When it hurts too much..

I posted some photos recently to a site that has many women just like me on there.  I did it because I wanted answers.  I just need to know that if I somehow come up with the money for the WAL Surgeries, that it will truly be beneficial to me.  I sometimes feel like I am so far gone, stage 3- 4.  How much can that surgery really help me?  Some days are good, and many are not so good. My weight never played a factor in my ” get up and go”  until after my hysterectomy.  Those darn hormones nearly did me in!  Posting the pictures was a good thing because the feedback was so extremely helpful.  I don’t want to let this beat me. I don’t want to be bed bound or even wheelchair bound.  I want to move on my own and take care of myself.  I do realize that my daily routines will never ever be the same and let’s face it I am not getting any younger.  Everything I do now is surrounded with the attachment “Lipoedema”.  If I eat something , how will my body react? If I take something …. if I go somewhere… if I travel. IT all varies on a daily routine and how kind my body wants to be to me.  No I can’t pack my PT sessions, I can’t lift my legs up in public always, just because they are hurting me.  Each day bring a new awareness to this disorder and how I only wish I had known sooner.

I was in a dressing room the other day and I caught a glimpse of my body and for just a moment I really hated what was looking back at me.  But then I closed my eyes and took a deep breath in and said ” Love yourself Shelley” …. this IS YOU!!! NO I did not get diagnosed sooner. I only know now. I can’t keep getting angry about the past and the WHYS? I just have to embrace that I know now and I must do something about it now to insure that i have continued mobility. There are many women out there that are now bed bound.  I can only imagine how they must feel.  It is sad because they too probably feel angry that they were only considered OBESE and NOT SICK!! I am learning that all these ladies know exactly how I feel and some feel even worse.

NINE months..!!!  in nine months I went completely down hill from a normal hysterectomy to barely being able to walk.   In May of this year I knew something was terribly wrong with me.  When I didn’t heal properly from the surgery, I should have known then something wasn’t right.  Everyday I continued to poison myself with hormones and then one day I just woke up and couldn’t hardly move.  That speaks thousands of words to me.  Why do we listen to these doctors who can’t listen to us?  Why did they just ignore me? IT wasn’t fun saying I can’t barely walk and knowing they would blame me and say it was because of my weight.  In fact when my doctor decided he was going to do a hysterectomy on me it was only because he saw that I was very small on top and he had only looked at my chart and said you are to obese for me to do surgery, we will only do a ablasion.   But when he examined me he was shocked at all the weight on my bottom and not very much on top.  All of a sudden I was good to have a full surgery? That should have been a sign then. But he ignored it and so did I.

Sometimes I wonder if we should speak up more.  What do we get them to listen more?


Lipoedema: What it means to me.

I’m sure you guys heard the story before, every girl wants to lose weight right? It is our dream to fit in. We focus so much on losing weight.. But why? Why do we want to lose weight? I’m sure at first it’s innocent. It’s more than likely because you gained a few unwanted pounds during the holidays, maybe you had a  baby, maybe you had a stressful year..week.. Month. It doesn’t matter, all you know is, you want to lose weight! We all know that yo yo effect. Now for most, we start exercising. We start watching what we eat, we become mindful about every little morsel we pop into our eager mouths. But if you are like me. If you work out, and your legs are burning and throbbing afterwords, if you lose all your weight only from the top of your body but your bottom continues to grow regardless.. Well welcome to my miserable life. My life of living with with Lipoedema. You see I went all the way to Germany to fight this disease. But somehow it just has a grip on me and it won’t let me live a normal life. Everyday I go out , I have to prepare myself mentally. Do you know what I mean? I can tell you. I know that if I stop for gas, it will be a struggle getting out of the car. You see I can’t lift my own legs up. I have to use my hands to lift them up. I know once I go inside, I will be looked at. People will assume I eat terrible and that I’m the cause of the pittiful woman they are looking at. Using the restroom is a hassle. Going up and down steps.. Oh and then you go to your Physical Therapy sessions and they tell you it is imperative that you keep your legs elevated!! What? Are you serious. So forget about being normal. It’s never gonna happen. You will walk on these legs until they either kill you, you become wheelchair bound (it’s inevitable) or you somehow find a miracle and this condition meats a monster of its own.  I’m sorry. Just how I feel. Every single day I’m in pain. Every single day I tell myself.. Just one more day. Every single day I push myself to make it. One day I won’t have that push anymore. One day these legs will win. The part that hurts the most about this? I probably wouldn’t be having these problems that I’m having now if it weren’t for someone’s selfish actions.. I wouldn’t be feeling the pain, the humility or the anger if my doctor’s would have just listened to me. I now have Secondary Lymphedema along with the Lipoedema. Add a little Cardiovascular reflux and you get one messed up combination of: What the what?

