Background Story, Feb. ‘09
One day in September ‘08, I was walking into Target with my 18 yr old son Ethan and commented that my left calf had been bothering me for a couple days. Now you need to know that Ethan was no stranger to unexplained pain – he himself had three weeks of pain all over his body the previous winter when it was finally discovered that he had Acute Lymphoblastic Leukemia. I was merely informing him of my problem for two reasons: one- I couldn’t walk very fast so he’d need to take it easy with me, and two- I wanted him to know I sympathized in a very small way with some of his ongoing battle with his disease. Apart from that, I dismissed the symptom as simple fluid buildup that I’ve often had. But within a week or two, my whole leg started going haywire including giving out on me one night, and eventually I started feeling more strange symptoms that indicated a possible neurological disease or disorder. I made several doctor’s trips and finally ended up in the ER one evening when my opposite leg was overactive with electrical pulses shooting through it, making my toes feel like they were being repeatedly shocked.
I had a brain MRI to check for MS, which came back negative, and then had some blood tests that the neurologist on call ordered. The ER doctor noted that I was experiencing hypo reflexia, sent me home with a sedative, and asked me to follow up with the neurologist. My symptoms settled down some but my left leg continued to experience extreme stiffness, burning, twitching, weakness, and a little numbness. Over the course of the next couple months, I had more tests on my spine and an EMG of my left leg and arm, along with adding medications to regulate my nervous system and ease my muscles. All tests continued to be negative. I switched to the neurologist that was in the same group with my primary physician and she ordered more blood work, a magnesium supplement, another MRI, and physical therapy to address any back or pelvic issues that might be affecting my nerves. The blood work showed I had extremely low iron which most likely indicated the increased twitching through my entire body, but didn’t really explain my other symptoms.
I have continued to supplement with iron and have about another month until that’s expected to reach the targeted level. The physical therapist gave me a resting exercise which only aggravated my leg more, so the neurologist wanted me to stop. I then asked my primary doctor for a referral to an orthopedic specialist to check my pelvis, and he in turn sent me back to physical therapy – this time with someone who specializes in lumbopelvic and women’s health issues. Through several tests she confirmed that I have SI joint dysfunction on the left side – the main joint that operates inside the pelvis and connects to the lower back, hip, and groin area.
The most obvious source of this kind of problem would be an injury, but in my case there are other equally plausible reasons. They include extended sitting in waiting rooms during my son’s treatment, extended driving to both Memphis and Peoria, and hormonal changes that trigger female pelvic symptoms. The therapy I’m now receiving includes wearing a belt around my pelvis, wearing a heel lift in my right shoe to try to correct asymmetry, using steroid patches and creams, using a special seat cushion, and doing a series of exercises to help put my joint back into position when it goes out along with strengthening the ligaments and muscles around it so I’ll eventually be more stable.
First entry: Feb. 18, 2009
So it’s been since September that my body has started failing and interfering with pretty much every aspect of my daily life. Today is Feb. 18 and I just reviewed my history for the past month – I’ve been to Carle Clinic eight times for the following – blood work, two separate specialist visits, and four PT visits. In this same month, I’ve also taken Ethan on a four day trip to Memphis, along with five partial day trips to Peoria. In one month, I’ve been in doctor’s offices a total of seventeen days, eight for myself and nine for Ethan. Katrina has been on her own a lot with school, Samantha is getting less attention than I’d like to give, housework is piling up even though I have an outside cleaning service twice a month, and running life in general is chaotic with the kids’ transportation and activities, meals, errands, car repairs, a long overdue piano tuning and fireplace repair, a broken microwave, snow etc. Many of these things would be challenging in their own right without the extra health-related demands.
This may sound like a complaint, actually it’s not. I have much to be thankful for, especially God’s grace in carrying me through each day and seeing how flexible I can be even when it goes against my general nature. What I want to do with this journaling exercise is focus on several things:
-God’s goodness to us all the time: Stephen Curtis Chapman’s line is very fitting: “You are being loved, right now at this very moment, you are being loved – there’s a song being sung over you by the one who breathed life into you…”
-The incredible way God has designed our bodies to function and how it testifies to His perfection in all things
-The importance of details and following God’s special guidance through a long-term, no easy-fix situation
-The importance of already existing community for support as well as God’s amazing placement of new people in your life who help in the healing process
-The wonder of everyday life and the sheer JOY of family
-The way pain disrupts your identity and brings about a new identity that is clearly God’s intention for you, not of your own making
- The power play of emotions – they absolutely CANNOT dictate your perception of truth, and yet they CAN be valuable in coming to terms with who you are and discovering the truth you so desperately need; you can move from unhealthy lie-based emotions to equally truth-based healthy emotions rather than settling for numbness and/or extreme debilitating sorrow.
Second Entry: Feb. 22
This morning I asked Dave to do a “leg pull” – while I’m lying on my stomach he pulls my bad leg, then I turn over and he pulls my good leg. The therapist says this is my last resort to do when I can’t get things into position on my own. This morning I didn’t even try a self correction because I knew it wouldn’t work. My leg was feeling around a 7 or 8 for pain – I got woken up by Samantha at 5:30 AM because of a fever she’s had for three days now, it’s been in the 104.5 range since yesterday afternoon. So having to get out of bed and attend to her set me off on the wrong “leg” even with lots of help from Dave.
When I rate my pain, what I’m referring to is more the severity of my discomfort. The worst actual pain I’ve ever experienced was in childbirth (no surprise there). I’ve heard kidney stones are pretty painful although I’ve never had one. Dave experienced incredible pain when he woke up from his first abdominal surgery without the pain block he was supposed to get. Ethan had more of a suffocating kind of pain when his tumor was pressing on his esophagus. My pain is different – it’s mainly stiffness, with varying degrees of burning, tingling, and twitching.
The reason it’s hard to attend to Samantha (and do so many household tasks) is because it requires me to move in ways that aggravate my condition. These include twisting, bending, and reaching. In addition to these movements, I’m supposed to avoid certain activities as much as possible – going up and down stairs, pushing a grocery cart, lifting, vacuuming, basically anything that requires a little extra effort.
Here’s what I’m learning through this – to see people in a different way and have compassion on them. So many people are physically challenged; I notice them everywhere I go. So many women have a limp, use a walker or struggle in some way, not to mention all the men and children out there that have problems. Along with compassion, I have a greater appreciation for the way many people learn to function even though their bodies are failing in some way. The first person I think of is Dave, who has lived with Crohn’s for around fifteen years. Then of course there’s Ethan, who’s continued to plow through chemo treatments and makes the most of the times he’s feeling well. I also think of my sister-in-law Chris, who’s had two knee replacements and some problems with her foot and ankle recently. All three of these individuals have continued to live very productive and other-centered lives even though they have major health issues. I also have a greater appreciation for those who care for people that cannot continue to function without help. My grandmother was 90 pounds and took care of my grandfather who was close to 200 after he had a stroke, leaving him partially paralyzed and speech-impaired. Many people are living this reality day in and day out, either struggling with their own frailty or caring for someone who is. It’s amazing to see the God-given strength that surfaces when people are faced with extreme hardship.