Valentines Day and Thoughts on Marriage

     We have just come through Canadian Thanksgiving 2021 and I have so much to be thankful for.  One person I am so thankful for is my husband, James.  God knew what He was doing when He brought us together.  James and I are 'high school sweethearts' but our relationship did have some ups and downs and bumps along the way.  We didn't end up officially dating until we were into our 20's but those teen years of friendship were significant and were the foundation of a lifetime of friendship.

    'God gave me you' are 4 powerful words.  When we pick our life mate we don't necessarily see the big picture.  I am so grateful to God for giving us each other and seeing how we would be able to minister to each other throughout our lives.  Marriage is sacred.  The enemy of our souls is constantly trying to attack this sacred relationship and we have to guard against that.  I look back on 17 1/2 years of marriage and see God's hand in guiding and helping us to grow in our love and maturity.

    It's interesting how we often end up marrying someone quite opposite from ourselves, isn't it?  James is solid.  I am a little more emotional and impulsive.  He has a ton of common sense.  I am a dreamer.  I am caring and compassionate.  He is pragmatic and practical.  I am an introvert.  He is more of a social person.  I am a thinker and am detailed and analytical.  He likes to just go and get stuff done.  I am a planner - he is not.  I can be complicated and nuanced.  He's a pretty straight shooter and what you see is what you get.  He runs circles around me when we work on a project while I am methodical and slow.  I struggle with pride while he tends to be more down to earth and humble.  Which is code for "he can take criticism and I struggle with admitting I'm wrong and saying I'm sorry".

    But for all of our differences, we really care about each other and "get" each other.  For every conflict and really raw, honest, and hard time we have had to work through - we have found a new depth to our friendship and to our love for each other.  Marriage is truly sacred and a gift from God.  I encourage every couple reading this to fight for this relationship.  It is beautiful and it so so worth the hard work it takes of maintaining it faithfully day in and day out.  James didn't know he was signing up to have a chronically ill wife.  But he has done an amazing job of loving me unconditionally through it and just being there for me and the kids.  He's pretty great!

    February 14, 2020 was not a a typical Valentine's Day for us.  Often Valentine's Day would include a date out to a nice restaurant, maybe a beautiful bouquet of flowers...sometimes I planned a date and sometimes James did.  Truth be told, often there is a bit of tension involved as my expectations of romantic gestures from him are often different than his.  We keep learning how to communicate and work through those times.  Sometimes the pressure of wanting to please me freezes him up and then I am still hurt!  I doubt we are the only couple with these kinds of issues.

    On this particular Valentine's Day though, I don't remember having any grand expectations.  I had to go into work for 1/2 the day and James in his kindness had left me 2 chocolate bars in our entrance to see on my way out the door.  Unfortunately, I did not see them though!  He texted me later to ask me and I told him, "no, sorry, I only saw the slop pail there that (ahem) hadn't been taken out again".  Ha ha.  Isn't that an illustration of something?  He tries to be sweet - and all I see is a slop pail...hmmmm.

    I felt miserable that day again.  I came home from work and collapsed on the couch as per usual.  I couldn't muster the energy to take Elie to gymnastics class in Arborg so my mom took her.  James' parents generously offered to have our kids over that evening so we could have a date.  James gave me a bunch of options of what we could do.  All I wanted was to stay home on the couch where it was comfortable.  He went to Arborg and got takeout from Chicken Chef.  Chicken fingers with honey dill sauce, poutine, and Pepsi had never tasted so good.  We stayed home and watched a movie and it was good.

    I have a really great guy for a husband.  I am truly grateful for him.  When I look back over the last 2 years I see so many reasons to be thankful and he is one of them!

    

South Carolina?

     The next week, Feb. 10-14. I went back to work but I was miserable.  It was all I could do to drag myself through the day, come home, and collapse on the couch or in bed.  How our kids stayed fed and clothed I don't know.  James was probably doing a lot of the work as well as my mom and sister.  My legs hurt incredibly much.

    On my days off of work I was trying to gather medical documents - lab work, chart notes, etc. together as my brother James and his wife April were offering to help us get medical help in South Carolina where they lived.  James is an NHL goaltender with a professional athletes' salary and they were generously offering to try and get us help from the American medical system.  Between my undiagnosed condition and James' genetic heart condition, it felt like we both just weren't getting the timely help we needed from our Canadian healthcare system - although it is very nice to have universal health care - it is a slow and cumbersome system.

    James was diagnosed with Hypertrophic Cardiomyopathy at the age of 19.  It runs in his family and there have been numerous deaths among his extended family from it.  It is an ever present thorn in his flesh but he has done an amazing job of largely ignoring it and not letting it ruin his life.  He is on daily, strong heart medication and has had an implanted defibrillator/pacemaker since 2006.  

