Honk and Wave

David asked why we honk and wave when we cross the state lines.  We also lift our feet while crossing rivers and hold our breath as trains pass or while driving through tunnels.  These are very good questions.

We have loved coming to know each other over the past year.  Our first year has been the sweetest love story of all time.  No, seriously...of ALL time. Ok, except, of course, the divine love story of our Lord Jesus Christ.  He definitely gets the award for the most sacred, intimate love story of ALL time.  But, I'm here to tell you, David and my love story is pretty darn wonderful: simply because He undoubtedly brought us together for the sole purpose of acting as conduits of His love.

I'm not feeling all mushy and love-struck because I'm scared shitless about this trip: #MAYOnnaise#Mayo Clinic.  No, this is the real deal.  It is enduring and not one day passes that I don't stop and praise Him for providing for my provision and protection during a time that would have otherwise been devastating.  In fact, today, David offered his support and asked leading questions so I might be able to finish my own health history.  I have been combining my family's health histories over the past month, into a concise document the geneticist at Mayo can use to help refine my treatment plan.  That was plenty hard, but writing my own health information has been crazy, ridiculous, absurdly hard.  Don't ask me why. I don't know other than it's a longer list of problems, traumatic events and surgical mishaps than I really enjoy revisiting.

Having it done is a huge relief and even Sheila Weekly (my dear nurse practitioner friend), who originally guided me toward the necessity of making this easy for the doctors to review, would be very pleased with the outcome.  I have noted the questions I need answered from the doctors there at The Mayo Clinic.  Their answers will likely be much more challenging than the ones I had to answer for David today.  To top it off, I'm not really sure I'm ready to hear their answers.  Apparently, God thinks I am and has gifted me with my beloved husband and LIVING partner.  Leslie will offer good comfort too, as we all curl up in bed each evening after a full day of appointments.

ADHD distraction....we just entered the great state of Minnesota and we honked to say hello and celebrate or safe arrival.  We waved in all directions to greet our new friends and say goodbye to those we just left. It's really just good manners, you know?   These answers are so much easier to hear! In fact, Sydney and Aubrey dreamed up all these travel rules!  That's the main reason we do them: because they said so.  Isn't that great?

We'll be staying at the Kahler Inn and Suites there in Rochestor. Apparently that's the hospital's hotel and is the most convenient place to stay, and even has a park across the street so Leslie can romp around.  Yes, we brought her ball. We'll arrive in about 30 minutes and we plan to just settle in and order out. I think David may be as tired as me now, so we'll flip a coin and see who takes Leslie down for her first walk.

Tomorrow we'll just take the day to rest and navigate our way to my first appointment on Wednesday morning at 6:45.  I should buy a horn for my wheelchair so I can honk and wave when I come into the hospital for the first time.  What do you think?

Peace!

Readiness

"Ready...Set..." These were two of my favorite words growing up.  It meant the games were about to begin and being the youngest of five kids, it was essential to jump the gun and get that leading edge.  Defeat was never acceptable. 

It still isn't.  Only, over anxiousness usually lends itself to false starts and since this is definitely not "a sprint to the finish" situation, I'm tasked with evaluating my readiness for another leg of the marathon and facing the fact that I'm not quite in the shape I used to be.  

The facebook post "Ready Set Go," seemed to stir quite a reaction. I think all of you are just about as ready for this leg of the journey as I am. That feels pretty great to have all of you cheering me along. I know David appreciates it just as much.

We enjoyed two nights' rest in Dallas.  We detoured West so Sydney could intercept us, pick up Charley (Aubrey's dog) and give her mother a big dose of much needed daughter's love.  That has been, by far, the best medicine I have taken thus far. (READY!) I'll get my "Aubrey Fix" when we return from Mayo and swing into Austin for a short visit before returning home.

We must make it back to Louisiana by the 22nd of March as my pre-op stuff begins the following day. I'll be having surgery on March 26th to remove the device that has tormented my spine since its faulty placement on August 7, 2013.  I'm not looking forward to that surgery at all, but the surgeon is a Mayo Clinic Med School graduate and very familiar with Ehlers Danlos Syndrome. She feels sure removing the device will be in my long-term best interest, but was quite frank in her recovery outlook. She believes the next year and a half will be required for a full recovery. She did not beat around the bush regarding the risks, but since I have already experienced paralysis as a result of this process, I'm just hopeful I'll have less pain.  I went ahead and ordered my new lightweight wheelchair that sports more comfort, off-road durability, and Longhorn colors!  Hook Em'!  SET!

As I write today's entry, we are approaching Kansas City, where we will spend the night. Leslie is anxious to get out of the car and join us for some great barbecue at Fiorella's Jack Stack Barbecue restaurant.  Joe's was closed and that's the one we were aiming for....so maybe on the flip side, as they said on the ole' CB radio, back in the day!  

