September 10, 2012

Invisible Chronic Illness Awareness Week

September 10th - 16th is National Invisible Chronic Illness Awareness Week.  And I am so excited because just thinking about it has brought up so many things I have wanted to share and haven't yet.  Hopefully I can fit it all in this week.  

What is an Invisible Chronic Illness?  Pretty self explanatory.  Invisible is unseen.  Chronic is an illness that will have a long term effect though not always permanent.  Like in my case.  I have Budd Chiari Syndrome.  I have blood clots in my liver, blocking the blood flow from my liver back to my heart.  If you saw me at the store or walking home from the bus stop with my son, you would never know I was sick.  Now if you sat down and talked to me, stuck around for a few hours to watch my meds take their toll on me in the mornings, or go with me to one of my many Drs appointments, you would get a little bit of a better view.  But seeing as you can't that's why I started this blog in the first place to share with my family and friends what was going on.  And not for attention, which I've been accused of before, but Ill write about that later!  

For now I just want to kick off the week.  Today is the first day of the Virtual Conference.  And let me tell you how much I LOVE this.  I have a lot of blogger buddies who are always off to some conference or what not and I get a little...jealous maybe.  I would love to fly to another state, spend the night in a nice hotel, attend these amazing workshops and seminars.  But instead, here I am, in pajamas, trying to stay awake long enough to finish this.  Debating if I can squeeze in a nap before my son gets home from school and my In Laws pick me up to take me grocery shopping.  Oh and I'm in my pajamas instead of some super hot outfit I fell in love with on Pinterest and bought just for the occasion.  So you can see why I love it so.  Any why I know it will be just what others who are sick will love it too!

I just watched the first seminar titled What to Say, What Not to Say and How to Help.  I was watching and kept saying "exactly" "yes"  "oh I hate that"  "oh I like that!"   You would not believe the words that have come out of peoples mouths when they talk about my being sick.  The ever so popular "But you don't look sick"  Or the "Damn, you do look sick"  There is just now winning sometimes.  I would trade looking good for feeling good any day.  I'd deal with piling on the make up over dealing with getting deathly sick and facing a liver transplant easily!  But its just not an option for me.

I'm sharing the video from this morning.  Its long, but if you ever wonder what are some things to say or not say, you really should check it out.  Wayne is so supportive.  And I love how he mentions how he was met her after she was diagnosed and was "smitten".  Because keeping a relationship working through an illness is hard, I cant imagine starting one.  Just another thing Ill touch on later ;-)



The next seminar is with Laurie Edwards about Pregnancy, Parenting and Chronic Illness.  Im really looking forward to this.  I was actaully pregnant when I was diagnosed.  I cant wait to see what she has to say.  And the best part is, that because its a virtual conference, I can replay it when I get back from running my errands.  And probably from the comfort of my own bed!  


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