The Lipedema Queen

 Where Curves Meet Courage


"The Queen's Blog"

This Monthly blog proudly features the lives, stories and stages of other Lipedema Queens 

Queen's Entry #2 Mikel Ruffinelli (AKA Diva)

March 2017

My name is Mikel Ruffinelli ( AKA Diva) and I'm a 44 year old Mother of 4 Awesome children and Wife of a very Supportive husband! I had to open this opportunity to share some of my life with you by expressing some of the reasons I feel so blessed! The supportive circle of family, close friends, and loved ones I have are priceless.

I am a very confident SSBBW Model,Spoken Word Artist, Singer and Songwriter, Motivational Speaker ,and Entrepeneur. I Love to motivate others to Love themselves at any size, shape, look, etc. WE ARE ALL UNIQUE AND WONDERFUL! I always say if I can have confidence and High Self Esteem in this Unique Body, why can't you?

With that, until about 4 years ago I just thought these hips, thighs, and legs I have that are much larger than any I had seen, and my upper body being smaller were just an attribute of genetics within my family tree. While some of the women in my family have defined lower attributes nobody was like me.

I was living my life in a body I just thought was different and these were my unique attributes.

To add to the thoughts a few short years ago I was discovered my a media company that had interest in me sharing how I live my Life in this world around us that can be judgemental and cruel to people of size. They were interested in how I functioned in my normal daily routine. I was then named in Media to be the "Woman With The Worlds Largest Hips" , and I should say the rest was History!

I was called to do 2 overseas shows. One in Moscow Russia and Tokyo Japan. Both shows highlighted the attributes of my body, but more importantly my views and perspectives on treatment of other people in society toward me, how I function among the haters, and how I live my life out loud and proud no matter what size I am! I have a Passion for inspiring others to be the Best of who they are no matter their size. I was fortunate and very blessed to be asked to do a few shows here in the states called "Double Divas" and " The Doctor's Show" I made appearances on these shows, and both allowed me to share more of my story. Double Divas helped me to inspire other women not to be ashamed of their bodies. They made me a really cute pair of undies and on camera I modeled them for the World to see its ok to be different.

"The Doctor's Show was about exploring my health and finding out if these hips are real? My health as they found with blood work expressed Healthy levels of most everything, but my Vitamin D, which im sure many have heard that are of size. I was also told by the nutritionist I have the cholesterol of a High School athlete and she would have lost a bet on my blood work. That made me so proud because for too long we have been judged by our size rather than blood work upon initial acquaintance in a Doctor''s Office. They also wanted to know were my hips real and I allowed them to answer their question and many others by doing an Ultrasound. Guess what? They are Real! Indeed it was fun and amusing to put to rest that question I had been asked so many times!

After the show I had a lifechanging message sent to me by someone I now consider a sister, Mrs. Katia Page. After seeing me she said I may have what she has. After sharing and exchanging information, I came to realize I have Lipedema. I had never heard of it, and was interested in knowing more. The more I have learned the more I have realized answers to questions I didn't know I had. Just being able to know and understand why I have certain aches, pains, challenges, and even mobility sometimes, is a blessing because now I know why I'm so unique.

I can honestly say Lipedema hasn't stopped me from Living My Life Out Loud and Proud before I knew and now that I know I cannot afford to let it! I have a responsibility to share with others that a Life Well Lived is a Life with Challenges for us to conquer! Victory belongs to me if I want it!

