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Life has no guarantees, except for the guarantee of salvation if you’ve placed your faith in Jesus Christ. I understood this shortly after I was saved, but the truth behind it didn’t really hit me until last September. That’s when my husband, my knight in shining armor, was diagnosed with a chronic illness. Thankfully, he has the same guarantee of salvation. Over the next few days, I will be sharing the story of our long and winding road as it has unfolded so far.
Feeling “Out of Sorts”
During the summer of 2014, my husband mentioned that he didn’t feel quite right, but he couldn’t put his finger on it. By all appearances he was healthy. His physical the previous December was uneventful. We were in the routine of taking 30-minute walks (approximately 1.5 miles around our neighborhood) 2-3 times a week, plus we grocery shopped (3 different stores) on Saturday mornings.
In August, during one of our walks, he seemed unusually tired. Normally I struggle to keep up with him, but this day I had to slow down to let him catch up. We wrote it off to the excessively humid weather we were having that summer.
And then one Saturday, our lives changed.
My husband fell down.
The Long and Winding Road to a Diagnosis
The following week he went to see the doctor. She checked him over, ordered a bunch of blood tests, and scheduled a follow-up appointment for two weeks later. During that time, he started deteriorating — fast.
It was obvious something was wrong: he could no longer lift his arms higher than his chest and needed help stepping into and out of the shower.
I called the doctor and she agreed to see him the day before his scheduled appointment. More blood tests (they were all coming back normal) and an MRI was ordered (brain only). A neurologist was contacted.
That’s when God took over, and miracles started happening.
Watching God Work
The first MRI was the same week as his second doctor appointment. My husband had stopped driving and was totally willing to let me drive him to his appointments (if you know my husband, you know this is a big deal).
The following week the neurologist called. They had a cancellation on Wednesday — could we come in? Yes!
After checking him over, the neurologist ordered more blood tests and another MRI (both cervical and thoracic).
Thanks to another cancellation, the MRI was done that same day.
We went back to the neurologist the following Monday for an EMG (electromyography, to test my husband’s muscles). A diagnosis was made.
Five weeks after the first fall (and there were a few falls) he was diagnosed with Guillain-Barré Syndrome. Two days later our insurance approved the treatments (another miracle) and the infusion center called us to get started that day.
By the end of the 5th day, my husband was almost back to normal. A lumbar puncture the following Monday came back normal.
We thought we were on the road to recovery, but our relief was short-lived. Four weeks later he started growing weak once again.
The diagnosis was changed to CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), which is a rare form of Guillain-Barré Syndrome, and treatments were scheduled on a monthly basis.
Over the next 8 months, my husband and I both spent hours reading up on CIDP.
One day we met another gentleman, around Jef’s age, who also has CIDP. Although some of their symptoms are different, Jef was thrilled to talk with someone who at least has an inkling of what he is going through.
Being an Advocate
Since CIDP doesn’t affect my husband cognitively, and since he works from his office in our home, he’s not had to miss any work other than for a few appointments.
I’ve learned to be an advocate. I field phone calls from doctors and schedule appointments for him. When he is too weak to drive, I am his chauffeur. When he needs help getting up from a chair (or off the floor) I am there for him.
But, when I need to talk about my fears, I have a group of ladies who are more than willing to listen and pray for me.
God has been very good to us! Considering how fast my husband deteriorated, and how long it usually takes to get in to see a neurologist, we know that God orchestrated each of the appointments and saved his life.
Over the next few days (or weeks, depending on how often I get a chance to write) I’ll be sharing a little more about some of the specifics regarding this illness.
This may not be the happily-ever-after I dreamed about. But, I am working hard to create a new one — one where I control the spin.