A Crafty Succulent Gift

Scrolling through Instagram (you can follow the adventures of my corgis there @threegratefulcorgis) I stumbled upon this gorgeous photo of succulent wreaths from fairyblooms and it got me thinking.

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I’m a fairly crafty person and I thought I could create a wreath similar to those beauties and make a nice Mother’s Day gift for my mother in law.  The past few autumns I have made something similar but with pumpkins and succulents so I had some confidence and experience going into the project.

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I headed to Michael’s to buy the grapevine wreath (with my 60% off coupon the wreath was less than $2.25) and then to the local garden center to pick out some succulents (which were much more costly than the wreath).  I’m fortunate to have my own diverse succulent garden for cuttings to fill in some of the wreath space but wanted to buy some larger specimens to use as a foundation.  After my shopping expedition I dragged out the dried moss leftover from the pumpkin project, my trusty glue gun and set to work.

As you can see from the pictures, the first thing I did was glue some moss to the wreath.  From my experience the grapevine wreaths aren’t generally symmetrical so I placed the moss in various places before settling on it’s final resting place.  I used the spray bottle to mist the moss a little, giving the plants a damp resting spot.

My next step was taking apart the succulents I purchased.  Most of the plants had more than one specimen in the container so I carefully tried to pry them apart and used the hose to rinse the dirt from the roots.  To make the most visually balanced project I started by hot gluing the larger succulents in various spots on the moss.

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I filled in with some of the smaller cuttings from my garden as well as smaller pieces that came apart when I was dismantling the potted succulents I purchased.

It was a fun puzzle to fill in every empty moss space with the small cuttings, creating an overall design balanced with size, texture and color. After everything was in place (and I ran out of hot glue sticks) I let the wreath dry flat for a couple of hours.

The next part of the project was a good learning experience for me.  With the pumpkin succulent project I have gravity working in my favor, not the case with the wreath.  Once the hot glue was thoroughly dried I hung the wreath on a hook and some of the succulents I thought were securely hot glued into place began to sag.  To solve this issue (and avoid having to drive out for more hot glue) I cut short strands of floral wire and looped them over the base or stem of the offending plants, secured them into the proper place and twisted the wire together out of sight at the back of the wreath.

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I think the finished product turned out pretty well, and most importantly my mother in law was very happy with her hand crafted gift.  With occasional spritzing of the moss (depending on the humidity level at your location) the wreath should last a couple of months.  I live near the beach (humid air), my mother in law in the desert (dry air) so she would need to wet the moss more often than I.  When the wreath begins to fade she can either just toss the whole thing or gently dismantle it and plant the succulents in well draining sandy soil.

I hope you enjoyed my little tutorial and that it inspires you in some way.  Crafting gifts for family and friends is such a thoughtful gesture.  I think this project turned out so well I may make one for myself!

Oh poop!

I came home today to 2 pieces of dog poop on the kitchen floor and it hit me as an appropriate title to this week’s post.  Now my 3 darling, and normally housebroken, corgis are superstars when it comes to “holding it”, they have, on a rare occasion, gone up to 12 hours without an accident. Not sure what happened this morning during the 5 hours I was away, but I was glad it was deposited onto the tile floor, easily picked and cleaned up, not a big deal.

It did strike me that this “gift” was a visual reminder of what’s happening in my life right now.  Three months ago I broke my left wrist after slipping on ice while on winter vacation in Colorado.  The result of the break was 8 weeks in 3 different casts and being unable to drive or work to name a few “highlights”.  Yesterday I had an appointment with my orthopedic surgeon, I hadn’t seen him in 5 weeks.  Since my last appointment I have started back to work, worked hard in physical therapy and diligently followed the suggested daily home exercises.  As a result of my hard work there is a significant improvement in my forward and backward wrist movement but poor to no progress in pronation and supination.  My lack of pronation means I can only type with my right hand and my normal use of the mouse with my left hand has caused me to develop tendonitis in my wrist and fingers.  I work part time at a desk job so not being able to fully utilize both my hands for computer use makes my regular work tasks painful and more time consuming.  After measuring and evaluating my movement the doctor ordered me to have a CT scan to see if he needs to go in and cut the bone to more properly align my wrist and alleviate the pronation and supination issue.  So, yes…after 3 months of healing, getting back to work and life in general there is a possibility I will need surgery and start this whole stupid process all over again – see what I mean about OH POOP?!?!  CT scan scheduled for next week, meeting with the doctor to review the results the following week…the saga continues…

