Wednesday, June 24, 2015

Can you hear me now?

Blue Tooth! Can you hear me now?

David is driving us home.  I’m writing my blog via voice commands over my new blue tooth (see above).  Check it out….NO ONE else has BLUE TOOTH technology like I HAVE!!! Try not to be jealous.

I cannot describe the relief I feel just knowing we are headed in the right direction.  I think this trip held so much hope, that it was really quite terrifying.  I have been gaining so much feeling back in my left leg since the spinal cord stimulator device was removed, it’s simply the headaches and subsequent lethargy that really seems to be my biggest barrier to the lifestyle I long for. 

The headache specialist, Dr. Boes, ordered a PET scan and a cisternogram. The PET scan was to rule out the degenerative brain disorders, and the cisternogram uses such an usual concoction of “contrast” that the nuclear medicine pharmacists actually sent the wrong medicine and we ended up having to stay in Rochestor for an additional day due to the delay (apparently it had to be flown in and was in transit as my procedure began).  They flip-flopped my schedule so I had the PET scan first. Luckily, I had not eaten in some time as that test requires a short fasting period and several limitations in the types of food that cannot be eaten for the 18 hours prior to the exam.  Whew. But the cisternogram was the test I was dreading the most, as it began with a spinal tap, and then they wheeled me up to the nuclear medicine department, where I spent the remainder of yesterday.  On 5 different occasions, I had an hour-long CT scan, while they watched the medicine migrate its way to my brain. The hard part of this, believe it or not, is that odd shaped slab they roll you in and out of the tube on.  I was in such excruciating pain having to lie there, without moving each time, that it really took two people to get me back up.  It was no bueno.  David and I crashed early last night, as we had to come back at 8:00 this morning for the last of the dreaded CT scans.

Of course, throw into the schedule over the past two days, that I had to fit in a trip to the dentist to be fitted for this device that prevents me from clinching my teeth at night.  We did manage to do that and Dr. Klempe (the Dentist) was more than accommodating.  I cannot say enough good things about him and his assistant, Dawn.  Without a doubt, I am sure God brought us to them.  My teeth could have broken at any time, and although I rather resented that it happened while we were already at our stress max, Dr. Klempe approached this entire scenario as an essential piece of the headache puzzle.  I believe he may be right.

I think it’s safe to say that my official diagnosis is “Complicated.”  In truth, Ehlers Danlos is complicated and unfortunately, they just don’t know this disease enough to have established disease process treatments and protocols. 

After the morning CT scan, David and I went for a cup of coffee and were simply waiting for the next appointment with Dr. Klempe at noon, before we met with Dr. Boes (headache specialist) at 1:45.  But my cell phone rang at 9:35 and I always jolt when the area code is 507.  The woman said, “Did you get a phone call telling you that Dr. Drubach (the cognitive specialist who I had an appointment with in September!) has agreed to see you TODAY at 9:45?” I said, no mam, but we can be there in 5 minutes.  Good thing.  We jumped in the car, parked at the hotel, and my sweet David pushed me at warp speed down through the underground walkway to the 8th floor of the Gonda building! We arrived at 9:43 and even I was panting.  Dr. Drubach did a thorough exam and reviewed all of the previous tests and consultations.  He basically said that although I had significant cognitive deficits with higher order thinking, where problem solving is concerned, there was no evidence of any typical disease process.  Woot! He suggested that my case was complicated (no duh!) and they would simply use the current PET and MRI scans as a baseline for future exams to help establish any possible degenerative brain disease.  Cool beans – mostly good news and now we don’t have to return to Rochestor in September!  It’s really like we won the lottery on that!

In the meantime, we missed the dentist appointment.  David called and thanked him for the help and got the information I need to bring to my dentists in Shreveport.  Then we grabbed a hot dog in the “Peace Plaza” outside the Mayo Clinic and bought ourselves a beautiful pencil drawing of a female cardinal (the video you see below is of a female in a male cardinal mask….I know you thought it was a real cardinal…sorry).  We started getting anxious, so we decided to just go early to my headache appointment since we really, really wanted to see him early and leave for home.

