and powwow sounds keep my mentality sane and being at peace. Plus going home once in a while back to the rez, does the trick too. So glad to hear ya there for her, its tough to watch someone be in pain or go through what we do, but if you weren't there, it be lonely and sad. Keep smiling and thanks to those who all support.

[Enigma]

Hi Nezbah,

I hope you're feeling better
My daughter was diagnosed with it 2 years ago, and I've recently been diagnosed. It is far too common and masks itself as several different disorders and diseases.
I also found this website full of info. Lupus Nephritis

Bless you and keep up the fight!
((Kathy))

[timmy tiger]

I didn't see this thread before, that I can remember. But it sure hits home. My Aunt was diagnosed with this disease when I was just little and I was the only one in my family who was actually tested as an infant for this very disease. I've done alot of research on it in the past several years and another Aunt of mine thought that she had it, but she doesn't, she actually has something else. My one Aunt has Systemic (spelling?) Lupus and was diagnosed when she was in her late 20's/early 30's.

[FluteMaker]

its everywhere. i have a sister who was diagnosed with lupus when she was 12,and wouldnt ya know it, its the sister i still speak to. shes had a couple kidney scares over the past few years but she seems to be handling it ok.

[Nezbah]

sheeeeeeeeeeeeee, wow it's been nearly a year since my diagnosis. But I have had this disease for many years since my early 20's, it only manifested itself last year. Doc's and doc's, including medicine men have been helping me. There is no relief or 'cure' in the long run for me. Recently my doc just faced me with the fact that this is terminal and I just have to start preparing myself. Of course, I raced to a medicine man to help, and he too, said the same thing. Only good news is that they may be able to help longer my life span but I don't know how much longer. Keep strong keep strong I tell myself every day. All I know is that the pain is going to keep getting worse and I have to prepare myself for that. This disease takes people in different ways. It has already hit my insides and most of my good tissues away. I pray every day that I at least get to see my son grow into a man and attend his graduation. Poor thing, he's really trying to grow up too fast now, always wanting to be by my side and take care of me, etc. I don't want him to miss out on his childhood. *S*. The only thing that makes me feel better is when I hear him sing or watch him dance. Man, he has a beautiful strong voice. Makes me cry every time I hear him. Anyhow...... for those of you who are suffering like me, i'll keep ya in my prayers, as I know not all of you are gonna end up like me. There are so many different variants of Lupus, I just happen to be the lucky one that has this outcome.

So that is just the update for now. Just gonna keep trying to find that one thing that will make me better. BTW that tea did no help :( . So have to keep battling this war......

Nezzy

[standstill]

I send a prayer of comfort and relief from the pain that Lupus brings. Stay strong.

[Nezbah]

Just an update: Starting chemo now, ugh. It's wierd cuz I see many of my friends and peers who have this terrible disease (everyone has a different type of Lupus or are in a different state of it) but there is no education on this for Natives out there. Everything is all focused on Diabetes or Cancer or something else. It's just amazing to see how many people have either passed on or struggling with this disease. Sad thing is, most of the doctors out there don't even look at this disease as an underlying issue. They will diagnose anything else but this....sad. It took about 15 years for mine to come out ya all wonder if it could have been treated or taken care of before all this has happened. Well we'll see what happens. My sis-n-law (non-native) has this and her meds caused cancer, she went on chemo, the cancer is in remission. But the wierd, but cool, thing is that she hasn't had her Lupus or Cancer come back. It's like the chemo just wiped it all out. Wow....

Things that make you go hmmmmm.

[nighthawk58]

I am sorry to hear this. I have another friend who has this. She is a much older woman, but has been fighting it for ... I guess over twenty years now. Keep up your good spirits, that never hurts a thing.

[beeleaf]

Just found this thread. Best wishes to you, Nezbah! That's interesting about the chemo. Hope it works for you.


I am ANA positive, but dx is fibro for now, with a few other chronic crappies. ;~) Whoever said that the drum is essential hit the nail on the head for me. Good things have come from it. Prayers for all of you.

Thanks to whoever mentioned the Essiac tea. Will look for that.

All the best,
Bee