(I’ve typed the word supination enough times I’m going to digress for a moment.  I have come to love the word supination (pronounced soupin-a-shun), it makes me think of a make believe nation where the residents only consume soup.  Don’t you think it’s a bit funny?)

What’s a girl to do when faced with a week of poop?  Well it’s quite natural for this girl, get outdoors and explore.  There is a nature trail that I’ve heard about and have been wanting to investigate so I loaded up the corgis and off we went.  A little exercise and time spent outside always refreshes and invigorates me, the poop that life served me was a little easier to handle after a few hours with the corgis exploring the Upper Newport Bay.

Here are some highlights of our expedition…

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Being a cloudy day I decided it was a good opportunity to check this place out as I knew there wasn’t any shade.  The lack of sunlight also helped make the pictures turn out well.

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Attempted to get the gang together for a picture by the mustard but the big guy was far too anxious to get underway to sit still.

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Some colorful wild brush and blooming cactus along the upper portion of the cliff.

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Even seeing civilization in the background didn’t take away from the pretty scenery

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There were so many snails attached to the stalks of this shrubbery.  I didn’t see any evidence of them anywhere else.  Who knew snails grew on trees?  Hahaha 🙂 😉

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We walked down into the lagoon and found this small creek providing a water source for the large trees which concealed it.  I had to convince the corgis it wasn’t an appropriate spot for swimming.

After walking down the trail into the outer edges of the bay the flora changed dramatically.

IMG_7971IMG_7969With a steady water source things down on the bay’s edge were much greener.  This plant looked like coral growing on land.

 

IMG_7964Looking from the bay back up toward the bluff the variety of plants was muted and quite pretty.

IMG_7966Couldn’t resist capturing the wild artichoke, I wonder how it survives the salt water.

IMG_7996IMG_7986Absolutely no idea what either of these 2 unique beauties are…any ideas?

IMG_7984The old girl considering if she can break away, swim over and catch that waterfowl.  Sorry girl, probably not even in your younger and more spry days.

IMG_7992Back up on top of the bluff and the big guy was impressed by this display of flowering cactus.

IMG_7981The gang was tired out enough when we were down inside the bay that they held still momentarily for a nice photo.

I hope you enjoyed this little journey around Newport Beach’s back bay as much as I did.  After getting out and exploring I have a healthier perspective on the events of the week.  Yes, there was some literal and figurative poop that landed in my life but spending time in nature brought me back to a feeling of balance.

The Grateful Patient on tour

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In a few short weeks the husband and I will be hitting the road for 6 concerts in 3 different states in 9 days and cover almost 2,000 miles.  It will be a marathon for sure but I can hardly wait.  Thanks to nugs.net I’ve already been listening to last summer’s shows and am so pumped to do it again!  Living with serious health conditions and chronic illness always makes these trips somewhat more complicated but I know with some planning and a bit of discipline I should be able to survive our tour dates alright.  I’ve never been one to shy away from an adventure because of my health issues.  We typically hit as many concert dates as we can possibly squeeze in each summer and lessons learned along the way continue to make the next tour more successful than the previous one.

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The boys view of us in Irvine, CA 7/26/16

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Alpine Valley, WI 7/10/16

Lesson #1  Early to bed early to rise makes a man healthy, wealthy and wise…unless your a rockstar then throw that completely out the window.  A difficult part of going on tour for me is staying up late, sometimes very late.  Just about the time my body is telling me it’s time to go to sleep, concerts are generally getting underway and when the house lights come up at the end of the show and we make our way back to our hotel it’s usually nearer to the time I wake up.  Getting plenty of rest is essential for my health and overall well being whether I’m on the road or at home.  This forced upending of my regular sleep schedule is tricky but I always travel with some essentials that help my body to recognize it’s time to go to, and stay, asleep making the transition easier.

