Making Your Emergency Medical Alert Document

   

 If you have an illness or disability that could affect emergency medical care, it's extremely important that you have a document with emergency instructions with you at all times.  (This is in addition to a concise medical history, a clearly visible medical ID bracelet/necklace, and any medications or supplies you may need.) 

    What those emergency instructions look like will depend on your situation, but there are some things that are universally relevant:

    1. Make sure the emergency instructions are easily accessible.  If you are having an emergency, you want to be able to get to them quickly.  If you are incapacitated, you also want someone else, perhaps even a stranger, to know to look for them.  I keep my emergency instructions in my purse in this highly visible pouch (mine is bright red) with my medical history and emergency supplies.  I also have these keychains on my purse and a seat belt sleeve if I'm traveling by car.  I have a second kit for my caregiver to carry with them as a backup.  

    2. Include eye-catching font size and/or a relevant graphic that signifies the document is for emergencies. 

    3. Include your name and emergency contacts.

    4. Include your relevant conditions, what an medical emergency may look like, what precautions you may have, and care instructions.

    5. If your emergency care includes something like giving injections or placing you in the recovery position, you can include a QR code that leads to a video tutorial.  Additionally, print out instructions and keep them with your emergency medical supplies.  

    6. I always find it polite to add a little thank you to the person(s) who are saving your life.  :) 

Here is a template that you can use to create your own emergency medical document.  You can copy and paste this into whatever word processing program you use and then personalize it.  Here's a preview:

If you are wondering what conditions or situations may warrant carrying around a document like this, here is a (non-exhaustive) list with some ideas:

-Diabetes 

-Autism

-Adrenal Insufficiency (Addisons)

-Asthma

-PTSD

-Anxiety Disorders

-Allergies

-Epilepsy

-Narcolepsy

-Dysautonomia

-Dementia

-Hyper/hypo Periodic Paralysis

-Pregnancy (especially if high risk)

-Many Psychiatric Disorders 

-Any condition with range of motion precautions or restrictions

-Any condition that restricts breathing 

-Any condition with a medication pump

-Any condition that requires life sustaining medication

-Anyone with MRI precautions (aneurysm clip, implanted devices, etc.)

-Any condition that required intubation precautions (Ehlers-Danlos Syndrome, Down Syndrome, Hx cervical spinal fusion)

Need help creating a medical history document to go with your emergency instructions?  Check out this post!

        

All of October in One Day

    I love October.  I love nearly everything about it - the leaves changing colors, the briskness in the air (that we in California are still waiting on, by the way), the goofy Halloween directions that sprout up in my neighborhood, and the spooky playlist that I’ve spend the last several Octobers curating.  I love how there’s squash and sweet potato in the grocery stores and everything is pumpkin spice this or apple flavored that.  I love sipping tea, and running outside to bask in the season’s first rain, and settling down to watch Halloween movies that I’ve loved since childhood.  October is my holiday season. 

And today I tried to fit as much of it as I could into one single day.

My health is precarious right now, and especially lately, it’s been really limiting what I can do.  I’ve spend much of the last several weeks in bed, and though I feel ok today, I have no idea what tomorrow will bring.  So I do what many with unpredictable chronic illnesses do, and pack as much fun and meaning into each good moment.  I have to balance the relief, joy, and enthusiasm I feel at finally being able to reengage in life with the measured and restricted mindset I need to not overdo things.  I don’t want to pay for the things I do on a “good” day for the next several weeks.  Not unless it’s really worth it.  

So what does October look like to me?  What does it look like when I celebrate my favorite time of year as much as my health allows?  Well, it probably only seems exciting if you’ve been laying in bed for a few weeks.  But for me, today was an adventure.   

The first step toward autumn bliss was a field trip for a latte.  Somehow I had gone this far in my life without trying the famous pumpkin spice version, so getting one was my mission.  If I’m fitting a whole season into one day, I don’t have time for caramel, or cookie flavor, or anything else that doesn’t scream FALL.  

It was Mom's first day out since her surgery.  Double celebration!

