Wednesday, August 13, 2008



The last resort this week to get this post up..
....bring the laptop to the coffee shop and sip a latte

Three months have come and gone, the allotted time period my husband gave himself for his back to work trial period. This same duration of time wasn’t just plucked out of thin air; it was the span of time between that particular starting and his next round of doctor and specialist appointments requiring more pulmonary testing and graphing chart data for a myriad of other issues particular to his personal medical case.

With summer vacation in our midst, several of the doctor appointments previously reserved were either bumped, or canceled by medical staff and then promptly rebooked, thus prolonging the original three month’s trial time period unexpectedly by several more weeks.

Here we are now at the threshold of making life changing decisions based on the new medical report findings, and review conclusions after the initial trial period came to its close. Where do we go from here? It's complicated for us, so I'm wondering if I can even attempt to explain anything here, but I'll try. (Actually, apologies for this late post, as I was overwhelmed with life this week, lots of my mind, and the photo above was taken at a coffee shop where I did something not yet attempted. I took my laptop with me and sat with a hot coffee latte and typed repetitiously with incredible verbosity, and then I edited and retyped, and then typed some more. Can you say therapeutic for me? sigh...) Truthfully, we are still stumbling along, trying to remain positive for the road ahead, hoping and praying we make the best decisions possible for everyone and everything involved.

Positive thinking has become a true focus these days, being ever mindful to keep focusing as we live life remembering also the prudent counsel, that of capturing a clear vision for waltzing forward using baby steps “one day at a time”; if indeed (candidly speaking) there are many days when we are successful with our attempt at doing so, our personal world’s complexities offering surprises at every turn.

Previously I shared the information about my husband’s decision to return to work HERE, but I wisely omitted several specific aspects involved as a myriad of details were obviously overwhelming enough for my husband and our family at large, and seriously, we weren’t ready to share them publicly.

One such dynamic detail was the fact my husband was required to live out of town, hours away by air in another city during this trial period while learning a new career portfolio, only home on weekends. Call it a return to an educational endeavor, likened to being back in school with the challenge ahead, the entire package necessitating geographical changes to accomplish the goal set before him.

Woohoo, we are here to pick you up!

For the past three months then, our routine fast became survival mode tolerances all week focusing on our own individual vocations in life; hubby with his work challenge and keeping a balance between work, sleep and his medical care, myself remaining at home tending to the children and the home front, keeping an eye on my own scale of stressors to remain steadfast and focused. Thankfully the time has flown by.

The calendar became ritualistic in nature with weekend hours carved around my husband presence, making memories together on purpose if possible, though he also spent time recovering from his purposeful work responsibilities. It seemed strange at first as the phone rang a lot on these weekends, before his staff learned what to do otherwise, bringing out a whole den of bears in the rest of us at home, exposing our fangs and growling at him when his cell phone would suddenly interrupt our family times together.

This type of scene didn't last long! :)
Beach and cell phone don't go together, right?

In no time at all, we soon rolled into becoming the Friday night greeting committee at the airport when picking up my hubby after his flights landed, and offered more pompom ruffling and song with early Monday morning returns. A routine was carved for sure. We were waiting, we were always ready for him to come home.

I suppose many women would go a little bit stir-crazy if their lives suddenly required usurped lifestyles as they know it. Vast changes from having my husband home for sixteen months straight, officially bound together at the hip for that entire time as a family, and then not being together at all, was admittedly quite a change for everyone as one might imagine. However, in our case, my husband has always been involved in careers where travel was necessary, where we’ve been apart for large chunks of time, and thus is one reason why being apart wasn’t as huge of a forefront concern for us if it becomes part of any career package short term requirement.

However, that said, we did incorporate somewhat of a regimented routine together where telephone appointments with one another were permanently etched and logged into our daytimers, a time when we’ve dropped everything and delighted in hearing one another’s voice a minimum of twice daily, morning and evening. Technology what it is, we’ve also used email, text messaging, cell phone, and of course this blog to relay and keep one another abreast of our days.

