LupusChick’s Spotlight On series began about 3 years ago. We highlight men and women who are dealing with a wide range of illnesses, and we felt it was important to tell individual stories because of how different each story is. Our hope is you connect to one (or more) stories! This Spotlight On story was completed by LC writer, Maria Mongiardo and edited by LC Founder, Marisa.
Edie at the medical center, donning a lead vest and stethoscope; she is a trauma technician.
Edie was diagnosed with Lupus in 2001 right before she turned 21, but she had symptoms of Lupus dating back to high school. She visited a general practitioner a few times and once she responded to steroids, they referred her to a rheumatologist. By the time she got to the rheumatologist he confirmed Lupus and started her on a long trial of medications.
After a few years of recovery she went back to community college and enrolled in an EMT course through UCLA. She worked out in the field as an EMT, learned how to drive an ambulance, and then took another class to become an ETT (Emergency Trauma Technician). She was hired at UCLA ER in 2005 and has been there ever since. Recently, the stem cell transplant for Lupus she applied for has been approved. She is looking forward to the experience and hopes transplantation becomes a standard route of care for many autoimmune diseases.
Tell us about your support system, Edie?
I have been so lucky to have my family and friends to lean on. Although I do not have a lot of extended family, I consider myself fortunate to have been able to build a support system through friendship and relationships in addition to mom, sister, and stepdad.
I consider myself blessed because my support system extends wide. I feel like I have been able to make friends and be of service to others throughout my life that I have been rewarded by kindness from others. I work at UCLA medical center in the emergency department; this year is my 12th year anniversary and I could not be more thankful to that place, the love, and the experiences. It is a great team all the way from the nurses, doctors, techs, to the housekeeping staff. I have had so much help from them financially and emotionally; they taken care of me when I have been critical and just talking about it makes me tear up. I can honestly say I would have not survived 2016 without them.
What books did you read to help you learn about Lupus?
I think The Lupus Book by Dr. Daniel J. Wallace is one of the most comprehensive books all around, and I have to disclose that he is my doctor (but to be honest, when I started seeing him I had already read it). It is a guide for patients and family on knowing what to expect with this disease, Lupus Erythematosus, and is hailed as one of the most informative books on the subject. He also has other books about fibromyalgia, Sjogren’s, etc. Since many of us have overlapping conditions, it is important to be knowledgeable of things to be aware of and to monitor symptoms.
A positive, fun spin can be found in, How can you not laugh at a time like this? by Carla Ulbrich; it offers humor and common sense with sprinkles of optimism. Fortunately through work I have access to medical journals and up to date databases like JAMA, journals on immunology, emergency medicine, investigational drugs, and the American College of Rheumatology (www.rheumatology.org).
What has helped your Lupus symptoms?
I tried anything and everything from eating alligator to taking what I suspect was dirt in a capsule. I have seen holistic, naturists, nutritionists – name it, I have done it. A few things have helped – a balanced diet low on sugar and alcohol, those two are super inflammatory and I can feel the swelling in the joints and the flare within hours of binging on either. Lots of fruits and veggies but also some healthy protein is needed. Acupuncture – I cannot tell you enough about this – helps me with mood. It takes a while to feel it but consistency is key. Water therapy, hot tub or spa, a bath with Epson salts helps with mobility and pain. I wear these Arthritis fingerless gloves – “Imak” is the brand. It is awesome for winter to do crafts, driving, and to keep your hand joints nice and cozy. It is on Amazon and so worth it.
Many Lupus patients carry negative views on the medical system in our country. In your opinion are there certain things you believe doctors could have done differently when diagnosing you for Lupus?
My diagnosis was not as hard as I have known it to be for some people, though there was the doctor that thought it was all in my head and I was depressed. Well, it turns out that I was depressed because I was in pain almost all the time. Eventually, because my labs were really off, my diagnosis was not that difficult. Mostly my experiences have been good with doctors, except for a few times.
I think its important that you as a patient are informed about your own condition, to have a basic understanding how organs and body systems work so when you talk to your doctor about your condition, you understand what is going on. Doing your research on the doctors available is also important; you want the right specialty for what is going on. I see nephrology, GI, rheumatology, and have had consults with cardiology and pulmonary. It really is like having a full time job just to be sick.
What has lupus taught you?
I am learning how to find my voice. Lupus has pushed me way outside of my comfort zone, being an extremely private person I often opt for platforms in which I am a bit more anonymous like Reddit or Tumblr, and left the deep personal feelings and thoughts outside of Facebook because of fear that others would not be able to handle my disease, would be turned off by it, or I would be judged or pitied. But through this I have become a lot more open with others – because its important for people to see the reality of what we deal with every single day, to spread the word of awareness, education and advocacy because we need each other now more than ever.
I am learning to trust the journey even though I have lots of fears. I am waiting for a Autologous Stem cell transplant; this is under an FDA trial in search for a cure not only for the millions of patients affected with Lupus but also for as many as 21 Autoimmune diseases like vasculitis, cholangitis, scleroderma, etc. Although I have been approved by Northwestern Medical Center in Chicago, I have not yet been given financial clearance for this procedure because is experimental and the cost nears a quarter million dollars. In the mean time, I sit, I wait, I write and I pray. The transplant procedure involves heavy chemotherapy; it brings you to the brink of death to bring you back to life. I am terrified but I believe is worth it to save my kidneys and my life, and its not my first rodeo. I also participated in the clinical trials to bring Benlysta to the market back in the 2000’s, I donate my blood regularly for research, all in hopes to find a cure not just for me but for all of us.
Lupus has taught me that there are many people with big beautiful hearts willing to help, and honestly it has humbled me and made me a much less cynical person. It has restored my faith in humanity.
Is there anything else you would like to add?
I would like to add that attitude has a lot to do with how we approach the disease. Yes… being optimistic, altruistic, and kind helps. But we all have bad days, terrible days, in which you are not cheery, hate the world, the blinds are drawn and you do not want to talk or see anyone. That is okay – you are allowed to have those days, just do not let those days become your life.
What is your Lupus story? Let us know in the comments.
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