    Even though I didn’t spend more than twenty-seconds in the shop and I was geared up with a mask and hand sanitizer, it was nice to do something that felt so normal.  Don’t mind me.  Just sitting in the car sipping a latte like a regular person on this lovely 90 degree fall day.  (Sometimes it takes a little imagination for the proper mood to be set.)

After a rest, it was time to dust off the Halloween decorations and attack the front yard with fake spider webs and paper mache props.  To keep me pushing through the pain and fatigue, and to make it even more October-ish, I had my Halloween playlist blasting through my headphones.  What must my neighbors have thought of the girl manically stretching fake spider webs over every inch of the front yard while singing Rihanna and Eminem’s “The Monster” or bobbing my head to the beat of the Halloween soundtrack?  I don’t know, because I was too busy Octobering to notice.

Remember: Done is sometimes better than good.

Somehow, after a few hours recovering from my whirlwind decorating, I was up for one of my very favorite things to do at this time of year - grocery shopping at Trader Joe's.  (Yep, I sure do know how to party.)  Now Trader Joe's is a sickly person’s dream on any old day.  It’s one place I can find healthy and affordable meals that don’t require more effort than sticking them in the microwave for a few minutes.  But in October - oh it’s magical!  While waiting in line to get in, I inspected every warty squash or gourd, finally settling on a few that I felt had excellent character (or carving potential.)  Yes, receiving trick-or-treaters may be canceled this year in my high risk household, but I still plan to go all out in my carving menagerie anyway.  

I'll take all of them, please.

    And once inside…what a display!  My poor brain was torn between taking in all the autumn themed treats and dishes and remembering to stay 6ft away from other humans.  I darted around the store, finding seasonal treasures and dumping them into my family’s cart like it was a strange, post apocalyptic version of Supermarket Sweep.  Though I eyed the beautiful sweet potato and squash produce, in the end, I decided on the precut kind.  After all, this is my one good day.  I can’t guarantee I’ll be up to preparing them from scratch tomorrow.

As the day came to a close, I spent an extra second taking in the night air, finally cool enough that I it felt a little more like October than mid-July.  I eyed my decorations with satisfaction.  I disinfected and admired my spoils from the store.   It was a good day.

My bounty.  (Not pictured - the 6 other bags of groceries.  Shopping with me is a nightmare.)

I’ll go to sleep tonight feeling both relieved and satisfied that, to at least some extent, I was able to engage in my favorite month of the year.  Whatever happens tomorrow, I had today and I filled it to the extent that I could.  That’s the chronic illness life.  We don’t get to decide what we are able to do or when we are able to do it, but we can decide to live it up as much as possible when we get these short reprieves.

   

Happy October everyone!  

 

The Importance of Having a Medical History

   As a complex chronically ill patient, and as a healthcare professional, I have learned that providing doctors (or therapists) with a well organized and concise medical history can be an absolute game changer.  Figuring out what to include in that medical history and how to organize that information can be challenging though.  

   I've had over a decade to fine tune how I organize medical information and I thought I should share my methods in case it helps anyone else.  

Everyone (yes even healthy people!) should have a one page medical history that they carry with them and bring to each appointment.  If you are a complex or chronically ill patient this may be one page front and back.  It should include:

1. -A heading that includes your name, contact information, and your date of birth.
2. -General information like your age, sex, gender, marital status (if any of that is relevant).
3. -Contact information for your doctors, pharmacy, and emergency contacts.
4. -Medication list including the name, dose, frequency, and reason for taking it.  
5. -List of your diagnoses including when you received the diagnosis and who from.
6. -List of any major surgeries, hospitalizations, accidents, etc.
7. -List of allergies/intolerances including medications, environmental, and food.

I created a free medical history template that you can use here.  You can copy and paste it into whatever you use for word processing and edit it to reflect your history.  Check out some of my comments where I give additional explanations or tips.  

The benefit of having a medical history is that health care workers can get a good overall picture of your case in a quick and accessible manner.  (And they will love you forever for making their job easier!)

Here is a preview of what my medical history template looks like:

Do you have any tips?  Let me know in the comments! 

                 

 

We'll Be Ok

***Disclaimer:  The following is geared towards those sheltering in place.  I understand this may not be relevant or helpful for people with a direct and personal experience with COVID-19.***

Your life has been upended.  The basic things that make up the foundation of your life have distorted beyond recognition.  You are falling through space with nothing to reach out and grab to stop your fall or even give you a sense of orientation. 