There were other pressing concerns when my hubby made the decision to return to work. It didn’t take a rocket scientist to figure out my hubby’s entire reserve of natural energies would be part of the challenge just to resume efforts in the office world. Every woman who knows her man’s desires to offer satisfaction with the job well done also knows it sometimes necessitates warranting plenty of elbow room to deal with the additional admitted fact in the midst of it all, that of possessing a AAA personality, and we all know how that is, right? wink

My husband did not want his medical limitations to hinder any possible success during this allotted time frame, so add to the mix eating, sleeping, a simple exercise routine, multi daily breathing exercises, and even the need for napping when necessary, then it's simple really because the remaining hours of the day were easily consumed without the family present. Overall, we’ve done very well with our separation, but that doesn’t make it any easier when everyone is missing him, and he in turn misses us.

Thankfully, his arrival back in the workplace has reaped only positive attitudes surrounding him, cheery faces continuously welcoming him back into the management fold are still stirring up a steady bout of emotions like no other.

The deep care and compassion was an unexpected surprise, colleagues always there to boost his morale and pat him on the back for a job well done, productive team meetings and group luncheons abound to keep everyone in sync, offering a tranquil office environment for everyone. It’s become a group effort to assist in his successful return, something he and I are so grateful for.

And then there’s also been a plethora of faxes, interoffice notes and an abundance of emails flooding into his inbox by well wishers from offices all across North America within the same company making his health burdens at best, feel a whole lot brighter from the positive work environment surrounding him. It’s definitely been a “love in” over there, a fun teasing I poke him with upon occasion.

As if this bunch of heartfelt expressions isn’t enough, add to this the personal emails and telephone calls from family, friends and the blogging community, continual prayers being offered to uphold us during this time, and we have one emotional family standing by, clapping and whistling for him, high fives ready to greet him when he walks across the finish line, at least the trial period finish line that is. And it’s here now; it’s time to make plans for our future, big plans.

My husband gets blown away at times, unable to keep emotions from hovering at all time highs, cherishing the influx of best wishes because truthfully he doesn’t know how long he will be able to remain at work medically or physically as time progresses. One lung infection could land him in hospital within 24 hours, it can and has often happened that quickly.

Like any vocation in life, even with this aforementioned type of continual cheer and feedback, there isn’t always a continual life giving force with the sometimes grueling grind of the job portfolio, but it sure helps to have it anyway. As with any corporate work career, he protects himself from additional added anxiety to (hopefully) keep him as healthy as possible.

Like his new chair, a "John Deere"
chair to match his lawn tractor

It has been a huge sacrifice for my hubby and me to go forth on faith with this decision to attempt returning back to work, however, based on everything included in the mix, work and health, necessary decisions before us are not yet over....

After a three month round of doctor and physiotherapy assessment appointments, there have been additional medical issues discovered with attention to detail on his joints and muscle strength loss (among others) to stimulate and create several down moments in anyone's heart.

My husband has tried to be so brave despite enough reasons to send him loopy recently, and I am almost embarrassed to mention that my own usual rock solid nature has been rattled, bringing me to the brink of spilling tears almost daily the past two weeks before I begin to bite my lip and raise my chin back up again, attempting (!) to be ever positive for the time when all will be well again, that it's just "a moment" to get through. These moments seem to come more frequently; I ask for prayer to remain strong, and brave here...

Meanwhile, things are complicated as usual for us as a couple and us as a family. My husband's lung disease has only one possible future prognosis noted by specialists in three major cities, those of; Vancouver, Toronto and Chicago where all specialist doctors have conferred on this strange and rare disease - and a hands down decision was concluded for the only prognosis possible - that of a double lung transplant.

The addition of a rare blood type, discovering it to be second on the list of rarity blood types worldwide, has only complicated matters yet again. Blood types must match for any organ transplant, that's why this matters.

Our journey has already been long, even grander bumps are now appearing along the road ahead. We pray to become bulldozers to keep plugging along, smoothing out everything in our path, even if only with being upheld by our faith alone.

