As of late, my gums have been inflamed. My tongue feels enlarged and burn. I wake up at night with the most severe dry mouth I have ever imagined – water doesn’t even help. Add to that an unfinished root canal and I headed to the dentist. I assumed they would just need to finish the root canal and send me on my way.
“Have you ever heard of Sjogren’s? One of the Williams sisters has it!” As if a celebrity tennis player’s diagnosis was going to make me feel better about a secondary diagnosis.
I listened to the dentist ask me about my symptoms with tears in my eyes. I nodded as she went down the list: joint pain, fatigue, “dry lady parts”, dry mouth, etc. It all made sense, of course. We connected the dots and she handed me a referral.
But why didn’t this show up in my blood panel this past summer? Why the sudden onset? Is this just what happens? First Fibromyalgia, now a secondary auto-immune syndrome? What’s next? I cried. Not only was my body angry with me for sitting in a dentist chair for an hour, but I was overwhelmed.
Another chronic problem. Another source of pain and problems. Another round of prescriptions I will probably throw out. The side effects usually aren’t worth it.
Of course I hit the google button as soon as I dragged myself back into my husband’s truck. He knew something was wrong as I sat silently, blinking little tears from my eyes. I felt defeated. No, I’m not going to die. I am just going to live the rest of my life feeling like I’m dying. That’s the only way I could explain it to him. It’s hard for me to verbalize what I’m feeling. I suppose this is why I am a writer. But today I did my best to speak up.
“My body hates me. All day, every day. It never stops. I feel wrecked but I have to keep a smile on my face. When I look at the statistics of people who have committed suicide due to chronic pain, I get it. I do. Because it’s not a death sentence but we are given a life sentence to be prisoners in our own bodies. Most days I don’t want to get up. I want to drug myself to sleep and wake up when it doesn’t hurt. But I can’t. I have to get up and go and work and be present for our children. Our children are my lifeline. And I don’t complain or whine but today I am going to. Because it just sucks.”
And now more tests, more meds. But also more understanding. Maybe I will feel better by knowing what’s happening to me and why. Sometimes we have to cling to that little comfort of knowledge so we can treat our bodies with a little less hate every day.
For more information on Sjogren’s Syndrome, please check out Sjogren’s Syndrome Foundation.