View Full Version : Osiyo (Cherokee hi) from new member, Awi Usdi (Little Deer)

08-15-2005, 02:57 AM
Osiyo, everyone. I have had Lupus and Sjogren's Syndrome since (at least) 1989, and have come to the point where I am nearly entirely isolated, lonely, and beginning to become deeply depressed. I've been an incredibly busy woman all my life as an Artist, a mother (single), a member of a large group of friends (all of whom have jumped ship). I was fit, strong, a traditional Healer and Midwife--and now I live in pain, exhaustion, and even require Morphine to deal with the pain that the lesions cause (people with Sjogren's often get internal lesions, in addition to the external ones from Lupus, and because they are internal they can't be reached to be healed).

I do not generally indulge in self-pity, as it's useless and counter-productive, but may I take a minute to say how much I HATE this!!??!! I hate that I'll never have my life back, even though at first, after my dx (in 1998) I remained completely calm and centered. That centered-ness has definiely fallen apart at this point, and the Morphine has made me disinterested in my own (now empty) life. I'm not addicted, but I have found that not only does it kill the physical pain, but it makes my emotional pain less, which is scary for someone who believes that the only way to grow is to feel everything deeply, even pain.

I am now a painter, having been forced to give up filmmaking and midwifery, as both are much too taxing. I know my friends all loved me, but chronic illness is too much for most to handle, and though I myself, as a Healer, would never have deserted any of them, I genuinely do understand their inability to cope and don't blame them. It takes a particular personality type to remain friends with someone who has become unreliable due to such problems as exhaustion and memory loss--and who wants to deal with the panic that can come with a pain crisis? Right now, in American culture, we ignore our sick, our old, our physically or emotionally handicapped. I don't live on a Reservation, where I'd be surrounded by loved-ones, so I'm on my own. Not even any family.

I've come to this site to try to get out of my doldrums (dull-drums!) as I have now bored even myself beyond bearing!

I'm looking forward to talking to, emailing, chatting on-line (is there a live chatroom? haven't finished exploring yet), and if I find someone in my neck of the woods, perhaps even telephoning or eventually meeting. And I want especially to discuss non-illness-related topics, so please think of everything you're interested in and let's talk, no matter how esoteric. PLEASE! I'm starved for intellectual stimulation.

I hope someone will want to talk to me--I'm actually an interesting person with genuine wit and humor. It's just gotten to where those qualities have disappeared underneath layers of illness and pain. I'm ready to rescue myself, and would be grateful to find an outreached hand (or even more than one!) to help me do so. Thanks, and I'm glad to have found you all.

08-15-2005, 11:59 AM
Awi, I'm so glad you came here. You will find a lot of support and understanding here. I completely relate to the feeling of being robbed of your life. I used to be an avid long distance runner and now have days I can barely walk. I am also at a point where I am not sure how much longer I will be able to work my part time job that I really like. Having this disease really stinks.

I think we all go through periods of grief and loss through this process and I think everyone needs a good pity party once in a while. I have them more often than I would like to. You have every right to be upset about all that has changed in your life.

By the way I love your name. Are you Cherokee? I am not, but I had a tipi for a while that I stayed in quite often until it finally rotted and was unusable. I always had a great sense of peace while I was in the tipi. I gave myself the nickname of Eats No Deer since I am a vegetarian. I'd also like to know about the traditional healing you do. I'm interested in it but don't know much about it. I went on a retreat a while ago and had some healing touch done and felt it was really beneficial.

Anyway, welcome to the site. You will get to know some people who should be able to help you get out of the doldrums. Take care.

08-15-2005, 03:37 PM
Hi awi,
we have something in common. I was a community nurse in Uk but retired when I realised my patients could get out of the chairs quicker than me LOL (you have to laugh) I was caring for people healthier than me.I now have a disabled car badge and walk with a stick but retirement has improved things greatly. I can rest when I want. I do my hobbies that I enjoy. I have started market trading with my hubby. We have bought a big tent and stay away for weekends. I ensure I get rest days--thats how I survive. I am very positive, only worrying about unexplained symptoms--especially in my brain. My mobility isn't brilliant a lifetime of nursing has left me with osteo arthritis in my knees, hips and shoulders not a good receipe with Lupus. I spend my days on my computer, love message boards. I run my own. I crochet handbags which I sell. I am just starting to do bead work.I personalise gifs too
My life has changed but not all for the worst.
If you want to chat all my links are in my signature.
Look forward to hearing from you.
Love Val

08-15-2005, 04:24 PM
Welcome Awi,

I'm not American Indian, but my partner is 1/2 Northern Cree/Metis, and participates in PowWows in our area. WE have a great Native American Cultural Center near by. I've learned a lot from the spiritualism, the sense of community, and the strentgh in the face of centuries of adversity.

This condition we have (I HATE the word "disease" - it implies something broken, "bad", and I don't feel we are "diseased.") affects every area of our lives. I'm very lucky - I can do most, I'm a little slower now,and occassionally barely move faster than a crawl. But I can move. I can be outside - long sleeves, sunscreen, slacks, HAT. But I can be outside. I can work, thank heaven, as I am the sole provider in our household right now. Many nights, actually MOST nights, I'm in bed by 8. But I can put in a day's work. As I said, I'm very lucky. Blessed if you will.