  • Sleep mask – it makes even light filled room dark, signaling to my body and mind it’s time to rest even if the timing of the rest seems odd
  • Earplugs – blocking out the noises of unfamiliar surroundings helps quiet my mind
  • Pillow – yes like Linus and his security blanket, I travel with my own pillow.  To me  few things on tour can be more irritating than being unable to sleep because of an uncomfortable and unfamiliar pillow – not to mention the annoyance of waking up with a neck or head ache, I avoid those pitfalls by bringing my own.
  • Calm app – I love turning on this app as I’m getting ready for bed, you can select music, stories or nature sounds that can help quiet a busy mind still buzzing from the evening’s proceedings.

The comfort of having all of these familiar things along on our trip really help me to rest and recharge at the end of the day or grab a refreshing nap before heading out to the next show.

Lesson #2  Hang out with rockstars, don’t try and party like one.  Being on the diminutive size of things means I’m a lightweight…a really serious one. Tailgating and socializing with friends and fellow concert-goers is a big part of the fun of being on tour but trying to keep up with everyone else’s partying can get little ol’ me in trouble.  A beer…and I do mean ONE beer (yes I’m a very cheap date, but I do like expensive beer!) is all I can handle, after that I stick to my trusty Pellegrino or TAZO bottled green tea.  I know, I’m seriously crazy, but going on tour is a marathon, not a sprint and I can’t have a hangover stopping me in my tracks.  As a bonus to anyone coming along, I am happily and always the designated driver.

 

Lesson #3  Bring your own drugs.  No, I don’t mean THOSE kind of drugs!  Anyone who has been to a concert knows the distinctive haze of who knows what people are smoking floating in the air.  As an asthmatic, concerts and especially indoor concerts, can be a challenging scene.  It sounds super dorky but I always pack 2 inhalers in my purse for the show.  I’d much rather be a dork than not be able to breathe or get bronchitis!  Also before we leave on tour I ask my doctor to prescribe a Z-pack or similar antibiotics to take along just in case I feel a sinus infection or bronchitis coming on while away from home.  It’s much easier to head infections off at the pass rather than scrambling to find a doctor in an unfamiliar city or state and go through the routine of explaining my compromised immune system etc etc etc.

 

Lesson #4  Have fun, dance like nobody is watching and enjoy the adventure.  So, after reading through all of these things I’m sure I’m sounding kinda stuffy for a Deadhead going on summer tour.  Maybe I’m not as bananas as some of the other member of my tribe, but there are few things in life I enjoy more than being at a concert, listening to music being played live by amazingly talented musicians, singing and dancing and soaking up the joy in the atmosphere.  Traveling along the road and experiencing all of this with my best friend beside me…and sometimes the corgis too…is what I live for, and makes all of the packing, planning and discipline worthwhile.

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Beautiful Alpine Valley, Wisconsin 7/9/16 & 7/10/16 (yes, that’s really a ski hill behind the concert venue, it is quite a sight to behold when you walk in)

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Irvine, CA 7/26/16

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NBA legend Bill Walton, we see him all the time at shows, this pic from San Diego, CA 7/27/16 Read Bill’s wife Lori’s great blog about Why they are Deadheads here

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San Diego, CA 7/17/16

I don’t let my health limitations hold me back but rather use them as a challenge to get creative with handling them and get on to where I really want to be, on tour!  After these 6 shows, we’ve got 2 more to go later in the summer but those require a flight and well loyal readers, that’s a whole different story…stay tuned!

 

Surviving Suburbia

Fresh air; sunshine; the wind whistling through pine trees and dancing through my hair; birds happily chattering away; water musically flowing down stream; the scent of wildflowers and dirt; just a few of the things I love about being outside.  As an outdoorsy mountain girl, these days stuck living in the suburbs does feel stifling and unfulfilling.  Although being surrounded by soaring trees and uninterrupted open space may be what my soul craves and may currently elude me on a day-to-day basis I try to make the best of being surrounded by city sprawl, traffic and manicured lawns.

