First Entry

Dear Readers,

I have toyed with the idea of creating a weblog about my experience with CTCL for a long time. In the beginning of my diagnosis it seemed very difficult to find accurate, helpful information about this particular disease. The more I searched during the years preceding my final diagnosis the more frightening and weird the information seemed to get. And of course, like many of you who suffer from this illness, I had diagnosed myself at one point- only to be told by my then dermatologist "you don't have MF. That's a disease that strikes more men than women and more African-American men than caucasian..." (which is true!) I share that exchange not to in any way question the competency of that particular doctor, but rather to make the point that Mycosis Fungoides is such a rare disorder that most people have had it for a long time (compared with other lymphomas) before they are accurately diagnosed. This brings me back to the reason for this blog --- to share my experiences and help others help themselves by knowing what to look for and what to ask and demand from your medical providers. Perhaps you are reading this because someone you love is afflicted with this disease...my hat is off to you! If MF is bizarre to those who actually suffer from the disease, rest assured we understand it seems even moreso to you. It takes a beautiful person to dedicate oneself to helping an MF patient and every kind act is received somewhere in the universe and comes back to you eventually. Thank you!

I welcome any questions and for the record, the information and knowledge I possess is purely anecdotal and experiential. I DO NOT represent myself as an EXPERT in any way. I am not a medical professional and any questions involving diagnoses should be directed to your doctors.

I would like to keep this first entry brief and having introduced myself and the purpose for my weblog, I'll save more detailed information until I've had a chance to review this process and work out the initial kinks. This is a new experience for me and I thank you for coming along with me. In the meantime, search for other blogs about MF. There are exceptionally brave individuals out here in blogworld willing to share and help. I subscribe to them and you should, too.

Thanks for reading and thanks for your patience.
Peace & Blessings to you and yours,