Sunday, October 9, 2016

Happy (?) Anniversary: A year with POTS

This week marks the one-year anniversary of being crippled by POTS (Postural Orthostatic Tachycardia Syndrome).  Although I’ve suffered from health problems for much of my life, everything changed dramatically last year after I passed out in Disneyland and never fully recovered.

The day before my life changed!

In most connotations, the term “anniversary” is thought of as a happy occasion.  Wedding dates, years at work, or even time dedicated to a cause are all reasons to celebrate.  Even the anniversary of my mother’s death, which was an extremely heartbreaking occasion, we have used as an opportunity to celebrate and remember my sweet mom.  We order a cake from her favorite bakery, look at pictures of her, and reminisce about fond memories.  Although I miss her so much, it’s been renewing to use that anniversary to celebrate her life, rather than mourn her death.

As my one-year anniversary with POTS has been approaching, I have had a sense of increased anxiety and dread.  The meaning of chronic illness has set in more deeply.  I have moved through the stages of grief, once again, as the profound realization of the long-term loss of my life as was (and as planned for the future) has settled on me.  

I have thought a lot about the last year that I have spent in bed.  This is not an accomplishment I wish to celebrate.  However, I cannot look back over the past year without also recognizing the tender mercies that have been shown to me and my family.  And so, in this anniversary week, I choose to push down the waves of despair and, instead, focus on and celebrate all the good that has come into my life or been accentuated this past year. 

1.      God has a plan for me.  This concept has been made known to me multiple times in my life and has become evident again this year.  Ten years ago we lived in another state, hundreds of miles away from any of our family.  We loved it there, yet after a few years, and with no forethought of leaving, I had a distinct prompting that we needed to move closer to home.  Although I was not at all happy about the idea, we followed the impression and moved our small family back to Utah. 

Over the past decade I have seen numerous examples of why we needed to be here—most of which have included being close to family and meeting people that have influenced our lives for the better.  Additionally, this move and associated events have put us in a situation that has better prepared us for this year’s changes.  

Just months after our big move, my husband admitted that he was not happy with his new job.  I was also not happy.  Earlier that same year I had started my own curriculum company, but was working at it part time as the kids were napping or asleep at night.  It was gaining a lot of traction, and I just didn’t have the time I needed to commit to work and to the kids.  However, we were both dedicated to the fact that we didn’t want to send our kids to daycare if we could help it.  With a lot of thought and prayer, we took a huge leap of faith.  Even though my business was not yet in a position to support us financially at that time, Kelly quit his job and made a career change to become a realtor so that he had more flexibility to be home with the kids as needed.  I started working full time, expanded my business, and even hired on others to help.

It was a struggle, and there were many times that we wondered what in the world we were doing.  Over the years I have often questioned my decision to give up being a full time, stay-at-home mom.  However, I have always felt that we were on the path we needed to be. 

This past year has been incredibly hard figuring out my priorities and how to continue to juggle spending the time with my kids and managing my business with my limited time, energy, and abilities.  In addition to having some great people pick up the slack for me at work, I have been blessed to be able to work a bit from bed.  The bigger miracle, however, is that Kelly is home to help with the kids.  While I can spend a few hours a day on my computer, I am certainly not able drive my kids to school and activities, make their meals, or do a lot of the day to day care they require. 

What a tender mercy, and how obvious the hand of the Lord in our lives!  He knew what our predicament would be at this time and prompted us to make the changes years ago that would make life sustainable today.  I can’t imagine what we would have done this last year if Kelly wasn’t available to take care of me and the kids!  I’m grateful for the constant reminder that the Lord has a plan for us (even if we don’t always know what it is!).

Chillin' in bed with my cute kiddo!


