Lady In Hiding

When I have someone take a photo of me I always ask them to take it from the waist up. The same goes for videos. I hate showing my whole body. I have lived years and years in the scrutiny of others so much that I decided why put myself out there to allow myself to be hurt by the ones I care about. Social Media didn’t exist when I was younger.  The only way to share pictures was by having the film processed and sharing them or a Polaroid. As I grew older and computers became more available to us, we shared via email. I have always loved Photography and through the years I became exceptionally good at capturing the best of nature, people , Places and animals.

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It became easy for me to hide behind the scenes because I always had my camera. If I was the one taking the pictures then there was no need for someone to take a photo of me.  It was normal for me to have my camera everywhere I went. I have thousands and thousands of pictures. Not to long ago I asked a friend to take a video of me while I was singing. I asked him to be sure to take the video from the waist up. Later that evening I watched it and my heart sank because my hips and bottom were clearly visible in the video. I was disappointed. My fiancee takes photos of me all the time showing my whole body, I get upset with him and ask him please don’t post that or share it…. he will simply state it’s his photo and he has no problem with the way I look.   Wow, that man really does love me. He loves all of me.

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I often wonder when I started to become so self conscious. when did I start hiding? I am pretty sure that it started when I was still married to my ex. He was the kind of guy that like to keep me hidden as well.  I never met his friends, never went to his work, never to a office party… and when we did run in to someone he knew I could tell he was ashamed to be seen with me.  A few times he made sure I knew it. I was ashamed of myself too. When we would go grocery shopping, he went one way and I went the other. I became so conditioned to this way of living that even after we adopted children, I hid from their friends and the kids parents, it was a never ending cycle of shame. Through all of it ,  I really don’t hate him.  I don’t get angry anymore at what i went through then.  I just wished I would have loved myself more than I did during those years.

Now I am in a place where I now have to grasp the fact that I am this way because this is how God molded me.  I don’t have to fear eating something and feeling really bad about it… I can quit being angry at myself. Now my anger turns elsewhere. It turns to all the doctors that I visited and begged for answers, pleaded in fact. It goes to all those people out there that didn’t want to take to the time to know me without casting judgement.  Going out to restaurants was hard because I worried about whether I could sit in their chairs, because if  they had arms on them… I couldn’t fit in them usually.  It wasn’t just dining out that was problematic, it was everything… going to peoples homes, sitting in the front seat of cars comfortably, doctor’s office waiting rooms….  the list goes on and on and then there is Social Media.

Having a social media account has its pros and cons.  I love the fact that am able to keep up with all my family members, friends from high school, my kids.  I am blessed everyday to send messages and receive messages, post pictures and share with groups and create groups.  IT really has been nice, all the while I have stayed hidden behind the computer and the lenses of a camera.  I couldn’t dare let my grade school and high school friends see all of me because I was, in my mind …3 times larger than I was in high school.  With Social media comes the sad side of things to.  Like when you hear of a friends passing away by someones post… or the cruelty and harsh words of a stranger that just so happens to take a photo of you while you are dining out with friends and plasters it all over the internet calling you names and thinking that they are funny when in fact they should be ashamed of themselves.

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I am learning now that there will always be someone out there that will have something bad or negative to say.  People are just that blind and oblivious to others and what they are going through. Until they walk a day in my shoes or any other lady that has been diagnosed with Lipedema, they will remain clueless.  I didn’t realize just how much I had these types of people hurt me and affect me until I started writing this blog and wanted to share pictures… I never noticed how often I hid behind everyone because I didn’t want to show myself as I really am.  I found lots and lots of photos from the waist up, even with my children… some how all these years I managed to hide.  I don’t want to be that person anymore. I want to start accepting myself as I am. I know that learning all that I have this far, I can’t really stay angry at myself…. I can’t expect miracles and I can’t hide because my family needs me. It’s about time I let the world know that YES  I am a very large woman, but I am also a large woman with feelings and I am learning to love myself and if you can’t open your eyes and see me without prejudice then keep walking by because I don’t care anymore!  I don’t eat with you, I don’t live with you and I don’t owe you any explanation and further more… you don’t deserve it.