    In the last few years, however, his heart has begun giving him more trouble.  It started going into a rhythm called atrial fibrillation occasionally.  Basically, atrial fibrillation (A.Fib.) means the top part of his heart is not contracting properly and just kind of quivers.  So his heart is not pushing out blood as efficiently as it should and also there is an increased risk for a clot to form in the heart which puts him at an increased risk for a stroke or heart attack.  So this makes him have less endurance and he gets fatigued much more easily.

    By October 2019 his heart had gone into almost constant A. Fib. and he was feeling quite poorly.  This was 2 months before my symptoms really showed up.  I still think the stress of his health may have set off the activation of my disease.  It was really hard to watch him struggle and we had a hard time talking about it.  Both of us wanted so badly for him to be healthy and strong.

    We switched cardiologists in the hopes of getting more answers and the day I was told I had pneumonia he had also gotten a call from his new cardiologist, Dr. M., saying his A. Fib. would probably just have to become a part of his life.  There was nothing more medically to be done about it.

    James is a farmer - he is a big, strong man who spends most of his time outdoors.  He prefers to work with his hands and hates any kind of office work.  Being told to consider other career options was hard to hear.  So, in the midst of my ongoing illness, James and I were both trying to come to terms with the decline in his heart condition and wondered what it meant for our future.

    The thought of going to South Carolina to see top notch cardiologists and rheumatologists gave us some hope that there might be more answers and treatments to try.  We felt humbled by the generosity of James and April's offer to help us in this way.

Another Setback

     The next day was a Friday, Jan. 24/20.  James, being the tough guy who can't sit still person that he is headed back to the farmhouse to keep working on renovations as best he could with his gimpy hand.  I dragged myself to work my Friday 1/2 day at the office.  I was feeling very tired and by the time I got home it was all I could do to fall into bed for the rest of the day.  I felt so frustrated.

    Around 5:00 pm I got a phone call from my doctor, Dr. A.  She got right to the point.  "You have pneumonia," She told me.

    "What?", I said, "That can't be".

    She told me the chest Xray had showed a spot in the upper lobe of my right lung and she felt it was pneumonia.  I questioned her a bit more because in most of my experience as a nurse, pneumonia would typically show up in the bases of the lungs.  She admitted it was a bit strange.  My heart was sinking fast as the tendrils of fear started to creep into my mind.  Could this be a simple pneumonia?  Or was this another sign pointing to a sinister underlying disease?  The word cancer had certainly been on my mind and anything unexplained like this "spot" in my lungs made me wonder - maybe all my symptoms were actually cancer?  How long did I have left to live?  Was this the beginning of the end?

    My thoughts were tumbling around in my head.  Meanwhile, my dear Auntie Jan dropped by to bring us some supper.  Bless her soul.  She asked me how I was doing.  I tried to sound positive - I hadn't even had a chance to really tell James about the phone call yet.

    I was so grateful for all the kindness shown to us by our church family, our family, and our friends and now with this diagnosis of pneumonia the meals started coming again.  I felt so overwhelmed and grateful by the outpouring of support.  I tried to be brave and positive.

    I had to take more time off of work and I felt so bad trying to explain everything to my manager and colleagues again.  It sounded unreal.  Like, how could so many things be going wrong one thing after the other?  I was grateful for their graciousness to me.

    Thankfully, after a round of strong oral antibiotics the pneumonia apparently cleared up and I told myself I felt a bit better.  It was kind of hard to tell.  I still had joint and muscle pain, fatigue, and other weird symptoms like my hands clamping up and not working properly.  But I felt a little less run-down and a little more energy - or so I told myself.  I decided I just had to go back to work!  Things would get better if I could just get back to some kind of normal routine.  So, I told my manager that I would be back to work on February 10.

January 23

 Back to my story-

    January 23 dawned and we woke up and got ready for the day feeling groggy and disoriented.  With some coffee in our systems we headed out and met my mom. Even though James' thumb surgery was in the Health Sciences complex where our hotel was, I was in no shape to walk that far and she dropped us off at the front doors of the Rehab building.  Interestingly, it was the same building where the Rheumatology Clinic is as well as the Infusion Clinic.  Those are two places I have now become quite familiar with.  But we went up to the 5th floor where the outpatient Plastic Surgery is located.  

    We were directed to a waiting room where we joined a few other people in varying states of injury.  James and I pulled out our phones and scrolled through the news headlines.  As I recall, at that time the headlines were about a young doctor in China who had been sounding the alarm about the Coronavirus in China and who had been silenced by the government but was now fighting for his life in ICU.  Or maybe the headline was that he had now passed away.  'How bad was this coronovirus?'  I wondered. It sounded pretty scary and so mysterious.  Would it be contained?  Was this all being overblown in the media?  Or would it reach Canada and become a reality for us too?

