I was always a powerhouse of energy and productivity and never even gave it a passing thought. My health was excellent for years! I had three very active children, started a graphic design business in 1992, wrote and recorded 2 CDs, performed several times a month in two separate bands -- often out of town, hosted and managed a benefit concert series in Baltimore. People would often say to me, "I don't know how you do it!" I don't know how I did it either, but apparently it was taking its toll.
In September 2004, it all came to a halt. I had painted all day with two artist friends of mine, and then went on to a rehearsal with Telesma, the off-beat psychedelic, tribal, world dance music band in which I'm the lead singer. I couldn't stand up and trouble finding the energy to sing. A few days later, I took one step down to go outside in my backyard and felt the most incredible, unfamiliar sharp pain in my groin. It went away quickly enough, but I experienced it a few more times and wondered if I had dislocated my hip or something.
I went to my primary care doctor (Jyothi Rao of Columbia, MD) who was sharp enough to suspect avascular necrosis. She ordered an xray, which was normal, and then an MRI, which confirmed her suspicions. I had never heard of avascular necrosis (AVN). Sometimes called a "heart attack of the hip", apparently there was a one-time "event" where a blood clot formed in a blood vessel in my hip, cutting off the blood supply to the femoral head. Without its nourishment, the top portion of the femur died, leaving soft spongy tissue instead of hard bone. Eventually the cartilage disintegrates, the the joint becomes arthritic. The pain comes from bone hitting on bone, and apparently bone has many nerve endings in it. If left untreated, the hip would eventually "collapse". I didn't know what that meant but it didn't sound pleasant. I was put on crutches immediately to prevent any imminent collapse. I was referred to orthopedic surgeon Dr. Michael Mont of Sinai Hospital in Baltimore, one of the top experts in the country on AVN and joint replacement. Mont confirmed the AVN and suggested we do a core decompression surgery, where he would drill a small hole into the femoral head, to try to stimulate new bone growth. Mont told me he had a very high success rate with this surgery in patients with early stages of AVN like mine.
I had the surgery in January 2005 but it didn't help my pain level much. In fact, it was after the surgery, as I was convalescing, I began to experience strange symptoms that would eventually develop into mysterious and powerful bouts of pain, fatigue and weakness.
It began with a strange "electric" feeling in my front teeth. It was painful and constant. Then I would feel an incredible tightness and intense pain in my knees, hips and elbows. At my lowest point, I could barely bring food to my mouth to feed myself. I went to lots of doctors at this point. For a while it was thought that I had Lyme disease, and I sought treatment with Dr. Ross Stark, an eccentric but effective doctor of acupuncture in Annapolis. It was through him that I learned the "Secret to Happiness" (for me) -- epsom salts baths. I haven't been to him in years, but I am still a faithful epsom salts bather. 4 cups of epsom salts in a warm bath for 20 minutes. Sometimes this was the only thing that would help. Stark claimed that it was the cheapest and most effective way to detox. He was certain I had Lyme disease and treated me for that for about a year.
I did get much better by working with him, but not completely. I stopped working with him (and tried several other acupuncturists) and ended up being sent to a Rheumatologist and was prescribed medications (Lyrica, Cymbalta, Trazadone) to deal with my new diagnosis: FIBROMYALGIA. I don't believe in this "syndrome" exactly, and have read medical articles that connect Lyme to Fibro, and blood disorders like mine to auto-immune diseases and fibromyalgia in particular. So who knows? Oh, did I forget to mention that in the course of treatment for AVN, it was discovered that I have 2 genetic mutations that result in my body having a difficult time breaking up blood clots that form in my body. So the cause of my "idiopathic" AVN was actually a blood coagulation disorder I didn't know I had.
By the spring of 2006, I developed a strange and constant pain in the middle of the left side of my back. It became so painful and nagging that I tried to figure out what it was and FIX it. Though CT scans, MRIs, Xrays, etc. showed no reason for pain, no one was sure if the pain was caused by the unresolved AVN in my hip. I sought treatment through acupuncture, naturopathy, massage, reiki and anything else I could, but nothing helped and I was expending loads of cash and energy. I turned to pain management that included trigger point injections, epidural injections, cortisone shots to no avail. I was put on opioids, which have saved me from agony, but of course I didn't want to live the rest of my life on them.
Finally my pain management doctor admitted to me that the back pain was probably connected to my avascular necrosis after all. I left there, called and made an appointment with Dr. Mont, and even scheduled a surgery date, knowing it was time to do some kind of surgery.