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December 2008
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February 2009

Morbidity and celebration

I know... this is morbid:  I look at obituaries.  Someone I respect a great deal told me that was how he obtained so much information, and then my grandmother has always enjoyed reading them.  There is a great deal of information that one can obtain from a few words, sentences, and phrases about the years that span one's life.  It is sad that several sentences or paragraphs can sum up a life, no matter what kind of life an individual led.  Yet, there it is in print.  So upon a great deal of reflection, earlier this week I could not resist looking at the obituaries in the New York Times.  When I started to scroll through the names and images, the news about acclaimed author John Updike had not yet hit the wire.  But others stared back at me.  In fact, the page was filled with faces who passed away in 2008 - a collage of death.  I know, morbid... but does it have to be? 

I looked at the names, faces, and short biographies and thought about the extraordinary lives that each person led (sometimes in a very short time period - think Heath Ledger for example).  The "Notable Deaths of 2008" listed people like Paul Newman, Eartha Kitt, Bettie Page, Michael Crichton, Isaac Hayes, Cyd Charise, Tony Snow, and Tim Russert.  Causes of death ranged from age, to suicide, to cancer, to heart disease to stroke.  Some of the causes of death are avoidable - while others are not. 

However, each name, cause of death, and image led me to think a bit more about my own life and mortality.  What did I want to leave behind?  What would people say about me?  Truth be told, I have pondered this question since my stroke, and I strongly believe that what people would say now differs a bit, just enough, from what they would say before that event.  I might give a little more, there might be a bit more selfishness on my part but it is for the right reasons.  I might care more for those who are dear to me, and close the circle of my friends to make it a bit smaller.  At the same time, I might have reached out to old friends who knew me "when"...  It is not such a bad thing.  I suppose obituaries are a way of celebrating the life that was and putting on display for the world to see.  I hope however, that for me, my life is celebrated now, rather that later, when I cannot enjoy all that it brings.Graveyard


Stroke Advocacy

Why does advocacy matter?  Stroke does not discriminate.  It does not care if you can afford to recover from it, and it does not care if you have strived to take care of yourself or not.  It does however attempt to devastate lives and families.  I know this because I suffered at stroke at 33.  Luckily I received treatment immediately due to education and knowledge of a loved one who happened to be with me and a medical system that worked on July 21, 2006.  However this is not always the case.  Without education, advocacy and funding around stroke awareness lives are lost.


Amazing people and places

I have friends - amazing wonderful friends -  who are all doing incredible things with their lives.  Lisa has an extraordinary organic design company with colors, patterns, and designs that would make almost anyone want to start doing bits and pieces of their home all over again... Steevy just started an editing company to "dress up your words"... Jojo has baubles and bling that would dress up any girl on the dreariest of days and make her feel downright sparkly... Jody has one of the best restaurants in Cambridge with charm, class, and oh, did I mention the food???  I recently met Maryam on an exotic holiday to Marrakesh.  She told me tales and stories about the city and its history that would entertain even a snake charmer!  And you might need to pack something to pack your baubles and new fabrics as you pack for your next holiday to Morocco... well then, hop on over to Nankeen and you will find something that will fit everything for your trip there, and all of your treasures for your trip home!  Oh, if all the shopping and travel planning makes you hungry, then you really should order one of Pamela's spiked divine desserts!


The familiarity of it all

It was all too familiar for her as she walked down the hospital corridors - the hospital is known as Man's Greatest Hospital to a few, although she has her own favorite.  She recognized the smell of the hand sanitizing gel that was located on every corner in neat little dispensers.  She even smelled it as she walked by people leaving the hospital on that cold, snowy winter night.  The smell of the gel was somewhat reassuring as it reminded her of being safe and being taken care of.  However this time, it was not her who needed to be taken care of.  It was not her heart that needed the doctors and nurses.  Her heart did not have the tests, the monitors and constant monitoring.  No, she was simply a guest, and observer, and perhaps most importantly, a loved one of someone whose heart did need all of these things.  "Interesting" she thought to herself, how easy it was to identify with everything that her loved one was going through.  She knew all too well what questions to ask, what occurred with each procedure, and the names of all drugs involved with the procedures.

It was easier being the patient.  She did not have to worry about her loved ones - although in her own mended heart she knew that they would say the same about her.  Women and their hearts.  They are so precious, and not to be overlooked or dismissed, ever.  Never taken for granted, never underestimated, and should also have a voice.  She held her hand over her own heart and felt it beat, steady, strong.  That is how a heart should beat.  Steady and strong.  Much like her feelings towards those she loves.


Nuclear what???

Tests, medical ones.  All kinds.  I have had them  You want to know about them, well, in my 36 years, I have become quite the resource:  ACL surgery, laminctomy (back surgery on L5-S1), stroke, open-heart surgery, TEE test, multiple CT-Scans, MRIs, endoscopy (2 times, and the drugs given for this, well let's just say that they make it all better), and that is just a few of things.  You would think that I am about 30 years older than I really am.  Nope.  You would think that I am unhealthy.  Nope - I exercise, eat an extremely healthy, clean, additive-free diet.  But none-the-less, I have had these test for real problems, and the last was a gastric-emptying study. 

