Wednesday, December 29, 2010

This Year's Resolution

Have you ever had those moments where you wonder What was I thinking??  As you look back at the choices you've made during the monumental situations in your life (such as choosing a new car, saying "Yes!" to that second date, eating the yogurt that's past its expiration...okay, maybe that one isn't so monumental...) sometimes you look back at these memorable situations and praise yourself for your quick wit and unwavering sensibilities.  Aaaannnd...sometimes you DON'T!  I've learned that it's usually the mistakes we make that teach us the biggest lessons, and these lessons will continue to guide us through many situations to come.  I can honestly say that I will continue buying Honda CRV's (if at all possible,) and I will not hesitate in saying "No!!" to any expired yogurt in the future.  There are just some roads I no longer need to travel!

But what about those moments where you make silly mistakes?  Such as going to the grocery store intending to get corn pads because you so DESPERATELY need them...and coming home with10 items, none of which are corn pad related?  Or attempting to complete a simple task that you've probably done a thousand times, and all of a sudden you screw it up and have to start all over again?  It's times like these when I start to wonder about my brain, and if  I've just come to the point where it's no longer functioning properly.  Which scares me, because I think that if my elderly cat Scout has gone past that point,and my own brain stops working...who will open the cans??  Well, when I mentioned the Cakewrecks blog in my last post and how you can give as little as $1.00 to 12 different charities during the holiday season, I said that the chance to give continues until August 2011.  I still think that must be true, because why would I have come up with that on my own?  Though when I was looking back through their site today I cannot find where that was said...and I searched for that sentence!!  If any of my readers out there check out Cakewrecks and happen to read that information, please contact me and let me know because it's driving me a little batty.  It will assure me that I haven't completely lost my mind, and that the yogurt didn't do any permanent damage!

Anyway--as I was saying about lessons, before my brain took a detour...I have learned over the years that I really hate asking for help.  Well, not so much when it involves my failing mind (obviously,) but more when it involves something I cannot physically do on my own.  I have learned to adapt how I do things on a daily basis, in living with a disability...because I have no choice.  Though there's a difference between adapting how I do something (still completing the task on my own,) and ADMITTING to myself that I cannot do the task at all.  Even though I'm 39 years old and have lived with CMT since I was a teenager, I still have not gotten used to the whole admitting thing!  I'm really bad at that--and even though I will honestly tell someone what I can and cannot do if they ask me, a task will come along that's too difficult...and once again I will attempt it.  Often hurting myself in the process!  I've tried to figure out why I have such a problem asking for help when I physically need it, wondering where that all started.  It may stem from childhood gym class, and being yelled at for not being able to complete ANY of the physical tasks set before me...or it may be my strong, Irish roots keeping me from EVER giving up.  Or it may just be that I'm stubborn! 

So in the spirit of the New Year, I've decided that I'm going to do my best and ask for help when I need it...and admit to myself when a task is beyond my physical capabilities.  I will most likely fail miserably at first (as I have been a stubborn Irishwoman for a while now,) but I am going to try.  Though if my brain IS failing, I may forget all about this in 2011..thank goodness I have this post to remind me!  And hopefully I will learn something from my past mistakes, so I won't try and shovel my car out from under mountains of snow all by myself.  This, of course, will take effect during any snowstorms that may occur in 2011...this past storm doesn't count against my resolution, since it TECHNICALLY didn't happen in the New Year.  Told you I was stubborn!! 

Tuesday, December 21, 2010

Give a little, Get a lot!

Okay...Christmas is almost here!  I still have all my presents to wrap and I'm pretty bad at that (they always look like I drank a bottle of scotch and blindfolded myself before starting,) so I'm going to make this a short and sweet post for the holiday season!  Then it's off to my present-wrapping nightmare.  Hmmm...I wonder if I bought enough Johnnie Walker??

