Thursday, February 12, 2015

Moving to Australia?

These past few days have neither flown by or been fun. However, thanks to a story a friend told me, my experiences have been positive.  Like the people in her story, I have discovered that rather than praying the problem goes away, I simply praise God as the "bombs reign down" and reflect on gratitude.  It is with sincere humility that I reflect on my children and husband's shared love and their good health, my children's good health (yes, I realize I listed that twice), David's devotion, patience and seriously good wit during this trying time, my parent's stable health, Kristin's devotion and enduring hope, and my many friends and family (old and new) who reach out, pray hard, and love me in their unique way. Each of these are the essential elements of my constant awareness of being wrapped in His love.

Of course, there are many more people, relationships, events and outcomes for which I am grateful.  I could go on and most definitely will, in the days ahead, as I write more regularly about the challenging stuff I don't like to discuss, much less share.

It has been my experience that "people in masks cannot be trusted" (Princess Bride; Directed by Rob Reiner), so establishing all new doctors and rehashing the past two years' health crises on EACH occasion has been less than comfortable.  However, I am finding that I am trusting them. I don't understand it and really can't explain the transformation.  It is through this revisiting of the past that the doors to the Mayo Clinic have been opened and now, my neurologist refers to me as "Sunshine". What? He also says, "settle down now," a lot.  I keep telling him that I am settled down and that he hasn't met "NOT settled down".  Oy.  I'm settled down, sir. 

I trust and generally like my neurologist (I am envisioning Kathy Gregg passed out - right about... now!) 

Hold on...there is more.

My neurologist's name is Dr. Alireza Minagar.  He is a LSU Hospital doctor and attended medical school in Tehran, Iran. He is brilliant, empathic, and returns weekend crises emails and phone calls HIMSELF.   HE is most definitely: NOT "settled down".  He arranged for me to come to his clinic first thing this past Monday because I was beginning my 5th day of a hellish headache and could not open my right eye without a lot of effort.

Dr. Minagar thought I had a stroke and scheduled my hospital admission for the following morning for an MRI, stroke assessment and prevention protocol. Admittedly, he was concerned about my implanted spinal cord stimulator and the LSU radiology department's sophistication and ability to perform the task.  Still, he felt I needed to be in the hospital to ensure I didn't have another stroke. Panic pants.  Settle down now, Dr. M. He also arranged an urgent appointment with my neuro-ophthalmologist, Dr. Vekovius. Dr. V encourages me to use the "F" words freely in his office and has also, therefore, challenged me to like him.  Shit.

Sorry - off track. So off I went to Dr. V.  We got Chik-fil-A in route, despite Dr. M's histrionic pleas that we rush right over: red rover, red rover! Dr. V is like a bull in a china shop with my eyes. Thankfully though, he quickly recognized that my "eye drop" was not evidence of a stroke, but was indication of an injury or abrasion.  He gave me eye drops, called off Dr. M and my admission and told me to come back in a week.  He also stated that my "eye drop" was in such a state at this point, that even if the gang at the Mayo Clinic finds a treatment: my eye will require surgery to lift the lid open.  Wonderful.

He will have to get in line for surgery because the following morning, I went to see the pain management doctor (Dr. Brewer), who is tasked with monitoring my pain and the spinal cord stimulator device implanted in me about 18 months ago: that resulted in my admission to skilled nursing rehab. Both Dr. M and Dr. Brewer agree that I must have the device removed, as it is likely causing the neuropathy in my core and legs.

Before going into any detail about that, let me say that I absolutely despise going to pain management appointments.  There is a long story there,  but there is too much to tell, so I will sum up.  I deeply valued the PA who worked with me in Austin, because he accommodated my ridiculous schedule, never required me to do UA's to prove I wasn't abusing narcotics, believed me when I spoke, and worked HARD to help me avoid using narcotics entirely.  Arriving at this new office and having it feel like a cattle drive of nameless and faceless suffering people, was awful.  Imagine my surprise when Dr. Brewer spent almost an hour with me, looked at me, believed me and referred me to a Mayo Clinic Med School graduate/neuro-surgeon, because he knew he didn't have the skill set to operate on me!  At this point, it is getting seriously hard to be such a hater. Damn.

I'm focusing, Debbie.

I am waiting to hear from the neuro-surgeon regarding the timeline for surgery. I will definitely wait until I return from Mayo and squeeze in a quick trip to Austin.  All I know for sure is that I am getting the device removed and I am relieved. The surgeon who implanted the device (who I forgive but will not name), apparently did an avoidable "laminectomy" on two perfectly functioning disks (L2 and L3), because it made it "easier" to implant the new leads into my spine. This caused spinal cord injury and crazy pain around the core of my body and down both legs.

Dr. M called me just after my appointment with Dr. Brewer and said, "Hello Sunshine. I think we can avoid hospitalization today and just focus on getting to Mayo and removing the device when you come home."

Yes, sir. 

Coming home is good.

