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Lupus/Good friend suffers from Systemic Lupus

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A good friend or mine, her name is Lisa Marie Dunne has been afflicted with systemic lupus. She is a registered nurse. Recently it has been rather aggressive, and she has not been to work in a month while she goes thru a series of tests. She has had a mild stroke, has serious fatigue, some hair loss, but most recently, bouts of memory loss, and attacks where she becomes almost semi comatose. They have told here that it is caused by a loss of oxygen to the brain caused by inflammation of her blood vessels. She is very depressed and feels her career and life are over. I am heart broken for her and feel as though she has not had the proper docters, or her docters have not given her the best advice on how to live with this. She has been more aggressive with her docter visitations now, and is trying to find the right meds to put her lupus in check. And hopefully stop the progression. Can you help with any advice please for her. Thank you.

Answer
Hello-
Thank you for writing in about your friend.
She is fortunate to have a friend looking out for her.

I have lived with lupus since 1990, and had a stroke in 2002.
It can be a frightening, depressing time. Currently I am doing really well (I am a comedic songwriter, author, actor, guitar teacher, and budding tap dancer).

For me, a combination of both mainstream medicine (drugs and tests) and alternative medicine (diet change, acupuncture, chi gong, and chelation therapy) were the key to me getting better. Also, spending time with "safe" friends (people who loved and accepted me regardless of how I look or feel). Ideally, your friend can find a doctor (MD or DO, osteopath) who does what is now called "functional medicine," where they treat the cause, not just the symptoms.

The diet change was me eliminating foods I am allergic to. There are 2 kinds of tests- IgG and IgE. One is for delayed reactions, the other for immediate. You want the test for the delayed reactions. Usually what you're allergic to is something you eat or drink every day, and/or often have for breakfast. If I do nothing to take care of myself except avoid the foods I'm allergic to, I know I will not end up in the middle of a serious lupus flare ever again. That's a very empowering feeling.

The strongest drug for inflammation that helped me was prednisone. Plain old cheap prednisone. It really worked for me, even though I hated the mood swings and insomnia and weight gain- I managed to wean off it within 9 months and get myself back to normal in regards to weight and moods. It doesn't work as well for everyone, but it does work for a lot of people. The other thing that was NOT mainstream that really helped with inflammation was chelation therapy.

At this point, she might also consider getting an anti-depressant to help her stabilize her mood so she can deal with all she's going through. Depression and lupus are very closely associated.

Here are a few links that might be helpful:

http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-you_b_657395.h

http://lupusandhumor.blogspot.com/

http://www.amazon.com/Laugh-Reclaim-Health-Humor-Creativity/dp/0981645348/ref=sr

This absolutely does not need to be the end of her career, or her life. I have been there and felt the very same feelings. I never thought anyone would ever marry me after I was diagnosed. But I have the best husband ever, and I'm happier now than before I became ill, and even healthier than nearly all my friends my same age. It's all possible- you just have to look outside of your typical doctor's office, because they only have 2 tools: drugs and surgery. And for chronic illness, you need something more if you want to be truly healthy. (Not avoiding mainstream medicine, just adding onto it with other things).

I will say a little prayer for her tonight, that she finds just the very help she needs, and soon.

All my best to you both-
Carla Ulbrich

The Singing Patient
www.thesingingpatient.com  

Lupus

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Carla Ulbrich

Expertise

I can answer questions such as "what is lupus?" (How common is it? Is it contagious? What are the symptoms? etc.). Also, I can answer questions such as "what are the available treatments for lupus?" (both standard and alternative). Really, I'll take almost any question on lupus, though. If I can't answer it, I'll be very surprised, but I'll also go find someone who can.

Experience

I've been living with lupus (SLE) since 1992. I've had three severe bouts with it, including symptoms such as kidney failure and stroke (if you can call having a stroke a "symptom"). I have completely regained my health, though I have to be mindful to take care of myself, lest I get sick again. I use both mainstream and alternative medicine, and have tried just about everything under the sun to alleviate symptoms. A lot of it worked.

Organizations
Lupus Foundation of America Association for Applied and Therapeutic Humor Toastmasters Folk Alliance

Publications
How Can You Not Laugh at a Time Like This? (Tell Me Press, pub.) What is Laughter Lupus Sundial Newsletter

Education/Credentials
BA in music (UNC-Greensboro)

Awards and Honors
Novelty Song of the Year, Just Plain Folk Awards Winner, South Florida Folk Festival Song Competition Lupus Foundation of America Seal of Approval (for book)

Past/Present Clients
Medicaid Conference Alaska Palliative Care Conference Right at Home Health Care SePHIMA Anritsu Club Med Nursing in Practice

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