Over the last several days I have just enjoyed the opportunity to rest and  Susan has explored the surrounding area with the girls (long bicycle ride, exploring the shopping area in Apeldoorn) and doing homework/work in the warm sun.  I have realized how extremely tired I have been and therefore I have found myself staying close to the cottage and my bed the majority of the time.  Today we went to see Dr. van Praagh again for a second of 3 check ups.  We inquired about my exhaustion.  It was interesting to hear the response as they said that this was an extremely common occurance after the implantation of a stimulator.  For those individuals who have struggled with pain for long periods of time they indicated that when confronted with long-standing pain, there is little choice but for the body to focus all of it's energy towards surviving.  When the pain is reduced, people realize how much of a toll pain has taken on their body, minds and spirits.  Once again, especially for thick headed people like myself, they reiterated that I just have to be patient and allow time to bring back a sense of equilibrium. 

Todays visit also presented the Nevro reps, Misha and Bert Tijsma with an opportunity to fine tune the stimulator's programming and hopefully bring better pain control to my feet in particular.  Like before, I willl use the next week to determine if the new settings are successful.    Also on the positive side, I have been able to successfully decrease my narcotic levels significantly.  If all goes well, I should be narcotic free by the time we return to Canada!!  If , after that point, any further pain control is required, we will be able to work this out with my doctor in Canada by using a more effective choice of medications than I had previously been using.    Like we have said many times already, patience and caution will be needed as we walk through the next weeks and months.   The caution has paid off this week in that the implanted leads have not moved, according to ffhd report on Misha's computer programme.  Although I have been spending more time in bed, I have been able to read and finish the Lord of the Rings

As an aside, todays visit was particularly interesting in that the consulting room was more like a party room filled with: me, Susan, Anika, Joya, Tante Tobia, Misha, Bert and Dr. van Praagh.  Tante Tobia, with her background as a doctor, has been an important link for us prior to our arrival and has provided incredible practical and emotional support while we are here.  The doctor and reps were very good in explaining their work and next steps in ways that the girls could understand.  There were moments of laughter and it was no small wonder that the people in the waiting room were intrigued when the door opened and we all filed out past them.   We, again, are so impressed with the medical staff here who seem to truly understand the implications of living with pain -- unlike few other doctors that I have encountered.

Tonight we welcomed Geertje at our dinner table.  She is a friend of Joya's from Olds, who is visiting her relatives in Netherlands but will spend the weekend with us here in Hoog Soeren/Apeldoorn.   She is teaching us dutch ....or maybe we will solictit her to be our translator.  We love you Geertje!!
Today, our first full day together with the girls in the Netherlands, was filled with many different, but fun activities.    Starting our day with breakfast around the table reminded us of how things have changed over a short period of time.  After breakfast we were off with Tante Tobia  to find our way through Apeldoorn to pick up groceries for the next week.   Some of our purchases only loosely fit the "grocery" category as we stopped in at the  Sweet Shop across the street from the bakery.  The next shop was the all organic grocery and then to the larger grocery store before heading home.  After returning to our cottage, Susan and the girls put in some "work" time before heading over to Tante Tobia's where we had tea and laughed a lot  in the sun on a beautiful spring day.  Later, everyone except for myself, went for a walk in the woods as I continued pushing towards the end of the "Lord of the Rings".  Much to the girll's delight, Tante Tobia pulled out two bikes for their use.  So they took a "tour" around Hoog Soeren before supper.  Today also reminded us that finding my limits is not going to happen over night.  Although I don't feel like I overdid things today, the pain in my feet increases rapidly with activity.  At the same time, I continue to decrease my medication and wait to see if the team can change the device programs on Friday to give me better coverage. In the broad picture, all of this seems like relatively minor inconveniences along the way.   As we have said to the girls, "patience and caution" are critical to moving though our foreseeable future.

OK...if the truth be told, Sunday was the day that I "paid" for an "eravagant" but wonderful day on Saturday.  So what was the price?   My pain levels rose from a level of about 2 to a 5  on Sunday and I felt extremely exhausted.  So I spent the whole day in bed.  Unfortunately this resulted in my having to forego a dinner invitation from Tante Tobia and one of her good friends.  Lucky for Susan, however, that she was able to participate.  In attempting to understand my exhaustion and lack of reserves, I think it is most likely a combination of factors including the struggle of the months and years leading up to this point,  finding my boundaries after the implantation and the ongoing need to decrease in pain medication.  With my pain primarily being covered by the new system, my medication levels need to drop as the side effects are more pronounced,

On Monday I said goodbye to Susan at  8;00 am as she headed off with Tante Tobia to Amsterdam to meet Anika and Joya at the Airport.  It was wonderful to see both of them upon their arrival in Hoog Soeren.  After a time of catching up, we headed to Tante Tobia'a.  We had a wonderful time on the patio enjoying yet another beautiful day and the best of dutch tarts with a hot cup of tea.   The girls kept themselves awake so that we could enjoy a family dinner around the table....and then they quickly signed off and headed up to the attic to sleep.