So Lipoedema means to me, you will never ever be recognized for the person you are. This disease is humiliating. No one will ever know how much you fight for your self on a daily basis. Lipoedema is Pain. Lipoedema is Lifelong. It doesn’t come and go. It’s consistent. The effects are always there. The things I’m limited too will always be. I will constantly need to think ahead on every part of my day, Every outing, every invite, every gathering.. I will always need to take medication to help me sleep at night.. Each afternoon when I get off work, I will ask myself what can I tolerate today ? There will be days when all I want is sleep. There will be days when I will push myself too hard.

Lipoedema to me is like a prison inside a body that is not my own.

I have an amazing support system. My husband is my rock. I will fight on. I will push on. I want to help people. I want to teach people about this disease. I want to educate medical personnel on the importance of listening to their patients and not just looking at a number.  Today I am sharing the raw horrible truth. Today I’m starting this new chapter. You will hear my small victories and my large. But today.. Well today Just sucks.


And so the journey begins!

I know it has been a pretty good while since I have written in my blog, but to be honest so much has happened and I was having a bit of struggles there for a while. Many of you know that I am now in Germany and I have already had my first surgery on my legs. I can tell you that I feel so grateful for Dr. Stutz and his staff, they are all very kind and compassionate to the disease and to the humility that comes along with it. Yes I said Humility. It is very humiliating to be ridiculed for the size and shape of your body and especially when you feel it affects those around you … like you kids and friends and family.  Many of my family and friends have fought battles for me and stood strong against those who like to pick at those of us with our large bottoms and huge legs… it is a joke to them, but they don’t know the physical pain…much less the emotional and metal anguish .  When I discussed with my soon to be husband the idea of traveling to a place so far away , the only thing in my mind was that I didn’t like the person I was, the person  I was becoming or the idea that there may be no other way for me to reunite with the person who was inside and desperate to get out.  You see I was so used to being this way, large on the bottom… small on the top, but I had remained active, I may not have been able to run a marathon but I could keep up with my kids and I did enjoy dancing and shopping… swimming and walking.  To say that in one year all of that disappeared is an understatement.  I didn’t even like me, so how could anyone else like me?  My fiancee understood because he too saw it with his own eyes, I became a snail in all things and I just didn’t have answers.  When I did finally learn of this condition and what it would take for me to get back to where I once was… it was mind blowing. My life as it was, was litterally becoming a handicapped 41 year old bed/ chair ridden woman! I knew that Germany was the answer… so we  ( my fiancee, and family ) decided Germany it would be!

The day that It was time for me to depart was so emotional and hard. I was saying goodbye to everything I knew and coming to a place where I knew nothing and doing it all alone. I begged my fiancee to take me back home, told him I would try to work things out stateside and that we could adjust and deal with it.  He was my rock, because just as hard as it was for me it was just as hard for him, but he knew without a doubt that Germany was were I needed to be.  I cried a lot , I cried because I was leaving my kids, my fur babies, my home, him and my family and I was terrified that when I got to Germany things would fall apart even more because that is how things had been for a year now.  When I boarded the plane there was still this very heavy feeling and terrified woman thinking that maybe my money had just been thrown out the window…. because for me 20 years of asking why and being diagnosed with everything under the moon and still not seeing changes… what would make this diagnosis any different?

The flight wasn’t bad and once I arrived at my apartment I went through another stress and panic feeling… being alone, in the mountains gives you a lot of time to think about all that could happen, even though this far nothing really bad had happened at all.

