Sweet reader, since writing this blog, I have dealt with chronic joint pain for over eight years. These days the pain is significantly less than when this was written. I am able to push through the aches and do things like strenuous yard work and hot power yoga. However each morning, when I hurt like the dickens, it’s a stark reminder that I still have chronic pain and always will. But maybe this is God’s gentle nudge to remember where my truest strength comes from, so each morning I choose hope. Psalm 121:1-2
It’s a hard topic to write about–too few details and the writer seems vague and stoic, too many and the writer seems self-consumed and whiny. I pray I’m able to write my story and encourage others without being either.
This is a tough topic because in light of so much death and tragedy in the world, it feels wrong to even speak of something non-terminal. I, thankfully, have not experienced a terminal illness or sudden death of an immediate family member. The all-consuming pain and grief of such a loss is something I can’t relate to, and would never try. I have, however, come to understand the frustration and exhaustion of a chronic illness and would like to open the hearts of others to what it means to no longer be “normal.”
So this is my story–how I went from a carefree, active mom to a woman forced to choose activities according to the day’s energy and pain level. Enduring a chronic illness has changed my life and personal perception of others who suffer. I no longer see them as people filled with excuses, rather they are filled with a desire to be “normal” while living in an abnormal body. I’ve come to understand it’s not pity they want, but understanding. I’ve joined their ranks and in doing so have been properly humbled. But it is in this humility and weakness that God’s power is made perfect. And I’m learning to be OK with that.
The Lord said, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.
2 Corinthians 12: 7-10
Two years ago I woke to feed a crying 4 month old, and felt severe pain in my hips and left heel. Plantar fasciitis and sciatica, both of which I’d had before, are common conditions during and after pregnancy. I assumed that’s what these aches were and just chalked it to being postpartum. The next day I began the familiar self-treatment routine: ice, Advil, lots of stretching, and a super-sexy night splint for my foot. In the past these efforts were effective, but after eight weeks without relief it was clear I was going to have to see a doctor. Dang it.
At the time I had a short list of doctors I saw regularly–an OB, a dentist, and an optometrist. That’s it. And honestly I only saw them when it was absolutely necessary, like when “1-800 contacts” would reject my expired prescription or I needed a qualified person to deliver a baby. I have a high pain tolerance and a masters in nursing; I just don’t run to doctors for every ache, who has time for that?
But this was different. This was really affecting my daily life and quite frankly I was getting concerned. I started with a podiatrist, and after 3 months of a walking boot, mutliple X-rays, and physical therapy, he diagnosed me ‘a hard nut to crack.’ (Those were his exact words.) So he went big and ordered an MRI which showed bone marrow edema. Upon reviewing the images with me he said, “Wow, I’m so sorry I couldn’t help you. Bone marrow edema is really painful. Hopefully in time it will subside.”
I was simultaneously seeing a chiropractor for my hip pain, but his treatments were also coming up short. I remember at the height of the hip pain telling my husband I didn’t think I could manage the stairs at our large church and we came up with a drop-off plan that included no stairs for me. We are talking severe hip pain. Limping.
When it was obvious to me that something chronic had begun in my body, I began researching medical literature on my own. Being a nurse, I became my own case study, mapped a detailed history of my health, and examined each red-flag along the way. I read about any condition that fit my profile, desperate to find out what was wrong. I would joke with my husband saying, “If this wasn’t me having to experience it, this medical research would actually be interesting.”
My research findings, along with my wonderful chiropractor’s urging, led me to a GI doctor to rule out inflammatory bowel disease, which has been linked to joint pain. The joy of this was I got to experience firsthand what I’d been prepping and sending patients off to experience for years. (PS, fellow nurses, that gallon of lemon salt water does not taste any better over ice, and I repent for every time I told a patient it did.) My GI visit was uneventful and nothing showed up abnormal except IBS. Half a year had passed, and I was getting quite anxious to find some answers! Instead, back to the drawing board.