I wanted to pass on an idea I read about while visiting another favorite blog of mine, that I have been a fan of for a few years...the site is  The idea?  Paying it forward!  The writer of Cakewrecks had a wonderful idea for the holiday season.  Instead of exchanging gifts, her and her husband (co-author,) are donating money to charities...and if you log onto their site every day you can click on a link to donate as little as a $1.00 to a special cause, and each day a different one will be featured.  The suggestion is to donate to 12 different causes, for the '12 days of Christmas'...though the daily charity options will continue until August, 2011!  No need to limit the giving to December, now is there?  And let me assure you that donating is an option...not a requirement.  You can still log onto Cakewrecks and enjoy the hilarious, misspelled and often horrendous cakes that they feature every day!  No matter what your beliefs may be or what holiday traditions you may celebrate, here is a chance to donate money to charities all over the country in the spirit of the holiday season...and enjoy a laugh or two in the meantime.  Who could ask for better than that??

Now I know most of us are struggling financially...I certainly am!  That's what makes this idea of Cakewrecks so actually CAN donate as little as a $1.00 to as many or as few causes as you wish, through FirstGiving.  This was the one charity site Cakewrecks found that will take dollar donations, and most of us can afford that!  Some of the causes I have donated to so far are The Water Project, Inc. (which provides clean drinking water to developing countries around the world,) Best Friends Animal Society (the nation's largest sanctuary for abused and abandoned animals,) and To Write Love On Her Arms (which provides help for people struggling with depression, addiction, self injury and suicide.)  I may not be able to rid the entire world of its problems, but at least I can make a tiny dent of positive change, one charity at a time...and just think about it--the more tiny little dents that are created, the quicker that change will come!

So during this time of giving when most of us are still rushing to buy last minute presents for our loved ones, take a moment if you can, and check out this site!  It's a chance to look beyond ourselves, and give help to someone who so desperately needs it.  What's in it for us?  Well, I'll be honest--there's really no material most cases you will never meet the people and/or the animals you help.  So what has this given me?  The benefits are HUGE.  From my tiny little corner of the world I actually feel like I'm making a difference in someone's life.  Together with all the other loyal Cakewreck readers, we can start to fix the world, one little piece at a time.  And that certainly means a lot! 

Saturday, December 18, 2010

The Holiday Spirit

Yay!!  My faith in the Christmas Spirit has been RENEWED!!  Yes, Christine...there is a Santa Claus, and he shops at the Hannaford grocery store.  It is a wonderful thing to see the bright light of goodness and common decency shining at the end of the tunnel...especially when this time of year usually leaves me frustrated, and slightly anxious.  Do I love Christmas??  You know I do!  But I have to admit...the closer it gets to that special day, the more I want to stay inside and away from crowds, crazy traffic, and impatient people.  I don't move fast enough to keep up with it all, even in my car...and it seems as if people are always rushing around me because they are in such a HURRY!!  And unless you're on your way to buy me a present (I love to read, I'll watch anything with Johnny Depp in it, and I wear a size 6,) I wish you'd all just SLOW DOWN!!  So during this time of great impatience, I had to share this story of something that recently happened, which showed me there are still people out there who have the Spirit!

It all started on Tuesday, as I struggled to get the last minute items on my list without getting flattened by the other harried shoppers.  Or should I say, I struggled with the whole DAY!  You know those days when everything goes wrong from the start?  Well, I think God was trying to tell me something when no matter where I stood or which way I brushed, the wind blew the snow from my car directly into my face.  I should have just gone back inside, but I pushed forward...after all, my Christmas shopping list was burning a hole in my pocket and I had to fill it!  After cleaning off my car, as I was finally pulling out of my parking spot, I noticed that I needed to fill up my gas tank.  SHOOT!!!!!!  (Okay...not exactly the word I yelled, but this is a family blog, people!)  So I pulled my coat tighter around my neck, and headed to the gas station.

Now, I mentioned before that I have hand issues.  I have lost muscle, can't grip things well and often have numbness...and when my hands get cold, these issues increase ten fold.  So pumping gas isn't an easy task on the warmest of days.  On freezing cold days, it's virtually impossible!  I tend to use my debit card to avoid walking into the store, which in the summer is mostly laziness on my the season of snow and ice, however, parking lots become mazes of slips and falls.  On this particular day which was only 13 degrees, I pulled off my gloves (to try and improve my grip,) and attempted to feed my tiny, little debit card into the machine's slot using both hands.  And do you know what happened?  Can you see it coming??  A lovely gust of icy wind BLEW my card right out of my hands, and carried it away. SSSSHHHHOOOOOOOOOT!!!!!  (Again, not the EXACT word I used, but I'm doing my best to keep this PG rated!)  As I attempted to catch up to my card which was blowing further and further away from me, I dropped my gloves in the snow and almost got run over by car.  But did I give up??  No, SIR!  I was determined that I would complete my holiday errands!

