Mother’s Day with Burning Mouth Syndrome

Kali & GirlsToday 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.

They have thrilled, frightened, frustrated and enthralled me from the beginning and I celebrate today that we have come through their adolescence into warm, loving and mentoring relationships that result in having a great time together.

This family laughs a lot, and I am truly blessed!

But, this is also an anniversary.  

Seven years ago I started my second and current bout with Burning Mouth Syndrome and it has not left me yet.
For those who have been suffering from this chronic, diffuse burning pain for decades, a seventh anniversary is underwhelming I am sure. But for me, it has been the longest relationship I have ever had with pain and I have learned so much from the journey.

  • I have learned that I must be my own advocate. I must study, stay informed, and be able to express my medical history in bite-sized chunks that a new specialist (and there is always a new specialist…) can understand and synthesize into a possible treatment plan.
  • I have learned the concept of “ramping” a medication dosage up and down gradually. This is essential to anyone who is trying something new and discovering it either doesn’t work or doesn’t work at that particular dosage. Never simply stop a neurological pain medication unless your doctor specifically tells you to.
  • I have learned that what helps me doesn’t necessarily help everyone, and the b
    est way to express this without making others feel like you are telling them what to do or giving them medical advice is to be specific in your “I message.” —  “When I tried this, it seemed to help me.” “Trying the hot pepper rinse did not help me but may help others.” You get the drift.
  • I have learned that there are things that help and things that irritate, and although I can control for some of these variables, often I will be at the mercy of many things outside my control and I must endure and adapt.
  • I have learned that I am lucky. Lucky to have been diagnosed. Lucky to have medical professionals who care and are open to trying new things to help me. Lucky to live where medical care is encouraged, available, and within my means. Lucky to have found at least one medicine that helps. Lucky to have faith in God, and through this, to have hope.
  • I have learned that I am alone. Others may sympathize or empathize, but unless they have experienced this kind of mysterious chronic pain, it will be impossible for them to understand the incredible persistence of it and the way it underlies your existence every single day. Perhaps that is a good thing because just living life with those you love can allow you to be distracted from the pain from time to time and those intervals are wonderful.
  • I have learned that I am NOT alone. There are hundreds of thousands of Burning Mouth Syndrome sufferers around the world, and many don’t even know what it is they are suffering from because they have not found a doctor yet who has made the diagnosis.

So, today I start the eighth year. Maybe it will be the last.




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