By Jennifer Hochgesang, Guest Columnist
Doctor, I have a pain condition. It cannot be measured or quantified. You have to rely on me - the person living in my body every day for my entire life - as an indicator of how I am doing and how the treatments and medications are working. I may not respond in ways you think I should.
If it was simply blood pressure, you could take it and judge where I am on your own. Unfortunately for both of us, my condition is not that simple. A rapid pulse and high blood pressure is an indication for me that I am in a lot of pain.
I am used to being in pain all day long every day. I have a good mask and I'm especially quiet when in pain. Please, write that down. I am gabbing a lot and feeling okay today, but when I am in great pain – I will be very, very quiet and still. I may even force a smile.
We are tricky creatures, chronic pain patients, and it takes time to understand us individually. You did not pick an easy job.
Do you see where I am going with this? Yes, we need to create a bond. I will share the signs of my body with you. Will you promise to listen? I would like that very much.
At the very least, let’s agree on my pain levels. When you ask me for a number, that number should mean the same thing to both of us. These numbers are very subjective, so let me help you.
A number 3 means that I feel discomfort, but I can get on with my day and even preoccupy myself with other things. A number 7 means I am barely able to talk because that is a trigger for my facial pain from trigeminal neuralgia. When that happens, I use sign language to communicate with my daughter.
If I give a number 10, I will be in the ER and will need the doctors there to listen to me because I know the only medication that will stop the flare. I have only reached 10 three times in my life, so you will need to know what it means when I have it. I won’t be able to talk. I’ve found that IV Dilantin is the best thing for my worst flares, but I’ve had doctors unwilling to give it.
If I’m at number 11, I will be unconscious and talking to a dream doctor so I will trust you have that part covered.
Like I said, you did not pick an easy job. But, neither did I. Please don’t forget that I did not choose this. Our appointments go by so quickly and sometimes there’s isn’t enough time to ask questions. I need a little extra time to talk about side effects or a possible procedure. Can we make sure that’s possible?
You will need to get to know me. I have trigeminal neuralgia and multiple sclerosis. I am a mother with a beautiful, wonderful, kind, smart and silly 7-year old daughter.
I am disabled by pain 24/7, but want to work with you to change that so I can care for my daughter and play with her; so I can call my friends and clean my basement; so I can do my four-month old bills; and wake up and actually smile genuinely and fearlessly one day.
I promise I will sign your pain contract and follow it faithfully, but you need to sign mine as well.
Jennifer Hochgesang lives in Illinois. Jennifer proudly supports myMSteam, an online social network for people living with multiple sclerosis, and Living With Facial Pain, an online support group for people living with facial pain.
Pain News Network invites other readers to share their stories with us. Send them to firstname.lastname@example.org.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.