New Information
My life has been so full and blessed. I had a happy childhood, met my husband of 30 years in college and we welcomed the births of our four beautiful children together. We have a wealth of close friends and family and have shared many wonderful times. Our family photos chronicle a life of fun and fullness. We’ve seen the Lord’s hand in our lives and ministry. We’ve had some pain and a few bumps in the landscape (and we’ve helped many others through personal pain and heartache), but there has been relatively few clouds to darken the horizon of our lives personally. I am blessed! Life is beautiful and sweet.
So in the context of this peaceful backdrop I began experiencing some strange neurological symptoms in June and more in July while on a family mission trip to Jamaica... just some slight slurring of my speech and difficulty manipulating food in my mouth while chewing. Disturbing, but easy to “brush off” as nothing when I had good energy and felt great.
On returning to the Atlanta airport, I realized that my lower jaw and lip felt numb. But, after a CT scan and MRI of my brain and a lot of blood work, nothing showed up. My PCP referred me to a neurologist in Little Rock and after the first visit on August 28, she said she was “stumped” by my symptoms, but would order some further testing. “No big deal; perhaps this was something the dentist or the chiropractor could fix”, I thought.
I confidently went to the nerve conduction study and EMG on September 13 truly believing that this was all “nothing”, my symptoms would just mysteriously go away and that we’d never know what caused them. Yes, I was very confident, until the doctor doing the test said my tongue muscle was atrophied and my tongue was “fasiculating” (twitching). Could something be seriously wrong?!
Then came the “new information”...
She said the nerve study was not normal, my symptoms were very concerning and she “suspected ALS” (that’s Amyotrophic Lateral Sclerosis or Lou Gehrig’s disease!). My foggy recollections about ALS from nursing school helped me know that this potential diagnosis was NOT good!
I came home from that appointment and spent 3 hours in my hammock by the lake wrestling with the Lord...crying, praying, journaling and trying to surrender my will to His. Please let this cup pass from me, I begged.
I asked for an anointing service for the next day, on Sabbath afternoon. What a blessed, poignant time of faith and prayer with friends as we shared the very real possibility of a life shortening illness, but trusted together that God will give healing, either instantly, over time, or for sure at the second coming of Jesus...as He sees best.
Then came a battery of more tests...more MRI’s, barium swallow study, mammogram, uterine biopsy, lumbar puncture and a ton more blood work. All came back “within normal limits” or “negative”. I knew this was not necessarily “good news” as ALS is partly diagnosed by ruling out everything else.
I wasn’t as confident going into the follow up with my neurologist, October 2, as I had been two weeks before. Surrounded by my supportive husband and siblings we awaited her diagnosis. She was compassionate in sharing all the results and then said she was “95% sure” I have ALS. We shared some tears with her...and then left her office.
What does one do with that sort of “new information”? I didn’t sign up for this! How can one doctor’s visit suddenly change life as you know it? Researching on line in my times of wakefulness in the middle of the night did little to help my insomnia and restlessness.
So many questions....
How do I “do life” from here with a faith based optimism? Where do we turn for help? How can God direct us with this mind numbing diagnosis and bring something beautiful in my life and experience with Him? He makes no mistakes. How can I learn to trust Him no matter what my future holds?
Hence begins my journey...and my blog about this journey.
We are in the Journey with you. It is a roller coaster but we are on it together. May every day find His hand with us and working in your life. Thanks for blogging your experience. We love you so much.
ReplyDeleteAppreciate all those who are joining me in this journey!! Love and prayers.
DeleteDoesn't seem to publish my info. This is Rob
ReplyDeleteGot it :)
DeleteOh our dear Shelly
ReplyDeleteYour faith and honesty and love for the Lord through this all is a gift God is giving you . He is genuinely pouring out HIS spirit upon you. One of His greatest gifts is HOS comfort through this journey. You are continually in my thoughts and prayers. I love you sister.
Julie Griswold
You are such an amazing support and prayer warrior for me. Thanks Julie!
DeleteTears with you. How is this possible? Please know we are upholding you constantly in our prayers and pray for a full revelation of Jesus through all you face and experience. With deep love and utmost respect, Laurel
ReplyDeleteP.S. many hugs.
Many days I still don"t see it as possible, even 11/2 years later, and wish I could wake up from this bad dream! But, (on the flip side) with Him all things are possible!
DeleteI pray for you and your uplifting spirit, this may be troubling times, but God has a plan for you and it will all work out. It's a daily test of faith and I know you have the spiritual strength to go on and share your journey with others. The little time I shared with you and got to know a little of your struggle and you as a person, let's me know that you're a God loving person. Continue to trust in him each day. I'm always praying for you, Ashley
ReplyDeleteAshley, thank you! I was blessed by your christian example in our brief meeting as well. God bless you!
DeleteI have been so blessed and privileged to call you friend for so many years, and to see how God has continued to lead and guide you in your life. I know God has a plan for you and is with you each step you are taking. Lean in to him, he's got you, even now. I'll be praying for you,
ReplyDeleteLove Maria
Thank you dear Maria! He does have a plan and something beautiful ahead for me I'm sure!
DeleteYour Jamaican family is praying for you Sis. Powell.... We love you!!
ReplyDeleteSending love and hugs to our Jamaican family!
DeleteThank you for sharing, dear Shelly! I love the name you’ve chosen for your blog! I am honored to join you in this journey through my daily intercession. I am confident that, whatever the outcome, our precious Lord will be glorified in your life, and many will be edified. But I can’t help being hopeful, optimistic and persistent also in my importunate prayers.
ReplyDeleteKeep looking up, sister, and mounting with wings!
With love and respect,
Maria Nebblett
Thank you, my dear sister! Thankful He can carry me on His wings (mine are weak sometimes!) Love you!
DeleteDear Shelly, thank you for sharing your faith journey with us. You have been such a blessing to so many, and continue to be so in sharing your struggles and strong faith in our Savior. Know that I am praying as well as many others from our church.
ReplyDeleteLove and hugs,
Cindy Hollie
Luke 1:37 For with God nothing will be impossible
Thank you! So thankful to have so many friends and church family praying!!
DeleteAnother example of the injustice this world is filled with, thanks to the arch-enemy of us all. Be thankful for all the good you have experienced. I have not been so blessed as you have. Believe with all of your heart the promise of heaven, for it is real. Then the trials of this life seem to fade into insignificance. As Ellen White says about when we get there, we will someday say that heaven was cheap enough!
ReplyDeleteI have experienced much good in life, for which I am so thankful! I know that this world is not our home and some things in life are even harder to deal with than a potential terminal illness. I have much to be thankful for!! We all have to keep our eyes heavenward!
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