Well, Dr. Boes saw me an hour before my arranged appointment.  Woohoooooo! He said, I know you guys want to get going home, so lets go over what we know.  He said he had another “complicated” patient and had experienced some luck in his treatment, so he felt fairly sure we would come up with a plan. Basically, The cisternogram did not reveal an apparent tear or leak in my dura, but he actually didn’t expect to find one, as Ehlers Danlos Syndrome alone could explain the otherwise, unexplainable symptoms I am experiencing.  He knows the pressure is a problem, especially in finding the right balance between low pressure headaches and high pressure headaches.  He doesn’t think a shunt is worth the risk in my case, and suggested a medication (I can’t remember the name!) that will help address the pain of a headache and tends to reduce spinal fluid pressure just slightly.  He feels confident that this new medication he is recommending and the old reliable (and dreaded because of side-effects), Diamox, would be the best treatment for now.   Lucky for me, he seems to really like my case, and when David told him that I didn’t have a headache last night (first time in months – and coincidentally the night after my pressure was relieved because of the spinal tap), he was totally bought in and seemingly committed to help my physician in Shreveport navigate the prescribed treatments, until we develop a solution I can live with. 

I truly wish I could say they found the problem and they fixed it. That has never been the case when dealing with Ehlers Danlos Syndrome. With all that ambiguity, it’s awfully nice to have some things that are non-negotiables:  My faith, my untiring love for my two beautiful daughters, Sydney and Aubrey, and my ever-growing love for David.  Upon this foundation, I feel capable of loving more, doing more and, yes, doing less. 

We just honked and waved goodbye to Minnesota.  Admittedly, I cried thinking about all that has happened this past week, and how happy I am to leave it behind.  I cannot wait to see Leslie and Charley. Headache or none –I’m done talking about that now.  

Friday, June 19, 2015

Put extra Mayo on mine, please!

There's a lot to say, so I will try to find the shortest way through all of this, but since the last time I posted, I have had the spinal cord stimulator removed, where I recovered from, pretty darn well.  I have been walking every day and have returned to Stand Up Paddling again, which I do most every day. It's sort of comedic to see me, since I generally fall more than I'm up, but I'm getting better each time I give it a go.  David has been joining me on his SUP board and he seems to be enjoying it as well!

On our way to Rochestor, I began experiencing some pretty severe pain in the left side of my jaw. I bought just about everything on the (legal) market to kill the pain or numb my teeth, and thought it would hold me over until my already planned dentist appointment next week.  Not.

We pressed on and I managed to make it to my first appointment here at Mayo on Thursday morning.  The appointment was with the psychiatry/psychology department, where I did over 4 hours of cognitive function tests. I suspected it would reveal some significant memory issues, but really wasn't pleased at the other findings.  Basically, the doctor said my memory was fair (not good, and remembering names is very, very challenging), but that my higher order thinking that involves problem solving was seriously compromised. I also knew this, but didn't quite know how to explain it...which is actually part of the issue: ironically.  In lay terms, I know I need to get from point A to point B, but I get confused when I try and determine the steps it takes to get from A to B.  So, the short of it is, they are doing a PET scan on Tuesday to rule out any degenerative brain disease.

After my morning appointment, David located a dentist who could see me immediately.  Thankfully, it turned out to be a very good dentist, because I apparently clinch my teeth (HARD!) and cracked two teeth badly: one on top and one on bottom. As they drilled the bottom tooth (which felt the worst), they hit a nerve and I learned I could levitate.  Poor David could hear me screaming from the waiting room and was getting pretty anxious to get back there.  Well, they discovered the crack was a zig zag across the entirety of my tooth, so the Dentist had to send me immediately to an oral surgeon, as the only option was to extract my molar.  With a lot of happy gas, local anesthetic, and three hard pulls, my tooth came out - roots and all. Thank God, as otherwise, it would have involved surgery on the bone. I guess having loose connections paid off in that regard.  But, I still had the other tooth to deal with, so I had to return to the dentist, and thankfully, he was able to drill through the middle of the tooth without it breaking apart. He was able to avoid a root canal and simply put a temporary cap on it, that will last me until I get home.  He also fitted me for a device that he thinks will solve my headaches (he's not a humble man), since I clinch my teeth. I had a mouthpiece prior to all of this, but he suggested this was the wrong solution and fit me with one that covers just my front teeth and actually prevents my teeth from ever touching each other.  He called in a favor from his friend at the lab, they did an impression today, and I'll have that device ready to go before we leave here on Tuesday night.  Overall, my teeth are much better but my jaw feels like an 18 wheeler backed over it.  And let me just tell you that brushing and flossing doesn't prevent this, because I'm slightly OCD about that and my teeth had no cavities or issues other than the fact that I was breaking them to pieces while I slept.  How nice.