In my experience, when doctors explain tests, they do so in a very "laissez faire" kind of way.  For me, I tend to look up as much info as possible, and sometimes that is not a good thing.  So when one of my doctors mentioned a gastric emptying study, and I started the searching on line, I was not thrilled (to say the least) to see the words NUCLEAR MEDICINE.  I am not a doctor (although in another lifetime, I would probably like to be one), but the thought of something nuclear going into me just did not seem right.  Upon further research (on line mind you, important to know this) I starting reading about "fried egg nuclear sandwiches".  Not exactly what I imagined, especially considering that I do not order fried egg sandwiches on a regular day.  So, a few days before the test I called the office and asked many questions.  The tech, very nice, gave me some info that I would not have otherwise had.

1. Bring an IPOD.  I would be lying still for 45 minutes for the first series of images.  This came in very handy...

2. The test could last up to 4 hours.

3. The substance (Tc-99m) is in an egg substitute mixture, and this is eaten along with toast.

Well, I figured that the hospital was going to have some kind of processed white bread, so I brought my own toast.  The tech looked at me like I was a bit odd, and I told him he could discuss it is with all of his friends, I did not care, but I was not going to eat processed white bread - the nuclear eggs were bad enough.  He complied, and went off to make my sandwich.  When he came back, the eggs were in a little paper bowl, and my toast was burnt.  Not the fanciest breakfast, but I was hungry, and I ate it even though the eggs left a metallic-like taste in my mouth.

The first set of images were fine.  The table was fine.  The test is really quite simple, and since I had to be there for the entire 4 hrs, I finally asked if I could just sleep on the table in between the pictures (each break was for an hour).  No one had a problem with it, so I got to rest, and they received their images. 

Seriously, I mean let's hope that something comes out of this test.  It is comical that I had nuclear eggs for breakfast.  However, it is certainly not something that you will see posted on the Queen of Tarts!


The good kind of pain

Tired, sore, aching everywhere.  That is how I felt on Tuesday evening after a grueling 90 minute workout at 6:30am that morning.  Jumping jacks, pushups, squat thrusts, power lunges, pushups on a medicine ball that made every fiber in my shoulder scream because they all knew that they would need to repair themselves in time for Thursday's workout out.  And having to take off my work clothes so that I could get ready for bed... oh, forget it.  Slow and painful.  It was a good pain though.  One of those pains where you know that you pushed yourself and worked your body, your muscles, and your mind to the edge and back.  You thank your body for what it helped you accomplish.  Hector shakes his head and thinks that I am crazy for dragging myself upstairs and moaning and complaining after these workouts.  He does not understand the pain - the good pain as I explain to him.  It is not the kind of pain that ripped through my chest after heart surgery.  NO this is the kind of pain that say "Thank you for taking care of yourself, and continuing to be good to your body".  As for the instructor who does this to me?  Well it happens to be yours truly.  I am the one who wakes up at 5am three mornings a week and takes my class through the bootcamp classes and the weight training classes.  Hey, if I can do it, so can you!  I wonder how the rest of them feel right about now...

And by the way, if you have a blog out there and have not checked out ALPHA INVENTIONS, check it out!  It is great!!!  It provides a great way to bring traffic to your blog PLUS you get to see some fabulous up-to-date blogs in real time.

In health,

Lily


Cryptogenic Strokes

We all sat around the dinner table on Saturday night talking, eating, laughing, and discussing life events. Inevitably, it came up.  It often does.  Since my stroke, we talk about it, laugh about it, and discuss the event and the after affects.  Life before, during, and after are three succinct time periods that are now part of my life, and my life is defined by these periods.  As we talked, someone brought up the term "cryptogenic stroke".  He happened to be a cardiologist.  He told me that is probably what I had, and explained it as a stroke that occurs in otherwise healthy patients with PFOs or ASDs that is of unknown origin.  "Really", I asked, "well, how come I had my stroke almost 2 1/2 yrs ago, and I have never heard this term before?"  No doctor had ever mentioned this term to me.  In fact, many danced around the hows and the why of the stroke, and even the suggestion of surgery.  Hearing a brand new term shocked me.  Our friend looked back at me, and he explained that doctors have a hard time definitively defining the causes of their patients ailments, however, since I was not his patient, it was easier.


Well, this does not make sense to me.  The word "cryptogenic" means "...unknown origin, as a disease" (www.dictionary.com).  So why would it be so hard for my doctors to tell me this?  I understand that we all live in this world of fear - fear of saying the wrong thing, fear of saying the right thing, etc.  But still, it is a bit odd that a 32 year old female in great health, no history os strokes or clotting, non-smoker, no heart problems (except for that little hole) would have a stroke.  It is easy to attribute it to the ASD.  And in part I am glad that the hole was found.  It means that is the mist likely cause for the stroke.  However, a little bit more information would not have been terrible.  In fact, it might have helped...  I guess that I am going to just have to get over the fact that sometimes, I am not going to have all the answers.