Finally I got the card, found my gloves, and was on my way.  One of the many things on my list took me to Hannaford, a local grocery store for my readers outside of NY.  I had cut out coupons for bags of chocolate candy, to fill these cute snowmen containers I had gotten at the dollar store...I planned on giving them to my co-workers at the office.  It isn't a rule that we need to get each other presents, but I like to give everyone a little something for the holidays.  So with coupons in hand I scoured the candy isle, finally picking out five different bags.  After my savings my bill came to about $10.00, not counting the other items I needed to purchase.  Finally I was done!  I got back to my car as quickly as possible, and since this was my last errand I made my way home.  Once inside I didn't even put my things away, but instead got right into my pajamas, turned up the heat and crawled under a blanket.  It wasn't until a few hours later that I finally decided I should empty my shopping bags...and guess what I discovered??  The bag filled with candy?  GONE.  After my momentary panic, I figured I must have left it in the car...oh well!  It wouldn't be hurt out there...the candy would just get cold.  So I got back under my blanket and decided I would bring the bag inside the next morning before going to work.

Now, remember the day I had...snow in my face, my debit card blowing away and almost getting run over at the gas station--can you see the pattern?  Does anyone reading this really believe the bag was in the car?  Well, you guessed right!  It wasn't...and I realized in my rush to get back home, I must have left the candy sitting in the shopping cart.  I was really disappointed!  If I had left my bag of bananas in there, I wouldn't have minded so much...but I had clipped coupons!  Bought containers!  I had PLANNED!!  Alas, I gave up those plans and drove to the office, knowing that I couldn't really afford to replace all the candy I had lost.  I figured anyone who found that bag would consider themselves lucky, and hoped at least that the person who had it could use it for presents of their own.  Later that day as I was relaying my tale of woe to K, the office manager, she suggested I call Hannaford.  "Who knows?  Someone may have turned it in," she said, and I realized I had nothing to lose.  I gave them a quick call, bracing myself for more disappointment (since I figured no one would have turned in a free bag of candy,) and I am lucky I listened to her advice.  Someone had actually turned the candy in...and all my holiday plans had not gone to waste!

It's a small miracle, I know...had I never gotten my candy back, the world would not have ended.  Even if I had decided to purchase new candy (without coupons,) it would not break the bank.  Though finding out that someone had turned it in helped me to realize something...all the impatience and craziness this time of year does not mean the Christmas spirit is dead.  It's still out there, and a simple act of kindness proves it!  I'm happy to say that I feel a little less anxious, I was able to pass out all my snowmen containers filled with chocolate as planned, and I'm looking forward to this holiday just a little more than I was last week.  And thanks again, K, for prompting me to make that paid off, and I must say--when you got your container of treats, you did a great job of acting surprised!  Happy Holidays, everyone!

Tuesday, December 14, 2010

The Many Gifts

I've always loved reading and writing, and I guess you'd say I was pretty nerdy as a child.  For obvious reasons I was never good at sports, and when I played outside it usually meant I would be sitting under the willow trees in our backyard with a book.  The branches reached down to the ground and created a natural 'secret' fort, and I could sit under there and read for hours!  I would do other things outside as well, though usually a book was involved.  For instance, a neighborhood friend and I liked to play 'Dorothy and the Wizard of Oz' and my rendition of Dorothy often included her teaching the flying monkeys how to read.  I learned at an early age that I could be anyone, do anything...and go ANYWHERE a book could take me, just by turning the pages.  Starting this blog has been great as well, as it allows me to bring my readers into my head and my world even for a short while, while I write about any topic I wish...however important or unimportant that topic may be!  And when I had dinner with my parents last night and we were talking about the past, it made me think about where that all started, and the many gifts they've given me over the years.  I don't mean material possessions, of course...I mean my imagination, talents and humor.  From my father I definitely got my sense of humor...we're both goofy, and often laugh hysterically while my mother just looks at us and shakes her head!  And though she may not always get my crazy sense of humor, she has managed to pass on many gifts to me as well.

