I haven’t written in more than a year because I wasn’t sure where to start.  Last December, on his 35th birthday, my superman husband Ryan woke in the night with a pain radiating from his shoulders down his arms that took his breath away.  The pain was so sudden and severe that we visited the ER three different times in the first day with no answers.  We spent the next month in and out hospitals meeting with neurologists and specialists. In that time, his shoulders literally melted away as his muscles atrophied rapidly and he experienced partial paralysis in both arms, particularly the left.

Every kind of painkiller and drug was thrown at him but nothing helped the pain, which was particularly excruciating at night and kept him from being able to sleep for weeks.  Our birthday trip to Savannah was cancelled.  All holiday plans were cancelled.  It was so terrifying that I haven’t been able to write about it but Skirt Magazine recently interviewed Ryan and told his story beautifully.

Ryan was eventually diagnosed with a rare autoimmune disorder called Parsonage Turner Sydrome. While it’s no picnic, we were thrilled to receive a diagnosis that he was going to live, and that sense of gratefulness has changed everything.  I’m happy to report that a year later, he is almost fully recovered.  His left hand is still stubbornly in paralysis, but you would never know it unless you asked.  All of our travels halted for the better part of the year (Ryan was in rehab and out of work for over 4 months), but we’re getting back on track (posts coming soon).

Although it was the most difficult time in our lives to date, we are stronger because of it.  We learned about overcoming fear, uncertainty, illness, pain, and how to find light in darkness. We learned that we have an amazing tribe of friends and family who were there with food or wine or rides to therapy or kind words of support. We learned about resilience and determination.  We are more grateful than ever for the many blessings in our lives.

And more determined than ever to keep seeking adventure.

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Tips: If you’re a caretaker, keep records of EVERYTHING.  Keep a log of every pill ingested with times and dosages, every symptom change, sleep patterns – everything.  This will help doctors have a clearer picture of the illness and help you keep track to make sure you’re not overdosing on any particular drug.  You will be tired and frustrated and you may not remember everything.  Also, take notes of every doctor you speak to with dates and times.  Keep copies of every bill you receive and open ALL your mail.  The insurance companies will try to trip you up and they will do anything not to pay for whatever they can get away with.  They initially refused to cover Ryan’s MRIs and once our doctor fought back, they caved, but then continued to send us follow up questionnaires in the mail that stated our claim could be thrown out if not returned and completed on time. Also, never pay the first hospital bill — let them continue to bill your insurance and it may go down.  You can also pay your bills in small installments rather than all at once.  So long as you continue to chip away at it, you’re fine.

Self care: Don’t forget to take care of yourself.  You cannot be a strong support system for your loved one if you don’t take care of yourself.  I found that every moment I was away from Ryan filled me with anxiety that bordered on panic.  I was physically sick with worry that he was suffering alone while I was at work, getting groceries, etc.  CBD oil helped me tremendously.  I can’t say that I stuck to a regular work out routine during these months, but we did go for walks on the beach as often as possible.  Sunshine and exercise are life changing when you’ve been stuck inside and sick with worry.  I threw myself into cooking wholesome meals and researching homeopathic remedies.  And finally, don’t be afraid to talk to someone- be it a therapist, friends or family.

Never give up hope!  Ryan went surfing one year after his diagnosis.  If someone could have just whispered in our ears that in a year, he’d be back (almost) to normal, doing the things he loved, it would have restored our hope so much.  Unfortunately you don’t have a crystal ball, but you do have hope.  Worrying about things you cannot change only makes you suffer twice.