2.      I have AMAZING people in my life.  I could write pages and pages about this and provide so many specific examples of the HUNDREDS of kindnesses that have been shown to us by others.  Referring back to blessing #1, we have felt guided to each home and neighborhood we have lived in.  It has become quite obvious to me all the amazing people we have met and the associations and friendships we have made.  I have been in awe over and over again by the out-pouring of love and support from my sweet neighbors, friends, and family.  Being sick in bed is a lonely place to be.  Yet I can’t believe how many people have stepped in to bring meals, cards, treats, flowers, words of encouragement, etc, etc, etc.  It’s amazing how even a text of from a friend just checking in can buoy my spirits.  Although I have always striven to befriend and serve others, my small contributions seem unworthy of what we have received in return.  I know this is not a typical scenario for many people in similar conditions, and I am beyond grateful for the good hearts of so many incredible people that I am lucky enough to call friends!

3.      Swimming.  As we met with my doctor repeatedly last winter, he reiterated the need to exercise and the benefits of swimming (horizontal positioning with lessened effects of my enemy, gravity).  At the time, however, there was no way I could make it to a swimming pool, actually swim, and make it home again—it was just out of the question.  So we started discussing putting in our own pool.  Despite my initial hesitancies, having a pool has been a source of joy in my life.  Although I’m not able to swim with my kids often (due to the commotion and my lack of robust processing skills), I’m grateful that it has brought fun family time to our house all summer, especially where I could not get out to take my kids on exciting summer adventures.



The pool has been great for me physically.  When I first started swimming I would swim a lap, float for a few minutes, swim a lap, float.  Now, on good days, I can swim for 30 minutes straight (not fast or hard, by any means, but still a great accomplishment).  Any amount of muscle tone is great to help increase my circulation, and I have noticed the positive effects.   

Additionally, the pool has brought as much emotional strength as physical.  My happy place used to be riding my bike around a nearby lake, getting the exercise endorphins, and taking in the vistas of the reflective water with a gorgeous mountain backdrop.  It was hard to give that up.  But I now have a new happy place!  Floating in our salt water pool, gazing up at the beautiful evening or night sky with no distractions has truly brought a sense of zen into my life.  Although I’m currently going through withdrawals now that we have closed the pool up for the winter, this has been a huge blessing in my life.

4.      Renewed Hobbies.  I have always been a go-getter and a person that needs to feel productive.  One of the hardest things about my illness has been my inability to get up and do things.  However, being stuck in bed has also brought about new (or renewed) opportunities.  I have picked up some old hobbies that I haven’t had time to focus on for a while, such as writing (for myself, not just for work), crocheting, and listening to audiobooks.  I shouldn’t mention the hours I also spend on less productive phone apps such as Netflix, Facebook, or Candy Crush, but I am, nonetheless, grateful for these forms of mindless entertainment and distraction when my body and brain aren’t capable of much else.  Additionally, Facebook at least gives me a glimpse into the outside world and keeps me in touch with all the amazing people I never get to see anymore.  So while I’d rather be out of bed doing other things, I’m grateful for these hobbies and distractions that have kept me sane this past year.

5.      My husband is incredible!  I can’t create a list of blessings without including my amazing husband.  Although he was previously used to doing more home-based tasks than a lot of men I know, he has had to take on so much more the last year—including all of child chauffeuring, cooking, housework, laundry, bedtime routines, and much, much more.  Not only is he taking care of the house and kids, but he’s had the extra burden of caring for me as well. 

Mr. Amazing putting kids to bed.


I think back to what a na├»ve college student I was when we got engaged and married.  I knew Kelly was a good man and that I loved him, but I had no idea how incredible he really was.  Once again, the Lord was watching out for me then and now!  I’m grateful for my extraordinary husband and his tireless work to help me and our family without complaint.


Obviously my life is not perfect, we don’t often have all our ducks in a row, and there’s a lot of things I still regret missing out on.  However, despite the dread I have been feeling about the anniversary of my illness, there is still a lot about my life that I can celebrate!  And despite the long length of this post, this is just a small part of a much larger list of blessings.  Just writing this all down has, indeed, filled my heart and changed my views as I’ve taken a closer look at everything that is going RIGHT in my imperfect life.  I have an awful lot to be thankful for!  Happy Anniversary!