I continued with chiropractic treatment, and he ordered more tests for unlikely, but possible, culprits for such severe hip pain, like osteoporosis or avascular necrosis (dying bone.) Nothing. It was when several small joints in my fingers began throbbing he decided it was time for me to see a rheumatologist. A rheumatologist? That’s a specialist for people with real diseases! I was a perfectly healthy 35 year old, thank you very much. (Spoiler alert, I went.)
The rheumatologist was all business. She tapped on her laptop as I recalled my full medical history for her, then ordered a gamut of blood tests which included Lyme Disease (common to the region we lived in at the time), Lupus and Rheumatoid Arthritis. When everything came back normal I was relieved, but also frustrated–I needed an answer. She prescribed an oral anti-inflammatory commonly used for arthritis (Mobic), which I initially protested taking. With her gentle poker face and beautiful Indian accent she said, “Let’s just see what it does for you, okay?”
I returned for my follow-up a month later a new woman. “WOW! I feel so much better! I can’t believe that anti-inflammatory worked!” That’s when she broke it to me, “I believe you have Psoriatic Arthritis, that is why it worked. Your history supports this diagnosis, and we need to start you on something to prevent joint deterioration as soon as possible.” (Did I mention she has a killer poker face?) My thoughts went something like, “WHOAH, lady. I do not have a disease. I’ll take your little medicine, but I DO NOT have a disease.”
I went home and read everything I could about Psoriatic Arthritis. Still in denial, I made an appointment with a dermatologist so together we could prove the Rheumatologist was crazy–this was really my plan, y’all. Contrarily, he confirmed that I did indeed have very mild psoriasis and the joint pain I’d been having was indeed Psoriatic Arthritis. He recommended I go along with the treatment. I went home and cried. Not because I was wrong, but because I had a disease. And I was too young and tough to have a disease.
Psoriatic Arthritis (PsA) is an auto-immune arthritis usually found in patients who have psoriasis, a skin rash. A similar auto-immune arthritis more people have heard of is Rhuematoid Arthritis (RA.) In simplest terms, an auto-immune disorder is when your body’s immune system attacks itself causing inflammation and destruction to the body. Auto-immune diseases are more common in women, particularly those of child-bearing age. In the case of PsA, joints and tendons are attacked, and without intervention, devastating joint deterioration can occur over time. Lucky for me, my rheumatologist was not-so-crazy after all, caught this early, and prescribed medications to slow the progress of the disease. The moderate pain still lingers, however, and it’s this daily reminder of my disease that has power to steal my hope.
This journey has been one of the most challenging experiences of my life. Trying to juggle my family and manage this has brought me to my knees at times. As I said, I’d never compare it to more harsh disease treatments and outcomes, but the reality is my life has changed and I–along with those around me–are having to adjust. I’ve enjoyed a life of physical agility and strength as long as I can remember. This condition has taken away some of my independence; I now have limitations where once I had few. Now, people I love are affected, because quite frankly there are times I don’t have the physical strength or emotional energy to “deal” because the pain is so intense.
But even with all that, this new way of life has afforded me something I don’t think I’d have otherwise–a richer realization of my utter reliance on God. Unfortunately, when things are going good, we humans tend to put our hope in those things. We say our ultimate hope is in God, we even believe ourselves. But when you get down to the nitty-gritty, our hope is in our independent ability to control our destiny. When the Lord allows an affliction in your life, you realize just how little control you ever really had.
Enduring this has been a lesson in hope. Hope is much more powerful than I ever realized. With every attempt at healing, I gained and lost hope that the “normal” me will ever return. For months I thought I’d wake up one morning and be able to say, “Well that sure was awful, glad it’s over.” That hasn’t happened and never will; this is a chronic condition.
