Have you ever had a person say to " You know you could laugh or smile it will not kill you?”
I have. I was speechless, shocked and did not know how to respond. I thought I was having a great day. This lady said she saw me earlier that day walking outside and I looked grumpy. I just looked at her and shooked my head and said I really enjoyed my walk today. In joking she said “You know you could laugh or smile more it will not kill you?” I nodded and give her a half smile. Then said add the comment "You do not want to be known as the grumpy old lady do you?" Again I nodded and half heartily smiled no. I really want to tell her this:
How I would love to be able to smile ear to ear and have my eyes open wide and laughing so hard that tears are rolling down by face and holding my stomach. I would love to laugh like that. Instead I need to stay incomplete control and do not cross over that fine line. You see if I allow myself to lose control and really laugh. Two things will happen; First things the tears feel like razor blades cutting my face as they roll down and the burningfeel it leaves behind for hours later along with the pain in my eye. Second thing is; as I laugh out uncontrollable I can feel my throat start to close up. I start to cough and cough. It becomes very hard to breathe. The wheezingstarts and even more tears start to roll down not because it is funny but it is hard to breath, face is burning and the little fire crackers have started to go off. The pain is increasing at a rapid rate with every cough and zapping my energylevel at the same time. The fun time has gone into a possible breathing emergency and a possible jumping point for a flare up (pain) in the face that my last for a few minutes to weeks if not months.It is not that I am grumpy, depressed, or had a bad Botox treatment that has prevented me from smiling or laughing. I would Love to take part in the fun too instead of setting on the side line, be in the base ball game but never be able to go up to bat. I often excuse myself and go and sit in the bathroom or in a corner away from people. I know, I know this is why people think I am anti social and grumpy depressed lady. I need to separate myself soI can keep myself under control or get myself back into control. It’s just at the end of the day I do not want to be in pain. I do not want to have an Asthma attack and have a tube put down my throat to help me to breath, ruining other people’s fun or coughing so hard that I pee myself (We all have done it)At the end of the day a simple smile can hurt.
So please next time when you pass by and say at least “You could laugh or smile it will not kill you?”
Well in my case it just may!!
I watch and listen to people laugh loudly and cry. I wish and pray I could do the same.
In the 17 years I've been talking with face pain patients as an advocate and supporter, I've heard your story more than once, Lori. I don't know that there is any particularly snappy "come back" that can help people understand the mixture of feelings you experience in many of your days. But there was one story that a patient told me which I contributed to the book "Striking Back" that maybe goes part way. This is a close paraphrase.
"To understand how I go through each and every day, you have to imagine that I am followed through every waking hour by an invisible 8-foot tall demon. The demon pulls along with him, a little brazier of hot coals, in which he has placed several implements: a couple of knitting needles, a scalpel, a fireplace poker, a butcher knife. At random moments throughout the day -- but especially when he sees that I'm not anticipating what he is about to do -- the demon reaches into the brazier for one of his tools, and rams the red-hot implement through my cheek and eye, twisting the knife as he does. As I fall to my knees and curl up in a foetal position, I - silently and unable to speak aloud -plead with him in my thoughts to stop. But he never does, until my facial nerves have gone numb from repeated battering by this pain. He will do the same to me a few hours later, and there is no relief... "
I know it's an horrendous story, Lori. But you have my permission to print it out and give it to anyone who just doesn't "get it".
Hi Lorrie Thinking of you. Couldn’t brush my teeth this morning. I’m better tonight. So many things people take for granted. Who thinks about their trigeminals ? I hope you have a better day tomorrow. I’m wondering what kinds of meds are you taking.
It may not kill us but it sure as heck hurts like it might. I’ve figured out(aka trained myself) to only do a half smile when I am amused. It looks odd but at least those around me know I am smiling when I make that face.
Red what a great story. My family knows how laughing and smiling hurts me and sometimes when we are together and the jokes and mayham is flying, they see the half smile (ala Christy), they try to tone it down a bit, but the harder they try the worse they become. My wife slips me one of my Percocets and gives me a loving pat, it is the best she can do. But I have to say that even with all the pain, the love in the family with all the jokes and mayham, I would not trade for an instant, it hurts like heck but also gives me strength.
Jerry, your thought is one of those which i am trying to weave into an in-work article for the site, to be titled "Coping With Crisis". Remaining connected and refusing to be isolated or defined by our pain is one of the steps that can reduce or lighten the emotional load that patients carry and that their families carry with them -- often unknowing of just how deeply the pain goes. There is another thread on the site titled "But you look fine", which also casts some light in this direction.