I had my first appointment with Dr. Stutz on Monday and he greeted me as if he had known me forever. He took his time with me and answered questions and thoroughly explained my condition to me in detail. He asked of my home life, my doctors and kids. He knew of my upcoming marriage and made sure to tell me that this was not cosmetic but more to stop this horrible disease from progressing. He told me that he was amazed by my measurements and the fact that no doctor in the US had really tried to help me soon because it was very clear that something was wrong and that my Lipoedema could have been treated many many years ago if only someone had taken the time to thoroughly go over my labs and do a full body exam.  He said he had traveled many time to the US to educate doctors.  I could go into many details about things that I learned from the visit, not by him but by observation but I will just tell you that when I left, I felt really good and I was ready to face this surgery and the remaining surgeries as a advocate for my own health with the wonderful help of a doctor many many many miles and a few ponds from home!

On surgery day I was again greeted with a wonderful, kind and caring staff. I didn’t feel ashamed when I had to expose my body to him or the nurses because there was nothing to be ashamed of and everything was about to change the moment I laid on that table. Dr. Stutz actually wanted to talk to me and educate me through the whole process, he told me everything he was doing and we talked of many things.  I won’t lie and say that there was no discomfort, because at times there was… but he was on top of it every time and it eased quickly.  When he was done that day he had removed 6 liters of toxic adipose tissue!  You don’t realize what a enormous amount that is until you are able to get up and you feel the difference right there… it was amazing. I was sore but my leg pain was completely different.  I go home and I follow his orders to walk and drink lots of water.  Now he is the kicker…. at 8pm that evening Dr. Stutz shows up at my apartment door to personally check on me. Imagine that.  This is not a doctor making a hospital round, this is a apartment in the mountains with snow and icy conditions and he comes out to see me and be sure that I am fine. I asked him why? His response is ” You are alone and I need to know that you are ok, because you have no one here to insure me that you are!!! This man, within 48 hours had shown me more compassion and caring then any of the doctors I had seen in the last 20years… I don’t say that lightly because I have had some really good doctors in my time.

I won’t say it’s been a walk in the park, because it hasn’t. I have had restless nights, swelling, pain.. sadness from being homesick….but if asked if I would do it again or recommend it for other stage 3 or 4 Lippy ladies and my answer would be an astounding YES!!! For 6 months or so I have needed assistance with walking, sometimes going to the bathroom and I have had to use a cane….. 24 hours after surgery,  I am doing it all on my own. NO cane… no trouble getting up from the couch or bed, no issues going to the bathroom in the middle of the night.  I am at the start of getting my life back and I am so thankful and blessed for that.

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The Fear of Not Knowing

I have been on a roller coaster ride here lately.  It’s up and down… up and down.  Sometimes I know what to expect but not always. We have recently started fundraisers to help with the travel expenses in Germany.  Wow.  When I say Germany I get scared.  I am not sure why.  But there is this big part of me that is just horribly afraid. I try to think of all the positive things that can happen and then I start thinking of all the things that could go wrong or that could possibly change me in ways that leave me hesitant. Surgery is necessary, it is not something cosmetic for me and at my size I don’t feel that image wise it will make that great of a difference, but If I can walk to the mailbox pain free, well then it would be all worth it.  I have ordered the supplements, I wear the compression stockings. I have been working on doing more and more to help myself these days.  Finding out there is a diagnosis to feeling miserable for the last 20 plus years is a relief and a curse.  I am kinder to myself these days, and it is easier to look at the ignorance of others and turn the other cheek. I used to punish myself so often with this diet and that workout and this method and that… I think this is the first year I have been able to look past all the diet fads and schemes without thinking I should try that one too. It is a relief. Maybe I just haven’t had time to think about it? These days it’s more complicated than not… I mean there is therapy, aquatic therapy … wraps, compression garments, MLD… you name it, its being done and often on a daily basis. So why stress about the new diet that I know now more than anything, it just won’t help.  This trip to GERMANY… yeah that is going to help… it has to because this lady can’t take anymore let downs, especially when it comes to me walking or not. When the money is out of pocket and there is no help coming from insurance companies….. IT HAS TO WORK!!!  I have changed my wedding plans and venue because me having a fancy wedding won’t mean anything if I can’t walk down the isle to meet my groom.  I hope the fear will lessen over time and that the more I learn the better I will feel about things… but until then I will just steady this ride a little longer!!!

