INVISIBLE PAIN

“YOU LOOK FINE; YOU MUST BE FEELING GREAT!”

“HOW CAN A PRETTY GIRL LIKE YOU FEEL LOUSY? YOU LOOK HEALTHY!”

Image This was me then …2009

 

Image This is me now…2012

Can you see the difference?  When you look pretty good no one ever asks you how you feel.  It may not be that apparent but 2 ½ years ago my life changed.

This is what happened:

I was in the dentist’s chair having a temporary crown put into my upper right molar.  The dentist rested the full weight of her arm on my jaw as she made her assault on my tooth.  The banging and pulling was loud, brutal, and traumatic.  I wanted to tell her to stop but I was unable to move my mouth to speak, and I mustered up the courage to get through it.

Four days later I was out for lunch with my son and his friend and I realized I had a strange headache and that the inside of my mouth was pulsating.  “Maybe I’m coming down with something,” I thought to myself.  Feeling kind of weird I went home and took something for the headache.  It didn’t work.  Later on that night it felt as though my teeth didn’t fit into my mouth; that they were somehow lopsided and the top teeth didn’t meet the bottom teeth. My tongue felt out of place. The inside of my mouth… the gums, teeth and tongue… and under my chin were burning and throbbing.

Feeling the same way a couple of days later I made an appointment with my dentist to have a look at the work she had done. “You never checked my bite after the dental work,” I said.  “Well let me check it now,” I heard her say.   “Everything looks fine to me; maybe you have a virus; check with your primary care physician” she said.  “Just make an appointment when you’re feeling better and we’ll put in the permanent crown.”   I did as she said but my PCP couldn’t find anything wrong with me other than the suspicion that it had something to do with the work I had done in my mouth.

Over the next few weeks and months my headaches became much worse and it felt like the inside of my nose was constricted; similar to a sinus infection.   The area between my eyes looked swollen and was tender to the touch.  The pain affected my eyesight.  The persistent throbbing in my mouth and under my chin was sometimes unbearable.   Sharp sounds like the clanging of silverware or running the vacuum were very painful to my ears and I had to leave the room when I heard the sounds of dishes hitting each other as they were loaded into the dishwasher.

My PCP decided to do some tests – a cat scan of my sinuses, an MRI of my brain, and some blood work.  Everything came back pretty much normal other than some swelling of the nasal passages which had already been a problem since childhood.   I was put on an antibiotic for my sinuses in case there was an infection but that didn’t help at all.

I was becoming very depressed.  It’s a terrible feeling when you don’t know what is wrong and to whom to turn for help.  My PCP sent me to a series of specialists – a neurologist (who didn’t bother to do any testing), a sinus specialist in Boston (he said I was a complicated case and was afraid to do sinus surgery because of nerves in the area of the sinuses), an oral surgeon (he wasn’t sure what was causing the problems) and finally, Tufts Craniofacial Pain Center in Boston.   It was there that I received SOME of the answers.

A wonderful team of doctors did an assessment of my face, which began with measuring the amount of air coming out of my nostrils, checking my bite, feeling my jaw, measuring both sides of the inside of my mouth; rearranging my jaw with their fingers inside of my mouth, studying the movement of my mouth and jaw, etc.  The verdict:  TMD – temporomandibular joint dysfunction with some facial neuropathy of the trigeminal nerve.  In other words my jaw was out of alignment from my dental work and it had changed the structure of my face, affecting the nerves in my face. I was referred to one of their doctors who lived much closer to my home and soon I was fitted for two “appliances” that I would have to wear day and night.  One was to realign my jaw and keep me from clenching it when I was stressed, and the other to prevent the grinding of teeth during sleep.  I was also sent for craniosacral and lymphatic drainage physical therapy.

Two and a half years later none of these issues have been resolved.  Now there are times when I can’t chew, when I can’t open my mouth wide enough to take a bite, when the change in barometric pressure makes an assault on my face and nerves.  I’ve had to wear ear plugs at some of my son’s concerts, eat soft foods, and I rarely go out at night because the pain is much worse at the end of the day from talking, chewing, laughing, yawning…everyday life.

