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pjay
04-16-2007, 12:55 PM
I haven't been officially diagnosed with lupus, but I don't need a doctor to tell me what's going on with my own body. Or should I say, I can figure out what's going on with my body if I pay attention to my body. And that's what I've been doing.

That's why the sneaking suspicion of lupus has grown into a knowing; I pay attention to my body and then find out what it's trying to tell me by getting knowledge.

For ten years, I've been educating myself about lupus. It's like an expedition. Today has been spent doing research on lupus, like I have done several times over the past three years. And each time I conduct this research I start with the thought, maybe I'll be able to prove to myself that it ISN'T lupus. When I first started following this suspicion, in 1997, I just did a quick research, the information I found was not conclusive enough for me to say one way or the other.

However, that hasn't been the case for my last two expeditions, particularly today. If anything, I've stumbled onto an abundance of information that validates alot of the health issues I've been experiencing, from acid reflux, to sun sensitivity to skin rashes, arthritis, depression, flushing, tingling, frequent UTIs, and on and on it goes.

So, now I'm thinking about my next step(s). It seems the logical next step is to be diagnosed and then start taking medication. But I don't want to take prescription drugs. I've been modifying my lifestyle over the past year to get more rest, improve my eating habits and nutrition, and take better care of my body. To handle my health with a holistic approach.

I don't think it's unreasonable to continue this approach even with a diagnosis of lupus. Yeah, maybe I would take something for the arthritis for the days that I can hardly walk, but other than that, I would really like to take a holistic approach to treating the lupus.

Is there anyone else who is using a holistic approach to lupus right now? If so, how is it going for you? Please share.

Thanks so much.
:)

MARYCAIN
04-16-2007, 02:13 PM
Hello, Pjay. I think it might be oversimplying it a bit to think a "holistic" approach necessarily excludes prescription medications. There are many of us, myself included, who must take prescription medications because we have life-threatening organ involvement and might die without those medications. Holistic in its most important sense means treating the "whole body" - the physical body, the mind, and the spirit. So while we take prescription medications, we also use complementary therapies like yoga, accupuncture, massage, meditation, dietary and nutritional approaches, herbs, etc. When you face a disease like lupus, you need every weapon you have to deal with it. Modern medicine has some pretty powerful weapons, but like most things, they can have a downside. So many of us work with our doctors to develop a treatment program that incorporates the best of all approaches.

pjay
04-16-2007, 04:50 PM
I understand all that, thank you. I've been practicing yoga for four years; I've had acupuncture, massage therapy, and meditate when I remember. I've also been modifying my diet and improving my nutrition. To round it out I've been solving sudoku puzzles for over a year now.

I also understand that if there is a health crisis, life or death situation, etc., then taking medication is better than letting the disease kill you.

Really, what I'd like to know, and hear about, are situations in which people are primarily using an holistic approach to lessen the impact that lupus has on their lives on a daily basis. Obviously, I already know massage, acupuncture, yoga etc; But I am always open to other ideas, trying different things.

For example, daily affirmations, visualization, prayer, writing and creating mandalas are all activities that enhance the holistic approach AND allow the spirit within to heal me. The more often, and in more ways, that I can activate the healing process, the better I will feel, literally.

Right now for me, working with my doctor is not an option for two reasons: (1) I haven't been diagnosed yet (I was told previously by a different doctor that he didn't think I had lupus) (2) My "doctor" is actually not a DOCTOR yet, he's a resident, which doesn't give me a lot of confidence about bringing it up to him, especially after my other doctor's reaction.

So, that brings me to why I went looking for a support group in the first place...because I know all of you will understand when I say: I want to be healthy...I want to be able to work more than 3 days in a row; I want to be able to walk without feeling like an old decrepit person; I want to enjoy the outdoors, the sun; I want to be rid of all the aches and pains that come and go, with no good cause or reason; I want the skin lesions/abnormalities to go away...I want to be healthy. So I am reaching out to the people who can help me, because they are going through the same thing. Besides, it's not only the doctors that heal us, we heal each other; and that is something powerful.

Thanks.
:) :)

Mzbeanz
04-16-2007, 05:07 PM
i added you to my yahoo messenger. I can SO relate as I am going through the same thing.

Missy
04-17-2007, 08:39 PM
I use Rx meds, but have found acupuncture, massage, yoga, and using a Natupathic doctor to be helpful as well (and plain old rest!)

I've found a combo of all of the above to work best for me.

sary
05-17-2007, 07:50 AM
If you don't mind me asking what gave your docter the idea that you didn't have Lupus, was your ANA not possitive? or did he not think you had enough symptoms for it to be Lupus?

Well lets assume that you do have Lupus, wouldn't it be a good idea to start medication? From what i've read, Lupus is very unpredictable and without treatment, wouldn't you run a greater risk of it attacking your organs?

Anyways, I know that's not what you're here for. Regardless of what we think you want someone who uses a whole holistic approach.

I like you I haven't been diagnosed with Lupus yet, it was mentioned as a possibility which is why I was refered to a Rheumatologist, which i'm seeing this morning.

Anyhoo, seen as i'm not on any medication, and I like you have been experiencing horrible symptoms like a pain in the butt malar rash, joint pain, fatigue, sun sensitivity and so on.

So i'm trying my best to minimize all of this with what I have available.

I do a lot of endurance exercise, like running. I like running on huge fields barefoot because it minimizes the impact it has on my joints.

I drink a lot of green tea, which has helped me a lot I believe in battling off infections, or preventing them.

I try and incorporate a lot of flax and fish into my diet as well as taking an Omega complex, I noticed that helped a little with the inflammation in my joints. Hydrotherapy has also helped a lot when I have joint pain.

A friend of mine said that she felt some relief with her malar rash, when she incorporated more alkaline foods into her diet, and getting less acids. Remember citrus foods are acid, but they turn into alkaline in your body, so they're alkaline forming.

Other than that, I sleep when I need sleep. I take time off work when I get extreme 'flare ups." I eat when I need to eat etc etc. But when I do get diagnosed with Lupus or some other connective tissue disease, I will take medication.

sary
05-17-2007, 07:53 AM
Oh and I forgot to mention, my mum's boss from work has Lupus, and she apparently goes to a holistic docter, and that has helped greatly with all her symptoms.