Dread Pirate Su

Greetings everyone!

Well after a very eventful few days upon our return, we are ramping things up for surgery tomorrow.  Unfortunately, I doubt David will do any posting for me on this blog, but I intend to solicit the help of my two beautiful daughters, since your prayers clearly affect the most positive outcomes (hint, hint).

Here's the long and short: Although I loved my new contact, it came with no directions and I ended up scratching my cornea with two long vertical scratches. I had to remove the contact and am all patched up like a one-eyed jack.  You'd think this was very disappointing news, but it actually resulted in 2 mornings where I woke with no headache (Praise God! Praise God!).  The Mayo Clinic cornea specialist had suggested David wait until I was asleep and use a flashlight to investigate if I was closing my eyelids all the way at night: as he thought this might be contributing to my headaches.  The NCIS man was ready and willing had he a wife who slept through any movement at all, but that's not happening, so it took scratching my cornea and applying the salve in both eyes to figure this out.  It makes perfect sense even considering the postural component of my headaches.

We have no idea if this little reprieve in "no headaches" will continue, but we sure hope it will.  As well, we are hopeful the surgery tomorrow unfolds into a painless life that is full of service to our one true God, enduring and loving memories to be made with my family and friends, big adventures, Stand Up Paddling, Hovercraft boating (we don't have one...yet), wild life sightings, national geographic experiences and stillness that surpasses all expectations.

I'll be visualizing these things tomorrow as I have a T-8-10 lamenectomy and have the device that caused my paralysis removed.  Please join me in praying for these things and for the boundless energy, focus, and spirit-filled confidence my dear husband will need in the next few days.

The surgeon is Dr. Wilden, so please pray for her skilled hands and focus. She has not said how long the surgery will take. She just said she will take all the time she needs because "if you get into a fight with Ehlers Danlos, you lose." She knows my disease and she is Mayo Clinic Medical School grad. I have complete confidence in her.

She also indicated I may be in LSU Hospital for up to 5 days and should expect a solid year of recovery.  All this short-term sacrifice for a very cost-effective longterm gain.  I'm ready and 100% confident I will be better for it.

Thank you for your ongoing prayers and support.  It truly takes my breath away.

In Him,
Su

Unexpected blessings

A Christmas miracle? An Easter miracle? I honestly have no idea how to explain today. I’m so mixed up and exhausted that I’m not sure if I’m coming or going.  No, actually, I know for SURE that we are coming home!

The appointment with the cornea specialist was absolutely the best way to end these past 10 days, as you can possibly imagine.

To say I was a bit anxious when we got to the appointment might be an understatement.  Mostly, I was just anxious to get on the road and get headed home, so when the very (VERY!) nice doctor walked in and started visiting about being a graduate of LSU Medical School, loving New Orleans, his family history with Mardi Gras, his love of “mud bugs”, his previous “crawfish boils,” his passion for bringing the heat to his food, and his overall love of Louisiana; I nearly jumped out of my skin while trying my absolute best to be an attentive, reflective listener. 

30 minutes later, we began the discussion of my eyes and as I described my symptoms, he pulled up example pictures (of the same) on his computer.  Within about 10 minutes, he convinced me to allow him to place a contact lens about the size of a nickel on my right eye (the one with the double vision).

I immediately lost my double vision for the first time in 2 years.  I bawled.  And then he placed my glasses on my face and I could see even better.  He explained that most eye doctors don’t like to study what he specializes in, because, quite frankly, it’s boring.  But unfortunately, that’s “why they overlook the most obvious and easy solutions.”

Without going into all of the science, I can tell you my eyelid still drops and he suggested I simply tape it open if it drops too much, since I didn’t want to have the surgery to lift my eyelid.  When I asked him about the “Fuchs/cornea disease” issue, he said, “Well, does this contact lens resolve your immediate concern with your vision today?” Of course, I responded affirmatively so he said, “Well then, we don’t need to worry about anything else for right now.”

Good enough for me because if I can’t do anything about it, there is no sense in hearing all the gory details and frightening myself.