Hope for my healing comes and goes. But I have never lost an ounce of hope that my God hasn’t left me or removed His hand from me just because I’m enduring hardship. I’ve cried to Him, questioned Him and flat-out begged him to take this away. He hasn’t taken it away, but no less potent is the HOPE I have that this pain is only momentary, but His love for me is eternal. I can rest knowing His love for me is the greatest need of my soul, and that I have that and nothing can take it away–this is my Hope.
I pray that in some way this post blesses you. I’ll end with this wonderful quote from C.S. Lewis. For the someone in your life who suffers–physically or mentally–I pray you’ll find grace to show them sympathy and understanding. And I pray they’ll reach for and cling to the love of God, the most potent healer of all.
“When pain is to be born, a little courage helps more than much knowledge,
a little human sympathy more than much courage,
and the least tincture of the love of God more than all.”
― C.S. Lewis, The Problem of Pain
16 responses to “What A Pain”
Beautifully written, Macie! I could feel your pain and your hope. I pray that you will eventually find greater relief.
Thanks. From one who has truly seen affliction, I appreciate your words of encouragement. Love you.
I always, always love your posts but this was special to read. You have such strength. Keep up the fight. We love ya!
Wow in staring at this screen speeches. I’m suffering just as you have described. I chalked my sudden onset of planters faciaitis and horrible hip pain to an unexplained weight gain since my hystorectomy two years ago. I am absolutely miserable. Walking is chSllenging. Heck, everything is challenging. You’ve give me MUCH to think about. You did a beautiful job in this post. Love and hugs!!!
Oh, my Gretch, how I think often of you. I love love love you!
My friend, I only wish and know in my heart that is just a passing phase and you will recover to the fullest. Will pray God to give you the strength to pass this hurdle soon in you beautiful years ahead.
I have pulmonary hypertension, fibromyalgia, neuropathy, and psoriasis, which I sometimes forget. Thank you for this!! It is all so true!! You tell this so very well!! This is my favorite quote of all of this: ” When the Lord allows an affliction in your life, you realize just how little control you ever really had.”
Precious friend. I’m so thankful it reached you in a unique way. I am striving to be true to what God leads me to write. I really didn’t know how many this post would touch, and I’m really overcome with emotion this morning reading the replies and comments. Since we are MORE THAN CONQUERORS in Him, we can still praise and serve even in our failing bodies. Romans 8:36 “Just as it is written, ‘FOR YOUR SAKE WE ARE BEING PUT TO DEATH ALL DAY LONG; WE WERE CONSIDERED AS SHEEP TO BE SLAUGHTERED.’ But in all these things we overwhelmingly conquer through Him who loved us.”
This is the best post yet!! Maybe because I can relate to everything you said, and that Mrs. Ruby Nan said, or maybe because God gave you the perfect words to describe a life with a “silent” disease. EVERYONE is fighting a hard battle, and for those with silent pain, it is comforting to know that there are others that understand our pain and that we are not alone. I pray for relief from the misery and depression you will feel. Your strength and hope are obvious! Love & miss you my sister! ❤
Love you sister. Love you so dearly. And Lord KNOWS you were on my heart writing these words!
You continue to surprise me!!
Feel very lucky to have moved into the neigborhood and to have met you!!
Hi Macie,Before I actually wrote much, I wanted to make sure you received this! Does this just go to you or is it posted
HI! It goes to me and I have to “Approve” it for posting. But if you just want to send a personal email send to firstname.lastname@example.org =)
Wow, Macie. I am so sorry you’ve been through so much and are continuing to go through it. Hang in there, sweet mama! You have such an awesome perspective that is a shining example of His light. I’ll be lifting you up to Jesus.
thank you for sharing this, mace, and for your transparency. i just shared this with a first cousin who is a a couple of years younger than you and has been struggling with – what we now know is – lupus for years. Now she is dealing with sarcoidosis. I pray it speaks to her. I pray for you. I love you.
oh, and…Merry Christmas to you and the family!!