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  Leeanna c hi everyone, I am a patient of primary lymphedema. I am 26 years of age and completely mortified of the near future because of this relatively unknown disease...its so terrifying to not be able to know exactly what is going on inside you, not be able to...  morehi everyone, I am a patient of primary lymphedema. I am 26 years of age and completely mortified of the near future because of this relatively unknown disease...its so terrifying to not be able to know exactly what is going on inside you, not be able to stop the deterioration, and for doctors to tell me they cant help me...specialists online have recommended that weight gain causes adverse effects on the limb, so how am I supposed to have kids? how can I live a fulfilling life ? whatever I do from here forth is at my own risk, I have to stop and think will this action do more damage to my condition!!! not able to have definitive do's and don'ts makes life such a drone, im so reluctant to do anything at all....his condition has make my days feel like punishment...some people tell me look at these cancer patients and at their struggle...as usual, the ignorance of people to this condition leads them to compare us to others. However unlike cancer patients, there is no real treatment across the board for us lymphedema patients... I reside in Trinidad, I don't have access to any of these therapy centers in America, or decongestive pumps etc.. There is no doctor here who knows of any of these forms of treatment. I was told by 3 doctors to use the compression, and continue living my life ....but what are my limits?! what will happen to me!! there is nobody here who can monitor me to be able to tell me if im improving or deteriorating!!!! im basically fighting this thing on my own! I thank God I encountered this community I am hoping everyone here help each other and be open and honest because I believe the people who have undergone this battle will have the most valuable contribution to help the rest of us.. Please share your experience, share with me what works best for you, tell me what are the things you can and cannot do, I beg of you to please help me through this
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  • July 20, 2013

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    Monique Hatch Leeanna, thank you for sharing your feelings and concerns. I completely understand your feelings of anxiety and worry and wanting to have a full life despite lymphedema. Please know that everything will work out. It takes a lot of effort to maintain...  moreLeeanna, thank you for sharing your feelings and concerns. I completely understand your feelings of anxiety and worry and wanting to have a full life despite lymphedema. Please know that everything will work out. It takes a lot of effort to maintain lymphedema but lymphedema does not preclude you from living a full life. I was diagnosed 13 years ago with primary lymphedema and I lived for literally years avoiding different kinds of activities and resenting my condition for keeping me from living life. Then one day I decided that if I'm healthy, why not try new things. I've traveled, started running, learned to ride a motorcycle, tried wakeboarding, etc. Honestly, I'm happier now than I have ever been with my husband and 11 month old little girl. My only regret is that I let my condition keep me living sooner. Recently, I've been writing on my blog about my experiences. I want to help people like us realize that they can live a full life - even with lymphedema. I'd love it if you checked it out....    less

    • July 20, 2013
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    Leeanna c hi Monique, thank you sooooo much for your reply!! I just realize there is a limit to the post and half of my msg was cut off. and yours also so I didn't get the full site you left for me...here is the remainder of my msg.." I reside in Trinidad, I don't...  morehi Monique, thank you sooooo much for your reply!! I just realize there is a limit to the post and half of my msg was cut off. and yours also so I didn't get the full site you left for me...here is the remainder of my msg.." I reside in Trinidad, I don't have access to any of these therapy centers in America, or decongestive pumps etc.. There is no doctor here who knows of any of these forms of treatment. I was told by 3 doctors to use the compression, and continue living my life ....but what are my limits?! what will happen to me!! there is nobody here who can monitor me to be able to tell me if im improving or deteriorating!!!! im basically fighting this thing on my own! I thank God I encountered this community I am hoping everyone here help each other and be open and honest because I believe the people who have undergone this battle will have the most valuable contribution to help the rest of us.. Please share your experience, share with me what works best for you, tell me what are the things you...    less

    • July 20, 2013
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    Leeanna c tell me what are the things you can and cannot do, I beg of you to please help me through this

    • July 20, 2013
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    Leeanna c Hi Monique, you have very beautiful pictures of you and your baby. thank u for taking the time to read my msg.Your reply comes straight from the heart& I really appreciate hearing those words. You don't know how bad my depression has become, I am so...  moreHi Monique, you have very beautiful pictures of you and your baby. thank u for taking the time to read my msg.Your reply comes straight from the heart& I really appreciate hearing those words. You don't know how bad my depression has become, I am so close to resigning my job, just because im afraid that my life will be cut in half if I stand all day at work..im so terrified of putting my foot on the ground, I jus sit all day long, I don't go to work, I am much like a living dead..all I ever read freom people's stories were amputation to save life, and really outrageous bad outcomes..you are the first I met to have anything positive to say, I dearly thank you.for sharing your strength with me, for this I cannot ever repay you Monique  less

    • July 20, 2013
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    Monique Hatch Leeanna, thanks for reposting the rest of your msg and letting me know that mine was cut off as well. Here is the site. http://www.lymphedemarunner.com

    • July 20, 2013
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    Monique Hatch Leeanna, I remember clearly what it was like to be newly diagnosed and trying to find answers to my questions. Please don't lose hope. I'm not sure what options of healthcare you have available to you in Trinidad but I'll do my best to make you aware...  moreLeeanna, I remember clearly what it was like to be newly diagnosed and trying to find answers to my questions. Please don't lose hope. I'm not sure what options of healthcare you have available to you in Trinidad but I'll do my best to make you aware of resources online that could help you. I recently came across the Lymphedema Blog with a post about Manual Lymph Decongestion. Here's the site. http://www.lymphedemablog.com. It also has a lot of good information about Lymphedema care and research. I hope this helps.  less

    • July 20, 2013
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    Monique Hatch Also on Facebook, look up Lymphedema Guru and also National Lymphedema Network. These are great resources as well that post about current information and research relating to lymphedema.

    • July 20, 2013
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    Monique Hatch Don't lose hope. Get all the information and education you can right now. Also, don't lose hope because of "worst-case-scenario" stories you'll surely find on the internet. That doesn't have to be your fate. In fact, your experience can be the...  moreDon't lose hope. Get all the information and education you can right now. Also, don't lose hope because of "worst-case-scenario" stories you'll surely find on the internet. That doesn't have to be your fate. In fact, your experience can be the complete opposite. As far as what you are able to do and not do, that depends on your current condition and health. For now, just try to stay positive while doing some research. I'm not a health care professional but if you want to know about my experience, just message me  less

    • July 20, 2013
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