I asked if I could keep the contact lens he had placed in my eye. When he said, yes, I responded with, “Good, because I didn’t want to fight you for it.” So, he gave me another one and told me I can keep the lens in my eye 24 hours a day and only need to replace it once a week. He gave me a spare lens and a prescription and said he’s looking forward to returning to Louisiana this summer for an annual 3-day silent retreat he does at a convent.  I turned to him as we rolled out and said, “Praise God.” He said, “You made my day.  Your smile makes it all worth it.” David enthusiastically agreed with both of us and we left.

Look, I know there is a lot to grieve, but I just drove (that’s right…I was behind the wheel!) toward home for 3 hours, I have really great vision tonight and I shared a breathtaking sunset with the man God sent, so we would both know what it means to truly be cherished. 

Those are really good reasons to celebrate, so I’m calling it a miracle. Whether you call it a Christmas miracle or an Easter miracle, I honestly do not care.

Peace, Only in Him

Su

Word games

My Gram loved crossword puzzles and just about any other word games. Frequently, she'd be seen walking around with a page torn out of the newspaper, that she had folded into a 4x6 quick view of her puzzle. She always carried a sharpened pencil with a GOOD eraser, as she shuffled around the house mumbling about possible answers.  This was not a time to interrupt her with any type of request, as she was not a patient person when she was focused on getting her words just right.  

I sure miss her. She was definitely our 2nd mom because she lived with us our entire lives except short tours of Florida to visit our cousins. Just before she died of cancer, she completed a short poetry book. In the introduction she spoke about how it wasn't the diagnosis of cancer that upset her as much as her inability to write.  

Well, in short, today is a rough day as I was reminded of my Gram during my speech pathology appointment. I'm not sure why it's hard, because I knew these things before coming here.  I knew I was losing my vision and I was diagnosed with Multiple Sclerosis back in November, 2013.  I've just been working very hard to prove otherwise, on both counts, ever since: to no avail.

David and I had a lovely time with each other today, while waiting for a stand-by appointment with the headache specialists.  The appointment never materialized, as we sat at a spectacular panoramic window overlooking beautiful downtown Rochestor.  It was worth the try and hopefully we'll have better luck in June when we return.  I'm really going to make it a priority to nap each day since I'm apparently not going to have any treatment for my nightly headaches.  I've had them for two years.  What's another few months - right?  When I woke last night with a pretty terrible headache, after my typical 4 or so hours, I told David I felt God wrapping me up and reassuring me because I was going home untreated. I felt the deepest sense of empathy for the many Mayo Clinic headache patients who have filled their appointments all the way through August.  It was heartbreaking to consider how many people suffer from such debilitating headaches, that even mine, which seem quite severe, are not sufficiently bad enough as to substantiate an appointment with these specialists: not even in June. 

The appointment with the Speech Pathologist was tough. I like to do well on tests and I wasn't familiar with theirs.  I cheated on my eye test at the DMV: just sat there listening to everyone read out the letters so I could pass the vision test without my glasses.  Cheater, cheater, pumpkin eater.  Well, there was no cheating on my speech pathology assessment: apparently.  We played word games for over an hour and she even called in one of her colleagues to substantiate the diagnosis: Ataxia Dysarthria. If you google that, please add the words "Mayo Clinic" to your search and you'll get the brief overview, without all the drama.  By the conclusion of the appointment, I was admittedly a little teary. Like my Gram, my words are very valuable to me.  A loss of them, a little at a time, is grief worthy. 

It's the synthesis of all of these separate diagnoses that have resulted in a discharge diagnosis of Multiple Sclerosis NOS (not specified).  Still, I praise my Lord, as the bombs reign down.  He sent me my knight in shining armor to bring me to the most shared beautiful view on Earth.  I'm ok. We're ok. Hell, even Leslie is ok.  

It's all ok.  Just like Sydney and Aubrey have said all along, "No matter the outcome, it doesn't stop at MayoNNAISE." Please pass the ketchup.  I have been so blessed to have had the opportunity to be served by these brilliant people. David commented how it would have taken us 6 months or more to have accomplished what we did in just 7 business days.  What an enormous relief to have saved that amount of stress.  Praise God, indeed. 

