Burning Mouth Syndrome – My Tongue is a Star

Burning Mouth Tongue

NOTE: Although this post will remain on Kali’s OQM Musings, it has been reproduced and future BMS posts will appear on A Burning Journey. Please check it out if you are interested in more about Burning Mouth Syndrome.

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 air waves now.

Many thanks to Charlene Bert and her crew from NPN Media who did a great job and were very sensitive and caring during the process.

Chicago’s CBS Channel 2 coverage was the first I saw and that link is no longer active. There is a subsequent story (January 2014) that ran in Southern California on ABC and another from CBS Miami, and News 4 in Georgia. More recently (February 2014), 19 Action News in Ohio picked up the story and in June, 2014 it appeared in Boston. In December 2014, it resurfaced in Milwaukee. There is one statement in the videos that is not complete. Nerve damage is not actually ruled out in BMS. I have had three diagnostic nerve blocks that failed to relieve my pain, but the specialist informed me that there are many hair-like nerve fibers in the mouth and tongue and there is no way to block them. So, if your BMS is possibly related to dental procedures, as I suspect mine is, there is no way to truly “rule nerve damage out.”

I am not thrilled with my appearance in the video. It is obvious this syndrome has added stress, age and weight to me over the past few years as I cope with it. I know from reading posts from my fellow sufferers on the Facebook Burning Mouth Syndrome (BMS) support group that I am not alone in this. We often only derive complete relief (for a limited time) from eating or drinking and the only long-term relief occurs when we sleep. We take medicines that make us tired and drowsy and often we are affected by varying levels of depression as we realize that this is not going away, we may never know what caused it, and there is no cure.

It is truly a sentence without an end date.

I know that everyone who suffers from chronic pain goes through stages of grief and coping strategies. We are certainly not alone, but that is how it feels at times when family and friends assume your pain is gone because you look fine, are functioning, and are getting on with your life. As I have said before in BMS and Me, “We stop talking about it because there is nothing new to say.”

So, how can you as a friend or family member help? Continue reading

Owning Your Thoughts – Social and Emotional Learning

Seedling Kids My very wise and philosophical friend Hjalmar said he had heard a quote along the way that he wanted to share with me. “You don’t own your first thought…but you do own your second.” He went on to explain that the first thought we have when something happens is often very instinctive. It can be “fight or flight” related and evoke an extremely emotional and reactive response.  

I thought about this and agreed, but added a third part to the quote. I said, “You are right. You don’t own your first thought, but you do own your second, and you definitely own your actions after that!” We both laughed, but it is so true, and it is something important we must teach our children along the way.

Dr. Stephen Covey covered this very well in his writing about proactive behavior. You can read about it at a very accessible level in his son, Sean Covey’s “7 Habits of Highly Effective Teens.”

The Coveys captured the principle with, “You cannot control what the world does around you.  You can control how you react to it…and ultimately how you behave.” That is proactive behavior and the earlier your child grasps this, the more advantage he or she will have in the world.

Schools throughout the nation are becoming aware that it is not enough to teach the basics of education to children, particularly if they have been raised in low socio-economic or other difficult circumstances. Many of these children have not been exposed to self-control techniques, just as they have not been exposed to early childhood enrichment activities. Educators are becoming aware that in order to be taught, children need to be rested, healthy, fed, and understand how to control their emotions and behaviors. Continue reading

A Life For Sale

Business, family, life or anything else, include one constant…CHANGE.

The successful manager expects it and manages for it and the unsuccessful manager stands gaping as the riptide carries him or her out to sea along with everyone else who thought everything would always remain the same.

House

image courtesy of Trey Ratcliff- http://www.stuckincustoms.com

Our family is changing rapidly and one large change we are going through right now is downsizing as one of the girls has graduated from college and the other is starting her half-way point and will soon be done. We are selling our home of seven years and changing our living space drastically and in the midst of all of this my incredibly spiritual and insightful husband had an epiphany.

As we touched up paint, trimmed landscaping, replaced old carpet and generally made our house look as beautiful as it has ever looked, he said, “This is how it works isn’t it? We get used to things and put them off, and only when we are about to sell something do we take the time to really look at it closely and fix it up as close to perfection as we can.” I laughed and agreed that was true. Not only with houses, but cars and other things as well!

He said, “What if you had to sell your life, right here and now, what things would you fix up?”

I was stunned. I started to think seriously about his question.What would I fix up if I had to sell my life? What would I change or do better or do more? It’s been a pretty darned good life. Not perfect, for sure, but exciting and productive and has accomplished some good things…but is it good enough to sell?

Continue reading