At the top of the list is a major geographical move to get positioned near Canada's top lung transplant hospital and use my hubby's medical referral to meet the surgeon before winter sets in. It is such a tough and heady thought to consider another major move at this time, but the ultimate in medical care considerations from now until someone in the medical community decides when the line will be drawn in the sand keeps us looking ahead. The paperwork has been submitted. There’s no looking back, only forward. I’ve gone cross-eyed at times, functioning on little sleep due to spending scads of time browsing the internet for real estate possibilities in our preferred new area locales.

It makes so much sense to make this move now while my hubby is still well enough to do it but on the flip side doctors are warning although this is the best case scenario, it can also create additional stress to inhibit the physical nature of the lung disease. It's advice reeling with double speak by the doctors themselves, hardly helping the situation at all.

His work location wouldn't be far from the hospital, something to be grateful for, as well as the ability for great local referrals for continued physiotherapy, nephrology, ophthalmology, optometric, naturopathic, and of course respiratory care. There is also a rehabilitation program location, one of two in all of Canada for him to participate in when necessary, an incredible blessing to be sure.

We have researched high and low for the best possible medical care and my husband's company has matched him up within the US for additional medical care should something occur to prolong the time when his number comes to call. How good is all this? GREAT! They will also move us to relocate closer to the general area if that indeed becomes the reality for backup down the road.

Good news in all of this and there HAS to be plenty of good news right? My husband has escaped the oxygen therapy decision, but will return in seven weeks for another specialist appointment to decide when the time is right to begin this next step.

Admittedly we are becoming a bit frightened at times over “the unknown” and what the future holds, but we also know where our walk is leading us, and I and our family will remain hand in hand with my hubby so he never has to walk his journey alone. We can only pray for greater strength to persevere during what seem to be momentary tough times.

We've also come to the point where we can barely talk about it verbally in great detail anymore; our guts involuntarily begin to churn when doing so with the huge plethora of details afflicting everything. I hope this part too is just a phase. That said if I fail to reply with an update to you privately by way of phone or email in the near future, or I cannot commit to hosting out of town guests during this time as previously thought, I'm hoping those who may be affected can only try to understand because I'll be a little busy the next few months as reality will set in, as I do have a house to prepare for selling soon and on the flip side I also have to find a house to move to! Our preference is for this next step to happen before winter sets in if it’s all meant to be that is. God knows, we don’t, so we’ll just ask him to remain our pilot on this one.

Maybe this is just a phase, part of the big picture, but I have to learn to say that wee word - no, even if only to myself, so I'll go ahead and apologize in advance if I’m stepping on anyone’s toes, or create frustration in any form. I am the type of person who doesn't like to let others down, always keep my word and find it difficult to even appear a bit uncharitable. I won't go into details here and now, perhaps I can share more later, but we are absorbing decisions that lay ahead.

My husband asked me to reveal his medical condition on this blog a while back, mostly in the hope of finding others with the same type of lung disease, that of "Mounier-Kuhns Syndrome".

We’ve been so disappointed that no one has come forward to contact us, and though we know there are others in this big wide world, we cannot for the life of us find them due to patient/doctor confidentiality within the medical field. It's been very frustrating to say the least, so instead he seeks support and hovers around other lung disease stricken patients facing diagnosis for; COPD, Pulmonary Fibrosis, Cystic Fibrosis, et al because of the like-minded nature of sharing tips and hints for basic comfort survival.

In the future, we will continue to share the medical walk in bits and pieces along the way, just to remain "searchable" on the internet for possible communications with others afflicted with this same diagnosis, though we plan to begin a separate blog for this sake.

My husband would so love to talk to someone out there if you share the same disease, please email us if you feel inclined by using the email link at the top left sidebar of this blog, or the very bottom right on the sidebar.

Thank you to everyone reading this long and sometimes verbose update (wink), visiting with us today via this post. Writing this has been one of the hardest things I've done in recent years, it took me so long to get this ready...and although it's not what I wanted still, here it is because I know family and friends were getting worried with me not writing. I'm sorry.

Feel free to keep those cheery notes coming, we love them, and please, may we humbly request that those of you who might want to include us in your prayers, please continue, with thanks from the bottom of our hearts.

Being carried through stormy weather

Jesus I trust in Thee!