Personal Medical Update

Second Day of Infusion Therapy

Second Day of Infusion Therapy

THAT WAS THEN

In 1999, after visiting three hospital ERs for nausea, vomiting, dizziness, and tinging in my face, I was diagnosed with a nickel-sized demylenating lesion near and actually in my brain stem. (Nerves are covered with a protective myelin coating, and when that coating comes off, inflammation is produced in the surrounding tissue, causing a “lesion” or spot, which is NOT a tumor.)

My condition was considered inoperable. A number of doctors at various hospitals and finally at Harper Hospital and Detroit Medical Center finally determined that it was a demylenating lesion and treated it with a burst and taper of steroids that shrunk it immensely, giving me back my life (for a time I was unable to walk or care for myself in any way, and my vision was double. I could do nothing but lie still in an effort to avoid unrelenting vomiting.)

The steroid treatment was dangerous but highly successful. For fifteen years, I’ve lived with MS-like symptoms but have managed life quite well, traveling, speaking, consulting, and writing.

THIS IS NOW

Many of you already know that just before Christmas I went to my family doctor because I was experiencing pain and tinging on the left side of my face. It felt to me as if a virus was traveling up my trigeminal nerve in my face. The pain was quite annoying. Actually, it was severe.

My doctor gave me an anti-viral medication but cautioned me that I would probably need to visit the ER for further testing. Within 48 hours, I acted on that advice. I felt truly unwell, and I’d been experiencing extreme fatigue for months, as well as other symptoms that were reminiscent of my episode in 1999 that had landed me in the hospital.

Doctors did, in fact, find another nickel-sized lesion in the identical location in my brain. They diagnosed it as a glioma–a very insidious diagnosis, and scheduled me for a craniotomy and resection in order to remove as much of the lesion as possible for biopsy.

They were able to remove 20% of it–the other 80% was too deeply in the pons of my brain and too dangerous to get to.

Nearly a month later, I’m still without a solid diagnosis. Docs have determined the lesion is demyelinating and NOT a glioma, which is hugely positive. But my biopsy, which was sent to Mayo Clinic, was inclusive for a specific diagnosis–for instance, MS, which is a specific demylelinating disease.

So where does this leave me?

1. My neurologist has referred me to Mayo Clinic for a second opinion.

2. In the meantime, I am undergoing steroid infusion therapy for five days, in an effort to reduct the inflammation and painful trigeminal neuralgia being caused in my face.

3. I am undergoing further tests–a Visually Evoked Potential, a thoracic MRI, and possibly a spinal tap. I am also being referred to a hematologist because of elevated protein in my blood.

4. Waiting on God, as we make preparations for a trip to Mayo Clinic in the dead of winter.

5. We are also juggling my medical trips with Dan’s and Wanda’s which is quite a challenge, given our combined medical challenges.

6. Leaning into the faithfulness of God and his unchanging goodness.

7. Learning new things about grace, pain, stillness, suffering, silence, change, and God’s love in the places we often fear most. He mercies are new every morning. This is not easy, but why would it be? I do not discount the challenge, but I embrace my only HOPE in this place.

What about you? In what ways have you found new mercy and grace in the hard places and suffering?

 

 

 

 

3 thoughts on “Personal Medical Update

  1. I am praying for you Shelly. I will share how I have found God’s grace in times of pain and suffering. When I feel that I cannot handle any more, I feel the arms of the Lord support me in either a small period of comfort or words from a friend or a minute that is pain free or a time of sharing a laugh. And being thankful for all He has blessed me with already and confident that I have a place in His kingdom to worship Him forever. There are two instances I think of…when I was really sick with bronchitis and could not stop coughing…I would cough and cough and cough but I prayed and asked God to take away the fear. And so each time I would count how many seconds I could breath without coughing and I would thank God for those seconds. I found Him there in the giving of thanks. Another time when I was in labor the pain was intense, of course, and they gave me a medicine in my IV that caused me to sleep in between contractions. I felt like I had rested at least an hour in between each contraction when in reality it was only about 3-4 minutes. The contraction would wake me up and I was fully aware of the pain at that time but then when the contraction passed, I was sleeping again and felt that incredible rest. I was thankful for the rest in between times. I know that is nothing like what you are going through and I am praying for total healing for you as well as lots of periods of good rest in the strong and capable arms of our Lord Jesus. You are a very special lady to me, although I have not met you in person. Your books have influenced so many lives here in NC, especially mine. I thank you for being faithful to the Lord in writing them.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s