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."