The love for reading and writing is mostly due to my mother.  And she passed on this gift in some strange ways...such as telling me late night veggie tales.  I don't mean the cartoon where the characters are all vegetables, of course.  That did not exist when I was little, but I was a witness to the ORIGINAL Veggie Tales...too bad we didn't get a patent!  You see, it all started when I was about eight years old...and I began having the hardest time falling asleep at night.  And not just for a little while, but for HOURS on end!  In fact, I'm not really sure I slept much at all through my childhood.  That, I'm afraid, came from my father who is also an insomniac...did I mention gifts??  Well, that's certainly one I could have done without!  And my poor mother could have done without it as well, as she would try anything she could think of to help me fall asleep.  One of the things she would do is tell me stories as she struggled to stay awake herself...created off the top of her head, on the spur of the moment.  And her stories for some reason always included vegetables.  She was a gardener, you see, and she actually thought that she could bore me into falling asleep by creating vegetable characters that walked and talked.  The sad thing for her was, I actually loved it!

So at three o'clock in the morning with my eyes wide open, I would hear all about the tales of The Giant Rutabaga or The Crabby Cucumber as my mother's poor eyes would turn into slits.  Stories of living vegetables and their many adventures kept me company night after night, and took my love of reading, writing and 'story telling' to a whole new level.  Here was something I could do, no matter what my body was doing that day...even if my limbs weren't always cooperating with me, my mind never shut off--not even at 3:00 in the morning!  I would listen over and over to these stories and see the picture of them in my mind...and I started to learn that I could create my own tales as well!  My ability to write grew from those moments, and though I would have benefited from more sleep, I wouldn't trade those childhood veggie tales for anything in the world.  In fact I've been wanting to hear the rutabaga story again, if you don't mind, the next time I can't sleep I'll give you a call!

It's easy to get caught up in the material whirlwind during this time of year.  We all have things we need, want and desire...and it can be disappointing when we don't get them.  And many of us worry if the gifts we buy others are good enough, and will they make the other person happy?  (Or maybe that's just me!)  It can be hard to think about Christmas and not see it in terms of 'possessions' when you're bombarded with holiday sales fliers in the mail, and store commercials on TV.  It can be difficult to put all that aside and just relax, and enjoy the company of friends and family...and realize that in most cases, the people who love you aren't going to care what's underneath the fancy paper.  So as Christmas is fast approaching, wrap your presents with care and imagine the smiling faces of your loved ones as they open them!  Be thankful for the thought behind the gifts you receive, even if you don't get everything you were hoping for...for you see, the people around you contribute to your life every day of the year.  Through their actions, their smiles, their talents and their laughter.  It's like getting a pile of gifts every day...and you just can't put a price on that! 

Thursday, December 9, 2010

Be in charge of your health!

It's so COLD today!!!  I really hate winter...every year when the temperature drops, it seems like I don't warm up until May.  This is one of my pool therapy days and I have to admit, I didn't want to go!  The last thing I felt like doing was going outside in 17 degree weather, only to submerge myself in a luke-warm swimming pool...unfortunately, the YMCA pool isn't heated like it should be!  Though as I do every week no matter what time of year, I pulled out my tattered bathing suit and packed my gym bag.  Because when you find something that works for you such as aqua therapy, you stick to it like glue!  And as I was driving to the Y, I got to thinking about my health, my therapy and all the great things it has done for me.  It is just one of many things I have been doing for years, to make my life as healthy and happy as it can be. 

I've always been somewhat wary of Western Medicine as the end-all, beat-all answer to everything, and in my own life I tend to look toward Eastern medicine first to find healing...whether it's for a cold, body aches and pains, or whatever else may be going on.  I'm not always successful, but I always try!  And when I have no alternative but to use Western Medicine, I am lucky to have one of the BEST doctors in the world!  Dr. V knows my sensitivities to medications and my many allergies, and is very knowledgeable about fact, after spending years going to a Neurologist (who seemed unable to do much more than conduct painful tests on me but for some reason could not find a diagnosis,) Dr. V was the one who finally provided me with the answer.  I know I have talked about that monumental moment in my life before, but let me provide you with a little more background.