Leaving here, I will continue to refuse to live in a world that is diseased. I have always been reluctant to share any of my health history because I don't want to be viewed through a diseased lens.  I share it now, so future generations might have a better outcome.  I will have surgery next week to remove this spinal cord stimulator and that will afford me the ability to have future non-complex MRI's and ongoing excellent healthcare.  I'll be back in my water aerobics class in no time and traveling to Austin to search for a Winter home. Ok, I'm just joking about the winter home, but I will definitely be increasing my visits to see my kids and my friends. I want to SEE them every chance I can get.

This is the haiku my Gram wrote derived from the Easter devotional she was reading. These words stood out to her as she realized they formed a perfect Haiku. Her words returned and she finished the trilogy shortly thereafter.  From, Come Into My Heart, by Jean Fox Holland and Our Lord, Jesus Christ:  

Why are you troubled? 

Your Lord is Risen indeed!

Go ye then in Peace!

Abba, Father!

Su

Coordination

For some reason, some wires got crossed and my CT scan was cancelled as I showed up for the 8:30 a.m. appointment.  Or, animal activists put a stop to it? Either way, my feelings weren't hurt because David planned to take Leslie and me to the Mall of America today.  We actually had multiple purposes, because I had to get some prescriptions refilled and the closest CVS pharmacy was just outside Minneapolis/St. Paul.  Transferring scripts just sounded like a nightmare and I really just wanted to say I'd been to the largest mall in the United States.

We put this strange and far-out CVS into our new Mazda CX-5's GPS and off we went. When it instructed us to turn right onto a gravel road, we got a little nervous.  Those of you who know me very well, know that I believe that it's very good to get lost every now and then, so of course, we took the turn and saw some really beautiful corn farms in route.  Believe it or not, the GPS was correct and we made it to our destination, picked up the meds and headed to the mall.

About the time we arrived, I received a phone call from the Mayo Clinic. Admittedly, I was a nervous when I answered the phone, but all I got was good news.  The ophthalmology scheduler stated my consulting Ophthalmologist sent out a second request for me to be evaluated by a cornea specialist and....
!viola!...it happened!  These docs are POWERFUL!  You can sure tell the difference between the ones with tenure and the ones wanting to keep their jobs. It was just great, because I didn't even have an appointment on my schedule and was just hoping to get one in June, when we have to return.  Now, they even accommodated our Friday departure timeframe and the cornea surgeon will see me on Friday after all my other opthalmology tests are completed.  We got my walking shoes on!

Ok - let's pause here and appreciate how often I have typed Opthalmology.  That is a VERY hard word to spell.

Ok, back on track.  The coordination it takes to pull off scheduling all of these different doctors is just mind-boggling.  Narcissism must be boiling behind those walls.  It's easy to be "a good patient", like my good friends, Cathy Brandewie, Jane Sanders, Sheila Weekly, Kathy Gregg, Debbie Hicks, Holly Scofield, Cathy Bourn, Janet Kirk, Kathy Ott, Margaret Beck and Marilyn Ross have all insisted I become.

Man, that was even embarrassing to write.  I know I missed about a half dozen family members too.  It's Lent, so I confess, I have a pretty rotten well-earned reputation, but I just learned early on to "never trust men in masks" (Princess Bride).  I'm getting much better; I promise.

I was so excited about meeting the cornea specialist all day that I got a little overly confident and emailed the rehabilitation doctor I met with on the 2nd day. I asked her if she might be able to assist me by writing a script for a replacement leg brace since my right one just broke.  Keep your toes crossed that this works out!  Get it?  My leg braces are called "toe offs!"

I suppose we were in a celebratory mood, because while at the mall David bought me a new pair of converse to coordinate with my new wheelchair.  My friend, Janet, just got a new pair of lime green converse. I was somewhat "jealy" (she taught me this new text savy verbage), so my sweetheart HOOKed me up! We had them shipped, so I'll be looking BEVOtiful when they arrive home around the same time we do.

Happily, there's not much bad news to report.  Tomorrow morning, we'll start the day at 8:00 with the Neurology Department, where I will sign-in as a "stand-by" appointment for the headache team.  I have that same stand-by appointment in June, but they recommend I go sit in that department if I have 3 hours to spare. We probably could have done that today, but we actually had my prescription errand to run, so tomorrow morning will be dedicated to sitting and praying that I get in to see a speciality neurologist: for three hours!