Oh ya...I failed to mention that our two day stay at Mayo has turned into a week-long stay.  Because they added the PET scan and after today's appointment with the headache specialist on the neurology team, he added a test called a cisternogram.  This doctor was very thorough and seemed to have a lot of good ideas leaving us both feeling like we will either leave here with a definitive diagnosis and solution or at least a plan to address the headaches.  The cisternogram is basically another spinal tap with some special type of contrast that will help them determine if I have a spinal dura leak.  Although they did an MRI a year ago to try as they suspected this same thing then, the doctor today suggested that an MRI is not nearly as conclusive as this test, as it can overlook a small leak.  So, the cisternogram will take place on Monday.  I guess they evaluate the results of this test at 24 hour, 48 hour and 72 hour intervals to see what happens, but the doctor said they would pretty well know what's going on, if anything, by the 48 hour mark.  Therefore, he scheduled me to return to see him late Tuesday afternoon, when he will review the results with me and if all is clear with those results, he will give me a medication regime to follow to try and resolve the headaches.  Of course, if the PET scan reveals some sort of degenerative brain disease, then we might discover the headaches are attributable to that disease process, and in that case, there may or may not be a way to resolve the headaches.

This afternoon, I also met with the original neurologist (Dr. K),  whom I saw last time I was here, and am really confident he knows what he's doing.  I guess he was the fourth person since we've arrived this week who called me "complicated," so I'm pretty sure I'm getting that tattoo'd on my forehead.  Dr. K also ordered an evaluation from the cognitive neurology specialist.  Unfortunately, that Dr can't see me until September, but Dr. K assured me that he is involving the head of the neurology department to urge him to see me before we leave next week.  He wants to get a better understanding of what is going on with my cognitive functioning, and if we are in fact, dealing with a degenerative brain disease, then he wants to know what it is.  He warned me that if that is the case,  there is likely not too much they can do about it.  He said he really didn't think I had Alzheimer's Disease because he felt like it would have shown up on a the previous MRI, but he said there was the possibility that we have just caught whatever disease this is, at its earliest stage and we, therefore, won't be able to determine what it is until we get another MRI in a few months, from which we can compare to previous MRI's.

At the moment, David and I are sufficiently overwhelmed, but terribly grateful for a very nice dentist who has made us swear we will take him out for a beer when we come back in September.  We are also very grateful for food delivery to our room from the local restaurants, rather than hotel room service (which they don't have). I am VERY grateful for noodles since I can only eat soft foods in my desperate attempt to avoid dry sockets.  We are incredibly humbled by the love, care and generosity we have received from all of you.  We feel wrapped up in God's love and know that whatever happens here in the next few days, we will make the best of it.  Our wedding anniversary is Monday, so we will definitely order in a special meal (that's supposed to make you laugh!).

I'm sure there is more...but I'm tired of writing and I'm pretty sure one friend in particular is very tired of reading (you know who you are!! :-) )...oh, and our Greek food was just delivered.  Oh boy...couscous for me...steak kabobs for my sweetie.  Life is good...

Wednesday, March 25, 2015

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,

Friday, March 20, 2015

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


Thursday, March 19, 2015

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!


Wednesday, March 18, 2015


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! 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.



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


Tuesday, March 17, 2015

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,

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."


Monday, March 16, 2015

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 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

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." 

Sunday, March 15, 2015

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."

Friday, March 13, 2015


What does P&P mean to you? Policy and Procedures? Party and Play? Postage and Packing? David thought it meant someone had drank a lot of water and needed to Pee... and Pee some more!  It means Protection and Provision.  Two promises made by God.  These words were taught to me by my friend and hypno-therapist, Marilyn Ross.  She has been a spiritual mentor and as such a conduit of God's grace.

Ulysses "Mac" McLester was a professional and 12 step mentor to me. He was an incredible teacher.  He taught me acronym for FEAR: False Events Appearing Real.

Sydney (my daughter) is the boss of me.  She always has been.  She is my spiritual ground wire and mirror when I need accountability.  She was the one who put me on my "F" diet and thankfully gave me a hiatus today (prepare yourself).  Therefore, you need to know the other acronym for fear is: Fuck Everything And Run.

