I am 40 a year old mother of two and I have had Systemic Lupus since my teen years. I also have an overlap of Rheumatoid Arthritis which caused severe deformities resulting in having the joints replaced in my hand at 35 years old which is virtually unheard of. My hips were next on the list to go bionic, but the hand surgery was so excruciating I declined it. My surgeon was very butthurt that he had to downgrade his new yacht. Since then I have broken my kneecaps off twice because the steroids destroyed what little muscle tone I had, very curious given my very strenuous daily workouts of just getting to the toilet on my own. Fabulous arm tone too as you might have guessed which did not hold up quite as well as I would have liked when I fell in my own kitchen and broke my shoulder in three places and cracked my humerus bone which was not really all that funny.
I was given last rights a little over two years ago because I was being treated with a type of chemotherapy that was potentially fatal. Having been hospitalized four times in a twelve month period, I was also considering a stem cell transplant because my lupus was refractive and totally out of control. I have tried literally every drug on and off label in every permutation and combination possible. In addition to traditional/western medicine, I have been macrobiotic, vegan, done cleanses, magnets, biofeedback, naturopathy, chiropractic, chinese herbs, acupuncture, alternative treatments, and mind/body medicine of all kinds. I have read so many books, blogs and articles on the subjects at hand, I could probably write one. In living with SLE and RA, I deal with chronic pain, severe joint deformities, migraine headaches, syncopal episodes, discoid lesions, elements of Raynaud's Phenomenon and Mixed Connective Tissue Disease, pleurisy, asthma, insomnia, anxiety, and the many side effects of my treatments such as massive scarring from high dose steroid treatment, just to name but a few.
I got fed up with the system and being sick all the time and so I fired my medical team and hired myself, figuring there wasn't much I could do to screw things up any worse than they had already done. Since 2007, I got off 13 daily meds, changed my entire lifestyle, moved from NYC to rural Utah and started over. I am still off daily prescription medication but I question this on a daily basis, especially when the pain gets out of control. It can be very scary at times not knowing when your health is going to tank again but I try to stay positive. I would never recommend that anyone do as I did and jump ship on their meds or their doctors but I know that there are people out there trying to live with this disease and they can feel very frustrated, alone, and scared. I feel these things too as I chart my own course with no maps, no guides. I feel comforted by the posts of others, I learn from them, I share their trials and triumphs. If you are still here with me, you must know some of the same struggles. I share my journey here, living with SLE, RA, and how I manage to live a ridiculously fabulous life in spite of the wolf at my door.
The photo with the top hat was taken in April, 2008. The profile photo and original content is from is from January, 2009.
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