    Soon James was called in and I went with him to his little area/chair where they would hopefully fix his thumb.  Everything took a little too long though and I had to leave to make it to my appointment in Arborg. I felt bad leaving him alone to face the pain.

    My mom picked me up at the front doors again and off we drove to Arborg - just over an hour's drive north of Winnipeg.  James did fine with his thumb and his dad picked him up an hour or so later.  I would get to be his nurse who did his dressing changes for the next week or two.  Thankfully, his thumb was salvaged although he lost a bit of bone and doesn't really have feeling in the tip of that thumb anymore.

    My appointment with my family doctor, Dr. A., was kind of weird.  I went into that appointment feeling like I kind of knew my diagnosis already - I had been told by Dr. K earlier that I probably had SLE - or Lupus- so I had begun processing this already.  All I really wanted from Dr. A was a referral to a rheumatologist so I could get on with the official diagnosis, treatment plan, education, etc. and I could go back to health and living my life.  I even had the name of the rheumatologist I wanted to be referred to - as I'd done my due diligence on rateyourmd.com.  I think maybe I have some control issues...

    My mom had come into the appointment with me.  She was more concerned with the fact that I was obviously not functioning well - barely walking, pale, fatigued, etc.  I think she would have liked my doctor to admit me into the hospital that day.  I was more in denial.

    Dr. A agreed to the referral although she admitted she was not very familiar with autoimmune diseases and didn't even mention Lupus to me.  I was a little confused.  She also listened to my chest and her brow furrowed.  She sent me for a chest Xray and more bloodwork.  I felt a bit impatient - that wasn't why I was there - but whatever...off I went to the lab and Xray room where I had spent much time in and out of back when I worked as a nurse at the Arborg Hospital.  Xray rooms always feel so cold.  They're never a comforting place to be - especially when you're already feeling sick.  "Breath in, hold it - Okay".  "Turn to the side - put your hands up on the bars". "Breath in, hold it, don't move - okay".  Done.

    After my appointment, I had another appointment back at our farmhouse with Adrian, the guy from the Home Hardware store that we were ordering our new kitchen cabinets from.  He was doing an onsite visit with myself and the electrician to figure out some of the final details.

    It was 1:00 in the afternoon - I was exhausted - I had been through so much in the last 24 hours never mind the weeks leading up to it.  But there I was, in the middle of our renovation project, deep into talks about electrical outlets, lighting placement, feet and inches of cabinets with these two men.  It just felt kind of comical to me.  I don't think I even tried to explain to them what was all happening with us medically - it just felt too absurd.

    By the way, in the end, my kitchen turned out beautifully!  More on the renovation story to come as it all kept happening along with our medical woes.  The level of how much I cared about it all became lesser and lesser of a priority - but decisions kept having to be made and eventually it would all be completed.

Happy Birthday to Me

    Today as I write this - it is my 42nd birthday.  I'll take a little break from my story to talk about that.  Birthdays aren't such a big deal as we get older but they do mean something.  I had just turned 40 when my symptoms first showed up.  My plans for all that I would do and be after turning 40 quickly took a back seat as I began to walk a very different road than I had imagined instead.  One where I could no longer walk very well, couldn't write, couldn't play the piano, couldn't sing, couldn't work.  I have struggled long and hard the last year and a half over what it really is that makes a person worth something.  I long to feel useful - to have a clear purpose.

    But maybe those thoughts are for another post.  For now, I will enjoy my birthday - celebrating the fact that I am here, that I am present with my family and also that I am feeling relatively well at this time.  I want to be grateful for all the blessings God has showered me with.  There is so much to be thankful for.

    The words of a song sung by Steve Bell have been especially meaningful to me - if you get a chance to listen to it - it's such a good song.  It's called 'Here By the Water'.  Steve Bell is a well known Christian singer-songwriter from my home province of Manitoba. 

Here by the Water
Music and lyrics by Jim Croegaert
copyright 1986 Rough Stones Music

Soft field of clover
Moon shining over the valley
Joining the song of the river
To the great giver of the great good
As it enfolds me
Somehow it holds me together
I realize I've been singing
Still it comes ringing
Clearer than clear

And here by the water
I'll build an altar to praise Him
Out of the stones that I've found here
I'll set them down here
Rough as they are
Knowing You can make them holy
Knowing You can make them holy
Knowing You can make them holy

I think how a yearning
Kept on returning to move me
Down roads I'd never have chosen 
Half the time frozen
Too numb to feel
I know it was stormy
I hope it was for me a learning
Blood on the road wasn't mine though
Someone that I know
Has walked here before

An Accident

    Over that next weekend, and into the following week, January 18-21, 2020,  some of the rest of the family also got sick with the flu.  I took Autumn to a doctor in Arborg on Tuesday, Jan. 21 because she is the one who gets the sickest from our kids.  She had to go for a urine and blood test and her and I ended up having a big spat over it in the lab bathroom as I tried to convince her to give a a urine test.  The joys of pre-teens!  The stress we had been living under was definitely showing up in our family life.