Strong Enough To Bend

It amazes me how easy it is for people to jump on the Negative Nancy band wagon. They don’t see things with their eyes and therefore it must not be true. Here recently I haven’t felt myself. Everything around me is changing.  I have had friendships ruined by actions that were neither right or wrong. Things have been done that can’t and will not be changed. My wedding planning has completely fallen apart. I have to put so much off that I really don’t want to and honestly it is tearing me to pieces.  I have been in touch with a surgeon in Germany who specializes in my condition. He is the best and has been doing these surgeries for a long time.  I know that he can help me and I also know that he will give me my life back, but of course that comes with a cost.  My fiance and I have been talking about this for a bit and came to the conclusion that my health is far more important than a wedding and reception.  People who love us truly will be the ones to understand.   I have come to learn that there are people out there that understand what it is to have a chronic condition and then there are others, they are the ones who are comparing you with all the people that have visible conditions such as cancer.  That is a ugly word.  And disease…. any disease  is just ugly.

The other day after I was done with my PT , I was feeling really tired and very sore.  Even with my weight I was never really slow. But this was a slow day… my body just hurt to move and by the time it was bedtime,  I was in tears.  My fiance tried to help but I didn’t even want him to touch my legs, they were so painful.  It reminded me of when I got hit by a drunk driver.  That pain was horrible but I managed to push through and eventually it was gone and my body healed itself.   It’s a harsh reality knowing that my body is not going to heal itself this time.  That the pain I have will be there sometimes not as bad… but it will always be there.  I pray that this journey to Germany is going to help me and not set me back. There is always this part of me that is going to question whether I am truly going to find relief and feel better.  I can’t take hormones now and that is proving to be a disaster… I am cranky, moody, miserable, emotional..irrational.  What a pain in the rear I must be around those that love me.

I feel like lately I am being forced to make decisions that are not fair.  I can’t imagine some of the choices other people have to make. How hard it must be for them to make decisions based on a loved ones health and well being.  I am lucky enough that I can make those important choices on my own, but of course there is always a price to pay.  There are paths that we have chosen in life and then there are paths we are forced to take. I wanted to have a beautiful wedding,  put a nice bit of money down on a house and pay off some bills.  Now I have to choose to pay a doctor in Germany to do a few surgeries so that I am able to live a more healthful life with my fiancee and our kids….  it is the best choice because that means I won’t be in a wheelchair and I will be able to do things with my loved ones longer.  Not the choice I wanted to make, but it is the choice I have to make.  I hope that people will be a little kinder in the future.  I hope that people can have more compassion in their hearts towards those who suffer a chronic illness.  I hope that there will be understanding that even when there is a smile on my face, even when I say I am okay… I may just be saying that just to get through the day without the questions or the glances.   I will not break from this. I will always be strong enough to fight, and always strong enough to bend in whichever way is needed to make it just one more day!






Miss Piggy

When I was a little girl, about 5 or so I lived with my family in a small town. We lived in in the middle of a orange grove in a single wide trailer.  My fondest memories are from those days and not because things were great for us, but because we had so many animals that it was truly our own little farm. We had Tom the Turkey who was the meanest turkey ever. We had a goat, chickens, cats, dogs and then there was Miss Piggy.  Miss Piggy was my favorite pet.  She had a personality that to this day has stuck with me. She was cranky when she didn’t get her way. She was affectionate to those who loved her and showed her love. She was just like us kids.  If we got snacks, well Miss Piggy wanted a snack too.  If we went for a walk, Miss Piggy went for a walk too. She protected us kids. She would walk with us each and every morning to see us get on the bus and when we came home from school she was there waiting. Miss Piggy loved us unconditionally and that PIG was family!

Eventually Miss Piggy was no longer with us and that was probably one of the things that hurt me as a child…. not having that pig around. She was my co pilot in all things.  If I did cartwheels she would squeal in delight. If I ran she wasn’t far behind. If I was sad , she sat by quietly and would watch me and sometimes she even came and cuddled close to me. This Pig was a giant. She was large and she was red with black spots. Sometimes I could  ride on her back and hold on for dear life because she loved having us on her. She teased my mom by throwing temper tantrums, she would root in my moms flower beds and gardens. If there was danger nearby, such as panthers or stray dogs she was our alarm and protector.  Miss Piggy was and still is one of the best things of my childhood memories.

