Living Life to the Fullest truncal lymphedema

A Twinkle In Her Eye

Ever struggle with self-esteem and body image issues? Living with lymphedema has both physical and psychological impacts. Read on for Mary’s story on how she lives with full body systemic LE as the result of hypothermia. The endocrine issue that caused the hypothermia five years ago for her is called Idiopathic Hypothalamic disorder.

It would take 3 years to be correctly diagnosed with LE. Her hope is that it encourages others reading it to look at themselves and realize how beautiful and amazing they really are; to remind them that LE does not define them.

Note: The following was posted in a closed Facebook online support group. Mary gave permission for it to be shared. I did not alter the original post, because I felt that it demonstrates how we can become so emotional when writing a cathartic post like this. I think most of you understand what I mean.

Mary’s Story

Been debating sharing this or not it is really long ..

.., I guess I want to share a little about self image and the huge changes so many of us seem to struggle with. Last week I shared I was having a boudoir photo shoot and mentioned how hard it was for me to not call and cancel it..

I know many who look at the photo I am going to share may not have a clue that this is not the me that I had been for over 50 years before secondary systemic LE came into my life. The lady in the photo looks pretty pulled together with no photoshop and yes I am pushing through my mid 50s..

This is the new me that I am coming to terms and she is feeling empowered after sticking to her guns and not letting LE push her to canceling this photoshoot for a 3rd time.

It was hard to hit the point of realizing I have been using my LE as an excuse in life and seriously letting it define who I have been since the diagnoses several years ago. By that I had to take a hard look back at my life and honestly it was not easy and making more changes now is really going to continue to be uncomfortable as I push myself through the attitude I have developed since having LE that has been excuse after excuse…

I should explain to those not familiar with me on the group that my LE is secondary and systemic which means I have it all through my body but also in my face and head I also still deal with the endocrine issue that got me here. But thats all part of the life challenge.. Right..

I think a few of those with LE will be able to read this and shake their head.. LOL Going into an almost nude photoshoot that was a gift from my loved one in hopes he could remind me that he still finds me to be one sexy lady. How many of us forget that with LE we have a loved one who may miss us when we become so wrapped up with our body image. I sure the heck did. I am looking at you gent too…

I canceled my first shoot because I had swelled from a size 14 to a 20. LOL and let me say this is not always pretty as many of you know one side may look great the other side like someone hooked an air hose in and set it on balloon mode..LOL Next one canceled because my LE changed it up a little on me again and I just could not be comfortable not to mention what to wear.

I was crying and upset because nothing fit, I have these gorgeous thigh high boots that look great when my LE is in check or back before. I used to love to wear corsets as dress up with my long flowing velvet skirts, No go with my truncal swelling and one breast running a cup size larger not happening. I realized how blessed I am, my sweety sat down with me and helped tell me how attractive he still finds me lumps, bumps and brain issues all together.

He went online and found me new boots that have an extra width calf and wide foot that fit me even when I swell now days. He pulled his favorite clothes from my closet that he loves seeing me in because my eyes sparkle..I know these all seem physical and its true because I had gotten to the point I let my Lymph Edema push me into seeing only the physical side of me, the pain which I have in control had also came to define me. The facial aspects of looking in the mirror and not knowing the girl with one side bigger then the other, LOL and gosh knows for some reason I let that also define me since at its worse I get swelling in my brain that causes thought , process and speech issues that have made me feel less then intelligent..

The Lady I lived with for 50 years did not have all this baggage.. The new woman I have been growing into was getting so focused on being dragged down, and tired from the illnesses she lost that spark of life.

Now going into the photoshoot the photographer, hair and makeup gals all were amazing. Sitting down with them before we got started we talked about body image issues. They asked why I was concerned about the side of my face that had fluid down in my cheek and into my neck, reminding me it looks bigger to me then what most people see. They reminded me by the time my hair was down and my makeup was on it would start to disappear. I knew this it’s taken me years to learn to do hair and makeup as camouflage. My incredible photographer pushed that the angles and lighting would make this so much less obvious. I knew this I used to shoot photography but apparently needed the reminder.

Then we moved down to the other issues, from others I realize many people just think I gain and lose weight and inches often without understanding it is my Lymphedema. Others in the group understand this one..I spent some time explaining to these ladies it is very hard to look in a mirror let alone do photos like these when you do not recognize the person because of the changes let alone how it feels to step out of the house in one size of clothing or even wearing shoes and by the time you come home your 3 to 5 sizes larger or you have had to remove your shoes earlier or try to figure out how to get them off ..Because none of these gals had seen me before LE they did not understand my face shape used to be, nor that my body had hour glass curves like my momma used to. They were seeing the girl with 3 inches of truncal swelling , one breast a dd and the other a ddd. One hip with bump out that is and inch and a half more then the other side, thighs with 3 inches of swelling LOL and calves and feet that were special..

I was not feeling pretty,, But you know what, they sure the heck made me feel pampered, and pretty. The photographer was even able to make that hip look sexy that kept rolling the stocking down on its own.. The photos show a person I want to get to know much better minus all the lymphedema labeling and baggage that I have allowed to accumulate..

The photo shoot was not easy on my body, just a few years ago I was extremely flexible, last week not so much the back arching and the neck arching, lol ,the poor photographer constantly saying get that chin up, you will thank me later paid off. LOL and not just in the photos but after forcing my body to really push itself in these angles I had some major drainage my neck went down an inch in three days, the pressure in my ears has dropped, the swelling off my face decreased which also helped release pressure in my brain. My truncal swelling is down an inch and a half and I have not lost my breath once since this happened because my truncal swelling puts pressure on my lung that was damaged alongside my lymph system. Who knew even with my yoga and TTapp I could get that kind of drainage from posing for pictures..

It is an odd thing but I really have to give my sweetheart credit for his gift which at first i was ticked off about thinking why would he do this to me ,, Look at me these days.This week I feel like my entire self image has changed, I look in the mirror and I am not seeing my mid 50s 210lb lymphy body, I am now seeing a beautiful lady who just happens to have lymphedema swelling. Just because things get so stretched out of shape does not mean I have to be anymore .

So now that I have shared a crazy journey I want to say,Look at who you are, and gosh knows I understand it is hard to change the concept of self image especially for us. But really no matter what you see in that mirror or a photo think about what beauty others are seeing. I am over wanting to kill my sweetheart for his gift the look in his eyes when he has listened to me talk this week and the change in my attitude have been priceless.. totally priceless me actually realizing this made it even more priceless,

Getting the photos yesterday and seeing the twinkle in my eye and the reminder of who and what others see when they look at me Lymphedema and all, I know myself I will no longer let it define who I am nor use it for an excuse again..


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