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A Personal Struggle with Lupus: 5 Tips for Self-Care

From the Show: HER
Summary: The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide, have a form of lupus.
Air Date: 6/4/15
Duration: 10
Host: Michelle King Robson and Pam Peeke, MD
Guest Bio: Margaret A. Romero, NP-C
margaret Margaret A. Romero is a board certified Ivy trained nurse practitioner and founder of From Lupus to Living. She specializes in treating women with lupus, as her own personal journey with the disease has led her to greater understanding of its effects. Through the use of functional medicine, she has been able to stay out of the hospital and off the kidney transplant list.
A Personal Struggle with Lupus: 5 Tips for Self-Care
Lupus is an autoimmune disease in which your body attacks its healthy cells and tissues. The disease can cause achy joints, swelling, inflammation, skin rashes, chronic pain, hair loss, blood clotting, anemia, weight loss/gain, and extreme fatigue.

Lupus can be very difficult to diagnose, since there are several types with a myriad of vague symptoms... all which can cause doctors to believe it's something else. This can be extremely frustrating as a patient.

This was the case for Margaret A. Romero, NP-C. She was very ill in the hospital, and doctors told her that she would need to be placed on the kidney transplant list within the next few years due to the damage lupus did to her body.

This caused an ongoing struggle for Romero, and forced her to hit rock bottom before seeing the positives in her lupus journey.

Unfortunately, if a diagnosis is made, there is still no cure. However, there are some ways you can ease your symptoms.

What are some self-care tips?

Romero suggests taking vitamin D, fish oils, and vitamin C to help heal your adrenals. She also recommends that you incorporate massage, restorative yoga, walking, talking with friends, and journaling into your self-healing process.

Romero joins HER Radio to share her personal struggle with lupus, as well as the five self-care tips you can use to help ease your symptoms.
Transcription:

RadioMD Presents:HER Radio | Original Air Date: June 4, 2015
Host: Michelle King Robson and Pam Peeke, MD

It's all about her. Her body. Her mind. Her wellness. Her sex. Her relationships. Her aging. Her beauty. It's HER Radio starring acclaimed entrepreneur and women's advocate, Michelle King Robson and leading women's health expert, the doc who walks the talk, Dr. Pam Peeke.

PAM: Now you know, Michelle, that lupus is one of those diseases that really hits women big time. You know this because of all the women who have this issue who are on our website EmpowHER and reach out to you all the time as a patient advocate. Right?

MICHELLE: Exactly. And on HER Radio, too. It's both. We know that it affects many more women than men and we need to figure out why.

PAM: There are 1.5 million Americans who have it. Ninety percent are women. These women are getting it between the ages of 15 and 44, the really formative years.

MICHELLE: I know.

PAM: It's such a struggle and it's a challenge. Margaret Romero is here to shed light on lupus and why? She is a board certified and trained nurse practitioner but she is also founder of From Lupus to Living. Why? Because she had a personal journey, too, with this and wants to help other people especially. Margaret, welcome to HER Radio and tell us a little bit about your journey with lupus.

MARGARET: Thank you for having me. I was diagnosed in 2007 with multi-organ lupus nephritis. I had been to multiple hospitals. It has been such a journey for me from that point in time-- from the 20 medications I was on--to where I am today.

As a nurse practitioner, I have been able to try different things. Working as a functional medicine and integrative practitioner, I have really been able to hone down the key elements to having someone in crisis come out of it and, eventually, hopefully, to be able to wean themselves off medication.

It has been quite the journey for me but I will say that I no longer suffer from it and my mission is just to help other women to decrease that suffering. Lupus is now such a growing epidemic. Every day more and more women.

MICHELLE: It is growing. Thank you, Margaret, for sharing your story. Tell us, what is lupus so women understand.

MARGARET: Lupus is an autoimmune disorder where the body now thinks that its own cells are foreign. So, it starts to attack its own cells. Depending on your "weak link" is where you'll have the issue. If it is the kidneys, you'll have lupus nephritis and you'll have kidney function abnormalities. If it's the heart...It can affect every organ system. Pleuritis, which is inflammation of the lung. You can have enlargement of the heart. It can affect also your brain. If you have one autoimmune disorder, it also makes you at higher risk to have another autoimmune disorder.