    The next day, I forced myself to go back to work even though I felt very weak and still had lots of joint and muscle pain.  I loaded up on Aleve and braced myself for a day of appointments.  My colleague Denise, a Registered Dietitian, and I were heading out to a neighbouring First Nations Reserve to do outreach appointments at the Health Centre there.  I felt bad leaving my colleagues covering for me so much and needing to reschedule appointments with clients who really needed support.  So I felt I needed to push myself to get back to work.

    However, I probably should have just stayed home that day as a couple of hours into my day I got an urgent phone call from James saying he had had an accident with a saw while working on our house renovations.  He had nearly cut off the tip of his thumb!  I could hear he was in shock.  He asked me which hospital to go to.  My brain was numb.  How could I think about this clearly when I was barely hanging on physically myself and trying to put on a brave face while meeting my clients?  Maybe it wasn't that bad?  Maybe I could finish my day with my clients and then go to the hospital?  My brain raced.  I told him to get a ride to a hospital and then messaged him to go to the Percy E. Moore hospital which was the same building my office was at.  Meanwhile I saw my last client of the morning - I don't think she got the best care from me that day...

    I felt like a robot- Denise drove me back to my office and offered to cancel my afternoon appointments for me.  I felt bad making her cover for me again.  How could we be having this many health crises' at once?  It was getting to be too much.

    I went to find James.  He was pale and in lots of pain.  His thumb didn't look too good.  The doctor was on the phone with Plastic Surgery in Winnipeg and we prepared ourselves to go into Winnipeg - a 2 hour drive from the hospital.  I contacted our families and tried to arrange childcare.  I felt feverish - achy and chilled- how could I look after James when I still felt so bad myself?

    My mom offered to drive us and I gratefully accepted.  The doctor stitched James' thumb together as best he could and gave James morphine and off we went to Winnipeg to the Health Sciences Centre ER.  Rural hospitals don't get the best service from the city specialists so in the end the plan was that we go to the ER in Wpg and they would consult further with Plastics.

    By the time we got to the ER, James and I were both in bad shape.  He was in pain and shock and I could barely walk or move.  My joint and muscle pain was terrible - my meds had long worn off and the stress of the day had taken a toll on me.  We sat there in the ER for about 4 hours.  My dad came into Wpg as well for support and my parents faithfully sat there with us.  We finally sent them out to have some supper as it was a very long time to sit and wait on hard waiting room chairs.  The waiting room was full of sick people - moaning and groaning and throwing up.  Not the most fun way to spend an evening.

    We finally got to see a doctor around midnight and he had a look at the thumb.  He decided there was enough blood flow, etc. that surgery could wait till morning.  Surgery was scheduled for 8:00 the next morning.

    My mom, being the awesome crisis support person that she is, booked 2 rooms at the attached Canad Inns hotel - 1 room for her and 1 room for us.  We crashed into bed at 1 AM to try and get some rest.  I had my long awaited appointment with my family doctor, Dr. A, the next morning in Arborg at 10:40 and I couldn't miss that appointment.  My mom was going to drive me back there and James' dad was going to come into Winnipeg to pick up James after his surgery.

    What a day.  It was all feeling quite overwhelming.

Trip to Fort Frances

     On Jan. 15/20 I stayed home from work due to the flu I had caught.  Huddled under my blanket, I scrolled through the news on my phone.  I was alarmed to read a few news articles about people in the province and in Canada who were dying of the flu this winter.  Young, healthy people who just suddenly became very ill and couldn't pull through.  This sounded alarming to me and given my current state of health - just a little bit extra scary to process.  I mentioned this to James and told him it seemed "pretty scary".

    The next day, early in the morning, we left for Emo/Fort Frances, ON for Madalyn Grace's memorial service.  We took our daughters, Autumn and Elie, along and also gave a ride to Katrina, our niece.  Most of James' family was also coming and some of us travelled together.  I loaded up on Tylenol and Advil and we prepared our hearts for the grief ahead.

    It was very difficult to watch Mike and Jo grieving the loss of their first child.  Words really can't describe it.  It has scarred them forever and as a family, we felt helpless to stand by and watch but we were glad we could be there to stand with them at least.  They buried Madalyn in a local cemetery and we had a short service for her.  Our family and Mike's family spent the evening together at Mike's parents.  I was feeling so sick and could barely walk but I tried to hide it.

    We spent the night at a hotel in Fort Frances.  I enjoyed soaking my aching bones and muscles in the hot tub and the girls had fun swimming in the pool.  We went home the next day and got home by evening.  I was still fighting a fever but thinking I was feeling a little better.  The roads had been terribly icy with bad visibility a lot of the way.  We were grateful everyone from James' family made it safely home.