10-4 good buddy...we'll catch you on the flip side of today. 10-7 Super Su.

GO!

Amen

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: https://professional.medtronic.com/pt/neuro/scs/edu/about/index.htm#.VNzcPLDF9tI

S'coots

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,
Su

Peace. Hope and health histories

Got a phone call from a young woman who graduated from Westwood in 2005.  She said she called me because she remembered the picture I had in my office of my daughter.  She described the picture as: "she looked so focused despite all that was going on around her....all she cared about was that butterfly on the end of her finger."  It's one of my favorite pictures of Aubrey as well.  Aubrey has always been a peacemaker and animals and people are drawn to her.  She has a gift, indeed.  Even now, 10 years later, this young woman remembers that picture at a time when she needs to feel peace more than any other time in her life.  I was blessed to have received the phone call, but despite the fact that she thought she was calling me for help, she gave me the great gift: a real sense of nearness to that amazing young woman, Aubrey, who is so clearly a conduit of God's love and grace.

Another reminder to remain in the present and praise Him in the smallest details of our lives.  I am glad I let a few kiddo's say the "f" word while in my office.  It apparently makes a difference when we let people start from wherever they are.  It was such a privilege to work with so many amazing young people for so many years.

It's a privilege to just continue to be in His peace: with lots of people who share that place with me now.  Think I'll use that energy and love of others to get back to work on my health history.

Peace,
Su

Just keep swimming

David and I are answering the 36 questions to find true love that Good Morning America talked about this morning:
https://gma.yahoo.com/36-questions-create-closeness-between-strangers-quiz-120308978--abc-news-sex.html

We have decided they should have consulted with us if they wanted to find true love.  We've been married 9 months and have officially decided to extend our honeymoon for the remainder of our lives.  I can't think of one day in the past year that I didn't deeply value my relationship with David.  We never take for granted what we have and are completely sure we could live in the boat house and live happily ever after.  The dogs might not like it, though, so we'll stay in the house for now.

It generally takes me a couple of hours to rid myself of the evening's headache, but thankfully, I have about 4 -5 hours each day where I can move around fairly normally.  I'm off to my water aerobics class today.  I drive 40 minutes to the recreation center in Minden, where they have an indoor pool, twice a week.  I try and swim laps after the class if my head can tolerate the pressure.  The bromine in the pool aggravates my head...as with any intense smells, so my time in the pool is limited.  It seems to make a difference in my mobility, so I am going to keep going for now.  And as for the "I" in the "drive to Minden" part....well...that's usually a "he."

Peace,
Su

Present Tense and Future Perfect

There are 44 more days until my first appointment at the Mayo Clinic on March 11th: not that I'm counting.

Finding out that I was accepted as a patient on Christmas Eve, and then having the scheduler call the day after Christmas, was just about the best gift I could have ever received.  On super bowl Sunday, it will be 2 years I have had mono-ocular double vision and have been begging for help to save my vision since.  I have been genuinely terrified, and in my fair share of pain (from headaches) since then.  

Fear is an awful thing; it prevents authentic presence in the present tense.  Fear pushes thoughts into the future, while the perfect present zooms by.  I work every day to keep my thoughts in this moment and honor the many gifts God has wrapped me in: my wonderful husband, my children's good health and successful lives and relationships, all my fabulous friends, family and perfect sister, my two ridiculously attentive and distracting dogs, and a home in the most beautiful place in the world.  It is this quiet peace while in His presence when I recognize His protection and provision He promised and provided.  So why in the world would I let my thoughts slip into the future?

Because it seems as though thoughts of the future, like anticipation of something good (my trip to Mayo), seems like that would work out just fine and help me endure a tough day. The problem is that it is still not fully appreciating the moments filling this day.  And truthfully, I am fearful of the outcome from Mayo. What if they don't discover the correct diagnosis and an effective treatment?  What if they do discover the correct diagnosis and treatment, and I don't like it?  It may sound ridiculous, but I really just want to go there and get the diagnosis of a common treatable problem that is fully resolved with either an easy surgery or short-term treatment: sounds reasonable to me.  I'm praying for that and then I quickly turn my thoughts back to today, because no matter the outcome, I am perfectly happy.  I would prefer to feel better and function at a similar level as just two years ago when I trekked through the Grand Tetons, but I have already decided that no matter the outcome, I am good, I will live well, love well, serve Him well.  And that is that.

Tomorrow I will spend the day getting medical records from one more doctor and two hospitals.  And I will reflect on the gift God gave us with Mark Jenning's marriage to Emily and the birth of their daughter, Katie.  His birthday is tomorrow and although he has gone on to our Eternal Home, his beautiful spirit is alive and well in the eyes of our precious Katie.  She is a beautiful gift that gives joy every day she walks on this Earth.  Thank you Mark, and Happy Birthday.