Awareness comes from speaking out, it comes from sharing, it comes from putting it out there for all to see. Awareness comes from being educated and teaching,  it comes from listening and learning.  I am still learning. I am still speaking for those who feel just as I do.  Those ladies that struggle with everyday activities just as I do, the ones who for many years couldn’t understand “why me?” ….. the ladies who drain their savings or whose families do all kind of fundraisers to help them get costly surgeries to help them have better qualities of life…. the ladies who hid behind the cameras or whose heart races at the thought of meeting someone new,  or running the opposite way when someone stops in for a visit unexpectedly….. We are all human, we are all learning and we are all praying that someone cares just enough to say  ” what can I do to help you make more people aware?”……………

I would simply say ” you can start by sharing my blog with others “

I am no expert. I just want to help as many ladies as I can. I want them to know that I share their heartbreak.  I am ready to learn as much as I can.  I want to take pictures

and be OK with myself without worries of what others will say.  We are our biggest cheerleaders ladies.  Hugs and blessings to all.

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YOU DON’T KNOW ME

You don’t know me.  I could be, I would be your friend.

But instead you make me sad because I see your smirks  and grins.

How can you judge so easily, If you could just open your eyes and see,

I am a woman, a mother, a friend a sister and ” I love me”.

Some days my pain is horrible, I can not walk that far…

it is no easy feat just to make it to my car.

You don’t know me as you follow me through the store,

to take my picture from behind, to you it’s a score.

Let’s post it on Facebook, let’s say something mean…

You don’t know me as I see what you are doing…

inside I only scream.

You don’t know me, when I hide from folks like you,

I often try to hide, it’s all that I can do.

I hear the laughs, I see the looks… from kids and adults alike,

I pray to myself that I don’t lose it and decide to fight.

You don’t know me when I cry from the pain, or when your words hit me deep…

You don’t know when the pain won’t let me sleep.

I see you.  I lock eyes with you to call you out on being lame,

but you don’t care because you think it’s funny and to you it is a game.

Let’s snap a picture for all our friends to see, look at this fat lady she is so wide…

Have you ever seen hips like that?, again I try to hide…..

You don’t know me. My disorder is real. I can’t help the way I look and feel.

You don’t know me.. all your childish ways, not raised  with compassion for others,

For you I will Pray.  I am sad for your Mothers.

God made me this way, his love is never ending..

and as I don’t know you… I am forever mending the pain that you have caused me

I turn my head and look the other way,  You don’t matter and I thank God I woke up today!

 

Shelley R. Sunshine

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A Not So Princess Story!

I remember the very first time I looked at a wedding dress growing up.  I might have been ten. It was in a magazine. Fitting for a princess. I remember thinking to myself. .. “One day I will be a princess bride”, I was young and little girls can dream right?  I didn’t know my future,  I only knew that I didn’t have any problems believing that I would make a very pretty bride just like in the magazines.

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All those years I dreamed of being a princess bride.  I married my ex when I was 20. I had a nice wedding but it was NOT my dream wedding.  There were many factors that had to do with that, and maybe I had forgotten about that little girls plans for the moment.  Back then I was a size 12. My ex thought I should lose weight.  That was my first sign.  At a size 12 I thought I was beautiful, but he on the other hand felt I should lose weight?  What is wrong with people?

My mom wasn’t there for me because she died when I was 17, but I believe she would have given me some pretty good advice, and possibly taught me some valuable lessons along the way. I don’t regret that marriage. … but I do wish I had opened my eyes sooner to the sadness I was living.  I wanted to be his perfect wife. I was reminded constantly of how he thought I should be and what I wasn’t!   He never saw me as anything but over weight.  As the weight packed on,  I became a yo-yo  dieter all to please a man.  Thinking back I was 165 pounds at 5’8 ! What I wouldn’t give to see that size again.  I was certainly larger in the thighs and legs. …. but at least if I knew then what I know now I could make the changes to keep this awful nasty life sentence of a disorder at a distance. 

