Slap Happy

Today was a big day, but thankfully, not quite as busy as yesterday.  With take-out Chinese in our bellies, I fear we will not be awake long.  I think we both may be more tired today, simply because yesterday was so hard and we just didn't recover.  I knew David had crossed over to "exhaustion" when we both started cracking jokes with the cardiovascular office receptionist. I ALWAYS think I'm funny, but David is slightly more modest: in case you don't know that about him. The receptionist seemed to appreciate our humor as we began to reflect on the fact that there were over 60 Cardiologists and therefore, no way any of them could feel like they were somethin' special.  David speculated that the doctors would face retirement before they ever completed a progressive dinner.  I was sure they would all be fat if they had a mandatory progressive dinner and would therefore all die of heart attacks.

Don't judge.  We are exhausted. I honestly had no idea how we were going to get out of the hotel room.  Thanks to my great motivating friends, I gathered a bit of courage and headed out the door for yet another round of blood tests.  This time, they drew blood to do the genetic test for Ehlers Danlos Type IV (Vascular Type).  The results for that test will not return for 4-6 weeks and based on what I learned today, I will apparently learn of the outcome via the Mayo Clinic online medical records app.  This has been really great to have, especially since my appointments seem to change throughout each day, but I'm pretty sure I'm not too excited about hearing the results of that test in this manner.  Since it's impossible to see the doctor face to face (I actually don't like that one...so that's good), I guess getting the news over the internet is the next best option? I suppose there is no good way to get that news if it reveals that I have Type IV.  I'll leave it to you to google Ehlers Danlos Type IV, because it's pretty darn depressing to consider, much less write about.  Let's just leave it at: I don't want to have it - at all.

After the vampires were done with me (she was a very nice one today), I headed to do a "visual evoked potential" exam.  Here, they glued electrodes to my scalp and ear in 5 different places. Ryan, the examiner, stated that he was testing my central nervous system and since the nerves in the eye were the closest to the brain, they were therefore "first" in line regarding communication with the brain. They were testing how my eyes took images and flipped them from upside down, to right side up.  Did you know that your eyes initially see images upside down? Your brain then takes the images and flips them around so you can interpret what you are seeing in the real world.  David says, every photographer knows this and that cameras actually do this as well.  I didn't know this and I sure didn't like staring at a black dot on a screen with moving black and white lines.  My eyeballs were wailing by the time I was done. I don't know if I "passed" or not, but I imagine I will get those results tomorrow when I see the neuro- ophthalmologist.  Ryan, the examiner, was not a Longhorn fan, so we didn't linger.

We headed to the radiology department in the "Gonda" building.  We were "gonda" eat lunch first, so we enjoyed "Freshens" one more time and dropped by the Chocolate Oasis.  We were gonda eat better today, but we decided white chocolate almond bark was a better plan.  The shoulder X-rays went off without a hitch. I was surprised they didn't make me hang onto a gallon of milk and make my shoulder dislocate, in order to show the best view of my shoulder woes. This was how they determined my shoulders dislocated back when I was 13 years old. I explained this to the radiologist tech and she grimaced and said that was in the "dark ages."  Huh....shocking.

We scrambled out of there and barely made it to the "Rehabilitation Doctor".  No, I had never heard of that kind of doctor before either.  She was pretty great and had actually read all the notes from all the previous doctors before seeing me!  OMG!  She spent over an hour with me just trying to assess what I was capable of, what type of rehab I would need and what other types of devices or assistive technologies would be helpful in my recovery.  She will be the doctor who will help me qualify for a mobility service animal.  I am ready to make that commitment now and since it's likely to be at least a 2 year wait before I get a dog, I will have to go ahead and get moving on that process now.

Last but not least, I picked up my pulmonary function test device that I will sleep with tonight.  The pulmonary function test is simply a finger sensor that is strapped onto my now UNPOLISHED fingernails (yes, I just paid for a manicure 5 days ago) and will measure my oxygen levels and pulse all evening long.  The purpose of this test is to determine if I might have sleep apnea.  Further sleep studies are being considered.

