Friday, January 21, 2011


Thank you for visiting my blog!  I have started this blog to share my journey and hopefully help others afflicted with Chronic Neuro-Immune Diseases. 

A Background About Me:

I am a wife and mom of 2 wonderful kids.  Life was going along great until I was struck with a serious illness.

In 2007 I came down with the worst flu that I had ever experienced! After 2 months suffering, I began to see my family practice physician to complain of incapacitating exhaustion and malaise. My Physician began running tests for multiple diseases. In September 2007, still debilitated by exhaustion, my physician found that my Epstein Barr Titers were high, my lymphnodes were swollen, my throat was red and sore, and with my unrelenting fatigue gave me a diagnosis of Chronic Fatigue Syndrome. During this time, I began getting headaches every day and migraines at least 3 days a week, my throat also began closing, when I ate certain foods or took certain antibiotics. I began feeling excruciating pain all over my body, especially in my back, Achilles tendons, and legs. Sharp, pulsating pain began to travel through my body, and I noticed that my body was continuously flu like achy. My vision in my right eye (left eye is legally blind) began to blur, and I noticed that the fluorescent lights at work and stores made me nauseous and even sicker. I couldn't concentrate, could barely sit up, and felt "foggy" mentally all the time. I felt as if I'd been hit by a truck and was extremely weak and overwhelmingly, debilitatingly exhausted, beyond anything I'd ever experienced. I was barely able to shower and would drag myself back to bed, shaking from fatigue and malaise. Other than headaches, I had none of these symptoms prior to the onset of my illness in June 2007.

In December 2007, I began going to a Rheumatologist who also diagnosed me with Chronic Fatigue Syndrome and Fibromyalgia, and began treating me for both conditions.

In January 2008, I began to forget simple tasks that I had always remembered before, and it was affecting my work. I constantly felt like I could not think clearly, like I was coming out of anesthesia. I would often come to work and fall sleep at my desk from illness and exhaustion – something that I had never done in the past. I went from a high performing employee to someone who could not stay awake or mentally function enough to do my job any longer. Outside of work, I spent my time resting in bed every evening and every weekend. I continued to struggle at work and it began to show.

In February 2008, I could no longer function. My manager watched my physical, and convinced me that I needed to go to my Doctor get a medical leave so that I could take some time to get well. I did not want to leave my career of 15 years, but knew that I was not able to function at work any longer. This was devastating to me.

Since then, my life has changed. I haven't (on orders of my physician and my body) been to work since February 2008.  My new career is to get well and to help as many people as a can along the way!

Lucky for me, I live in Northern California right between Stanford University and the Whittemore Peterson Institute.  I am a part of studies at both Institutions.  With the science publication in October 2009 linking the Retrovirus XMRV to Neuro-Immune Diseases, I am hopeful that Dr. Mikovits and her team have found what is causing my immune system to fail.

Living will illness everyday like I do is no easy task! My faith and internal strength are remarkably healthy, especially given all I've lost and
the uncertainty of my prognosis. I do my best to see every day as a new day, with tomorrow being one day closer to good health and getting my life and work back. It is my hope that treatment and a cure is just around the corner!

1 comment:

  1. So what do the rest of us do in the meantime? I, along with millions of others,still suffer horribly with CFIDS/ME and severe FMS. Mine has gotten worse over the past 14 years which is almost impossible to imagine.But when I am pretty much bedbound and I hear of others having access to not just one, but two research testing groups, while I'm glad someone is feeling better,I'm about to leave this planet as my life is pretty well gone with the horrible pain in every cell in my body and the fact that if it weren't for my dh, I'd have to be in a nursing facility. I would love to be in a research group. At least then, I might have some semblance of relief and some hope that things might get better.