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If any single person could stop me and ask me to explain what I felt on a daily basis all those years. .. well I’m not sure what I would say.  I punished myself and tried very hard to make him happy and forgot about the person I was and started to hate the person I became. 

Now add this with trying to have children.  Yep..I carried a lot of guilt.  I also started infertility treatments.  Well because I had not been diagnosed with Lipoedema yet, I injected myself with hormones so that we could have a baby . Lipedema doesn’t work well with hormones, in fact it only makes it worse. You can imagine the weight I started packing on and all in my lower extremities.  Unhappy me , unhappy husband. …fluffy and still no kids. Like I said if I only knew. Years later we adopted two boys. By then the damage was done and evident.  You can only be put down so much.  Everyone thought I should be skinny.  I ate good , exercised.. but the weight just wouldn’t come off.  I finally quit trying.  I didn’t like the person I had become.  I was unhappy.  Depressed.  I cried daily.  I couldn’t even look in a mirror.  I didn’t shop for clothes often or would hide under them.  I was running from it all.  Finally it hit me like a hammer hits the head of a nail.  If I can’t make him happy, maybe I need to focus on me.  Maybe it was time for me to start loving myself again. I finally left him.  I had to move on. 

Now self acceptance is important.  If you can’t love yourself then how can someone else love you? 

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Now I can’t say that it was easy.  It was hard.  I learned a lot of lessons.  Some very hard ones in fact. I learned that there are lots of different people out there.  Some are not very nice or accepting of a woman my size.  I learned that loving myself in this body was important.  I finally met a wonderful man who loves and adores me just as I am. …and guess what?  He wants to marry me!  Now this should be great news. .. it is honestly.  But in my journey over the last 9 months of wanting to get in shape for this wedding so that I could feel beautiful in a dress that a little girl once dreamed of has become just that,  a dream because a month ago I learned that I in fact could not lose weight from the waist down without expensive surgery… six surgeries to be exact.  Imagine my disappointment.  The heartache. 

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How can I plan a wedding.  My dream wedding to the most amazing man a girl could ever ask for?  I never saw myself walking down the aisle as I am now.  I envisioned me as the most beautiful healthy bride taking my soon to be husbands breath away.  It’s heartbreaking to know that there is not much I can do.  Planning a honeymoon is just as heartbreaking.  Why? you ask… well I’m limited.  I am too large for flying or let’s say it would just be uncomfortable.  I have to pack stuff to treat my legs.  I won’t be up for a whole lot of activities, but I can’t say no to them either because “yes” there is a skinny girl in me that still doesn’t recognize my new limitations.  I’m happy and sad at the same time.  I have thought of postponing the wedding thinking some miracle will fall in my lap.  I think all of us ladies that have been dealt this fate hope and pray daily that a  “miracle” will happen.  That we can put the pain on pause. .. That we can erase it out of our lives.  If only it could be that easy.  Maybe tomorrow will be the day when I start finding happiness in my wedding planning again, since my diagnosis I have done nothing. .. maybe it’s depression. .. maybe it’s reality because I am realizing that the wedding I had always dreamed of with him is not possible now. Lipedema is a very ugly and cruel thing to live with.  It doesn’t go away with pills.  No diet will make it disappear.  Treatment is life long.  Everyday.  It’s painful.  It’s more expensive than any diet ! I have to learn to love myself. You see all those years I let others tag me as a fatty. I knew I was.  I allowed it to reflect who I was. …and “yes” I honestly thought that one day I would figure out a diet that works for me and I would then be my old skinny healthy me, again a girl can dream.  It didn’t matter how many diets I tried before, how many exercises I tried … how many times I failed because my body would keep letting me down.  One day .. Just one day something had to work, something would work. So getting getting diagnosed with Lipoedema is a cruel joke to me and I have to learn how to live with it!

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I have a great group of people supporting me with the most love and understanding I could ever ask for!  Without them I would be very lost.  I love that they are still right here by my side.  As I learn more about this I find strength.  As I share this blog with ya’ll I find comfort and courage. Til next time. … stay blessed.