The corgis and I walk at least 3 miles each day, exploring different routes through the paved and man made surroundings of our neighborhood.  Being a person energized by nature and left feeling depleted by the murmur of homes being remodeled; gardeners mowers and blowers; traffic; and the busyness of life in a neighborhood; this daily ritual can sometimes feel like a chore.  Taking time to be mindful during each of our excursions helps me to find gratitude, focus on the birds that are singing, the lovely and seasonally changing aroma of flowers in bloom and the vast ocean just beyond it all influencing the climate which provides a backdrop to our shared existence.  This is a survival mechanism for me to remind myself that even here, nature is all around, I just have a look a little harder to find it.

Keeping this in mind as the dogs and I walked the last couple of days I took my camera along and snapped some pictures of the stunning beauty and variety of nature in our neighborhood.  As the photos speak more beautifully than I could ever possibly write you’ll note this post is shorter on words but longer on photos.  I hope you enjoy my photoessay of Surviving Suburbia and it sparks you to bloom where you’re planted…even if that place isn’t quite where you thrive.

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Delphinium standing over a colorful bed of cosmos, petunias and begonias

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Manicured boxwood framing a row of trees

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Wall of mandevilla

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Bright bougainvillea laying on a bed of ice plant

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Fragrant row of roses

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An explosion of foxglove and cabbage roses

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Colorful blooming succulents

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Foxglove, snapdragons, petunia and ranunculus

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Burst of bougainvillea on a slope of Mexican marigold and echium

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Wheat swaying in the breeze

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Variety of drought tolerant succulents

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Foxglove, sweet pea, delphinium and roses cascading over a wall

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Purple echium, salvia, bougainvillea and lantana

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An old growth hibiscus tree

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Cheery bougainvillea

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Squash blossoms trailing over a wall

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Quilt of colorful impatiens

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Nectarine tree

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Artichokes

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A towering wall of morning glories

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Delicate pink poppies

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Swiss chard awaiting harvesting

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A well tended bed of succulents

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Flowering chives guarding a brass lamp

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Cosmos and delphinium bursting with life

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Jupiters beard thriving in an alleyway

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Cactus in vibrant bloom

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Salvia thriving on a red curbside

Just say no…to your doctor

It was a busy week, I started back to work after being off for 9 weeks recovering from a shattered wrist, had 3 doctor appointments and 2 physical therapy sessions.  Although I jokingly call myself a professional patient, even for me the week was an especially jam-packed one.  It’s often at these times when you’re worn down that a curveball comes your way and can throw you for a loop.  Well, wouldn’t you know it, lucky me to compound this busy and stressful week I found myself staring down a curveball.

Last year I started seeing a new immunologist (my previous doctor of 30+ years had the nerve to retire!).  By this point in my life I’ve seen enough new doctors to recognize the sparkle in their eye when they look over my medical history and then proudly parade their latest class of eager medical school students into the room to check me over as though I were a highly endangered species going on display at the zoo.  This dance usually goes on for a couple of visits and then my new-ness seems to wear off and we get down to business.  I’m finally at this point with the new immunologist, the drill is I’m seen by the resident, then the attending physician and then the department head comes in to give me a final once over and I’m on my way.  Other than the broken wrist I’ve been doing well, fairly healthy, blood levels look good, okay blah blah blah…  Doc, let’s just wrap this up I need to drive 15 miles to get to my physical therapy appointment!  In my mind I was already out of there, I wasn’t present in the moment and didn’t notice the sparkle in the department head’s eye.  Uh oh!

