Grief Unexpressed & How You Can Help

“Anger can be grief unexpressed.”

I read that somewhere recently and thought, “Wow, I never really thought about it that way.”

I knew that anger is often linked to fear, but didn’t intuitively link it to grief. Most of us know that anger is a stage of grieving before you reach acceptance, but what if you or a friend or family member simply gets stuck there. Is there an appropriate time limit to mourning?

The answer is no.

Those of us who deal with the chronic pain of Burning Mouth Syndrome may go through successive cycles of grief. We grieve that we hurt and don’t know why. Then we grieve the myriad ways our lives have been changed or our activities hampered by pain. Then we grieve that we cannot talk about our pain because it has gone on so long that we feel we are burdening others when we speak of it. That’s a lot of grief, my friends, and I know you have experienced many different and sometimes difficult reactions from your family and friends over the years.

I recently saw a lovely video about helping your grieving loved ones and knew I had to share it with you.

Check it out at Refuge in Grief’s video: How to Help a Grieving Friend. There are Spanish and English subtitles you can choose if you need them, and it was a brief and coherent way to convey some very important information.

If I were grieving, I would hope that the person trying to comfort me had seen this video, and if I was comforting someone, I would be glad I had seen it.

Take a moment and check out the awesome power of acknowledgment. It will feel awkward at first; I won’t kid you about that, but it really does help that person you love or care about.

Be radical. Change the paradigm.

If you are dealing with chronic pain, tell your family and friends that they need to let things hurt and acknowledge that it hurts instead of trying to fix it, cure it or argue you into happiness.

Share this video and you may adjust expectations all around. 

You can do it, and so can I…so let’s make a choice to handle pain, grief, and sadness differently and start today.

 

 

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Aimovig, Erenumab, Migraines, Oh My!

There is a new migraine prevention medicine out there that is causing a lot of excitement in the chronic migraine sufferers of the world. Aimovig/Erenumab is the first and only FDA-approved Calcitonin Gene-Related Peptide (CGRP) receptor blocker and my friends who have been battling debilitating migraine pain for years are eager to try it.

You can learn more about this at Aimovig. It is available by prescription only and right now reports are coming in that the manufacturer has been overwhelmed by the demand and there may be a wait to get this self-injectable monthly migraine preventative.

Will it work for everyone? The magic 8 ball says, “Probably not.”

That is the case for any medication, my friends. It will help some more than others, and often for reasons we don’t know or understand. But it is definitely worth having a conversation with your doctor if you suffer from chronic or episodic migraines and you have tried all of the usual suspects without lasting relief. The manufacturer is careful to say that it will lessen the number of migraines you have, not eliminate them completely.

Now, here’s a question…Could it help with Burning Mouth Syndrome pain?

Only time and usage will tell. BMS sufferers can be a subset of the larger number of people who suffer from migraines, but some are not. I have had chronic migraines for nearly twenty years and will be trying this medication as soon as my local pharmacy receives it.  I will let you know if I perceive any relief of my primary BMS. This will be anecdotal, of course, and I have no expectation that any research will be done any time soon on this medicine’s effect on other chronic pain syndromes.

Fingers crossed!

Burning Mouth Syndrome & Your Teeth

When your mouth and tongue feel like they are on fire, the last thing you may be thinking of is going for a dental checkup or cleaning. Just the thought of someone messing around in your mouth, poking, prodding, and merely keeping your mouth open for that long can be daunting. But the consequences of leaving your teeth uncleaned and untreated can be so much worse than a temporary discomfort.

Trust me.

I suspect my Burning Mouth Syndrome was kickstarted by dental procedures on a tooth that abscessed, had a root canal, an apicoectomy when that didn’t work and when that failed as well, the tooth was eventually surgically extracted along with the one next to it. That’s a lot of trauma at once and I have never believed that the onset of this round of BMS was not connected. I ended up with a beautiful bridge, a roaring case of BMS, and found an excellent dentist who was aware of my situation and treated me with kindness, gentleness, and discernment

I go for checkups and cleaning every six months, and can always call if I am experiencing any pain or discomfort. In nearly ten years, I have not had another cavity or issue due to this regimen and chewing xylitol gum whenever I chew gum.