Unfortunately, the schedulers don't seem to recognize that we are paying over 100.00 dollars a night for the hotel and have scheduled more tests and consultations through next Thursday the 19th.  We are trying to have this appointment moved, along with one they set for me in April and one in June.  I like Mayo Clinic just fine and Minnesota is thankfully breaking warm temperature records, but I really don't want to come here three times in one year.  Costa Rica is coming to mind....

My Gram came to mind today too, as we lost our minds at the Cardiologists' desk late this afternoon.  Gram often got "tickled" and began laughing over something so completely mundane that I wondered if she might be sipping sake (That one is for you, Pop).  Frequently, she laughed so long, it became hilarious to watch her so amused with herself that we would also start laughing at her and her failed attempts to stop laughing: and the laughing would continue.  I think they call that "Joy".

Doesn't it just prove that God is the great Director, when we can wait at the cardiologists' desk and find joy?  We laughed so much at each other that it was contagious. They didn't ask us whether or not we had traveled to Africa or been exposed to someone with Ebola....they asked us where we were from and laughed with us about the insanity of narcissism and joy of humility.

Peace,
Su, David and Leslie

John 16:33
"I have told you these things so that in me, you may have peace.  In this world, you will have trouble. But take heart! I have overcome the world."

Physical Health NOT Mental Health

The Mayo Clinic does an awesome job at ensuring my physical health needs are met.  A volunteer even pushed me through the breakfast line, while also recommending how to grab great yogurt during the day. Little did we know he was preparing us for the fact that there was NO WAY we would have time to eat lunch.  That yogurt really was great and its greatness was greatly accentuated by starvation and desperation.

There really isn't an effective way to describe today, but I will tell you it was mostly wrapped by incredibly nice people.  However, one young woman in the genetics department discovered it really wasn't wise to tell me how the fact that my Gram had to sleep while sitting up, wasn't IMPORTANT.  Yowza! I guess I needed a good cry, because I did just that all the way through my delicious yogurt.

Now, the following is boring, but many of you want these details.  For those of you who are bored to tears when someone starts venting their medical woes....please just skip to the last paragraph.

Our day began with fasting at 6:30 - 7:30 at the laboratory.  They took my blood and urine and I have no idea what they're doing with either.  I can tell you, as a woman, it never gets easier to submit a urine specimen, but they sure make it easy to turn it in, with drop off locations throughout the hospital.

Then we grabbed that quick bite for breakfast before heading to get a chest x-ray, an electrocardiogram and to meet with the Cardiologist, who deemed himself my "quarterback" (7:30 - 11:00). He decided my chest looked good.  Nice. I guess I don't need any further work there.  David agrees.

The Cardiologist ordered a heart ultrasound just to look for any aneurysms that are often associated with Ehlers Danlos Syndrome (EDS). He also made me an appointment with the Mayo Clinic Neuro Ophthalmologist.  That was the best news I had all day.  I want to save my vision pretty badly, so that's likely the only shot I have at that.  David and I were both super duper pumped.  That appointment is Friday.

We ran/rolled from that appointment to the Family History and Genetics appointments (11:15 - 2:00), where all the information all of my participating family members have sent me over the past two months, was entered into the computer.  They really seemed to focus on EDS and where I got it, how I was tested for it (back in 1980 at the Oklahoma City Children's Hospital via a skin biopsy), what the results showed and what further tests need to be done.  In the final analysis, it was determined that I need another genetics test to determine if I have EDS - type IV.  This is not a good thing to have.  It is called EDS - vascular type and generally ends with some type of gnarly death caused by an artery dissection.  David is trying to find out if the insurance company will cover the cost of this test as it is over 2000.00, but we will have it done either way because there are definitely precautions that should be taken if I ever need to have surgery again.  So, he ordered another blood test to be used for that determination.  We'll do that blood draw tomorrow since I never made it down there today, like I was supposed to do.

I never made it back to the lab because I met with the neurologist from 2:30 - 5:30.  It hurts me to write that because I am struggling to stay awake to write this blog.  This doctor was really excellent and offered all the "bedside manner" the geneticist missed out on learning during his internship.  In short, he also said I was "complex" and I did not punch him out. I was POSITIVE and acted like that was the first time I had heard this lovely descriptive word.

