What a night this was! I was so proud to be with Jenica and Gary as they put on this amazing night for a cause close to their hearts: Lipedema. They both put so much time and hard work into everything; the food, the auction items, the advertising, the organizing...and the hard work paid off becaue the night went off without a hitch.
It was Jenica's goal to raise both money and awareness of this often misdiagnosed disease. Together with their family and friends they ended up raising over $4000 for the
Cure Lipedema Foundation (check out their
site for spokesperson Beau Dunn's personal "thank you" to Jenica!), and Jenica was able to acheive both goals as everyone left educated and inspired. I'll post Jenica's sweet speech at the end of this post if you're interested in learning more about the disease and the reason behind the auction.
Jenica, you were a star that night and I am so glad I could be part of it! Love you!
Jenica's Speech:
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Welcome everyone, and THANKYOU for coming out to support this cause. Your love and support means so much to me and it really gives a warm feeling to know that so many people care.
For those of you who may not know what Lipedema is, I will just share with you what I know. You may even know someone with the same body description and the same complaints about pain and therefore this night will all have been worth it if you can make someone else aware of this condition. It's a very misdiagnosed condition in Canada and the United States, and therefore treatment is nearly impossible to get here. In General Lipedema is a painful fat disorder which affects the adipose tissue of the skin and it occurs exclusively in women. Swelling often extends from the waist down, almost in a distinct line towards the ankles.
Some of you may look at me and think " there is no way that she could have a fat disorder" but you would be amazed what pants can hide when you are in Stage 1 of the disease like I am. Some of you may have noticed that I don't wear skirts, dresses, bathing suits etc. as I am very self conscience of my lower body image.
If Lipedema is untreated it can cause a multiple number of health problems leading to mobility issues. I have some information printed out and if you will take the time to read it, you will know what I am talking. The pictures on the pamphlet will tell the story. Most cases generally develop during puberty which is where MY story begins.
Having started puberty rather late in life at about the age of 18, I noticed that my legs were a bit swollen and mentioned it to my doctor and was told "you just have thick legs". At that time I didn't have any of the pain associated with Lipedema, so I tried to ignore that it was there. Because Lipedema is brought on by hormonal changes, I didn't have the next run in with it until I was pregnant with Quinn. My legs became huge and again asked the doctor about it and was told "it is just pregnancy fluid and it will go away" once you have the baby.
A year later the swelling was still there and increasing and that's when the pain started, I remember going to the family doctor and telling him I felt like I had the flu "you know when your body aches" but just from the waist down. I told him my legs were very restless, resulting in me not getting a descent night's sleep. He told me at that time to take vitamin B and that I was probably lacking it.... but he did not give me anything for the swelling. So off I went to take vitamin B.
Well that didn't seem to fix the problem, so I went to see a specialist in internal medicine and he diagnosed me with Lymphedema. You see, Lipedema is not well known to many doctors here. The specialist told me to wear compression stockings and it would go away. Well, that didn't happen. Also with Lymphedema it is not painful and there is pitting if you press the skin in, where as Lipedema is painful and non-pitting.
So after that not being of much help, I looked into seeing a Lymphatic massage person who told me that I have Lipedema not lymphedema. !! So she gave me massages which helped with the pain management.
My Aunt also had Lipedema and Lymphadema hers had worsened over time as she had Lymph node cancer as well and the Chemo does not spare the Lymphatic system. She passed away a year ago and I could really relate to her as she had this same condition as I do. She had not gotten any treatments for her Lipedema and she always said she wished more could have been done.
I will be traveling to Germany in May to get a tumescent liposuction procedure done which is performed on Lipedema patients there. It consists of taking out those fat nodules that are causing pain and swelling. Studies show that it is supposed to take away 95 percent of the pain and help a bit with the visual effects. It can arrest the symptoms from going to stage two and three for up to 10 years. Although Lipedema is Chronic, and there is no cure for it, this seems to be the best long term treatment thus far. I will have to go to Germany three times this year as they can't do it all at one time. I am hoping for the best and that this will work for me.
There are a few people I would like to thank tonight. The first being my husband who has stood by me and supported me throughout this process. He has helped immensely in making this auction happen. Thanks honey, you're the best!
As most of you know my mother in law Pat has come in and learned how to perform lymphatic massage and has been giving me treatments of up to 3-4 times a week now for about 1/2 year. She has been such a great support system for me ! I am so thankful to her for all she does. You are truly an amazing person.
I also want to thank Uncle Tony and Aunt Margo for genuinely being so interested and looking up research, this support means so much to me.. to know that someone cares that much to go out of their way is something to be thankful for.
Also to Becky and Ron for bringing the PA system.... without their help you probably would not be able to hear me !!
Thank you to all the family, friends and businesses who have donated for tonights auction. People have come out of the wood work to help out which has made me feel so loved and grateful. And a big thank you to all of you for coming here tonight to learn about what lipedema is, which was the main reason I wanted to host this auction. All proceeds will be going to the Lipedema Foundation by Beau Dunn and Dr. Karen Hurst for research and to spread awareness. We hope that someday Canadian and American doctors will ALL know about Lipedema so people can be properly diagnosed.
Thanks again for coming and I hope everyone had a great time.
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