When I was 25, I wished to change primary doctors.  A friend highly recommended Dr. V, and upon my first visit to her office, I did what any normal new patient would do...I filled out a mountain of paperwork.  Along with listing any medications I was taking and the allergies I suffered from, I wrote that I had trouble picking my feet up and walking, causing me to fall down a lot.  This was the same basic information I wrote on any new paperwork, as at that time I had no diagnosis for my symptoms.  Finally I was sitting in a treatment room, waiting for the doctor.  When Dr. V came in, I liked her know how it is when you see a doctor with NO bedside manner whatsoever?  Well, I could tell from the first moment that she had PLENTY!  After introducing herself she started reading through my paperwork, discovering that I had this problem with my legs...and proceeded to flip my hands over to look at my thumbs.  What's she doing? I thought to myself...and in the next instant my world became a whole lot clearer!  As I mentioned before, this was when I first learned about Charcot Marie Tooth syndrome, and she was able to tell that I had it (before confirming it with a blood test,) by the fact that my thumb muscles were mostly gone.  In past posts I have talked about how you can experience a loss of hand function when you have CMT.  It can often cause your thumb muscles to atrophy, and mine had done so around age thirteen when my symptoms really started to show.  One more weird thing on my list of "Don't Know Whys."  Hmmm...DON'T KNOW WHY those disappeared, but it's rather annoying!

I was very lucky to find Dr. V, and she's still my primary doctor going on 14 years now.  What I truly love about her is that she always explores Eastern alternatives with me and encourages me to continue with things such as acupuncture, Chinese herbs, hypnosis...just to name a few!  And when Dr. V doesn't know the answer to something, she admits it, and does research to try and find the answer.  And this finally brings me to my main point:  Doctors don't know EVERYTHING.  I think this is a very important fact for us to remember as we choose our doctors, whether it's a primary care physician...neurologist...physical therapist...acupuncturist...the list goes on.  The fact of the matter is, we are the most aware of how we feel.  If a medication makes us sick, an exercise hurts us, or orthotics aren't helping us walk the way they should, we will know that sooner than anyone else.  We need to be proactive in our own care, informing the specialists when something isn't right and asking questions.  Most of all, we need to be our own advocates because as adults no one else can fight for our rights and our health like we can!

This may not seem like a very important topic to everyone, especially people who have not faced many health concerns in their lives.  Though eventually, everybody will have some sort of health problem they need to deal with, so learning how to be proactive about your own medical care is crucial at any age and state of health.  I have been fortunate this past year to meet other people with CMT, and in listening to their stories (often very similar to my own) it saddens me to hear them say things like "The doctor told me I'll be in a wheelchair in 10 years," or "They told me these were the right type of braces for me, but I still fall down sometimes, and they hurt my feet."  And it saddens me even more when I realize that some of these people have never looked beyond those answers to see what else is possible.  And I have to wonder why?  With a disorder such as Charcot Marie Tooth syndrome, where most people have never even heard the funny name, why would someone choose to take those 'final' answers and accept them as truth?  I know a few things to be true when it comes to CMT.  I know I will need braces to walk.  I know I will have hand issues and have to adapt how I do things in order to accomplish everyday tasks.  But as little as two years ago someone could have said to me "You will never be able to walk backward, touching heel to toe," and guess what?  I do that now, twice a week in the pool WITHOUT braces.  Can I walk that way on land yet?  No...though who knows?  Never say never!  With the improvements I've made from going to the pool and the benefits from my new braces, I may be doing that soon!  If I had accepted life as it was a few years ago, I would be in a wheelchair right now.  But I wouldn't accept it, and was determined to find something better for myself...because of that, I found my new braces.  And then I found my wonderful pool therapists...and the rest, as they say, is history!

With having CMT, a syndrome which often goes undiagnosed for years and isn't well known--even by the specialists, I don't believe you should ever give up.  Right now research is being conducted and the results are very a few short years we may finally have a drug that will stop the progression of CMT.  So take my advice, dear readers, and become your own health advocate.  Do this whether you have a disability, diabetes, a heart condition...even if you are in perfect health.  If you are unhappy with your doctors, search for new ones.  If something isn't right with your health care, speak up and let your doctors know.    And always remember that the possibilities are do your research, and know what your options are!  And if you happen to see a woman walking backward/heel to toe through the mall, don't be's just me.  Really, I'm not crazy...I'm just practicing!     

Sunday, December 5, 2010

Are you kidding??