Just Imagine!

Just Imagine living your life with the knowledge of your future.  What would you change? What would you keep the same ? Would you slow down a little? Would you eat differently if you knew for fact you would have a heart attack in the very near future? Would you put your seat belt on because you knew you would be in a accident on Wednesday?
  With my new health discoveries I would want to do things a little different.  .. I would ask doctor’s to look at me closer not just the number on my chart.  I would demand for them to do more tests. .. to listen to my words and hear how I’m feeling. How does a BMI determine how a doctor looks at you? If I don’t have high blood pressure, diabetes, high cholesterol… then wouldn’t that suggest that maybe they need to look a little closer?   I always knew something was wrong.  I always believed that I was trying the best I could to live healthier.  I could look at my body and tell something was wrong.  If we women are responsible for checking our breast for lumps,  keeping track of our cycles. .. then why not be just as much responsible for our bodies unusual design.  If we can have a mammogram… a pap smear, then why couldn’t we be more of a advocate for how our bodies store fat? If for a minute you can just imagine a doctor telling you that you have a disorder/a disease of your body that is not curable, that no matter how you eat, drink or even how much you exercise. … you will be FAT REGARDLESS…. Just imagine.  It’s no different than a cancer diagnosis. . Or life debilitating disease ,but for me this is not how society sees it. … this is not how insurance companies see it. .. they just see it as Fat is FAT!!!! IF you see a woman walk into a store with no hair on her head , society in general sees it as someone fighting a battle with cancer. Doctors see it as a this person fighting and hoping for a cure.

Now let me take you on a journey with me and just one of my days.  Just imagine waking up with pain so bad in your legs that you really don’t feel rested at all. Now imagine if you will that your body is aching and bruised and swollen. …. you just hurt because you are in toxin overload.  Now you have to get dressed but finding something to wear that covers you unsightly legs gets harder by the day. .. you manage to find dresses to wear because finding a pair of pants that cover your butt and legs, but still fit your waist is impossible. Now you’re dressed.  Let’s find shoes. … don’t think shoes are a problem. ..ha think again.  They are.  Your ankles are so swollen that you either wear crocs or flip flops because anything else just hurts too much. Now think about being hesitate about going out because you now have to face public scrutiny and judgement!  You see my disorder is not noticeable…I don’t have a bald head.  I don’t have scars. … I am not in a wheelchair.  I talk fine.  I get out of my car and walk in to my physical therapy. ..yes I said it. ….physical therapy.  Now I see everyone looking at me, see they are already quick to judge. But what can I say? I can’t tell them that I have Lipedema and Lymphedema.  I can’t say I didn’t choose to be this way. I just look down and wait to go to the back. 

Once in the back I get a massage to stimulate my lymphatic system.  It is often painful because my skin burns.  Then we celebrate if I have smaller measurements. … see no matter how small every little loss counts.  Then I get compression pumps on both my legs.  I lay down with these on my legs as they fill with air and again stimulate the lymphatic system to push the build up of fluids.  Mind you this is still not a cure, just a hope of keeping it a bay.

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Now you get to have you legs wrapped up. ..all the way to your knees. Because it helps.  No matter how painful it is, you do it because you want to feel better.  You want to walk. my biggest fear is being wheelchair bound. I refuse to get that far in this disease, so I do whatever I am asked. Every little thing, every vitamin, supplement… special stockings.. I walk with a cane to lesson the pain and to prevent more swelling.  To me this is a fight. It’s real and it affects me in many ways… I avoid going to stores because I know how people react to me.. and that is a very real hurt in itself. I want to educate them but aside from wearing a large sign on my back that says ” Please Don’t stare, I didn’t chose to be this way and I have a disorder that you can’t see”  ” Ask me about it and I will educate you”….  sometimes I get really angry. I mean I just want to walk up to people and say ” where is your compassion?”

