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?
Stay strong and keep praying. I will pray for you as well. I can’t imagine what you are going through.
I write to make visible what is invisible, hoping this brings more understanding to these diseases. Your comment means a lot! Thank you for your prayers, Sylvia! I’m so grateful!
What a horrible trial. I’m so blessed to know that you are relying on God during this time. Whispered a prayer for you and your doctors this morning. I have faith God will send the answers you need when the timing is perfect. Again, thanks for sharing your struggles with us. Your transparency helps me face my own “little” issues.
No issue is little. This is why I try to share openly. If we let a “tiny” wounding or discouraging thing go by, it has the potential to grow into a faith-crushing ordeal. That is one lesson this is reaching me. Because I tend to be self-reliant, I try to deal with the “little” things myself. I tend not to take them to Jesus. I don’t ask for His help. As a result, they grow and inflict more damage. I’ve often ended up either in a mess or making a mess. The blessings of this illness are how revelatory it is and how Jesus is teaching me to bring everything to Him. It’s amazing how quickly He responds when I just ask! Your comments always bless me, Sharon. Praying for you now in whatever you may be facing today.
You know that I have been praying, early and often, for you and for your doctors. You have expressed your pain so well that we can better understand the extent of your misery! It grieves my heart, and I must learn to trust you to God over and over again. I am thankful that God is perfecting and refining you, but I struggle to accept this autoimmune disease over and over again. I want Him to take this cup from you, but I also have to release you to God to do as He wills. I love you so very much!
I felt this way about my kids when they were sick or struggling, so it makes sense you feel this way, too. I love you, Momma! Thank you for being so supportive!
My grandmother was one of the first ever to be diagnosed with Lupus back in the early 70s. I am hoping and praying that the medicine gives you relief if that is what it is.
Wow! I pioneer! I hope it works, too, Bonnie! Thank you for commenting. That’s a nice bit of history to know about your family. 🙂
This sounds awful, especially the uncertainty of not having a diagnosis and a treatment plan and pain relief. I am so sorry to hear this. I read this article the other day and thought of you because it seemed to offer insights into the relationship between childhood trauma and auto immune diseases. Perhaps you’ve seen it already? http://www.huffingtonpost.com/donna-jackson-nakazawa/childhood-trauma-leads-to_b_11154082.html
I saw that, too, and read it. Trauma has been the norm for most of my life, so it’s not a surprise that the autoimmune gene was triggered. Because I’m a highly sensitive person, an INFJ, and have been deeply reflective since I was a child, I’m also sure that some of life’s knocks have been absorbed with a higher degree of pain than would have occurred had I been of more cheerful and laid back temperament. This may be the norm for writers and for most deep thinkers. But there it is. All outside our control until we’re old enough to think more positively on even the worst.