These are the secrets whispered in rheumatologists’ offices as we attempt to communicate our daily reality. Communication is one of the most important tools in medicine, and it goes both ways. I must find words my doctors understand. It’s surprising what gets through and what doesn’t.
Saying, “I am crushed with fatigue, and my pain is often unbearable,” means nothing. Most doctors haven’t experienced the combination of those two common autoimmune factors. I wish this cartoon wasn’t so accurate.
My pain is constant. It lives somewhere between my muscles and my skin, ‘twixt muscle and bone. It’s body-wide, and some factor inherit in it strikes terror in my heart. I have a constant feeling that it could drag me outside my control, and on occasion it does. All I can do then is cry. Until I got sick three years ago, I had never experienced such pain.
It takes an average of five years to diagnose an autoimmune disease. In the meantime, there is no respite prescribed for pain and fatigue other than exercise and yoga. I already do both. No over-the-counter pain relief is prescribed, because it’s harmful to take OTC drugs every day. Nor can the disease be treated to stop its worsening, because no one knows what it is yet.
So I go through days where I’m skating along a razor-edge of pain, but taking no pain relief, because it harms my body. I find my words are terse. I cry more easily. My feelings are easily hurt. I’m more abrupt in my speech. I must tell myself to smile to soften any lapses. I’m learning to apologize often and quickly, and to recognize when pain drives my speech patterns and my actions. All of this breaking down of me brings growth.
Never in my life have I ever craved alcohol until now. Before this, I drank maybe a few times a year. But now my Unbearable-Pain Cocktail consists of two naproxen, two extra-strength acetaminophen a few hours later if no relief is gained, and when they both make no dent, one glass of wine or beer. Only one. Sometimes I skip the acetaminophen and go right to the alcohol.
I’m not a wimp. I have a high threshold of pain. I was an athlete. I birthed my children naturally. I’m a tough chick. I had stitches once with no injected pain relief. I don’t really care for alcohol. Most of it tastes bad. Alcohol is even more harmful to my body with this chronic illness. It’s a poison. I’ve never been drunk in my life, but in these past three years I’ve been tipsy on occasion.
This is what pain is doing to me.
This confession of my current experience impacted my new rheumatologist. I had to divulge the gritty truth. The words got through. She didn’t know me when I was healthy. She’s never experienced chronic pain. You probably haven’t either. I hope you never do. I communicated with naked honesty, and she heard me.
And so, she ordered repeats of all my lab work, and she prescribed a drug to actually treat the disease I now show the most probability of having – Lupus (SLE). Maybe. If the medicine helps my pain and my symptoms, we’ll know my diagnosis and I’ll get some relief. If it doesn’t, I’ll simply stop taking it, and we’ll be back to square one. It takes about four months to work.
Meanwhile, the testing to evaluate the diagnosis of Limited Scleroderma has shown that, so far, only my hands and feet, my spastic esophagus, and my circulation are affected. Praise God that my internal organs are relatively unscathed! Hallelujah! Since life expectancy is five to seven years when that happens, I am so grateful! Only my appointment with the cardiologist remains.
This is all fantastic news – merciful relief! But confusing. The final diagnosis is still veiled. Is that initial diagnosis accurate? Do I have both of these systemic autoimmune diseases? We don’t know yet.
I’m frustrated not knowing for certain, but this is exactly as God has designed for my good. He alone knows what will make me into the woman He intends me to be. He alone knows what is truly good in my life. I love Him even more as He draws me closer in this. He has experienced pain without relief, and He is mercifully with me. I trust Him.
Will you please pray for me and for my doctors?