Katia Page

Queen's Entry #1 by Katia Page

February 2017

Living with Lipedema at a late stage isn't easy on you physically or mentally. I know the struggles of having to face the world and getting past judgements from people judging from the way I look not knowing what I'm suffering from. Everyday is a battle just to get equal treatment that is a given to others without a disability and of smaller size woman. It's so important to have a good support system when you are battling something to this degree. Not everyone has that luxury but if your family isn't there maybe a good friend. I know for myself I have been blessed with family and friends support. But I don't like pouring my problems to them and I have found other ways of getting out my feelings, my fears, my hope for a better life without pain. I always advocate to seek counseling services because it is easier to deal with issues earlier than letting it grow bigger then it is harder to come back from it. Depression is serious affliction that many suffers from when you are battling a disease where there isn't a cure for. What have saved me from falling completely into a depression is being able to keep busy helping others. Knowing that my life still counts and helping others to remind them their life still counts brings me more joy than I ever could imagine. Just know there is places where you can call that is free where you can speak with someone that will listen. Whether you just need a listening ear or you to the point where you thinking of ending your life call the help line 1800-273-8255. Never feel ashamed or embarrassed you don't have to give your name but they will listen to you as long as you need it. Stay strong and remember your struggles can help someone else who is feeling alone and needs someone who understands exactly what your going through.

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"The Queen's Blog"

This Monthly blog proudly features the lives, stories and stages of other Lipedema Queens 

Katia Page

Queen's Entry #5 Tia Middlebrook

June 2017

    I decided to share my testimony for informational awareness about my Lipedema struggles; living with this disease as a woman, Sailor, wife and mother. After graduating from high school in my 1993, I joined the United States Navy on June 10, 1993. During my 24 year military career, I suffered from unexplained weight gain in spite of healthy eating, controlled diet and exercise. Because of Lipedema, I failed the Navy’s Body Composition Assessment due to being over the weight requirements, per OPNAVINST 6110.1J. I was passed over for promotion to E8 because of the body weight failure. Finally, I had reached my breaking point, I wanted answers and I began my journey in October 2014 to find those answers. By October 2014, my Primary Care Manager had referred me to 2 local Civilian Hospitals (Anne Arundel Medical and Greater Baltimore Medical) Lymphedema Treatment Centers, (I was diagnosed Lipedema Stage 1) and 3 Specialty Clinics at Walter Reed Military Medical Center in Bethesda, MD. By January 2015, I was seen by 2 Lipedema Surgeons in Georgia and Delaware and a Gastroenterologist physician at John Hopkins Medicine (diagnosed as Lipedema Stage 1). One surgeon diagnosed me as Lipedema Stage 2 and suggested 4 WAL surgeries ($39K Total) and alternative therapies as my treatment plan. The second surgeon diagnosed me a Lipedema Stage 1 and suggested alternative therapies as y treatment plan. I have lipedema in my legs, arms, back, hips and buttocks. Before I found out about Lipedema, the disease had taken a toll on me emotionally and physically. Since 2011, I have gained over 40 pounds. Emotionally I felt like the “Elephant in the Room” during most of my military career with my big legs. For the rest of my life I have to wear a layer of compression garments to prevent constant swelling in my limbs. I follow these alternative therapies: Flexitouch Compression pump 2 to 3x a week, wrap my legs with EZ Medical Wraps (Velcro) about 3 to 4x a week, do Hip Hop Abs 5x a week for 50 minutes and/or walk and follow a Ketogenic Diet, most of the time. Knowing that no matter what alternative therapies I do, these legs will continue to grow. WAL surgery is not the cure, but hopefully it will remove the diseased tissue, allow my lymphatic system to function properly, benefit my metabolism, pump toxins and waste out of my body, decrease pain/inflammation and reduce my chances of arthritis and immobility. One day I would love to have WAL surgery, but right now, it’s not feasible. After June 30, 2017, I will be living on my retirement pension until I relocate from Maryland to Texas and find employment again. I’m so grateful to have met other “Lippy Ladies” across the world (military and civilians) and to know that I’m not alone and that other Lippy ladies are on the same journey as I am.

Katia Page

Queen's Entry #4  Patricia Cornute

May 2017

My name is Pattie Cornute, and I am living with Lipedema. The key word there is LIVING.

It is important to stay as active as possible with this condition, something I was advised against when first diagnosed back in 2007. They actually thought exercise would make our condition worse, and the fear that I had of getting worse, kept me in the house with my legs up as much as possible.

By doing so, my body became weaker and weaker, and my mobility became less and less. It got to a point where I feared my own mortality, and that is when the fear of making my Lipedema worse was overshadowed.

Something had to change. I needed to start feeling in control of my life again, and not letting this diagnosis determine how I lived.