After reviewing my chart and blood test results over the past 10 months the immunologist wanted to take a new approach to my care.  Now for the last 30 years I have been giving myself an injection once a week of a medication that has changed my life…actually it has given me a life!  Before taking this medication I was sick 5 or 6 times a year, each time I got sick it turned into pneumonia and things went downhill from there.  I spent summer breaks in the hospital, our family could hardly plan a vacation as my health could turn to a precarious state at any moment, my life was ruled by sickness.  Since taking the medication I went away to and graduated from college, traveled the world, lived and worked on a farm and ran a business, just to name a few things.  Without the good health this medication has afforded me, I couldn’t even begin to imagine any of these things to be a possibility in my life.  The immunologist wanted to do an experiment, take me off this life changing medication for a month to see how I’d do.  I was blindsided.

A million things rushed through my mind but I was in such a state of shock I was only able to formulate a couple of blasé questions and then the doctor left.  The nurse came in with instructions for some blood tests to be performed before this new experiment began and I was shuffled out the door.  My head was spinning as I drove on to my physical therapy appointment still trying to digest this development.  I was going through my summer plans in my head panicking at the thought of becoming unexpectedly and severely ill missing the 8 concerts we have tickets to attend; the trip with booked flights to visit my brother and his family; being unable to spend time with my newborn nephew; being absent from work for a long period of time after already being out for 9 weeks while recovering from a broken wrist.  It was all really overwhelming.

Once I got home and was able to just sit, take a deep breath, absorb everything and talk things over with my husband, a long forgotten memory came back to me.  I remembered being around 5 years old and my mother giving my pediatrician a piece of her mind after the 4th chloride sweat test failed once again to diagnose the Cystic Fibrosis the doctor was positive I had.  My mother saw the ridiculousness of the multiple fruitless tests and wasn’t afraid to stand up to the doctor and say no.  No, you’re not running this test on my daughter again, no she doesn’t have Cystic Fibrosis and no, you don’t know what you’re doing!  She was so assertive and strong, a true champion for my overall wellbeing.  That memory was a beautiful reminder to me that I am ultimately in control of my care and health.  My immunologist may think this could be a good idea, however I have to live my life with the consequences this experiment may have and the risk isn’t something I am willing to take.  I emailed my doctor and just said NO!

I am at peace with my decision, even if it ultimately means finding another immunologist.  Being an empowered patient isn’t easy but living with serious health conditions and chronic illness teaches you a lot and sometimes you have to draw on your arsenal, protect your welfare and just say no to your doctor.

Last summer was epic, and because I just said no to my doctor I’m not going to miss out this summer on making more memories like these…

Sharing my life with dogs

I am a self described dog person, I’ve loved dogs as long as I can remember.  You don’t have to know me for very long to know that I am dog crazy.  My husband likes to, with a wink of the eye, call me “the crazy dog lady”, a title which to me is a badge of honor.  I’m the person who stops in their tracks to meet, greet and have a chat with every dog tied out in front of an establishment patiently waiting for their owner to reappear.  I “get” dogs far better than I “get” people.  I’ll be honest…I know you don’t own 3 and occasionally 5 dogs at a time without being a bit eccentric.

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A birthday gift from a friend hanging in our laundry room

As a very sick child often missing months of school at a time our family dogs were my constant companions and sadly sometimes some of my few friends.  When you’re sick a lot, absent from school constantly and unable to participate in team sports, other kids aren’t particularly interested in being your friend, not knowing if and when you’d be well enough to be around and participating in school and social events.  Our dogs however were ever faithful to me despite weeks and sometimes months away at the hospital.  The times I was feeling well I was in our basement or garage setting up obstacle courses and training the dogs to navigate through my creations.  Those times brought me such delight and strengthened my enamor of the canine species, even at a very young age.  When I was in my early teens and a new puppy came into the family my mother signed me up to take him to obedience class, I Ioved every second of it.  I practiced the lessons and commands faithfully everyday.  Going to class each week and seeing my dog better trained then some of the dogs of the adult handlers helped build my self esteem and confidence.