And even so, you'll be ok.

I know this because I've been there, I've lived this kind of life since I had my first stroke in the summer of 2007. 

When I first got sick, it was a terrifying and confusing time.  The causal assumptions I had made about my life and my world were put into question or shattered completely.  I found institutions, like healthcare, that I had previously believed to be infallible were failing me.  Even more frightening, my own body was failing me.  My young, strong, fit body became weak, uncoordinated, and fatigued in the literal blink of an eye.  And I knew it could get worse at any moment.  It was a fluid situation, changing moment to moment.  I had no idea when or even if I would regain a sense of normalcy.  Sometimes, the not knowing was the worst part of all of it.   

I also had so much of what made life interesting and fun taken away.  No more sports - sitting up was exercise enough.  No more reading - not until months of therapy restored some of that ability.  My artistic skill regressed and making art became merely an act of frustration.  My once booming social life was limited to short, exhausting visits from friends.   Visits that I often had to cancel last minute.  The very act of making plans started to give me anxiety as I never knew if they would materialize.    My ambitions for travel were laughable.  I lost most of my independence.  I faced countless new barriers in accessing education.  I vacillated between pining after my old life and stewing in boredom.

It was a very rough transition into a very different life. 


I share this with you because I think you may be able to relate, if not to specific details, then to the general sense of loss, fear, boredom, and uncertainty.  The fact that people the world over are experiencing this right now breaks my heart.  I see the anxiety on my neighbors' faces as they talk about "the long haul" of this pandemic and the pain in the eyes of my friends as they struggle with isolation and dashed hopes.  I feel for them as I do for myself.  But I also know that we will be ok.

Here's the thing about humans, we have an immense capacity to adapt.  Transitions are hard, sometimes almost unbearably so, but in the end, we find a new normal and thrive under our new circumstances.  If we live in an uncertain world, then we become comfortable with uncertainty.  If we have things taken away from us we find new things to fill our time and our hearts.  We start to adapt our expectations to reflect our new reality and experience less disappointment as a result.  I've done this many times over the course of my unpredictable chronic illness.  I've seen countless clients do the same as they face major life challenges and changes.  I see the evidence of the strength of the human spirit proven to me over and over again. 

So during this difficult transition, take time to be disappointed and scared and lonely.  Focus on the most pressing issues of acquiring what you need and practicing good hygiene and distancing to keep yourself and your neighbors safe.  And once these basic needs are met, once they become routine, take a breath and explore your new normal with an adventurous spirit.  Take note of what you still have.  See the opportunity in change.  Adjust your expectations.  Focus on what is important to you and figure out how to keep those things in your life with your new circumstances.  Think about how you will feel when we will come out the other side of this - perhaps a bit battered, a bit more warry, but stronger, smarter, and more prepared than we were before.     

Passing Time Part I - Media

In a productivity focused society, wasted time is almost seen as a sin.  But for people like me who have to spend lots of time resting and recovering, wasting time is a way of life.  Or as I like to call it, passing time.  Because if I do things right, there's not a lot of waste involved.  

With things shutting down and people shutting in due to COVID-19, lots of you will be joining me on the slow path.  Previously, I wrote a guide to staying healthy and happy while stuck at home, and today I'm going to share some of my favorite time passers with you.   

Anything that captures your interest and has you looking at the clock less often is fair game.  If you learn something new, expand your horizons, or create something, that's a bonus!

Here are some of my favorite things to do during downtime and associated recommendations.  

Books

Man do I love books.  Ever since I learned to read, I've been captivated by stories and have consumed them voraciously.  After an unfortunate disagreement between my brainstem and my cervical vertebrae, reading is much more difficult, so I find myself listening to audiobooks as much as I read a good old fashioned paperback.  (Audiobooks have the extra benefit of freeing up your eyes and hands to do other things like crafts, exercise, and housework.) 

My current favorites include:

-World War Z by Max Brooks isn't just disturbingly relevant.  It's also a masterpiece of science fiction and social commentary.   You'll love it even if you aren't usually into sci-fi or zombie stories.  It should be required reading/listening for humanity.  

