Thursday, November 21, 2013

Discovery and Recovery

Nov. 21, 2013

April, 2010 was the start of a journey for our family.  Kelsey got Lyme disease but we didn’t know it.  She had a bout of what we thought was just a virus and she fainted.  We didn’t think anything of it really.  The next month she passed out but it was more like a seizure, not like her fainting the month before.  Something was definitely not right with this one.
So we got on the long road of doctor appointments, unanswered questions, multiple diagnoses, complete frustration, helplessness, and disillusionment with the medical system.  At one point, Kelsey was diagnosed with neuropathy, POTS, basilar migraines, migraines with aura, chronic daily headaches, chronic pain syndrome, possible MS, and “all in her head.”  In Jan. 2012, the severe pain began and she massively deconditioned basically overnight.  On good days, she rated her pain in her arms and legs at 6/10 and there were a whole lot of days at 7-8/10 and even 10+ days at the hospital.  This went on non-stop, literally, until the next December (2012).
What helped Kelsey came from an unexpected place.  Out of 15 or so doctors, a couple of them being world-renowned doctors in their specialties, not a single doctor would take the lead in her case.  Only one doctor would prescribe a narcotic pain medication (and that wasn’t the Chronic Pain doctor) and he only gave her a tiny bit.  One doctor continually called her “bizarre and complex.”  Only one doctor stepped a foot or so out of her specialty and tried to help Kelsey and that simple act made her a hero to us.  But, even that was a short lived advocacy.  Overall, the doctors only want to diagnose within their specialty which meant that they never really looked at over all causes of Kelsey’s symptoms.  They wanted us to believe that she contracted all of those diagnoses separately at the same time.  How can people who are so smart be so ridiculous?  Tim kept saying through the whole thing that there has to be one cause.  It is the difference, I believe, in the mindset of a trouble-shooter vs. a “diagnoser.”
Then my brother-in-law, Mark (aka New Mark; aka Assimilated Mark), said, “Look into Lyme disease.”  I knew we had already tested twice for Lyme with the results being negative.  Plus, honestly, by that time I was sick of being told to chase what seemed to be wild geese.  So, I did nothing.  A couple of weeks passed and Angela asked again if I looked into and I had to say no and she encouraged me to do so.  A week later, still with me doing nothing, a friend at work, Darla, asked me about Kelsey and she made a connection to her friend who had Lyme disease.  I told her Kelsey had been tested and was negative and she said that didn’t matter and said to go to a Chinese medicine lady in Greenville.  So, Tim took Kelsey.  The lady found Lyme and made recommendation for Dr. Wilson.  Tim, to this day, is still skeptical about this lady but the end result is still the same.  During this time, I also met with someone who has Lyme and she also suggested Dr. Wilson for Kelsey.  Do you see the paths lining up?
We went to Dr. Wilson and he confirmed Lyme through specialized testing and we started treatment.  It took three months before we saw any significant improvement.  Just at that time is when Tim and Kelsey went to the Mayo Clinic, who disagrees with chronic Lyme disease in general.  Their conclusion after a week of testing and consults was, “We are at the end of discovery and need to move on to recovery.”  In other words, “We don’t know what the hell the she has so let’s just learn to deal with it.”  Um, no.  We decided to stay on the path with Dr. Wilson.
Ten months after the start of treatment, it finally ended.  And now, three months after that, Kelsey is so good it is practically unbelievable.  She has moved from “bizarre and complex” to “miraculous” according to Dr. Linder.  I couldn’t agree more.  Yesterday, she ran 3.2 miles, she has decided to start eating healthier, and is even writing a blog (www.ablessedrunner.blogspot.com).  She homeschools and works 25-30 hours a week being a nanny for two boys (2 years old, and 2 months old).
Certainly I have seen God working in the last 3 ½ years.  What I see in this story is God leading the way to diagnosis.  I sure wish He would have done it a lot sooner.  But, like the old saying goes, “I have my plan, but God has His.”  I got a glimpse of that perfect timing last week when I read Kelsey’s first blog.  She wrote, “I know all too well what it is like to not have the ability to run but to be honest I wouldn’t take back what happened for anything.  I asked her why and she explained that she loves her life now and if it hadn’t been for the illness, her life would be incredibly different.  God’s timing, not mine.  God’s plan, not mine.  Which brings me back to my mantra/prayer for the last 3 ½ years: “Into your hands, O Lord.”
https://www.youtube.com/watch?v=FmUGekcTuLM