I wasn't a serious athlete, but I could do the 5k walks in no time at all - now 1 mile is fine, 5k -- well, give me time. I should be able to finish eventually. I could lift reasonably heavy weights for a woman "my age," now I do light weights a couple times a week and spend soooooo much time gently stretching afterwards!

When I was diagnosed, I was aggry too. I had lost a level of control I'd assumed I had over my life. I didn't like that, I still don't like that. I've learned to accept it to a great degree, but not always.

Hugs, dear, you've found friends among this board. We unfortunatly aren't close by (well, I'm not anyway) but we are friends none the less. We understand each other, while we may be at different points along the path, we are understanding of each other.

I participate in another board as well, one thing we do there is a "friday funnies" - a joke thread each week - as we know we need the laughter. Maybe we need to start one here as well.

Depression can go along with conditions such as ours, because of all the issues AND because of the chemical changes the condition brings. Talk with your doctor, dear, maybe something can be changed to help - talking alone can help! Being here can possibly help as well.

Welcome, blessings to you from the spirit of the deer and the spirit of the world of which we are part.

08-16-2005, 10:04 AM
Hi And Welcome Awi;
As you've already witnessed, the people on this board are lovely; genuinely concerned and willing to be here whenever you need support or comfort.
I have lived with this disease since 1985 and, while my friends did not desert me, many of them I had to shed (especially after the loss of my daughter). They were impatient, unable to understand, judgmental and selfish. Actually, I have found that my dearest friends now are those who also suffer from some form of connective tissue disease and/or auto-immune disease. We understand each others limitations, inabilities and periods of depression. So, we get together whenever we can and we do those things we love (in moderation) and we support one another!
That's what we want to do for you here, especially since we are not close to you geographically. Perhaps we can be your dearest friends emotionally.
This is a systemic illness and, as such, affects our entire bodies. Therefore, it also affects our minds which affects our emotions. So, we truly understand what you are feeling!
I hope you will find some of what you need here, because you are most certainly not alone!!
I Wish You Much Peace and Many Blessings

08-16-2005, 08:24 PM
What a lovely set of greetings! Yes, I am Cherokee, and will happily talk about the Healing work I do, but not tonight--a day of great pain.

I'll be back soon--tomorrow probably--and would love to talk about something besides illness, if anyone's interested.

And I'm trying to find a word besides "patient." I hate that word. As Midwives we always said "client,'" but when describing oneself as a Lupus ________, the word client doesn't work. I refuse "sufferer" "patient" "victim". Any ideas??

08-17-2005, 12:29 AM
How about--Lupus Survivor !!
Thats how I think of myself. I try to be positive

Love Val

08-18-2005, 03:11 PM
Not for me. I hate the whole "survivor" mentality. Nothing personal, but the lists of "survivors" I'd be on is pretty damned long, so I try to avoid that one, too. Just like I hate "sufferer". There's just no language for non-victim-thinking people. I have never thought of myself as an abuse "survivor" though I am, nor a rape "survivor." The list goes on. I'm just a person whose had a life filled with great and dreadful stuff--sort of the usual deal.

Maybe we could just call ourselves "SLE's". Kind of cryptic, but simple...?

08-18-2005, 03:28 PM
I've seen people with lupus call themselves lupies.

08-19-2005, 02:44 PM
I call myself a "Lupie"


08-19-2005, 03:06 PM
Personally, I prefer not to have a "label"... I am still the same person I was before, only now I have this "thing"... (because I hate the words disease, illness, sickness... etc.) I am okay with just saying "I have Lupus" though, for some reason.... It's really odd... But to specifically CALL myself something... doesn't work for me personally... Maybe that will change, too... I don't know... But, I'd rather just be me... I didn't have a label before this, why should I now?

08-19-2005, 05:22 PM
I've said elsewhere that I won't refer to lupus as a disease, so i don't refer to myself as sick. Lupus is a condition, in my lexicon. Being a "patient" implies illness to me.

"I have lupus" I will say sometimes, but usually I just don't mention it. I'll say "I'm sun sensitive" when someone notices my hat and long sleeves on a hot day. Or my covering up in the car - cloth across my hands as I drive! I'll say "there and back in one day is more than I can do, I don't have the stamina I used to" if someone wants me to do too much in a day.

Sometimes I'll call myself a lupie. But then, sometimes people (good friends thank heaven) will respond - "Yeah,you're LOOPY alright!" :P

I'm just me, I guess!

08-20-2005, 04:38 PM
Hatlady gave the reason I won't use that word!

I don't give myself a label in real-life; but on this board, one needs a short hand. That was my point.

Out in the world, one often has to say one is sick. If I have to sit rather than stand in a long line at the movie theatre (if I'm well enough to go out), or can't walk any father than the Disabled Bathroom, I may have to say I'm sick, and have to say I'm not contagious (people's first fear, usually). If they ask what I have, chances are they've never heard of Lupus, but if I say "auto-immune" they think AIDS and sometimes freak out. Sometimes I have said "cancer" just to get them to give me a chair without a half-hour conversation with visual aids. I hate to do that, as it seems disrespectiful of those who do have it, but I cannot believe the questions I have gotten when simply requesting a chair!

Anyway, on this board, I guess everyone's a "Lupie, " so I'll have to forget anything new.

We could call ourselves wolves...that sounds more formidable than Lupie! And it's the root of the name of our condition, due to facial changes--darkening, spots, hair, really long teeth....