I have thought often of my childhood and my teenage years lately. I am puzzled as to why we don’t have handbooks that warn us of  the dangers of hormones.  Now days chickens are injected with things that some scientist believe makes our young girls grow faster, and perhaps have larger chests than that of my youth. We are all warned not to smoke, but in my childhood there were advertisements of cigarettes on TV and in magazines.  We are warned to eat healthy to reduce risks of heart attacks and diabetes.  If hormones have such an impact on 11% of women, that it makes us severely obese and disabled….where are the warnings?  My hormones have never been NORMAL from the very start of puberty.  So the doctors in turn give me a pill to take that now has caused me to be nearly handicapped at 41.  All the doctors I have visited and not one of them could link hormones to my issues. I just can’t believe that there are very few doctors out there that can see the pattern when it affects so many women.

Sometimes I wish that I could go back to those days of running in the fields with Miss Piggy and Tom The Turkey, I wish I could tell that little girl to keep running, keep doing those cartwheels… stay active. Forget about those hormone shots because they wont help you. I wish that I could have been myself more instead of being what society was trying to make me be… I would love myself more back then, and quit listening to all the people who constantly was telling me I was fat, when in fact I was nowhere near fat back then. As I write this I am awaiting a email from a doctor in Germany who will understand exactly how I feel and he will give me hope again. I know that I can’t go back to my childhood, but if I could I would just slow down and be patient with myself a whole lot more. I would enjoy those moments a little longer, and I would speak up a little louder so that my doctors would listen a little better.

I sure miss that PIG!!! Til next time!


Maybe I can talk my fiancee in to getting me a cute little Miss Piggy 2 down the road…. a girl can only hope 🙂


Keep on Keeping on!

The last week has been crazy. I’ve had many up and down moments. One thing I struggle with here lately is realizing that I’m not the same person, in the last year so many things have changed. For one,last year I didn’t have a problem walking around. I may have tired after a while but certainly not after just minutes. That makes me sad. The struggle is real. I even skipped therapy this past week. Why you ask? Because I actually needed a break my body seems to be fighting me constantly in every way. I’m constantly reminded of the things that I cannot do that I didn’t have a problem doing last year. Wedding plans have slowed mostly because it’s just hard for me to get excited when I’m fearful of being able to walk down the Isle. I don’t want to be one who gives up.  I don’t want to lose my mobility. It’s a scary feeling. Just knowing that everyday the pain that I feel in my legs will only get worse. The heaviness that I feel in my legs won’t go away the burning that I feel in my legs won’t get any better. The pain that I feel in the bottom of my feet ,the pain that I feel in my knees. The exhaustion.  Every since having my hysterectomy I have been struggling.  If this all changed in that short amount of time,just nine months… where will I be 9 months from now? I try not to focus on it. I only try to think about each day . If I can at least try to accomplish one good thing each day that will help me stay mobile then I am making progress. These days the effort is hard to come by. I am shocked by the person that I am. I visualize things so differently but yet when I look in the mirror I see things as they truly are. I made progress this week by posting pictures on a special site with ladies who were just like me. That actually put a smile on my face. It made me feel better, they all have the same exact condition that I do and they’ve all been walking the same path I have.  Some are in a lot earlier stage than I am and that has to be something to be thankful for. They can do something more for themselves to keep it from progressing. Me? No such luck. I’m already stage 3- 4 and that sucks. I look at pictures of myself from when I was 20 I only wished that somebody would have stopped me from putting all those needles into my bottom so that I could have a baby that I would never have. I wish doctors would have said hormones don’t seem to be doing you any good. Maybe just maybe I’ll be walking around a lot better right now.
Each day I go through some sort of therapy.  Some days I feel really great. .. others not so much.




It’s a new way of living.  Each day I’m working towards a goal. I just want to stay mobile. I learn how to shop for clothes that will be helpful to me.  I wear shoes that will work with my bandages.  When I dress in the mornings I have to select clothes that will work with whatever therapy I am having for that day.  It’s always exhausting.  I keep on keeping on though because I refuse to give up.  I refuse to let it get to me. I refuse to allow myself to be judged by the stereotypes.  I will try to educate as many as I can.  I don’t care how often I sound like a broken record.


I have found a song that I feel explains exactly how I feel and what I will do from here on out.  I will share it with you today.

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!!!


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.



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….




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!