May 2016 will officially be 8 years of burning. – No celebrations are planned.
If you have check
ed into this blog from time to time, you have seen me try all of the medicines and supplements and coping techniques that have come my way or been recommended by any of my Neurologists (three, so far).
If you have been reading this blog for a while, you know I have begun my 8th year with the chronic pain of Burning Mouth Syndrome (BMS).
There are two types of BMS. Continue reading
Today is Mother’s Day.
I have received cards and flowers and even a surprise Starbucks coffee from our daughter who lives near us. It is a good day, filled with memories of the two beautiful, bright babies who grew into incredibly cute and inquisitive toddlers, went through their individual awkward teen years and came out the other side as stunning and brilliant young women. Continue reading
I have been suffering from Burning Mouth Syndrome for nearly six and a half years now.
Every once in a while, what my Neurologist euphemistically refers to as “the persistence of it” overwhelms me and I have a brief, but intense pity party.
Instead of focusing on the optimistic side of the coin:
I occasionally dip into the pessimistic side:
I have been active on a Facebook Closed Support Group page for Burning Mouth Syndrome sufferers. It is a positive experience most of the time, but occasionally things take a turn for the worse, and I see people posting suicidal thoughts and deep despair. Continue reading
I told you recently in “The Patient Maze,” that I was filming a video interview about Burning Mouth Syndrome last month, and it is hitting the airwaves now. Continue reading
Image courtesy of cooldesign/ FreeDigitalPhotos.net
I have been reading about the Affordable Care Act snafus and victories with great interest. Here is a site that has very good coverage: Summary of the Affordable Care Act. I don’t begin to guess how this will all shake out, but from personal experience as a sufferer of Burning Mouth Syndrome, I can tell you that healthcare was a maze, to begin with; and an expensive maze at that! Continue reading
Image Courtesy of eyehook.com
I have been battling a dragon.
It breathed its fiery breath on me in 2006 for four months, disappeared as mysteriously as it came and then re-appeared in May of 2008 and has been my constant companion ever since. It is diffuse burning neuralgia that we finally are calling Burning Mouth Syndrome for lack of any closer diagnosis, since it began in the very back of my throat and palate (unusual for BMS) but has now spread to my tongue (typical in BMS). It may have been caused by dental procedures or a variety of things. We may never know.
There is no official cause and there is no cure, only management of the symptoms.
Through a plethora of specialists, medical tests (I won’t go into detail here because they were just too icky in many cases), vocal therapy, gastroenterology procedures, diagnostic nerve blocks, acupuncture, etc., I kept slogging along, hoping for a cure just around the next corner to no avail. Finally, after a year and a half of constant pain that was only relieved by sleeping or drugs that made me very sleepy, I hit a wall and got very depressed and laid down my sword.
Continue reading
A Burning Journey 