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My big guy “assisting” me as I type this post

Into adulthood I continued to share my life with dogs, I hope to their benefit as much as mine.  While living on a farm in Northern California with a Rottweiler and 2 Australian Cattle Dogs I became good friends with my neighbor, a corgi breeder, a type of dog I had never interacted with before.  It didn’t take long for me to be besotted with the diminutive dog with the stumpy legs.  Their compact size belies their courageous nature, how else is a 25-35 pound dog going to herd cattle?  Being a herding breed they are highly intelligent and energetic, a good fit for my lifestyle.  I became a corgi owner and devotee very soon after, experiencing the joy of watching my first corgi come into this world.

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A cool dip in an alpine lake at 12,000 ft, after a long day of hiking in the Rockies

Now I am a few more corgis later and I continue to value sharing my life with dogs.  Being a mum to dogs has brought me so much joy, kept me physically active and helped me make new friends.  During my darkest time of loss, having to get out of bed to feed, walk and care for my dogs rescued me, brought me out of depression and helped me to rejoin life.  They seem to understand my times of illness and draw closer and calmer while I heal. Always patiently at the ready for when I’m well again and we’re off on another walk, hike, road trip or great adventure.  As enthusiastic to rest in my lap and supervise my typing this post as they are to trek with me and my husband up a 14,000 foot mountain.  I am so deeply appreciative for their devotion, patience, love and effervescent exuberance, it has sweetened my life immeasurably.

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Tailgating at a Dead and Co. show

So that’s my story…I’d love to know how dogs have made your life better too!

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Snowshoeing in Colorado

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Beach babies

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Resting up on a road trip to our next adventure…

A different kind of patient…for now

Over the past couple of months I have become a different sort of patient than I have been the previous 4 decades.  Up until this point I have kept my body reasonably in tact, that all changed during my Colorado winter holiday.  The husband and I were taking a lovely morning stroll to the grocery store, savoring the falling flakes making a brilliant white blanket over the mountain scenery.  Admiring our surroundings I snapped this picture:

 

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Mere moments later, life came to a crashing halt.  The snow I’d been so recently admiring concealed a patch of ice on the trail.  As I walked along, both my feet slid out from under me and in an effort to break my fall I put out my left arm, landed hard and screamed out in agony.  I sat in place for a few moments in shock.  Unbelievably, the nearest sign of civilization to my landing spot was an Urgent Care, just opening for the day.  After carefully peeling off a few layers of my winter gear the doctor didn’t even need an x-ray to see I had landed so hard I completely shattered my wrist.  An x-ray confirmed, 4 broken bones one of which was completely gone…this was turning into one memorable vacation.

The doctor performed a reduction (the name of this procedure belies the torture that it is), casted my arm from my knuckles to above my elbow and sent us on our way to fly home the next day.  Most disappointingly the husband and I were scheduled to go on a dog sledding adventure that afternoon…an experience that will have to wait until next winter.

It was an agonizing journey home, as my already swollen injury swelled even further during the flight.  By the time I fell into my own bed that night I couldn’t bend any part of my unrecognizable fingers.  Gratefully, the husband had already made arrangements for me to be seen before 8AM the next morning by a wrist specialist in our area.

Bright and early this next morning, now 2 days after the accident, I was seen by the orthopedic surgeon.  After reviewing the x-rays we had brought back with us from Colorado and taking some more of his own he decided that my wrist was broken into so many pieces surgery may actually cause further damage.  However, he wanted to keep a close on it for a few weeks and reevaluate.  For the time being, I had to just grin and bear it.

Now up to this point in my life being a patient was a pretty permanent prospect.  Due to all of my diseases, illnesses and afflictions once I established a relationship with a doctor and/or specialist I knew I would see them until they retired.  Seriously, last year alone 2 of my doctors retired; it’s a “hazard” of the job.

This new situation was completely territory for me as a patient.  First of all, I was dealing with an injury, not a disease or illness so I will eventually see the end of this road.  Second, with exercises and physical therapy there are steps I can take to improve this temporary condition.  However, in the meantime it has been a challenging 2 months in 4 different casts, being unable to drive or work and simply do life’s little daily tasks.