Aubrey is my youngest daughter and she is my little monkey.  She came into this world swinging, so I knew she was a lot like me.  She has Ehlers Danlos too.  She has taught me about courage. She feels fear every day and she keeps pressing on.  She makes me want to be a better mom.

Fear is future thinking and the further we think about the future, the more likely we are to scare the shit out of ourselves. Unfortunately, some faulty thinking and actions can be the result of those feelings.  When scared, we believe something IS true; it FEELS true, but there is little evidence to indicate TRUTH.

This morning I wanted to FUCK EVERYTHING AND RUN because I was scheduled for a lumbar puncture (which I have since decided they MUST change the name to spinal fluid draw.  I mean...what an awful name....PUNCTURE!) So I started to write this blog before I left because my writing is often my way of praying.  Then, of course, I got a text from my fellow spiritual warriors (Sydney and Aubrey) and they both just reminded me, in their own unique ways, that I should be praying.  So I wrote and I prayed.

There was so much on my schedule today but I was consumed with that one procedure. Fear is a nasty thing.  See, I have had several lumbar punctures throughout my life and spinal surgeries that involved the dura (the membrane that surrounds the spinal cord), and all have ended up with pretty gnarly results. This SEEMS like evidence to be rightfully scared.

Prayer brings presence and God has proven in the past two years that He is in charge of my life. And as Marilyn predicted and reminded me of on a daily basis, He met every single need associated with my Protection and Provision.  EVERY single need.  Many of you helped meet them, so you know.

Doubting that He had "gone before me" (thanks RB) today was pretty frustrating. Sometimes, I feel like I have a little too much in common with ole' Peter, who denied Christ 3 times before that damn rooster crowed.  ADHD moment: I saw two turkeys in the middle of the street in downtown Rochestor today.  I sort of thought God didn't have any Roosters handy, so he sent two turkeys. I tried to not take offense.

I am not Peter and I had the procedure done. I have never been more tired than I am tonight, and as you can see from the picture above, my protector (Leslie) AND my protector and my provider (David) have long since surrendered.  But I had to write about why I wasn't supposed to be scared about the spinal fluid draw today.  See,  I had two other appointments immediately after the procedure: one of which I missed entirely because they took the time to ensure I would not have a dura leak and made me lie flat on my back for over an hour.  The spinal fluid draw will determine if I have MS, so I'll let you know when I know those results.

The reason God had me focusing on that first procedure was because the hardest one turned out to be the appointment with the Neuro-Ophthalmologist.  That crafty fellow had me distracted!  They did tests never done before and spent over 3 hours with me.  Unfortunately, the doctor discovered I have Fuchs Endothelial Corneal Dystrophy.  She said she wasn't a cornea specialist and would have to refer me to lots more testing next week (Oh yeah!), but that I had a moderate case for sure. This is a progressive disease, where my normally visually challenging mornings and painful eye, will begin to extend further into the day. Eventually I will lose my eyesight. She is referring me to the cornea specialists to develop a treatment plan and assess if I am a good candidate for cornea implants.

It's funny because I am not scared.  I am sad.  I am sad that there will be a day that I will not be able to see the faces of those I love the most.  But I have lots of days I will be able to see them and I won't let that ultimate day of NOT....interfere with today's YES.  In fact, the entire time I was getting my LUMBAR PUNCTURE (that turned out just fine, except that I am exhausted and have to lie flat for the weekend), I listened to the ipod Aubrey gave me for mother's day and ONLY played "All is well with my soul" throughout. I visualized the trip Sydney is planning for us this fall: zip-lining with my sweetie in Costa Rica! And lastly, I twirled my wedding ring.  The doctor said I was the best patient he ever had.

Well, fuck.  

All kidding aside, He's got this and as Sydney said, it's ok to be a little sad tonight, but I have to stay here at Rochestor until they get through all this complex stuff and fix me up for the journey ahead. Yes, mam.


Joshua 1:9 (Thank you, Lisa Thorne)
"Be strong and of good courage; do not be afraid or dismayed, for the Lord your God is with you wherever you go."

Thursday, March 12, 2015

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 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.

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."

Wednesday, March 11, 2015

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.

Tuesday, March 10, 2015


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.


Monday, March 9, 2015

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?