He ordered a sleep study, a lumbar puncture (to assess me for spinal fluid pressure and Multiple Sclerosis), and appointments with Clinical Neurophysiology, speech pathology and the headache specialist team in the Neurology Department (that last one happens in June!).  The appointment with Clinical Neurophysiology will assess my cognitive deficits that have increased over the past 2 years.  He performed a series of cognitive function tests while I was in his office today and the outcome was sort of no bueno.  I don't like talking about that one, but I admit that I have expressed concern to David on several occasions, as I am noticing several symptoms that are a bit alarming.  And that's all I'm gonna say about that: not gonna talk about that either.

The speech pathology appointment is scheduled for next Thursday the 19th (I know...very bad....we are trying to get an earlier appointment) and will assess a treatment plan for my speech impediments that have continued to decline over the past two years and basically make me sound like I had a stroke.  Yes, I may have had a stroke as one doctor indicated that I did, but they all double talk each other and all I know is that I can't talk worth a shit.

David rushed me back to the hotel room and ordered pizza that I have thoroughly devoured while writing.  I have thrown the ball for Leslie about 200 times and am ready for bed.  Looking back on the day, I see how physically draining this day was, how tomorrow will also be pretty rough, but my mental health is not really their chief concern.

It was the concern of all of you who wrote such great notes in reply to my facebook post this morning, texted me throughout the day, mailed my daughter's cellphone to her, called me, posted very, very, corny, mushy, supportive messages on facebook, and last, but certainly not least, sent me beautiful flowers and a loving note (see above).

Therefore, my mental health is in great condition. My brain is in need of rest, so I'll catch up with you again tomorrow.

Peace and Love,
Su, David, and Leslie

Isaiah 41:10
So do not fear for I am with you;
Do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
 

Leslie

Leslie is a big hit wherever she goes, but she doesn't usually appreciate people approaching me.  That's sort of been a problem.  Thankfully, the people in this hospital-town seem to understand pet boundaries and have only been guilty of nice commentary and admiring her from a distance: sweet.  It's always a surprise when someone recognizes she is a German Shepherd and not a black lab.  I don't even see the resemblance other than the fact that she's black.

This German Shepherd really believes she might be a person.  She pulls me along in my wheelchair when I say, "Take me."  If I'm in pain or upset for any reason, she basically mauls my poor sweetie's face, until he comes to my aid. David's gotten REALLY good at anticipating the assault and blocking her as she dives in for the chomp.  Because of her long history of jumping up and eating people's faces like puppies do (she doesn't seem to realize that it is not quite as cute now) and her tendency to alert David with this same beloved behavior, she has earned the high honor and doggie designation: face chomper.

Today, Leslie escorted me from the hotel room to where my first appointment will be tomorrow at 6:45 a.m. She pulled the chair the entire way (about a 3 or 4 block walk), all underground, in the Mayo Clinic subway level walkway tunnel.  She loved the ramps that afforded her the chance to break into a run.  David just prayed that one of us knew where the brakes were.  After a 20 minutes adventure through the tunnel system, we arrived at our check-in desk, huffing and puffing.  Well, actually, Leslie was huffing and puffing. I was nursing my friction wound from steering with a bare hand on a metal wheel.

The Mayo Clinic thought of just about everything, so we were happy to discover actual cups at the water fountain.  Leslie got the first drink and gulped down two cups in no time.  The water splashed on David's shoes dried rather quickly.

I mention "just about everything", because when we stopped at the Mayo Clinic store to buy a souvenir t-shirt, we could not find a German Shepherd sized shirt, collar, dog bowl, or even a scooby snack.  Damn.

Leslie has passed out for the night.  David is in NCIS la-la land. I am trying very hard to be brave and focus on just this moment in time that is filled with God's love, text messages from friends' galore, and the best support team of all time. Without a doubt, I am blessed beyond my ability to reconcile.

Genesis 2:19 says, "Now the Lord God had formed out of the ground all the wild animals and all the birds in the sky.  He brought them to the man to see what he would name them; and whatever the man called each living creature, that was its name."  And so, it is with God's grace that I hereby Christen all Black German Shepherds as The Face Chomper.

Peace!

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