Angry Today :(

Do you ever feel like running from everything and everyone? It seems to me no matter how happy I try to be someone or something is always in the way. Either you are fighting with things from your past or dealing with things that bring you down now. I am mentally exhausted by it all. Totally. I just feel like I can be all  alone by myself and feel less hurt. Less pain, less disappointment. I’m just so freaking tired of it all!!!! No one will ever understand me, no one will ever understand the tears I have cried, the pain I feel in my heart and with my body. I just want to detach myself from it all. How? I can’t…. no matter how far I try to move past things there is always something lurking like a terrible disease ready to consume me and remind me just what and where I have been. I don’t know what to do anymore and the frustration is real, it is big and I feel very soon I will throw all my happiness away just because I am not understood…. maybe I am rambling here? I am mad and angry and hurt and I just can’t take much more. Everything hurts. I am drowning and there is no one for me to reach out to because I am mis- understood so easily.  I don’t like the person I am becoming. I am sinking in a dark hole and eventually I won’t see anything but the darkness. No single person will understand this because it goes so much deeper than just being diagnosed with Lipedema. It’s EVERYTHING!!! I have so much to be happy for but yet I can’t because I have so much that makes me angry. My childhood, those that were supposed to protect me but didn’t. Those who were supposed to love me but didn’t. Those who were supposed to teach me and prepare me for life… but couldn’t. Those who did things to me that are unforgivable… those who would rather beat me and torture me than to love and nourish me… yes I am 41 and I still suffer from it all. It consumes me! I have wasted away in this body because I trusted my doctors, I trusted others… and they all managed to fail at what their purpose was/is. How the hell does that happen? How does it continue to happen? Was I born to be tormented and to be fearful even as an adult? HOW could I get like this? How could I keep it all in so that it destroyed me and others? How do I get over it and start living now?  Someone please tell me… please I beg you. I have no more answers!!!

Mrs. GRUMPY

I woke up today feeling extremely worn down. At some point this becomes exhausting.  You don’t do it for fun.  You do this because you have to.  You do it because you hope and pray that it will make a difference and that it will change in some way.   I’m here in this little room having my physical therapy today.  I am by myself and that gives me time to think.  Thinking is often my worse enemy.  I think about all these women out here that are dealing with the same thing I am. How they must feel the same way I do. .. do they feel as trapped as I do?  I have my good days. I have my bad days. I am guessing that today I’m in the middle.  Everyday I’m reminded of what I can and can’t do.  Everything has changed. I’m held captive by bandages, appointments,  pain…sleep deprivation.  I’m emotional because I’m no longer taking my hormones.  I see all these people in here and in the only one here with this disorder. I want it to be something different.  I want to see changes. I want to quit hurting.  With everything good going on in my life, I should be happy. I’m not. I don’t even know where to begin.  I realize that eventually treatments for this will come out of my pocket. My insurance expires in October.  That makes me upset. Up until I started this treatment I couldn’t barely make it to the restroom. Life is not supposed to slow down to a crawl at 40! I spent many visits to the ER begging for answers.  Many times I left crying, feeling no better than when I had got there.

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I can’t imagine going back to that way of living.  It was extremely miserable then. ..and mostly miserable now.  Today is my day of being pitiful.  All the phone calls I have made and I just feel like I’m hitting brick walls.  Surely stress isn’t good for our bodies. ..and I have prayed and prayed for a answer. There really aren’t many options for us.  That’s the truth.  It is what it is.  So yes. .! Today I’m angry.  I can’t be happy all the time. I am trying.  I know each day will get better.  There have been things to be thankful for on this journey. …. but a lot to be angry about and even more to be confused about.  There are no books that guide us to what works and what doesn’t. .. speaking to a doctor whom is familiar is near impossible at the moment. There are so many of us and to few doctor’s that are informed.  I feel that I will scream at the next person that ask me  “what is wrong with you” or the next person that cracks a joke at my expense just may wind up crying because I have a lot to say. … it may hurt their feelings like so many have hurt mine.  Well I guess I’m done being Mrs. GRUMPY….

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I’m going to look for the positive side in just a few moments because that is about all I can do for the moment. … I’m going to suck it up and play Dory! !!!

Just keep swimming! 

A Birthday Wish !

I just celebrated my 41st Birthday. To some that may not be a big deal, but to me it is huge. I can’t count on my fingers how many times I felt like I have had close calls. Those near death experiences have probably made me the person I am today. The biggest one was when I got hit by a drunk driver.  I was air flighted to a bigger city for medical care. I remember very clearly telling myself that I was going to be more thankful for all my days to come.  Life throws us many curve balls and sometimes we don’t like or agree with them. When my mom passed away at 37 I became really angry and questioned a lot of things. I had spent a lot of time in foster homes during my childhood and at one time I didn’t see her for at least 4 years. Once I did finally get to see her and spend time with her, so much had changed for the both of us that we didn’t really talk about the why’s. Once she was gone I felt a lot of hurt and sadness.  A few years after her,  my Aunt passed.  When you are young, you are not prepared for death. It challenges you and your beliefs.

