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Life with Lupus

By Regan
 
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Regan is a lupus advocate and musician: please visit her at www.BeatLupus.com and www.ReganMizuno.com. Thank you.

Hello everybody. My name is Regan, and I am a lupus patient. Actually, I like to refer to myself as a lupus “participant”. Sometimes I am indeed symptomatic, but, in general, I’m in very good health and have been in remission for quite some time now.

My Grandpa calls me a lupus survivor. He says he calls me this because I recovered from the (what I now refer to as) nightmare of the initial diagnosis and ensuing years of failed health. I am happy now, and living a productive life. There are many many people and reasons and steps along the way for this wonderful unfolding to have happened, this miracle. I am so grateful.

It was a tough decision to come out and say it: “I have lupus”. But it is indeed something I’ve always wanted to do ever since I was first diagnosed. I just never had the courage to do it until now. I dreamed of speaking out and helping people with this disease. The best way I could envision that happening was by doing public advocacy. And, since I am what I like to call a bit of a “mouthpiece”, here goes!

It was Grandpa who encouraged me – and here’s the kicker – to be PROUD of having the disease and of having overcome it. He feels so badly for the struggles I endured, and the pain and other symptoms I still feel periodically to this day. But he is proud of me for having kicked that mental block of having a chronic illness and he thinks it’s cool, strong, and smart and savvy and ballsy to deal with a physical illness and move forward with life. It took time, but that is exactly what I did. He has done it himself. He thought maybe I should let people know my story. He asked me, “Aren’t you proud of yourself?” Yeah, I guess I am. Thanks Grandpa. The kind support of my biggest supporter, my husband, has made me feel at peace about my decision to write about it. And my parents, who have always been there, are still. Thank you, guys!

My goal is to raise awareness about lupus so a cure will be reached. And there are encouraging signs it will be – soon.

Add a Comment7 Comments

EmpowHER Guest
Anonymous

Hello Regan,
I am interested in your lupus story. What are the symptoms? How long were you ill before being diagnosed? How were you diagnosed? What was your treatment? I am interested in hearing about the things you did to get well. You say you are a singer/songwriter/ mechanical Engineer. You must be a very busy person! God Bless.
Connie

June 16, 2009 - 9:55pm
alysiak

My Grandfather had lupus, and multiple complications associated with it, such as skin cancer, colon and stomach cancer. Yet, he lived a very long and productive life. A very active man, he was known to walk as far as 25 miles in any given day, just to visit friends (he had his route planned so that he would always be on the shady side of the street) in our beach side community.

I was diagnosed with lupus in 1990, along with rheumatoid arthritis. I've had to deal with a host of issues, especially gastrointestinal and, most recently, lymphatic. Five years ago, I started training for a marathon. If my Grandfather could walk 25 miles, I could certainly walk or run 26.2. Just a little over a year ago, I was informed that I've had scoliosis and osteoarthritis for several years (I never knew). I run to keep my joints healthy. Sometimes, it's hard. But, it's harder to deal with a relapse and prednisone.

Lupus is not life-threatening - UNLESS there are underlying conditions that are simply too complex to combat. My SIL died last week of such underlying conditions that, over several years, made her immune system too weak to handle. I don't believe she represents the norm. She was never very active, nor did she have a very healthy lifestyle prior to her diagnosis.

So, the objective for us lupus patients - or, participants, as you like to say - is to get off our duffs and keep moving!

Good luck on your book!

June 16, 2009 - 5:06pm
EmpowHER Guest
Anonymous (reply to alysiak)

Dear Alysiak, I am very sorry to hear of your Sistern in law passing away. I'm sorry. All my best wishes for you and your family and for your health. Regan

June 16, 2009 - 5:40pm
alysiak (reply to Anonymous)

Thank you, Regan. She really had a rough battle.

June 16, 2009 - 7:17pm
EmpowHER Guest
Anonymous (reply to alysiak)

Dear Alysiak,
hi there. Thanks again for your comments! Take care of yourself as well. That is something, about your kidneys. I wish them health. They are vital! We should keep in touch. I'm just getting to know the site, so please do keep in touch and best of luck with your training! That is a great idea to marathon for lupus. Regan

June 16, 2009 - 8:00pm
EmpowHER Guest
Anonymous (reply to alysiak)

Dear Alysiak,
HELLO! Thank you so much for your comment - yes, I agree that keeping active does indeed improve our health. I should probably write in my next article that I actually was sick with a life-threatening case of lupus - my kidneys were what was being attacked, and they were supposedly the size of nerf footballs. I took 2.5 years of cytoxan (a breast cancer chemo) and that basically saved my life. So I feel I am the exception (and it sounds like you are too! What with your FABULOUS marathon-ing! That is "WoW"-fantastic) not the rule. All the literature I read states lupus "can be" life threatening - and in my case, it was. I'm healthy thanks to many things including early diagnosis. I'm trying to shed light on the seriousness of the disease and to also show people why they should donate - I think the biggest reason is because research and doctor-education dollars saved my life! What do you think ??? I too have osteoarthritis, and also fibro. I have Sjogren's too, but that is for another article. Please let me know your additional thoughts. Thank you. Very Best Regards, Regan

June 16, 2009 - 5:35pm
alysiak (reply to Anonymous)

Hi, Regan:

Sjogren's on top of lupus can't be any fun at all! I had kidney issues for several years prior to the lupus diagnosis. So many things fell into place with the diagnosis, now there was a root cause. Unlike your more serious situation, I had a kidney dysfunction, so I basically live with one fully functional and one that can be iffy. Fortunately, we can learn to deal with that (but, I still love coffee, LOL!).

As you well know, early diagnosis is key, but can be difficult. I was almost 40 when diagnosed and had been going through a myriad of health issues for decades. My first doctors chalked everything up to stress, as I was in a high-stress career.

The doctor who finally diagnosed lupus had first tested me for fibromyalgia. It took a physician who was willing to think outside the box and take the risk to test for something so evasive. He admitted that most doctors he knew at the time wouldn't have wanted to suggest lupus, as it was not very well understood, and that it was easier to treat stress. Right!

I agree with you about needing to raise awareness. The Lupus Foundation benefits from a few marathon/half marathon training programs and events across the country, but it's not nearly as far-reaching as the Team in Training for Leukemia and Lymphoma. I admit that, although I've considered trying to get more going in my community, I'm always stretching myself too thinly, LOL!

Take good care of yourself and keep up the good "fight."

June 16, 2009 - 7:16pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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