I'll save you the Gilligan's Island analogy that started running through my sick mind.

At 1:30 I have a consultation with the Speech Pathologist.  A "consultation" generally means I have a doctor's undivided attention for up to 3 or more hours. I'm afraid it will also mean a LOT more appointments, but I'm also hoping that doctor will be able to make treatment recommendations that I can follow back home.  There's no doubt I need some help with my speech.  Don't get your hopes up because they aren't going to address cussing.  I learned tonight that even Julie Andrews cusses like a sailor, so you guys need to ease up on the judgement!

Well, as you know we have been incredibly grateful for all the prayers.  In case you didn't know: Thank you from the bottom of our hearts.  Today, Cyndee prayed I leave Mayo with answers and 10 seconds later, I got the call for the cornea appointment.  Badass!  As I wrote this asking you to "keep your toes crossed" (a.k.a: pray) the doctor would reply to my email request for a prescription for my leg brace, I simultaneously received a reply confirming she will have it ready to pick up tomorrow.  The prayer to successfully coordinate via email, with a DOCTOR, for a new leg brace: answered!

This whole prayer thing...I gotta tell ya: it works.

Peace,

Su

Philippians 4:6
"Fret not about anything, but in everything, by prayer and supplication with thanksgiving, let your requests be made known unto God."



 

Torture, Thieves and True Love

We had an "end of day" celebration for enduring another really grueling day. I even opened a few presents The Footprints ministry gave me before we left. There wasn't much mention of today's agenda in yesterday's blog, because I was edging on the bad side of FEAR.  Having an MRI with this new device is mighty scary since I was the 8th person in the United States to get one implanted.  Well, countless MRI compatible Spinal Cord Stimulators have since been successfully implanted since mine was such a disaster.  I coped quite well with torture, despite being in the pit of despair for several weeks (Princess Bride reference, for those uncool readers). For some reason, some folks think this device is a pain pump and contains narcotics, but it does not. It only blocks the pain message to the brain by intercepting it as it travels up the spine and the brain receives the message as a vibration.  Pedro was the name of my first device and he worked perfectly and is why I didn't want to give him up in 2013 when I had the surgery to implant this knew device.  Well, I think everyone knows that the surgeon messed me up real good and now that new device is causing me pain rather than relieving it.  That's why I am having surgery to remove it on the 26th. I tried to convince them here at Mayo to remove the device for me, but they know my new surgeon in Shreveport and said it was more appropriate to have it done at home.

The problem is, that even though the Mayo Clinic staff knew how to handle the MRI procedures, I pretty much associate anything that has to do with that device with torture.  Therefore, they drugged me up fairly well for the 2 hours I spent in that tube.  They allowed David to go into the room with me and he kept his hand on my leg the entire time and we both prayed throughout.  I have no idea what the results of the MRI have shown, but I am sincerely hoping it will reveal the cause and solution for my headaches.  

After a good long nap, I had an appointment to do the visual acuity test, where my peripheral vision was the main purpose.  Just before the test, we were afforded the opportunity to sit in the waiting room for over 30 minutes. Here, we listened to an older man share his entire life story (quite loudly) with a woman who was approximately half his age. We don't judge for obvious reasons, but what made this conversation interesting was that she was clearly not his family member and was most definitely trying to investigate his net worth, the amount of his life insurance and his dire health status.  She was also working hard to discover how she might be included in his will.  By the time we left, it was apparent she had a fairly good chance of marrying this man and throwing down a few banana peels to speed things along and live unhappily ever after.  David's grandfather, whom his deeply loves, was often quoted as saying, "There's no fool, like an old fool."  Wow. This was daytime television worthy.

I'm not too sure what happened during the day, but somehow I got scheduled for another CT scan of my HEAD.  They clearly have a feral cat problem in Rochestor, Minnesota! I am NOT the cat whisperer.  But, I will show up for my CAT scan tomorrow morning before heading out to the post office to mail a few things.  We are definitely in the home stretch and although we will likely leave here on Friday without too many answers, we will be coming back in June to further investigate my headaches, memory loss and cornea implants. 