It is really catching this quickly. I am not saying that medication isn't the right thing because that is actually what saved my life. But it's also learning the other things that are really critical. From what I've learned in the past several years, blood work and supplements and things like that are really important just to help the healing along once someone has gone through such a chronic illness.

MICHELLE: So, speaking of blood work, how is this diagnosed?

MARGARET: Typically, people go to a rheumatologist or they can start at their primary care. They come in having muscle and joint pain. Sometimes, they will have a facial rash, sometimes called the "butterfly rash". From there, bloodwork is done and all kinds of titers are done. Tons of bloodwork checking sed rate for inflammation; checking for lupus.

You also want to check for other different autoimmune disorders, just to rule them out: Sjogren's, M.S., things like that. Also doing urine tests. Depending on where we are then, if they see an abnormality in kidney function, sometimes they will get a kidney biopsy. It starts with bloodwork first and foremost. That is usually how they get the diagnosis.

PAM: As a physician, I happen to know as a brethren medical practitioner, that this can be, oftimes, very difficult to diagnose because of the vague symptoms.

MARGARET: Oh, yes.

PAM: So, I think that women need to understand that they need to be their own advocate as Michelle has said a million times over. If something is wrong and you are not feeling right, just get on in there and just keep it rocking until you get an answer there somewhere along the line. Lupus can be very confusing.

Don't write it off and please don't say, "I'm too busy to go see the doctor." Don't do this. This is a bad thing. You have three important labs to request at your next doctor's appointment. Right? When you are looking at how lupus is affecting the body, how to track it, how to be able to stay on top of optimal health for this. You mentioned hormones - DHEA, thyroid panel and vitamin panel. Tell us why these are important labs.

MARGARET: There lots of studies that show that low levels of DHEAS – which is DHEA sulphate – in women will attribute to worsening of an autoimmune disorder. A lot of times hormones really aren't checked. When you go to a rheumatologist, they are checking sed rate, white count, they are checking titers, ANA. One of the things that I have found is that making sure that the hormone levels are fine. Once someone has had any autoimmune disorder, the majority of them are on some form of anti-inflammatory like prednisone.

After a while, when you are on heavy doses of it - which initially some people are when they are in crisis – it will affect the adrenals, in turn affecting hormone levels. Then women are really wiped out.

They've got fatigue, zero vitality. One of the hormones to check is DHEA – making sure that you are at optimal levels – around 200-250. If you are low, then you can start with – I like the nutraceuticals and with DHEA you can find over the counter, like pure encapsulations or something like that. People usually typically start with something really low, like 10 milligrams.

PAM: I love that. I think that something else that people have to understand out there, too, is that in addition to these labs and in addition to what you are saying which is to stay on top of the symptoms and to really advocate for yourself, it is really important also that you have self-care techniques.

MICHELLE: Self-care.

PAM: I know that you have mentioned a number of tips in your work and I want everyone to make sure to go to MargaretRomero.com to learn more about Margaret's wonderful work here. But massage, meditation, being in nature, walking, hiking, restorative yoga, journaling, talking with friends. These self-care techniques are really important. Michelle, I know you espouse so much of this on EmpowHer for women with chronic conditions like this.

MICHELLE: Right and I think getting out of fear is a big thing, too. Because people are fearful when they are diagnosed with something like lupus.

PAM: I think that is really important. We are talking to Margaret Romero who is a nurse practitioner and the founder of From Lupus to Living. She specializes in treating women with lupus and this is really based upon her own personal journey. Thank heavens she is a nurse practitioner. She was able to really put this to work. MargaretRomero.com is the website. Margaret, thank you so much for shedding light on lupus for women and thank you for being there for HER Radio. I'm Dr. Pam Peeke with Michelle King Robson.

MICHELLE: You're listening to HerRadio on RadioMD. Follow us on Twitter. Like us on Facebook. Stay well.
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