I have to share this ridiculous thing I recently heard on the news the other day, when I was visiting with my parents.  Now, I'm not a news watcher...I have to admit.  Most of my information comes second hand.  When someone says, "Did you hear about the...?" and I admit that I haven't heard the latest news, they are usually nice enough to fill me in.   Maybe I should be more would be the adult thing to do!  But I just can't bring myself to watch.  I find that most of the half hour is filled with such negativity and sadness, it HURTS me.  Even the weather can be quite depressing, seeing as how I live in New York where we often have lovely, rainy and snowy days!  And I find that they often sneak a dead body in when you LEAST EXPECT IT, and that's just not right.  To sit through all of that Cheerfulness just to get to the one NICE story at the end, is just too much!

So the fact that I heard this story at all is a total fluke.  My father is an avid news watcher unlike me, and not only sits through the local news but the world news as well...and although I normally will leave the room and read, or just go home, this time I didn't.  And one story in particular just threw me!  The anchorwoman was discussing our country's serious childhood diabetes epidemic.  Which IS a serious that all parents should be aware of, in this fast-paced, fast-food country we live in.  It wasn't the story in itself that I found ridiculous, it was the current response to this epidemic that I just couldn't believe!  It talked about local schools making the decision to ban classroom birthday celebrations, no longer allowing the students to bring in cupcakes and/or cookies on their special day.  As you know, children who suffer from type 2 diabetes do so, all because of that cupcake they had back in October when Brittney turned eight.  Really?  Are we really going to blame little Brittney for this problem, people??

Now, it's been a while since I've been a student, but I did teach for seven years...and although I wasn't forced to eat the wonderful school lunches, I often had children eat in my room on days when they couldn't handle the social aspect of eating in the cafeteria.  So I've seen the food they serve the students, and let me tell hasn't improved much.  The amount of preservatives and fat in one piece of cardboard-flavored, cheese-covered pizza must be astronomical...And if a vegetable ever actually landed on one of those pieces, it would probably burst into flames!  I know schools don't serve wholesome, organic and healthy food--it costs more money, and they usually don't plan for it in the school budget.  Though really...if the school administrators truly believe this health concern can be solved by banning birthday parties, they need to take a serious look at their lunch menus.  And school lunches are not the only contributor to this epidemic, either!  Parents need to think twice before pulling into the McDonald's drive thru...or packing their shopping carts full of processed food.  If you need to ask yourself, "Should meat be in a box??" then it's probably not a good idea to buy it.  Put the processed meat that's wrapped in plastic back on the shelf and WALK AWAY.

And as if this wasn't enough, I got to hear what local schools plan on doing INSTEAD of having classroom birthday parties.  When little Brittney turns nine next year, instead of bringing in cupcakes to share with her friends, she will get an extra 1/2 hour of GYM class.  Oh...JOY!  As a person who is very fond of her birthday, I would be quite offended if I were forced to withstand an extra 1/2 hour of my least favorite class on my special day.  I knew girls in HS who claimed to have cramps so often, in order to get OUT of gym, I'm surprised they weren't hospitalized!  So my question is this:  Has the school system, in it's infinite wisdom, thought about what the students could do if they DON'T like gym class?  Or are they just assuming once again that every child is the same, and longs to be on the basketball court?  What about the disabled, uncoordinated, or just plain clumsy students who prefer books and pencils to P.E.?  What if little Brittney would rather play her french horn than a game of volleyball...or paint a picture rather than run the mile?  Will that be allowed??

I truly believe that school administrators need to think more about this diabetic epidemic.  I commend their efforts and am pleased that they are considering it as an important issue, because it is a serious problem...though I also believe the path they have chosen to solve this epidemic is the wrong path to take.  In the end, after all their efforts, they may find that there are still a large number of children in their schools suffering from childhood diabetes due to poor diet.  If they choose to make the decision to ban classroom birthday celebrations, fine...though it shouldn't stop there!  A more proactive role should be taken to improve the food served in schools, and possibly nutrition classes offered to parents and students alike.  As a whole, schools and families can work together to adopt a healthier diet and begin to improve the health of all our children.  And those students who like sports and have athletic talent can enjoy their extra 1/2 hour of gym...personally, I think I'll go and join Brittney in the music room.  We have a french horn piece to practice, and I'm a little rusty!