As I move through life no one I casually encounter has any idea about my health conditions, whereas, wearing a cast obviously means having an injury others can see.  Now with the obvious malady I get stopped walking the dogs (which I can now only do one by one with the cast on), in the grocery store and Starbucks by complete strangers asking what happened and offering advice or an anecdote about their own injury.

Physical therapy has also offered camaraderie with others going through similar situations, nothing I’d ever experienced in the typical waiting room of my specialist’s office.  The conversations while sitting at the wrist and hand therapy table is a bit like a scene from an old prison movie with patients asking one another “what are you in for?” or “how long have you been in?”  It provides some lighter relief for a painful and stressful situation.

The final cast has thankfully come off and now there will be another couple of months with a brace and physical therapy.  In the meantime I continue to learn how to manage this unfamiliar territory as a new kind of patient.

How do you manage when your patient life takes a dramatic change?

Oh my food-ness!

Well, we’ve got to eat, right?  If the saying, “you are what you eat” were literally true as a child I would have looked like a jar of peanut butter.  Not a pretty thought, but that was just about all I would eat.  Many kids are picky eaters but I believe children with serious illnesses are particularly so and maybe not for the reasons you may think.  As a child my illnesses and health condition didn’t affect my ability to eat or necessitate strict dietary adherence.  When your life is a daily whirlwind of doctors appointments, being poked, prodded and examined you feel a little out of control.  I can recall coming down to dinner one night as a child and asking my mom what was for dinner, whatever her response I didn’t care for it and asked for something else.  Her response, “this isn’t a restaurant, if you don’t like what is being served, you don’t have to eat.”  Oooh, I don’t have to eat?  I can have control over this situation?  Okay, no food for me!  Obviously, I was alright missing a dinner or two here and there.  It honestly sounds worse than it was, but when I had a choice, peanut butter was all I wanted. Generally I wanted a plate of saltine crackers covered in peanut butter, but occasionally I could be talked into celery sticks or a piece of bologna (yes, you read that right!) smothered with peanut butter.  My mother carried packs of those neon orange crackers with peanut butter you find in vending machines in her purse for emergency feeding purposes.  My only complaint, these wasn’t enough peanut butter on those crackers.  🙂

The summer before my 8th birthday, I was hospitalized for 2 months as I underwent a series of experimental therapies.  During that stay my food story changed when an eagle-eyed nurse saw me sizing up the hospital cafeteria menu for the upcoming week and shared with me some information that blew my mind…  Did you know you don’t have to check off the boxes as to which food offering you want each day?  You can write in whatever you want, and they will make it for you.  Seriously!  When given this kind of opportunity for choice my interest and engagement with food took and abrupt turn down a road of somewhat greater variety.  Now, thankfully it has been a long time since I’ve endured a long-term hospitalization so I cannot say if this remains true for adults or if I just got the benefit of pity on a long-term young hospital patient, but boy was I grateful for that little tip!

It took some years but I expanded my food repertoire further beyond peanut butter and sometime in my early 30’s discovered the important connection between what I ate and how that food made me feel.  Through lots of trial and error and consulting with various doctors I was able to create a dietary plan that I could live with and fit into my lifestyle.  Well, you know the way things go, about the time I had things running smoothly there was a roadblock, I was diagnosed with hypoglycemia.  It was back to the drawing board as my diet became even more important to my health, wellness and ability to function on a day-to-day basis.  My journey during this time led me to become a pescatarian and eating 5 or 6 small meals throughout the day.  That was working well, but it was’t the end of the story.

A few years ago I took my Buddhist refuges and became a vegetarian.  You guessed it, that meant another consultation with my endocrinologist and immunologist.  In addition to SCID-ADA I have Hashimoto’s thyroiditis and hypothyroidism so my endocrinologist warned me against adding soy and soy products into my new dietary regime.  Soy avoidance is a controversial subject but as my doctors know my particular situation best I’ve followed their recommendation.