Thank you to all those who helped the girls tie things off and "get off the ground" in Canada -- Grandma, Tracy & Jon and Zander, Pim and MaryAnne, Jayna, Jim,  Coreen, Mike and Cheryl, Areni, Cam and Gaylene, and others that we are sure web have missed...  
Saturday was a meant for making memories.  After a wonderful breakfast, I climbed back into bed and read --- until 3 pm when we took a leisurely  walk/scooter ride to Tante Tobia's and had a wonderful time of laughter and story telling on the patio -- blessed by the warm spring sun and the sounds of the birds and frogs.  The perfect ending to the day was a date (we have forgotten what that was) with Susan at The Jachthuis Restaurant in Hoog Soeren.  It was a 4.5 hour French cuisine dinner that was well worth the price.  The day before we had stopped in to make a reservation and in the meantime they had translated the menu into English for us.  One of the unique features of the dinner is that the Maitre d' shared his knowledge with a unique flare and sense of pride in the dishes the chef had created. What we both couldn't believe is that i basically sat up from 3 pm to 11:30 pm and was fully part of the conversations.  A slowly luxurious day, but I was very tired at the end.

By the way, in honour of the analogy made in the quote to the right, I am re-reading The Hobbit and The Lord of the Rings and find that the analogy rings true both for me personally and us as a couple.

Technology has a wonderful way of creating an immediate change, but our hearts and minds have a harder time making the adjustment to a reality without pain.  Each day I realize the significance of this in new and different ways. For my entire life, I have experienced pain to varying degrees and to levels of incapacitation. And so, to suddenly have my life shifted from experiencing torturous levels of pain that made each moment extremely difficult to having levels of pain that barely register for me, is a mind blowing experience.  So although I enjoy sitting up, walking, going outside in my scooter, reading a book....I am spending long stretches of these days in bed sleeping because I feel exhausted.  Some of Tante Tobia's insights, coming from her background in psychiatry, have been helpful.  For so long, I have been involved in an epic battle against pain to preserve who i was as a person. Now that pain has been largely removed, I am no longer battling against the pain. However the pain has etched itself in my life and has impacted me in profound ways.  Therefore, I am just beginning the process of  "finding my balance" and  reconstructing or re-understanding who i am in the absence of incapacitating pain.  My challenge is to discover what 'normal' is.  This is both an exciting and daunting challenge.  Much of what lies ahead is unknown.

The transformation of Rod's pain over the last week would never have been possible without the unique contribution made by each of the people in this picture.  Repeatedly we think of how lucky we were to be matched with such an incredible, dedicated group of professionals.  When we returned to the hospital, it was obvious that the anticipation of our meeting was mutual.  The medical professionals (Dr. van Praagh, Misha (Nevro Technician), and Lydia (Nurse practioner) --pictured here with Rod----were very eager to hear what Rod's experience following the implant had been.  We were keen to know how my experience matched with their expectations.  Without a doubt, the sense of excitement regarding the success of the implant was held by everyone in the room.  The excitement was tempered by a series of cautions necessary for  ensuring that the maximum benefit of the implant is realized. They encouraged caution in relation to the appropriate range of motion and activity level over the next 4 months.  They provided a schedule to decrease medications that were no longer needed to cover pain. They highlighted the challenges that will inevitably emerge as I no longer have pain as a constant companion and begin to rediscover the characteristics of life without the intense pain.  Without a doubt the next weeks and months will be a exciting but challenging time.  We will check in with this amazing medical team on March 30th. Until then I will try program 3 and based on the performance, make a selection of a primary program to move forward with.

Below is a picture of Lydia, Anneke and Misha looking at the Nevro programming on Misha's computer.
Every day that we step out the door of our little cottage,  we embark on a journey of discovery.  With our pending visit to Dr. van Praagh tomorrow, we decided that today was as good as any day to "test the limits".  So, after a morning sitting around the table visiting with Coos and Rianne de Vink (friends from Taiwan), I had a short rest and then we embarked on a tour through the forest.  Our loop was approximately 3 km and I  walked for about one kilometre which  amazed both Susan and me, considering the state of my health even two weeks ago.  It was wonderful to take in the smells, sounds, and beauty. I would have walked further, except that my legs felt extremely wobbly by the time I stopped.  Small wonder considering that I have been in bed for the last 18 months!  Equally amazing, was the fact that I experienced very little by way of increase in pain.  It was also a wonderful privilege to be out sharing the day with Susan.