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I can’t recall any Birthday parties in my childhood.  Not a single one.  For many years I truly believed that the accident that I was in was the reason why my body became so odd shaped. I cant even say I am pair shaped. I am just really huge in the butt, thighs and legs. My waist was recently measured at Physical Therapy and it was 40″….. I can live with that. But the rest has to change. I pray that it changes, many birthday wishes were spent wishing for changes. With each birthday that passed I kept making these promises to myself, and as each year passed I felt as if I failed myself yet again.  I was caring the weight of the world on my shoulders because I was letting myself down, that is exactly how I felt. We are all born to be our own worse critic. We get so used to trying to be better, skinnier, healthier, prettier … that before we know it, 10 years have passed by.  It’s like all those years each birthday was a reminder to me of all that I failed to accomplish once again.  Everyone else was focused on their New Years resolutions and I was just focusing making it a year older and hoping that I had met my goals somehow. This could have been because I am terrified to die at a young age. When I hit 38 I had a big Birthday party. That was the year something changed in me.  I had celebrated because I had made it to a age that many of my family members had not. I celebrated because I had decided the year before that I was no longer going to pressure myself into making changes.  If change came, I would embrace it.  I had such a great time that year that mentally I felt good, it made me happy and I was not depressed about getting older or feared it. Finally I was enjoying my birthday for what it was, just that… MY BIRTHDAY!!!

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This past weekend me, family and many of my close friends enjoyed a cookout to celebrate my birthday and my friends birthday. For a few days before the cookout my friends let me know that there was a 50% chance of rain and as the day drew closer it was even a greater chance of rain. I was getting bummed out about it because I was looking forward to spending the day with everyone. My fiancee told me not to worry about the rain, he said if it rains… we will just dance in it.  I thought to myself how wonderful this man is. Saturday came and even with everything that seemed to be going wrong he just kept smiling and made sure that I was smiling too. We knew we were going to marry each other and we had even picked out a date. A year ago he gave me a promise ring, with the intent that soon enough I would be his wife. That day I prayed that the rain would just hold off. I wanted to enjoy this day as much as I could because for once my legs were being kind to me and my pain was not to bad.  Imagine my surprise when just as I had blew out the candles on my cake and made a wish he pulled out the most beautiful ring I have seen and asked me to be his wife in front of all those that I hold close to my heart. I felt like the world stopped rotating for just a few moments as I tried to take it all in. I of course said “YES”!!!! The rain came shortly after and you be certain all I wanted to do was dance in that rain!!!

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That moment made me think about things. This man loves me. Even with this diagnosis… he loves me. I can’t tell you the dates I have been on before I met him, the relationships… the guys who said ” well you have a pretty face” … it was a nightmare. When I had finally decided some years back that I would start celebrating my birthdays, I remember making a wish. To me it was such a silly wish to make because at that time I thought it was impossible to wish for True Love! That’s what I wanted. I just wanted to be loved and to be loved unconditionally. I already knew I had Lupus. I already knew there was ” baggage” but certainly someone could come along and be okay with that…. that was the  birthday one of my friends gave me a beautiful heart ornament. She told me to pray/ or wish on it daily and leave it hanging by my window till love found me. I was to pray/ wish on each heart daily.  She said first I had to love myself… everyday I was to look at the small heart and say ” I love me” … the other heart was for my family/friends  and the biggest was for that special someone. I thought it was cute and indeed I hung that heart.  It still hangs by my window….covered in dust. I don’t dare move it!
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Many days I wished on that birthday gift, some days I forgot.  All these years and I  am just realizing how important that birthday wish truly was. I bet you wonder what I wished for this birthday just before he proposed to me was? IT was for me to be healthy enough to spend a precious lifetime with him. Honest!! I just want to beat this diagnosis somehow. I can’t accept the fact that there is not much we can do. I need some one to hear me. I need answers so that we can make a change. All of us ladies want to live the best life we can.  When we fist get diagnosed we are angry… who wouldn’t be? Many of us had sunk into depression. Some of us hid. Some of us may have missed many years of being happy because we were constantly fighting with ourselves over food, dieting and exercise.  I hate all the years that I went undiagnosed. But after the anger comes something else…. LOVE!  I truly love myself. I love that I know I am NOT crazy. I Love that I can walk in and tell the doctor that it was a better week. I love when my Physical Therapist tells me that I have made good progress…  I love that I can accept this and want to do more. I love that I am in touch with ladies that have the exact same thing I do and that they understand just how I feel and have felt all these years.  MY Birthday wish really did come true. I am not sure what the future holds. None of us do.  But those of us that deal with this daily know what we want just a little bit more clearer these days.

