My mom called me this morning at 2am.  They have taken my dad to the ER.  He is having issues with being dizzy.  We think he is low on blood again.  He's been passing a lot of large clots from the bladder again.  They had to take his catheter out a few days ago because the clots were clogging the tubes even after trying to flush it out.  They will probably want to put another catheter back in.  I feel so bad for him, he's so worried and scared about things.  I would be too, not knowing what will happen from day to day.  My mom said to just stay home since it really isn't a matter of an emergency and she will call me back with some results.  I hate this for my mom and dad.  When will they ever just have some relief from all this stress.  So here is it now past 3am and I can't sleep worried sick about this.  Sometimes it is like life is just not fair.  To watch a person suffer so much, it just blows my mind on WHY.... WHY???  Cancer is a horrible thing. 

I'm going to try to make myself go back to sleep.  I have a hard enough time most nights and this makes it so much harder.

In light of this being breast cancer awareness I wanted to post this.  I know we have several members who either have had breast cancer or know someone who has.  They may also have lymphedema from the breast cancer.  Please pass this along to others. 

This article is very important.  This is for a study for breast cancer survivors with lymphedema.  I think the most important part of this article is also this:

Most medical schools don't teach the lymphatic system at all. A national survey conducted by Rockson showed that the average time spent on teaching the lymphatic system during a four-year medical education is 15 minutes.

That is so sad!  We need more education on this!  15 minutes being spent on such a vast part of our bodies is just unimaginable.

Here's a link to the article:

http://biz.yahoo.com/bw/071009/20071009006368.html?.v=1

Wow, what an amazing weekend I just had.  It was a weekend I'll never forget.  I met some people who have changed my life in the years I've been knowing them, and I never met one who didn't know they had changed my life.  Let me explain.

First, thanks everyone who sent me birthday wishes!  I had a wonderful birthday!  Sarah made this cute birthday card for me and I had to share.  Thanks Sarah!


Ummmm yes we did have cake!



It is hard for me to believe I am now 31 years old.  I use to feel 85 before my surgery and now I feel like a teenager again.  The difference is amazing.  I celebrated my birthday in Atlanta this weekend.  I was away from Kenneth and missed him.  He did got me lots of things with butterflies, some beautiful gold earrings and pendant.  He got me some flowers when I came home yesterday and made me dinner.  He is truly a special man!  
Over the weekend I met some people who have saved my life in so many ways.  Pat O'Connor many years ago started a website called www.lymphedemapeople.com I had joined a yahoo group when I was first looking for information about lymphedema and he was one of the first to respond to me and helped me get help.  I am thankful to him.  I had the pleasure of getting a photo with him.  Pat has been suffering with lymphedema for many many years, they have traced lymphedema back in his family since 1890.  You can read more about Pat on his site.


Then there is Joan White, the founder of LightHouse Lymphedema Network who organized the event weekend.  She has an amazing drive and has really been key in spreading the word about lymphedema to the professionals and getting those suffering from LE the support they need.



Probably the most emotional part of this weekend was a class I attended.  It was a open forum to talk with Dr. Paula Stewart & Kathleen Francis.  I had asked a question during the forum about plastic surgery & lymphedema.  During the meeting I kept looking around the room, this lady behind me looked familiar, but I couldn't place where I had known her.  So low and behold after the meeting she came up to me and said you had a question about plastic surgery and I said yes, she told me she had some done on her arm.  I said oh I've had that done and also the tummy tuck from all the weight I've lost.  So somehow we got on the subject of surgery.  She told me she had surgery too.  Then I said... What is your name.  I looked down at her name tag.  It was Teresa!!   Anyone who has read my story in the OH magazine  knows the part I talk of about finding out about lymphedema.  It was a lady at a support group for weight loss surgery who told me I must have it and how to look up more information about it.  I got tears in my eyes and she looked at me weird.  I said.... Do you know you probably saved my life?  She said... HUH?  Your surgeon saves your life.  I said I know, but do you know who I am.  She was so lost.  So I got my photo book out from when I was in a wheelchair, that was when I saw her 4 years ago!  She said.  OH MY GOSH.  That is YOU.  I remember you.  I cannot believe it.  I told her that she is the reason I searched out lymphedema, she is the reason I figured out what I had.  It was a moment I'll never forget and I'm so upset I wasn't able to catch her to get a photo before she left!  UGH.  However, I have her information from the sheet they passed out to be able to contact attendees!  
I then attended a meeting about lymphedema & obesity.  I talked with so many professionals this weekend who have told me the rise of patients who are obese that have lymphedema is a large portion.  They are not all super obese like I was, but they are seeing more and more.  There appears to be a link there, but no studies have been done as of yet.  They really need more information about this.  In fact the message from this weekend is clear.  The word about lymphedema is not getting out enough still.  So many people are suffering without any knowledge of the condition and medical professionals especially if you are obese are telling them they have edema or that they are "fat".  I heard so many stories about people who have been  misdiagnosed.  I saw people like I once was in wheelchairs, immobile from this condition.  I reached out to each one of them with my story, just letting them know they are not alone and can do this!  It is so real and I wish I could help them all.  My next plans are to continue to attend any meetings I can about lymphedema in the future.  They have the large meeting in San Diego next year.  I am going to see what I can do to make that meeting.  I really want to attend it.  Registration alone is $500!  Plus the fight out, but this really is a mission for me to help others and learn ways to advocate to the government the need to cover treatments/bandages/compression hose for those with Medicare/Medicaid.  The treatments are often cut off for people because of the clause in their plan for "physical therapy" and also the bandages are classified as durable medical supplies even though they are a MUST in having the wrapping done.  It is such a sad situation.  
I went away with a re-newed spirit that I must continue to educate others about lymphedema and support others suffering from it.  My journey is far from being over.