Hardy laughter or crying.... both hurt equally, but the laughter hurts me less. ??? Yah, I don't understand but that's how it is. If I can't do either when the pain is peaking, I just pretend I don't hear what is going on around me.
When I've been told to smile or laugh, it'll make me feel better, I respond to them "walk a block in my shoes, then tell me that is so". That usually shuts them up or respond with simple apology.
Before our afflictions, how many times have we encountered the "grumpy old men/women" and thought, "I wonder what is or has been so bad they are so grumpy & frowny?" According to what I've read thus far, TN is mostly diagnosed in people over age 50, mainly women. How many people in their 60's, 70's & 80's are walking around with this undiagosed & untreated, chalking it up to "growing old"?
TN needs to be better recognized by the medical profession, especially in geriatrics. Perhaps then more research will be done to more readily diagnose and effectively treat TN, preferrably without debilitating drug side effects.
Catarinka, I would gently contradict you in one limited regard: there is ample evidence that any activity which makes you smile is a source of increased endorphins in the blood stream, with consequent improvement in physical sensation throughout the body. One startling book in this area of medicine is an old one: "Anatomy of an Illness" by Norman Cousins. It's worth reading. Believe it or not, attitude is an important part of pain control. And believe me, nobody who had it would even remotely mistake a case of TN for just another symptom of growing old.
I think your instincts are in the right direction concerning research. It is finally being recognized that in the research agenda of NIH, chronic neuropathic pain conditions are grossly under-funded. What is generally *not* recognized, however, is that existing medical insurance systems have created absolutely pernicious disincentives to doctors for understanding and treating pain, by refusing to allocate sufficient billable time for in-depth evaluation and development of treatment plans.
Sometimes it's one step forward and two steps back. One day at a time...
Richard, you are so right! Even though the initial laughter can be painful, afterward there is a noticeable decrease in the pain levels. It helps I have family & friends plus 3 grandbabies I see regularly to assist in keeping my spirits up, not to mention our quirky sense of humor. If there isn't laughter in our home at least 3 or 4 times a day, something needs to get stirred up to get back to our sense of "normal". Tee hee.
As far as insurance goes, most people I know are insured through a group plan offered by their employer (as I am). Since the '90's I worked in the health insurance field up until about 4 years ago and, yes, many plans out there do reward physicians to limit diagnostic tests and treatments for as long as possible, and most of those plans are only administered on behalf of the employers since most of those plans are owned by the companies covering their employees. That is how insurance companies can make profit to make up for the years they have losses in addition to holding down the premium costs for the employers owning these plans being administered.
Fortunately for me I work for a company that has a group plan geared toward finding & fixing medical problems as expeditiously as possible, not rewards for shortcuts or "cheap" treatments. It truly is one of the few businesses out there who look out for the well being of their employees (I am truly blessed to work for this company). Plus we have the option of a flexible spending account up to $5000 for an individual. Most generous FSA plan I've ever seen. Most generous employer I've ever worked for as well! :-)
Thank you for your response. I needed that reminder to prevent changes in my home and life! Gotta remind those kids & my husband to continue to be as silly and funny as ever, not to hold back.
One additional note on the "grumpy old men/women". My grandmother attributed her hemi-face & head pain to "growing old". My father had the same affliction, once again attributing it to old age (he was in his mid '60's when his began). In the area where I live, many elderly do not seek medical attention as their income is limited & healthcare costs are high. Plus Medicare is one of those to pay the least & approve the smallest of treatments for severe ailments... I saw both my parents go through this until medical providers found they had more than just Medicare. Sad, but true. Get the biggest buck for the bang!
Once the retirement insurance plan & Medicare lifetime max were met on my father, he was shifted to state insurance & the quality of care declined immensely in a matter of days! Of course we all (my mother, 5 siblings & I) intervened & it improved quickly again. Sad, but true too often.
Lol- Thanks guys. It is not so much the pain but that when I real have a gut renching laughing my throat starts to close and I start to cough and cough. Then it become very hard to breath and the pain. It puts me at a higher risk of having a Addision crisses. Recently, I was not even laughing hard it was more like a lite giggle my throat close up tighter than a clam. I don’t remember much after that. Just waking up in the ER with a tube down. In most case laughing is the the best medicine hands down. For me it not.