Built From Love…

Imagine a sunny day. You want to go house shopping. You spend a lot of time looking for that perfect house. No ordinary house will do. You want a house that works for you and for your needs.  You have it in your mind how you want the house to look. How the kitchen will look because you plan on cooking really wonderful meals in that kitchen for your family. You know that you want enough rooms for you little family. A nice yard, maybe a pool or a swing set.  Finally after all the time looking and hunting you decide that you will build the perfect house for you and your family.  By choosing to build you know that it will turn out exactly as you wish. Once it’s built, you move all your things in. You have carefully selected the colors of the paint, the furniture for each room and then you start to fill this house with all the things you love.  Everything that you do with this home represents you, sure over the years there will be normal wear and tear… there will be replacements and things that will break… and you of course will take care of it because it is YOUR home, Your shelter.  YOU will obtain home owners insurance to protect it and the things you love because you love your home that you built, and you want to live there with the knowledge that you are insured and covered when bad things happen.  Why wouldn’t you? It is your investment.

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I have been doing a lot of thinking about this because me and my fiance have recently picked out a home, and soon enough we will move in and fill it with lots of happy memories and all the things we love.  We would never intentionally set out to destroy something so precious to us.  So this made me think of our bodies, our well being and our health.

My physical therapist told me a story today during my MLD session, I think she told me the story because I was saying really hateful things about myself and my fat legs, butt and thighs. She told me of  doctor that had shared a story with her. It was about one of his patients that had been diagnosed with terminal cancer. The lady was beside herself and distraught… what would she tell her family, her husband and her kids?  A few days later she came back to the doctor and told him that if she was dying she was going to learn to  ” LOVE” herself.  Yes. That is what I said, Love herself?  She started meditation and soon followed with yoga, she did deep breathing… she saw herself as beautiful, every inch of herself, every molecule.. she simply loved it, she loved her cancer, she loved her scars, she loved everything about herself.  You see to her there was nothing left to hate. Soon enough it was time for her to come in for more tests, to the doctors surprise she was doing remarkably well.   She is still alive. She is still breathing and she is no longer terminal.  I thought about this all day. I thought about it on the way home and I am still thinking about it.  To love myself completely would just be amazing. Then I thought of my body. Then I thought of our upcoming wedding and our house.

My body is my house.   IT is MY job to fill my home with LOVE.  I didn’t purposely cause the damage that has been done, but I didn’t do enough to be proactive in it’s care either.  For 20 years I knew that something was wrong.  I allowed doctors to fill my mind with self doubt and shame. I poisoned my body because I didn’t know.. and I didn’t know because the 20 plus doctors didn’t know.  They only diagnosed me with a million other things but always at the top of the chart it said “Obese” …  even when I lost a lot of weight it still said  ” Obese” even when my body looked good and somewhat proportionate it said  ” OBESE”!!! If  I had known that certain foods make it worse, that exercise can go against you, that sweating and shaving was bad… that hormones were poison, would I have brought those things to my home? My temple?  NO WAY…

20 years and two very different bodies later I have to forgive myself. I have to give myself the love that I quit giving… I have to accept that this is me. Every curve, every dimple and every breath in me needs and deserves love from me.  To do this,  I have to fight for it, I have to demand that my insurance company sees that this is the hand I have been dealt because doctors are just now learning of this disorder/ disease.  I have to hope and pray that they see that 45k in 6 surgeries is needed and they should pay because I too deserve to have a better quality of life. 45k pays for a car, half a house… how am I supposed to come up with that kind of money.. especially when I have insurance to protect my investment, my home… my temple?  I am no different than a chronically  ill patient, a cancer patient or someone diagnosed with a rare disease.  I will love myself enough to fight for that.  Lipedema is not a case of being lazy, it is not a case of  ” woe is me” …   it is a case of not enough doctors being educated and not enough insurance companies understanding what just one day living the life of a Lippy lady is like.  I don’t have high blood pressure, diabetes, high cholesterol ….. but one look at my body you would certainly argue with me, even my brother has. I  have gotten so used to looking down, to frowning down at the scale,  crying when I left numerous doctor’s offices because NO ONE WOULD LISTEN TO ME!!!! I am not crazy people, I know what I have been dealing with and you can’t tell me that there was no indication that something just wasn’t right!!!  In college I threw the shot put, the javelin, the discus… I was active, but I remember many times going to the doctor with leg pain and I was stumpy from the waist down back then too…

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Age 20

Age 20

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20 years difference, 20 years of me not standing up for myself. 20 years of me not loving myself because I stood out in so many ways from others.  Today that changes.   Tomorrow is my birthday. I will be 41, for the next 20 years I plan on loving myself a lot more. I plan on loving all of me. I plan on sharing my story as much as possible. I will fight for my body, I will fight for the care of my body.  I hope that I have the chance to do that.. I want these next 20 years. I need them.  This is my happy beginning.  I will share with anyone I can my story and other ladies like me. It is my goal. I will not look down. I will look forward, and I will cast every stone of judgement that has been cast at me.  I will breathe deeply and I will appreciate every moment just a little more.  And when I am down, I hope that I can be reminded of how important it is that I stay positive and love the woman I am.  Maybe soon enough the world will change some with new awareness, maybe we will be approved for medical treatment more often and to the doctor’s that are by our side pushing for a change, let us remember that change begins within you, within your home and within your mind.

Til next time, Stay blessed and love yourself more today, less than tomorrow and more than yesterday!

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.

Age 20

Age 20

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.