Just as we started to head to the vision test, one of the scheduling associates we worked so hard with yesterday stepped from behind the counter and came to sit by the two of us. She wanted to tell us how our love for each other was apparent and how much she enjoyed watching us.  Listen, we didn't have any PDA or anything like that....we are just oozing love.  I highly recommend you watch my favorite movie, The Princess Bride, if you want to begin to understand the depth of our love and the beauty of our love story.

Please continue to pray for the doctors' wisdom and interest in solving the mysteries of my complex medical case.

Peace and Love,

Su

1 John 4:11-12

"Dear friends, since God so loved us, we also ought to love one another.  No one has ever seen God; but we love one another, God lives in us and His love is made complete in us."

  

Sounding off...

The number 11 has always been my "lucky" number.  For some reason, I notice it when it's 11:11 (a.m or p.m!). It's sort of like now that I know I'm losing my eyesight, I see people with vision impairments just about everywhere.  Today, the number 11 brought a lot of humor into our lives (at least I hope you'll think it's funny).  See, I have an appointment at the Department of Psychiatry and Psychology in April and other neurology appointments in June.  I really need to combine the appointments into June, so I can work in a trip to Yellowstone during my favorite month of the year to visit that amazing National Park (the bears are most active in June).  Since I utterly failed the brief memory assessment/screening appointment last week, I'm scheduled for extensive memory/cognitive tests with them.

We're slow learners, but we are finally figuring out our way around this place and David is getting really fit (yes!)! We know we have to go to each desk and negotiate these appointment changes, so we sought out the 11th floor after I finished with all my morning ophthalmology appointments that later confirmed the diagnosis of Fuchs Endothelial Corneal Dystrophy (Fuch that!).  So that's a done deal and I'll see the cornea specialists in June, I think.

Sorry...back on track to the important "11" story.

So, there are four sets of elevators for two huge buildings, but they all get you to the same two buildings...different floors.  We set off on the GONDA/Mayo building elevators to the 11th floor, where the Department of Psychiatry and Psychology is located.  Well, we saw the first sign that said "GONDA/Mayo Floors 12-19," so we got on the other set for floors 1-11...right?  Nope.  That set only had buttons for floors 1-10.  No shit - there was NO 11th floor.  How confusing is that for us memory/vision impaired/ADHD/psychiatric patients? And who is BRAVE enough to tell anyone there IS NO 11TH FLOOR?  Well, we are.  We even called down to the information desk and spoke to a scheduling associate on the 4th floor and no one had an explanation. They all said, "There has to be an 11th floor."  Nope. It turns out there is only an 11th floor on the MAYO/Gonda elevators.  Yes, ONLY the MAYO/Gonda elevators have the 11th floor: apparently for the "discretion" of patients.  Hardly! I was basically screaming that I was headed to psych floor and there was NO 11th floor.  I'm surprised they didn't have a express elevator to that floor for those lost and not found.  We had a very good laugh. A very good distraction.  Once located, their schedulers were kind enough to change my appointment to June, so our appointments are clustered together in one week.  Whew.

You still with me?

It was a tough day. The news confirming my eye woes required more ophthalmology testing appointments scheduled for this Friday. We must stay through Friday at 1:30 p.m. I'm really not complaining (mostly).  I am so very, very blessed to have this comprehensive medical care. And as Aubrey puts it, I am worth the 125.00 bucks a night it takes, in order to stay here and leave with a treatment plan.  Bah.  I'm blessed. I get it.  I'm staying. We're staying. Thank God, it's WE, not just ME.

We got some great "park" time with Leslie. David had a great chat with his Mom, the queen of Homer, Ms. Hessie Watson.  I had a great chat with my mom, who offered to give me her corneas.  We had several good cries. David (and therefore...me too!) got a very sweet gift of dinner delivered to our room.  I got my new burnt orange wheelchair ordered and approved by insurance (Hook 'Em!). We mapped out our way to our favorite yogurt place and managed to get there without getting lost and never setting foot on one ridiculous elevator.  We enjoyed amazing entertainers accompanying a grand piano pianist in the astonishingly beautiful lobby of the Gonda Building. And last but not least, I heard the voices of the two most precious gifts God ever shared with me: Sydney and Aubrey.  This made me eternally grateful I could hear and always stay connected to the most humanizing and breathtaking aspect of this world: the gift of voices.