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Now wear that until the next morning when you take them off only to take a shower then start all over again! Everyday you go for physical therapy as long as your insurance will continue to pay for it!
It doesn’t matter how much I cry. It doesn’t matter how angry I get. It doesn’t matter how hurt I feel . Because no matter how many people think that is not a big deal, no matter how many people see you as fat…. you still have to keep living because family and friends rely on you.  So I will cry. .. sometimes I will cry on my fiancee ‘ s shoulder ..and sometimes I will cry quietly by myself.

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But then I realize that even with this awful diagnosis,  even when I struggle with the pain , the cruelty of others I have a wonderful man who loves me. ..a great family and a wonderful network of friends. .. now just imagine if I didn’t have that.  No never mind.  Don’t.  Why would you?  I had this health issue for so many years that I am now at a stage 3. Yes there are stages, just like cancer. If I had been diagnosed sooner in my life… like around 20, I may have been able to live a lot healthier, pain free and would be a whole lot smaller than I am now, but no one noticed. The doctors never noticed.

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I will smile. I will smile. I will SMILE!!! Why? Because like anything else I have been through, I chose not to let it define me.. it is not who I am, and I have always said that the person on the outside is most definitely not the person I am on the inside. I am still the go getter. I am still the one who wants speak for others like me, to speak to them all and say ” I am here with you.. I know how you feel, and together we can all make a difference”  I have survived so much already, I have been through so much this far  so maybe this is what I have been put on this earth for… to be the voice, or maybe just maybe this will reach that one person who also has this awful disorder and does not know it yet and they will learn from what I have wrote about and will get checked or see their doctor and have a chance to get it in check before stage 3.

Just imagine that for once you realize that this is not your fault. Go home hug your family a little tighter, be a little more thankful and live in the moment. That is what I am hoping to do….

As I continue to write this blog I will talk about things in the past, things I did that made this disease worse and more rapid… I will speak of what I am going through on a day to day basis… I will talk about now… the past and the future. This is my journey and I chose to share it with all of you.  If you learn anything from it then maybe I have helped in some way bring a little more awareness to all of you!

http://www.lipedema-simplified.org/

 

 

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Every Story Starts Somewhere!

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When I was a young girl I was very petite. I didn’t have worries about what I was eating or if I looked like the girls in the magazines. I was skinny and everyone made sure I knew it. I remember hearing comments about how skinny I was and everyone told me I was always going to be skinny because I was just that active. Out in the yard, I would do hundreds of cartwheels just because I could. I ran, I walked , I would go swimming… I rode bikes, I climbed trees and my body got beat up because I never ever slowed down.

Through out my childhood I remained pretty skinny.

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Then puberty hit me. I stayed rather slender but I started noticing changes. I noticed my thighs were getting wider. My bottom was bigger and my legs were larger. I guess back then I really didn’t notice it so much, but I remember family saying things.. ” you’re getting a booty girl” ! It was true, but at that age I was more about boys, school, friends… not that my booty was getting bigger. I was a teenager, things change when you hit puberty.. right?

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By the age of 15 I could honestly say that I had a wider spread. I didn’t worry to much about it and I was still very active. My cycles were never really normal and I went on BC pills to try to regulate my hormones. This was off and on for the next few years.

 

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Over the years it was more and noticeable, But I just believed it was me going from a girl and becoming a woman.  I still continued to stay active and also noticed that even with the birth control my hormones were really out of whack. I was taking them to regulate my cycles and yet I was still having problems. Over those years things just really started changing with my body and everyone was taking notice. I must have been a size 14 and even then it was considered fat. FAT?? Really?

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By now it was apparent that my bottom side was larger than my topside. I started dieting, tried working out… honestly I was still very active. I didn’t slow down much. I lived in a small town . I rode my bicycle everywhere. I still didn’t realize what was to come in my future and looking back I really wish I did. Maybe this Blog will help some girls and some ladies out there. So this begins a journey of nearly twenty years of depression, yo-yo dieting, sadness… self hatred .. then to discoveries, starting over, learning to accept myself and learning to love myself all over again. Stay tuned for tomorrows blog, I have lots to share.