-Tomorrow, When the War Began by John Marsden is a wonderfully acted, action-packed audiobook with several sequels.  The story follows a group of teenagers who become guerilla fighters once their home is invaded.   

-Infinite Jest by David Foster Wallace is my literary Everest.  I haven't actually finished the (very, VERY long) audiobook yet, but I've very much enjoyed it so far.  So far there is lots of tennis, but I'm told it gets apocalyptic eventually.      

-Leviathan Wakes by James S.A. Corey is the first of an epic sci-fi series that's had me captivated for countless hours.  The characters are interesting and the plot weaves through space-age politics and intrigue.  

-The Girl with the Dragon Tattoo by Stieg Larsson is another book that's the first of a gripping series that is good for hours of reading or listening.  I'm not normally into action/mysteries, but I love this series anyway.  

-The Assassin's Apprentice by Robin Hobb is quite possibly my favorite book I've ever read.  It's a beautiful introduction into my favorite fantasy world.  The writing and characters are absolutely fantastic.  You'll see quotes from Hobb pop up on my social media frequently.  

-Harry Potter by JK Rowling is an obvious pick.  No matter how many times I've read the books or listened to the audiobooks, there's nothing like passing the time by revisiting Hogwarts.  

I'll stop here with my absolute favorites.  Otherwise we'd be talking about books all day.  

Podcasts

I discovered podcasts as I spent a few months recovering from my first adrenal crisis.  And man was that discovery a game changer!  There is probably a podcast for every interest out there.  It's a great way to learn something new, stay informed, or be entertained for hours.  Seriously, some of these podcasts I'll rec took me literal months of listening to get caught up! 

Here's some of my favorites:

-The Black Tapes - This thrilling and spooky podcast was my introduction to the world of fiction podcasting.  Follow host Alex Reagan as she investigates a series of paranormal happenings that will leave you wanting to keep the lights on all night.  There are sadly only three seasons, but you can catch the equally good spinoff podcast Tanis.

-Code Switch - Gene Demby and Shereen Marisol Meraji host this NPR podcast which tackles issues having to do with minority races and cultures.  Code Switch is incredibly well produced and a great way to expand your mind while being thoroughly entertained.  Can't recommend it enough!  

-My Favorite Murder - Though I am not really a fan of true crime (too sad) and I was not initially excited about the premise of a comedy podcast about murder, I am 100% won over by hosts Karen Kilgariff and Georgia Hardstark.  They are two hilarious and endlessly compassionate women who I never get tired of listening to.  This is the chosen podcasts for my mom and I when we make the long commute to my doctors up north.  

-Serial - The podcast that started it all for me.  Sarah Koenig leads an incredibly well produced investigative journalism podcast.  Though the later seasons are merely fantastic, the first was so amazing it changed the landscape of podcasting.  

-Binge Mode - Each season, hosts Mallory Rubin and Jason Concepcion deep dive into a series beloved by nerds everywhere.  They analyse plots, themes, and characters in a way that would make any lit teacher proud, while making me laugh out loud with their quirky humor.  If you are into Game of Thrones (Season 1), Harry Potter (Season 2), or Star Wars (Season 3), you'll love this podcast.  

And a list of some of my other favorites...

Car Talk

Gilmore Guys

Hidden Brain

Someone Knows Something

Welcome to Nightvale

Limetown

The Bright Sessions

The Magnus Archives

I also highly recommend perusing through iTunes U for academic topics that spark your interest!   

(Computer/Tablet) Games

While I don't have the hand eye coordination or reflexes to be good at most serious video games, I have found several that I really enjoy.    

Minecraft will suck you in once you know the basics.  There are so many different ways to play the game and so much to explore and discover.  I originally tried out the mobile version so I could talk intelligently about it with my young clients.  Now, several years later, I'm still hooked.  To get the most out of the game, check out some of the how-to videos on youtube or the Minecraft Wiki.  

Stardew Valley is one of those games that will make time fly by.  You'll sit down to manage your little virtual farm, blink once or twice, and suddenly several hours have passed.  Fans of Harvest Moon will love this game!  (If you ever get stuck, the Stardew Valley Wiki is a great resource!)  And there's no in app purchases or ads to annoy you!