I'm not moving to Australia (Alexander and the Terrible, Horrible, No Good, Very Bad Day, by: Judith Viorst). I absolutely love who I am with and where I am. I am blessed beyond measure.  Some say that I deserve these abundant blessings, but in truth, it is when I consider how completely undeserving I am, that I am brought to my knees in humble gratitude.  My life has been spared because David listened to his call to come after me and because these doctor's are humble enough to acknowledge their need for help, arrange the help I need (Mayo Clinic), and seem to experience empathy and sympathy.  Consider how refreshing it is to find The Physician's Prayer hanging on their treatment room wall and finding that the same genuine need to serve Him exists in the men and women behind the masks.

And that is that...

The Physician's Prayer

Lord, Thou Great Physician,

I kneel before Thee.  Since every good and perfect gift must come from Thee: I pray: Give me skill to my hand, clear vision to my mind, kindness and sympathy to my heart.  Give me singleness of purpose, strength to lift at least a part of the burden of my suffering fellow men, and a true realization of the rare privilege that is mine.  Take from my heart all guile and worldliness, that with the simple faith of a child I may rely on Thee.  Amen.  ~ Author Unknown

Additional Resources:
Educational materials regarding the Medtronics spinal cord stimulator, model #97702, can be found at:

Saturday, February 7, 2015


S'coot is the name for my pet Coots, here on Lake Claiborne.  They are mesmerizing as their movements become more and more predictable over time. Their favorite fishing spot happens to be under The Watson Retreat's pier and boathouse.  They begin and end every day here, and if there's a storm or a lot of Eagles out prowling around, they'll come home to hide under the boathouse for their protection.  If you haven't figured it out already, they're called S'coots because everyone else will say, "There are Su's Coots," but if you say it slow, and with a Louisiana drawl, It is, "Lookee there.  There's S'coots. Bless their little hearts, I'm afraid one was just eaten by that big bird, beyond those trees there!"

I heard recently the S'coots were the most honored animal of the Fa'cow'ee people of Claiborne Parish. The legend of The Fa'cow'ees has linked S'coots in their hieroglyphic art work.  The young Fa'cow'ee boys and girls saw them and screamed, "Is it a bird? Is it a duck?" The wise old doctor (who could see into the future), said, "No, it's S'coots."  The wise doctor taught the young children to pay attention to the S'coots because they would always warn them about impending danger.  "As the S'coots move back under the boat house, the fierce black Fa'cow'ee German Shepherd will growl fiercely and chase the great big bird with a white head, far, far away."  This relieved the young children. The wise doctor went on to say, "the best time to fish with their spears, along the shoreline, is when the S'coots gather among the great white Pelicans in the middle of the lake."  The wise doctor warned them not to wander too far from camp, since their people had a terrible sense of direction (please read "Unfiltered" by Doug Folts in 2013, where the original Fa'cow'ee legend is well documented).

The hieroglyphic is difficult to interpret at this point, but it seems as though the wise doctor began to weep, wail and dance around the fire like a S'coot moves through water.  It's really quite a beautiful dance, indeed.  He appears to be singing out, "Where the fa'co'wee?" (Folts, 2013)

I feel so honored to be part of the long, colorful history of Claiborne Parish, and as such, I have joined the Board of Directors at the Ford Museum, in Homer. I am trying to decide what things to include in an exhibit there, since they will clearly have to make room for the Legend of the Fa'cow'ee people and the impact of the legendary S'coot on their survival.

Speaking of survival....there are 31 more days until I check in at the Mayo Clinic in Rochestor, Minnesota.  I have been fairly fragile since my hospitalization in early January. The rheumatologist was concerned about some symptoms that I had ignored for some time, so he got me an appointment with the cardiologist: lickity split.  The cardiologist was nice enough to not over-react and seemed impressed with my pharmaceutical knowledge-base. I described how my medication addresses the pressure around my brain and how it caused dehydration.  Therefore, most of the symptoms that alarmed the rheumatologist could be easily attributed to side-effects.  He also seemed knowledgable about Ehlers Danlos Syndrome (I definitely have this super special congenital birth defect.  I was tested for that via biopsy when I was 12 years old. It's a genetic flaw in my collagen.), so as a pre-caution, he started me on a beta-blocker that will help protect my heart muscles from becoming weak as the collagen begins to loosen up the arteries around my heart as I age.  He also ordered a heart ultra-sound since my mom cursed me by having a heart attack at such a young age. Man, my gene pool is Very, Very, rotten regarding health risk factors.  I have Kelly to thank for those all too frequent: colonoscopies.  Why is he such a hero, again?  Oh, that's right...Cancer Survival Boy Wonder.  I remember.  Go get 'em Kel.

So after two days of a hellish headache that nearly landed me back in the hospital, I woke up this morning praising God: as there appears to be a reprieve of some kind. I woke David and told him I was not hurting and planned to not move, so I could rejoice in this God-given moment.  I immediately described the Legend of the S'coot; so he grabbed my computer for me.  He was definitely as happy as me. I say "was" because, he IS sound asleep and dreaming about wooden ladders that are clearly not as maneuverable as aluminum.  He is apparently quite frustrated with the maker of this wooden ladder.  My best guess is that he watched a little too much "Shark Tank" last night.  I'll be sure and limit that in the future.

Peace and Love,