No words can express our gratitude for you...and yes, you.

Peace, Only in Him
Su

1 John 1:5 ~ 
"This is the message we have heard from him and declare to you: God is light; in Him there is no darkness at all." 

Home is where your stuff is?

Leslie is homesick

We moved a lot and my mom frequently said, "Home is where your stuff is." She possesses real skill at making our stuff look like a home in about a week.  Curtains hung, silver polished and the first dinner party scheduled...our house was transformed.

I've never really been a "stuff" person, but we did bring our coffee maker and Organic Italian roast coffee, because life is just too short to go one day without the best coffee experience possible.  Therefore, we gave it our best shot to make Kahler Inn and Suites feel as homey as possible: to no avail.

As you know, I was told to lie flat all weekend.  Prescribed rest is a very good thing right now.  Generally, I despise it, but after those first two days, it hasn't been half bad (Ok, I'm lying).  Post-procedure instructions for the "spinal fluid draw" typically only require a 24 hour period of "trying not to bend or lift anything."  Because the dura hasn't historically healed well for me, I was instructed to, "lie flat as much as possible, not bend, don't reach and don't lift" until Monday morning. I can assure you, I have followed these directions perfectly because I am terrified of what I call "stand up headaches." I have the "lie down headaches" every night after about 5 hours (if I lay flat, but at home I have an adjustable bed that affords me a few extra hours now and then: thank God), so I wasn't seeking the: "trapped in bed with spinal fluid leaking out of my back" headache.

I'm definitely not a "Praise God when it's good" kind of person.  I am "Praise God all the time" kind of person. Tonight, I am praising God I have not had that awful headache experience.  I doubt God micro-manages my life so much that He had a hand in the direct outcome of this procedure, but I do believe He had a hand in bringing me to David, bringing me to Louisiana, bringing me to a random rheumatologist who knew someone at Mayo Clinic who could get me in, and therefore: getting me here. I praise Him for being the greatest Director of all eternity.

I sort of wish He would micro-manage tomorrow, because I have high hopes for the outcome.  Tomorrow's agenda begins at 7:00 a.m. with the Department of Ophthalmology. I'll be with them through 9:00 a.m for testing including a visual acuity check and the rest of the time is spent doing "eye photography." Then we'll go to Clinical Neurophysiology for a "Sensory Evoked Potential" test, where they glue electrodes to my head to determine how my brain is communicating with the rest of me.  At 11:00 I'll be getting a CT scan of my head and neck. I'm pretty sure they have more CT scans of my head than there are cats to scan.

Ok - let's all pause for a moment and appreciate how hilarious that previous sentence was.  Go ahead..get it out of your system.

I'd like to say that we're off until 2:30 when we have a follow up consultation with the Cardiologist, but we'll actually be stalking the scheduling associates at the Department of Ophthalmology/Cornea team and the Section of Speech Pathology, so we can reschedule appointments they made for me on March 19th and March 26th.  I'm VERY sure we cannot stay in this hotel that long.  Despite the lovely kitchenette and view of downtown Rochester, we both long for our view of Lake Claiborne.  Besides, I'm actually scheduled for surgery to have my spinal cord stimulator removed (there at LSU Hospital) on March 26th, so we will be back at the lake by then.  We were hoping to make a stop in Austin on the way home, but if we have to stay through Thursday, we'll have to skip my friend-fix in Austin.

These details must be boring you to tears, but to tell the truth, it's a whole lot easier to focus on getting home rather than blowing my mind while I consider the little cornea dystrophy disaster.   Indeed, "There is no place like home" (L. Frank Baum, The Wonderful Wizard of Oz).  Leslie is looking "homeward bound" too.

Deuteronomy 20:6 
"Has anyone planted a vineyard and not begun to enjoy it? Let him go home, or he may die in battle and someone else enjoy it."