I've been a big fan of the Pokemon games since I was a little kid.  This past year, I had a blast revisiting some of the old gameboy games I found kicking around the house.  There are some excellent walkthroughs online for free if you get stuck anywhere.  Go catch 'em all!  

Then there's always classics like The Sims series, Spore, and Roller Coaster Tycoon.  

TV Shows

I actually don't watch that much TV lately and there are SO many great guides out there that I'm not going to do a full write up.   The one thing I have to say is that in addition to those binge worthy fiction shows, try to watch some travel and documentary shows too.  Maybe we can't travel right now, but we can live vicariously through those that have documented their journeys.  

And remember, it's ok to sneak a guilty pleasure into your watching schedule.  

Social Media, Websites, etc. 

If you are like me, you are glued to your favorite social media sites for the latest updates about COVID-19.  But if you get tired of all virus talk all the time, here are some other places I go to pass time.

I don't know what I would have done the past few years without Reddit.  That site sucks you in with a subreddit for any interest and constant new content.  My favorite subreddits are r/legaladvice, r/askreddit, r/crochet, r/dogs, r/humansbeingcute, r/japaneseameshows, r/medicine, r/travel, r/weather, and r/whatisthisthing.  Go to a new sub, sort by top --> all time and settle in for some good entertainment.

I also spend a lot of time on Pinterest (since I was a beta tester for the site!) getting ideas for fun projects or recipes.  

I like to window shop online, even though I rarely actually buy anything.  I like perusing Woot!, This is Why I'm Broke, and S@#^& You Can Afford.  I'm also addicted to reading guides and reviews of products on Jet Pens.

Then there's just a bunch of random stuff on the internet because people can be strange and awesome.  

Online Spirograph

List of scientific, "scientific," and fun personality tests you can take.

Design some 3d objects (for free!)

Cake Wrecks

Post Secret

I'd love to hear from you with your favorite time passers!  Comment below or send me an e-mail!  As I get more suggestions, I'll add some to the list.

Stay tuned for Part II of Passing Time where I discuss the hobies that keep me sane! 

Thanks for reading!  

"Maybe someday we will findThat it wasn't really wasted time."-The Eagles 

How to Thrive During a Quarantine - Advice from a Frequently Homebound Human

More and more people are finding their work, events, and travel canceled as the spread of COVID-19 reaches pandemic levels.  Even if these things are still going on, there are compelling arguments that the most pro-social thing you can do is stay home.  (Those of us at-risk people thank you for your cooperation!)  For many people, this means days, or even weeks spent stuck at home.  Such a quarantine probably seems like a scarier prospect than the virus itself!


For me, being stuck at home is just life as usual.  Though I've been enjoying better health lately, a large part of my life for the past several years has been lived within the walls of my home.  And here's what I've learned  - while not ideal, a homebound life can still be a good one!

So here's some advice on how to stay sane and maybe even have a bit of fun with this quarantine thing.

Keep Structure

One of the hardest parts of a life not marked by work/school days, social events, and outings is the lack of external structure.   If you are usually busy to the point of stress, a few days off from the daily grind will seem like a gift.  But as days turn to weeks, you'll find unstructured time has its own negative effects on mental health.  As humans we need to do things to stay happy and healthy.  (My whole career is based on this!)

The best way I've found to give life meaning and to stay engaged in the absence of external structure is to make and stick to a life structure that I design myself.

Here's what that looks like:

-I set an alarm everyday, even if I have no reason to wake up at a particular time.  I'm not going to torture myself with a 5AM wake up each day, but I'm not going to let myself sleep until 12 either.  Setting an alarm helps keep me on a good sleep schedule and prevents me sleeping the day away - something I would gladly do! 

-I have routines that I (mostly) stick to.  This isn't bootcamp, I'm not a stickler for rigid routines, but I do like using them as guides.  I feel best when I get ready in the morning, even if I'm not going anywhere.  I sleep best when I stick to my nightly routine of getting ready for bed and then listening to audiobooks and playing games on my ipad.  Time passes quickest when I mark it by taking care of my dog, exercising, sitting down to family meals, and spending part of each morning attending to business like checking e-mail and calling doctors or insurance companies.