When people find out I’m a vegetarian most reply, “oh, you must eat salads all the time.”  Actually I don’t eat salads all the time, because of the hypoglycemia it’s important for me to add carbohydrates into most of my meals to stay in tip-top shape so salads are just a part of my bigger dietary picture.  For example my diet includes, cereals/grains/breads, soups, veggie sandwiches and burritos, lots of nuts and beans.  Just this week the husband and I made the most divine cauliflower baked ziti!  Like everything in life, my diet is an ever evolving work but with so many vegetarian recipes and ideas available online it has become easier to focus on eating locally, simply and seasonally.  Since I started following an lacto-ovo vegetarian diet, I cannot tell you how good I feel…not to mention how eating so many vegetables makes your skin glow!  So nowadays if “you are what you eat” I would look something more like this…

I’d love to hear what you eat to feel your best!

For information on the immune system’s building blocks and optimizing health through diet and nutrition, the Immune Deficiency Foundation is hosting a webinar covering “Nutrition and Immunity” on Thursday, April 13th at 7PM ET presented by Dr. Victoria Dimitriades Associate Clinical Professor of Pediatrics in the Division of Infectious Diseases Immunology and Allergy at the University of California, Davis.  Register on the IDF PI Connect site, here: idfpiconnect.org

How I became so grateful

I am a girl with tremendous gratitude for life!  Living with serious health conditions is all I know, I’ve been doing it all my life.  It started with one genetic autoimmune disease and I’ve added on a few more conditions along the way.  Through a life of perpetual doctor visits, medications, procedures, treatments and tests I’ve seen, survived and learned so much.  My unique medical story has been featured on 60 Minutes and as part of a Pulitzer Prize winning series in the Chicago Tribune; I spoke before Congress when I was in high school on behalf of the Orphan Drug Act.  I’m am so deeply grateful for the doctors who had the courage to look at my parents and admit, “I don’t know”, without their humble admissions I wouldn’t have survived this long. An optimistic attitude and a sense of humor has sustained me through the difficult times, I hope sharing my story will help empower others through their odyssey of chronic illness, serious health conditions and just trying to be normal.

Let’s start at the very beginning, I’ve heard it’s “a very good place to start”.  Forty some-odd years ago I came along, born from San Francisco sunshine and it didn’t take long for my parents and doctors to realize something was quite different about me.  I had my first ear infection before I even left the hospital; it was an early indication of what was to come.  For the next seven years I spent a significant amount of time in and out of medical facilities perplexing doctors from California to Colorado to Michigan…and back again.  Pneumonia was always my end result with each bout of a cold or the flu that came along.  I was a very sick girl and no doctor I visited could figure out why; although some tried putting me through the wringer to prove they did, to no avail.  Finally, a pediatrician took a wider view of my illnesses realizing spring and autumn seemed to be when I was the most sick and suggested I see an allergist.  Little did I know THIS doctor visit would change my life.

The allergist reviewed my case and agreed with the pediatrician’s view that severe seasonal allergies were most likely the cause of my childhood spent in an almost perpetual state of illness.  While in the allergist’s office a standard scratch test was performed on my back.  Much to the doctor’s surprise I had no reactions whatsoever to the allergens, however, I was allergic to the control.  A lightbulb went off, the allergist recalled reading something in a textbook case in medical school and he looked at my mother and said, “I don’t know exactly what’s wrong with her, but I can send you to someone who will.”  It was a miracle!  I was soon whisked off the University of California San Francisco to be seen by the Director of Pediatric Immunology and Clinical Research Center where I was quickly diagnosed with Severe Combined Immunodeficiency secondary to Adenosine Deaminase Deficiency (SCID-ADA).  I caused quite the sensation at the time as at age seven I was the oldest living survivor of the disease.

A diagnosis was just the beginning, but being able to put a name to what had caused my health difficulties was a tremendous relief.  In my blog I will share stories from my life-long journey of living with a serious health condition, and adding a few more serious health conditions along the way, from childhood to middle age (oh geez – when did that happen?!?!) always striving to be an empowered patient, staying as healthy as possible, living a normal life and getting out to explore the world as often as possible.