In the picture to the left, I am on the road outside our cottage gate, and below you can see the stretch of path behind me that I walked in the woods .  Our walk also re-enforced how lucky we are that Tante Tobia was able to find a place for us here in Hoog Soeren.  We don't think we are stretching it to say that this is truly one of the most idyllic spots in the Netherlands.  It has, without a doubt, nourished our bodies, minds and souls.  We look forward to the arrival of the girls on Monday.  And by the way, Program 2 is working well!!

Rod walks a kilometre without paying for it!!  What a feeling of accomplishment...or is a miracle?
It has been a blessing for the two of us to have both time on our own and times of visiting with Tante Tobia and Alice. During Rod's extended period of illness, finding time and energy and ways to be together was often difficult.  For now, waiting each day to see how the newest program combination works coincides with the signs of spring that are emerging each day around our little cottage and in the woods.  At the same time, we take delight in the small but significant opportunities to re-experience life as a couple -- not defined by the boundaries of intractable pain.  Being outside together, hearing the incredible symphony of birds, observing the signs of new life, feeling the sun on our faces, commenting on the uniqueness of the homes in the village,...just being together in spaces beyond the bedroom and taking in life without the shackles of pain....It is good to be able to take this in slowly, to retreat to take a rest... and let the new reality slowly sink in.  Program 2 seems to be working well and Rod's pain levels continue to be low.  Tomorrow we hope to stretch the activity a bit to see how his body will respond. 
Today was one of those days when we felt like we were in a dream that was too good to be true.  We woke up to brilliant sunshine coming through the window -- a clear, crisp, sunny day in Netherlands (apparently this does not happen often here).  But more surprising was the fact that Rod's pain levels were lower than he has experienced since at least 1996.  It was such a pleasure to sit at the breakfast table together, drink coffee and talk -- a gift that would not have been possible a week ago. After breakfast we took a short walk to the back of the house.  Rod embarked on his scooter and we continued down the lane to Susan's aunt's home.  Tante Tobia and Alice were just sitting down to coffee and we surprised them with our presence at the patio door.  We stayed for 3 hours -- enjoying the conversation...before it was time to head home for a rest. Rod slept soundly (also a gift) for the afternoon and got up at 4:00 pm to SKYPE with the MCCA office staff who were gathering for the Monday morning prayer time.  The end of our day was as delightful as the beginning as we enjoyed sitting at the table, eating and talking.  (Rod likes dishing up his own food, and being able to drink from a glass in an upright position).  

As we write this, Rod has been on Program 2 since  4:00 pm....unfortunately it does not seem as promising at this point as his pain levels have risen significantly..."or is that because I did so much today?" he wonders.  These are the inevitable quandaries that we will undoubtedly continue to face over the next few weeks as we work towards establishing stability with the system and begin to discover what our new lives will look like.  

By the way, thanks for e-mails, comments and form entries -- it is an huge encouragement to hear from you.
After a night of increased pain, I woke to higher pain levels and a confusing mix of emotions to go with it.   How could something that felt so promising the day before, now give cause for doubt?  With a start such as this to the morning, the Neurophysiologist who worked with me in the US and has been supportive through the last years and months, sent a comment that couldn't have come at a more appropriate time in the journey.  Jim Hagen wrote:

"I am so thrilled your travels and time so far have been positve. From your last post it appears you are at that point which can be thrilling and frightening at the same time. Feeling no paresthesia, but noticing you are doing things that
would have been next to impossible last month. You are in our thoughts and prayers constantly. There will still be challenges, maybe a day with increased pain, but I don't believe you've ever been closer to that light at the end of
the tunnel.  Love from Denver,  Jim Hagen."

You are right, Jim, this is both thriilling and frightening. The day today was a play between reduced pain sensations and the return of pain...Through this all, we pray for the patience to take each day's experience as it comes.  Today I spent most of the day in bed, but it was richly punctuated with a  visit of Koos de Vink ( a  friend of the Vandenbergs from Taiwan) and a wonderful dinner at the table with alone with my wife.  It was a gift for the day.  Tomorrow evening I will try Program 2 which involves the use of a different combination of electrodes.


    Rod and Susan

    "If Pain is the ring, Frodo is to Rod as Sam is to Susan."
    (see 02/07/12 for an explanation)

    for the FUNDING progress update 

    A theme song:
    "We Come" 
    by Kim Thiessen
    (Kim works in the MCC Office)

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