A brief history of everything....

I found a tick burrowed in my neck around the age of 11 or 12. I remember it vividly, because I was so disgusted by the nasty little thing. I grew up in Pacific Grove, CA, where supposedly we don't have Lyme disease, so no one really thought much of it. My parents removed the tick, I gagged and squealed a few times over my disgust and then it was all but forgotten completely. Or, so I thought.

Now 22 years later, I sit and think back to that day and how profoundly different my life might be had we known that it had infected me and what to do about it at the time. I can't waste time in that place of what if, it's a spiraling energy with no positive outcome. I am here now. I have chronic Lyme disease.

I want to use this blog to share my journey as it happens and to give another voice to this disease, that is so misunderstood, misdiagnosed and mis-educated in the community and the medical community. I'm learning as I go. I have already learned so much. I never could have imagined that this kind of epidemic could be taking place and so many of us could be so completely oblivious to it. But, of course we are! The only reason I know anything about Lyme and the controversy surrounding it is because I got really ill and was having a terrible time getting any answers about what was happening to me, why it was happening and how to fix it. This is very complex, so I will try to give a brief version now and then write more elaborately on the details and emotions of the specific parts of this journey over time.

I have suffered with minor health problems over the years, but always thought of myself as a fairly healthy person. The last few years have been a nightmare in that realm. I have had migraines since I was 12, which I now have traced back to starting around the time of the tick bite. Everything I have endured as far as my body is concerned always seemed to have something circumstantial to explain it away. For example, I have had terrible pain with my neck and lower back which I always attributed to a car accident that I was in during my twenties. I had a surgery on my left foot in 2006 after tearing a ligament. The x-rays revealed that I have an extra bone in each foot and since the injury wasn't healing, the bone had to be removed and my foot was re-wired. I've continues to endure pain in both feet. I always assumed the left hurt from the surgery and the right from overcompensating. The truth is that my feet were hurting before the injury and most likely led to the injury itself. It's no secret that my beginnings were a bit rough, so when I began to suffer from panic attacks and depression in my teens, the reason always seemed to be attributed to my childhood. I worked very hard on these issues year after year and felt dismay and frustration when I would find myself still struggling despite my efforts.

But, the worst trouble began in 2008. I was having severe abdominal pains, cramps and excessive bleeding. I went in for answers. My gynecologist diagnosed rapidly growing fibroid tumors that were rare and extreme. Fibroid tumors are normal and many women have them. They usually grow over several years and women will have one or two. Mine were excessive, numerous, painful and unpredictable. They had grown in just a few months. Within a few weeks, I went from having a flat stomach to my uterus being at the stage of a six month pregnancy from the tumors. Tumor babies. Hhhmmm, not so cute. I was so grossed out and so disappointed. My doctor recommended that I have surgery immediately and biopsy to rule out one rare form of cancer. He also told me that he considered me to be in the top 5 rarest cases he'd seen in 36 years of practice and felt my case was so severe and odd that he wouldn't proceed until I was seen by Stanford specialists. The doctors at Stanford concurred with his findings and surgery was scheduled. I went into surgery not knowing whether a hysterectomy would be performed or whether I had this rare cancer. 6 pounds of fibroid tumors were removed, but they were able to save my uterus and the biopsy came back negative. Yay. I counted my blessings that day. This meant that there was still a slim chance that I would be able to get pregnant and have a baby. I was told by the doctors here and at Stanford that they didn't really know why any of this had happened, but the main suspect was hormone imbalance. I underwent several types of hormone therapy after the surgery to balance my system, but reacted very poorly. In the case of normal fibroids, there is a 50/50 chance that they will return after surgery. However, most women do not require further surgery. They believed that if they did return, they wouldn't return until my late thirties or early forties at the earliest. I was also told that if they did return, they would shrink with menopause. Why I was told any of this is beyond me, seeing as my case was rare in the first place, so why would these generalities even apply to me? The recovery period was awful, but I had hope and looked forward to being a miracle case and proceeding with my life and having children despite the odds. That did not happen. Nor, will it.

I began having more frequent migraines, extreme pain in my body, hot flashes, night sweats, swelling, edema and other symptoms. I was told these all were most likely from my "supposed" hormone imbalance. Just shy of two years to the date of my surgery, I felt pressure in my abdomen that shortly turned into uncontrollable pain. The bleeding issues and other symptoms flared up and quickly got worse, I went back in to get some answers. My tumors were back. They appeared to be rapidly growing again and the ultrasound showed a number of them. At this point, there was no chance of ever having children. If I were to become pregnant, uterine rupture was very likely and could take my life. It was suggested that I have a hysterectomy as soon as I felt ready to do so emotionally. I scheduled the surgery for the end of March with a heavy heart. As the days passed and the surgery date grew closer, my body was behaving incredibly strangely. I was having more widespread pain, exaggerated night sweats, migraines, fatigue and depression. The two weeks before the surgery, I became very ill. I canceled the surgery. I felt on a deep level that there was something much more serious going on underneath all of this and it needed to be found before I could have a major surgery again. I was pale, had days that it was hard to even stay upright, my joints started swelling, and I was having heart palpitations, memory loss and cognitive problems. Rings I had worn on my fingers for 12 years, suddenly wouldn't even slide over my top knuckle. I found myself feeling disoriented, succumbing to uncontrollable crying spells, feeling short of breath and became unable to continue to push through the pain and live my life productively. A heart murmur developed and was diagnosed and blood tests were sent out. I was told that I had an auto-immune disease, but they just didn't know which one. It came back that I was not absorbing or storing certain nutrients, vitamins and minerals and was very anemic. But, NO ONE KNEW WHY. I would give blood, go home to wonder and wait and the tests would come back inconclusive. Except for the hormone tests, those came back normal. Yes, that is right, I have no hormone imbalance. I was tested for everything you can imagine. My first Lyme test came back negative. I now know that you can not rely on the basic Lyme screening a regular doctor will send out for you. They are unreliable and pop 50+% false negatives. I began reading about all the auto-immune disorders and researching about my symptoms. I was feel ling scared, crazy and losing hope that I was going to get any kind of real help. It was an awful feeling. But, I kept at it. The Lyme symptom list looked like a road map to the last 20 years of my life. It was uncanny. In my gut, I felt like this was what was going on with me. And, this is when and how I found the answers to all the reasons that I had not been able to get an answer. The research has surpassed the guidelines written for the medical community, there is a lot of corruption with the CDC and IDSA, most doctors know very little about it and health insurance companies have worked very hard to not have to pay for the treatments. I will blog about the specifics of this soon. With the help personal, dear friends of mine and through the Lyme Associations, I made my way to a Lyme specialist. The full, reliable, expensive (out of pocket OF COURSE) tests were done. They came back positive. I finally had an answer. Treatment is expensive, lengthy and a battle. I will get sicker before I get better for a variety of reasons that I will share, but I am up for the job. The next phase of Chronic Lyme Disease presents like MS, Parkinson's and Lou Gehrig's disease to name a few, I don't have to time to waste. I started treatment last week. I have strapped myself in for the ride. Join me for the humor, adventure and the battle to get my body back here. I'll try not to bore you. My hope is that even one person reading this will see something in it that will answer a question for themselves or someone they love. Maybe it will help someone out there not have to get as ill as I did, before they get the help they need. This is an epidemic. I bet it blows your mind, the way it has blown mine...