One Saturday afternoon my husband and I decided to take a drive to Wachusett Mountain which was about 45 minutes from my house.  As we made our way closer and closer to the mountain a pressure headache began and I started to feel nauseous.    By the time we made it up to the summit we had to pull over and stop.  I spent the rest of the day in bed with an awful migraine.  I have missed concerts, parties, dinners, and trips.  There are times I have to wear ear plugs at a restaurant because the sound of the dishes clanging is too acute for my ears.

This is what I call my new normal.

Sometimes it is okay and at other times it is not.

Sadly a couple of the people I thought would be there to support and love me through the tougher times had no empathy.  I have had to make some tough decisions about their presence in my life as I no longer have time for critical, insensitive, uncaring non-believers.  My circle of friends may be smaller but we are mutually supportive and understanding of each other’s lives.  We don’t judge each other; we listen, offer a shoulder; sometimes we cry together.

Some people who have chronic pain do wonderful things with their lives.  They channel their pain into artistic endeavors; they write poetry or take photographs of the beauty that lies outside of their narrowed world. The only thing I have to offer are some insights and valuable lessons that pain has taught me.   I have learned to be kinder, less judgmental, and more empathetic to others.  It is easy to say “I Love You” to the people who are still a part of my life and love me even though I have changed.  I value the times when I feel good.  I find peace in knowing that we all have our own battles to face and I have come to know that I can handle mine.

Remember, everyone carries their own pain; some of it is visible and some of it is not. 

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10 Comments

  1. September 2, 2012 at 10:21 pm

    Here’s to wonderful things, large and small. z

  2. Bourbon said,

    September 2, 2012 at 10:34 pm

    That all sounds so incredibly painful; physically and emotionally. I am sorry xx

    • lapetinaa said,

      September 2, 2012 at 11:06 pm

      Yes; it has been, but my mind is in a much better place now. Thank you for reading.

  3. Sam said,

    September 3, 2012 at 2:51 am

    I’m so sorry Amy! You know I understand & we’ll get through it all together! Love you, Sister!

    • lapetinaa said,

      September 3, 2012 at 12:26 pm

      You don’t have to be sorry, Sam. That was my point. We all have our own troubles. I know we will get through all of it together. I love you, too!! xxxxxx

  4. Pat Bailey said,

    November 5, 2012 at 1:02 am

    I glad you shared your story. I understand how quickly the rug can be pulled out from under us and life can change so drastically. So many losses that it takes time to figure out how to put our life back together. I look forward to following your blog.

    • lapetinaa said,

      November 5, 2012 at 1:20 am

      I admire you so much for putting your life back together. I want to do the same thing; it’s so hard. I’m not the person that I used to be and I am having a hard time finding my “happy”. I am always worried that I’m not going to feel good or that I’m going to ruin some one else’s good time. How did you have the courage to keep trying?

      • Pat Bailey said,

        November 5, 2012 at 1:32 am

        I didn’t always have the courage. Sometimes I wanted to give up – but I didn’t know how except suicide. That wasn’t an acceptable option but there were times when I would start to think that running into a tree and dying didn’t sound so bad. That would be when I knew it was time to talk to my doctor and my grief therapist. It took me a long time, lapetinaa, and happened a little at a time. It helped me to keep a journal because I could go back and say – wow I am a lot better now than I was a year ago. Please hang in there and do what you need to do for yourself. We will make it trough one more day – and I hope you can find a few minutes of happy. I know you will because you feel worse at night because you talked and laughed during the day. I think it is worth it – and work with your doctor to find ways to control pain at night.

  5. lapetinaa said,

    November 5, 2012 at 1:35 am

    You are right, Pat! Thank you for your encouragement and kindness. I think you are doing such good work for others through your blog.


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