-I have a slight addiction to lists, particularly to-do lists.  Each week I have a list of things I need to do which serves many purposes.  First, it helps my ADHD brain remember what needs doing.  If I try to juggle everything in my head, it's overwhelming and turns into a big mess.  Second, there's the abundance of joy and satisfaction when checking something off as done.  On days when I don't have external rewards for my efforts, those check marks are pretty exciting.  (Maybe I love lists a little too much?)  Finally, at the end of the day, week, or month, if I feel like all I've done is bum around the house, I can look back at my completed lists and see a record of my magnificent accomplishments.  So make some lists and tackle them with enthusiasm.

-I like to include other people in my structure.  Even for a veteran like me, it's hard to maintain structure all by myself.  If you live with others, you already have some structure built in based on the daily rhythms of life together.  You can take it a step further by planning fun activities together or by asking someone to help hold you accountable for getting things done.  For friends and family outside your household, go ahead and have that weekly coffee date!  Just make your own coffee at home and sip it while you video chat.

Stay Healthy

Even if I don't get the virus, being housebound will challenge my health.  It will be a little too easy to turn slothish and get the blues.  I have a plan though, and here's what it is...

-I'm going to make an effort to go outside everyday.  For now, there isn't a strict quarantine where I live, so I'll take advantage of that and go on walks around my neighborhood.  I'll also spend time in my yard doing regular outdoorsy stuff like gardening and some usually indoorsy stuff like writing or reading.  Getting outside will help reduce that trapped in a cage feeling one can get if one stays in the same place too long.

-In addition to getting outside when I can, I'll also bring the outside to me when I'm indoors.  I try to spend most of my time inside near an open window or in a sunny spot in the house.  That ambient sound of birds, wind, and even cars is very relaxing and helps me feel connected with the greater world.

-I'm going exercise.  I won't have a gym or pool or exercise class to go to, so I'll use what I do have.   If I'm lucky, I'll go on walks, but if not, I'll lay right down on my living room floor and fend the dog off as I do bridges, leg lifts, and other no-equipment-needed strengthening exercises.  I have a set of stairs for some cardio or plenty of free guided exercise videos online.  And if I'm really inspired, I could walk laps around my house as I listen to the same music or podcasts I'd usually listen to on a proper walk.  The point is to stay as active as possible!

-Being inside all day means being close to food.  I've learned that I should only eat when hungry, never when just bored, and when I do snack, I should stay mindful of what I eat.  I'd love to live on chocolate milk and cookies, but that's not going to keep me healthy.  To reduce temptation, I try to arrange things so that healthy food is more accessible than junk food.

-Staying busy and socially connected, as I mentioned above, will also help me beat the cooped up blues.

Pass the Time

Even with all that work keeping structure and staying healthy, there will probably be more free time than I know what to do with.  It would be excruciating to watch the time tick by if I had to make each minute count in the way we often have to in normal life.

So, just this once, embrace the time sinks - the games that hypnotize us, the websites that suck us in, the binge-worthy media that can keep us on the sofa for hours.  Spend part of each day being productive, but also spend part of it just messing around.  Find your balance between the two strategies that lets you go to sleep at night feeling good and looking forward to tomorrow.

(Stay tuned for a companion post where this world class time waster gives some suggestions.)


See the Opportunity

When I was in training to be an orientation leader in college, we had a great curriculum that, among other things, taught us to "Choose Our Attitude."  So how am I going to choose to see this quarantine?

It will be easy to feel trapped, frustrated, isolated....and on and on.  And I probably will feel that way sometimes.  But most of the time I'll try to accept the situation and make the best of of it.  Just like I've done during countless homebound days in the past.

It's not unemployment and boredom and isolation...it's a temporary retirement.  It's a time to work on hobbies, to learn to do that thing I never have time for, to make the time for keeping in touch with my friends.

This isn't just a unique situation.  It's a unique opportunity.  And if all else fails, it's temporary.

So hunker down and try to enjoy this temporary retirement.   I've done it for years and you can do it too!