Will I eventually need a dental procedure? Odds are good.

I have one crown that has its enamel chipped off and another molar that is under close watch, so dental work is definitely in my future, but since my dentist knows my history we are waiting as long as possible to do anything that might have the side effect of worsening the burning. It will be unavoidable at some point, but we talk about it each time I visit and I trust that he will do the right thing at the right time.

So, when is the last time you went for a dental checkup? If it has been over a year, please take this as a reminder to take care of yourself if you possibly can.

Prevention now can keep you from more pain later, and that is always a good thing.

 

 

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When Burning Mouth Pain Takes Center Stage

I have been battling oak pollen allergies since the beginning of April. We got a good rain for a day, and a small respite, but the levels are back up in the medium category today and I feel it.

Burning Mouth Syndrome is a foe I have been battling for ten years now (Mother’s Day will mark the 10th anniversary…Yay?) and I have noticed a pattern that arises when I am forced to take decongestants along with my antihistamine because nasal congestion is rocking my world. There is no doubt in my mind that the drying action of the decongestants, although needed and effective for the life-sustaining action of breathing, also irritates the burning neuralgia of BMS. In spite of adding quarts of water to my intake, the pain has been nearly unbearable some days. When added to a string of migraines, triggered by sinus pressure, it has been a tough time.

I found myself looking forward to that next dose of Klonopin/Clonazepam so I could doze, even if I didn’t really have time to do that. To sit in my chair, watching TV with my husband, and just drifting off to sleep where the pain was not present was a gift on those high-burning days. But what do you do when you have things to do, people to see, and responsibilities that are not subject to rescheduling? What do you do when there is a once in a lifetime event going on, and you can’t afford to miss it?

You power through.  Continue reading

Cannabis for Burning Mouth Syndrome?

As many of us do, I haunt the online forums looking for new information or even unusual coping strategies for Burning Mouth Syndrome.  Interested in learning more about this mysterious chronic oral pain? Check out the BMS Support Website.

As I read the entries, questions, and answers, I realize that many people who are looking for Burning Mouth Syndrome support are not reporting its symptoms. Often, they are reporting much more worrisome symptoms like sores and lesions, extremely dry and cracked tongues, and other varied complaints regarding other parts of their bodies. I find myself thinking over and over, “That is not primary BMS. They need a second opinion and to investigate other underlying disorders.”

You see, primary BMS is invisible. I am not kidding! If a doctor (and believe me, I have had quite a few) looks into my mouth and throat even when I am burning most intensely, they will see nothing unusual. That is a hallmark of this syndrome and if you have visible symptoms, please seek a different diagnosis. It may be another condition that has a cure or medicines that can better treat your symptoms.

Wouldn’t that be great?

The other issue that has been floating around for ages but has gained traction as states have legalized marijuana for medical reasons or in general, is the question, “Could cannabis or CBD oil help with Burning Mouth?” Continue reading

Burning Mouth & Nothing New to Say

Ogg Rourke Wedding PartyI realized I haven’t posted since the holidays, and I could easily blame that on everything that has gone on…the wedding in November of our younger daughter went beautifully and just this month they surprised us with the house they are purchasing, our older daughter’s wedding approaches (so quickly!) in May and they have begun to build a house not too far away from us, and of course the day-to-day work of a being a busy philanthropist and volunteer!

Did I mention I am taking on another blog editing gig?? 😀 Continue reading

Burning Mouth Holidays

canstockphoto13938130The holidays are here and you are rushing around picking out gifts for those you love, preparing for travel or for travelers, and many of you may be under more stress than usual. As all of us who suffer from Burning Mouth Syndrome or other chronic pain conditions know, stress is not our friend.

What can you do to cope with the gulf that may exist between what you want to do and what you can do?

Press the pause button. Continue reading