Living in fear was no longer an option, so I began training with my husband Bob, a CrossFit instructor, who was able to modify the workouts, and gradually I became stronger and regained my mobility.

I went from doing pushups on the kitchen sink (my modification when I first started training), to doing my first 10 second plank a couple weeks ago.

I went from barely being able to stand, to getting ready for my 2nd triathlon next month.

The progression in my fitness has been ongoing, which is the saving grace. If I had to look at where I was, and where I wanted to be, I think it would have been too overwhelming, so the message I would like to share, is that each step we take makes us stronger, increases our mobility, and helps us to stay active and live our lives to the fullest.

Patricia Cornute

Katia Page

Queen's Entry #3 by Tracy Elizzar

April 2017

Hello, my name is Tracy and I was finally diagnosed with phlebolipolymphedema in 2016. I have battled and been diagnosed with many other conditions along the way. This diagnosis frightened me, but finally gave me the answer I had searching for so long. Over the years I endured countless surgeries, ER visits, hospitalizations, pain, swelling, ridicule, stares, cruel comments, and judgement by friends , family and doctors alike. I have been hospitalized a total of twenty times with cellulitis starting in 1999 at the age of thirty. Working became too hard and finally I stopped working in 2008.

Leaving my job, seeing friends and family walk away has hurt so much. I have always been an outgoing, talkative, happy go lucky social butterfly. Little by little my illnesses have taken so much from me yet taught me even more. I have learned to love myself regardless of what others say or think about me. I know God is guiding me along the right path in his time. While on this journey God sent me my husband and soul mate Veloz.

God led me to a group of strong and incredible ladies. Strong, compassionate leaders like Katia have inspired me, and renewed my faith in mankind. She is someone I am so happy to call friend. The struggle is real my friends... but as I heard someone say," If God brings us to it, he will bring us through it!" Thanks for allowing me to share a piece of my story. God bless.


       Tracy Elizzar

"The Queen's Blog"

This Monthly blog proudly features the lives, stories and stages of other Lipedema Queens 

Katia Page

Queen's Entry #5 Patricia Dekler

Feb. 2018

My Journey with lipedema started actually at the age of 11. I started to develop these abnormal fat deposits on the side of my hips. I looked like I had "ears" growing out the sides of me. It continued to get worse and by the age of 16 I found myself having my first liposuction. There was no actual diagnosis. I had four surgeries during the ages of 16 and 21, still no diagnosis.

It had affected me mentally , physically and emotionally. There was no way the fat was coming off without surgery. For a while it stayed off the areas , I got some of my mental health back, but then it started to build again on my legs. My knees would hurt, my skin hurt. I had a vein issue. Depression was setting in. I had my fifth surgery and was able to remove a lot, but Not enough to not leave a sag over my knees.

In addition, several years later I found myself with my sixth surgery. A fat and skin excision was done. I had 40 stitches.

At this time a pathological test was done and finally we had the diagnosis of lipedema. I had some relief , but was also very scared.

That's when I joined the lipedema sisters group and met Katia, who brought me to many woman suffering with this disease. I not only made a wonderful friend, but wonderful relationships with many of the woman.

I will continue my journey with this disease with my new lipedema family and help My friend The lipedema Queen help others.

Thank you

Patricia Dekler

Katia Page

Queen's Entry #5 Lisa Q.

Jan. 2018

Hi: My name is Lisa and I was diagnosed with Lipedema [stage 4]/Lipo-lymphedema in 2014. The world needs to be educated about this disease, because no one should go through late diagnosis when earlier treatment can help so much. My body disabled me while I was in my late twenties, and this disease has put me through a lot.

This includes a rapid weight gain, that took me from midsize, to the extreme end of supersized: in a very short period of time. I hit 680 lbs. Such a harsh human experience is hard to describe. This big weight gain came on so rapidly, that when I showed photos of it to doctors, one shouted, "My goodness, you've doubled your body weight in less then one year!" What bothers me to this day is how few of them actually sought a true diagnosis. I have good doctors now, but when it came to getting help and treatment for other problems, weight bias seemed to run the show.

Eventually, I lost enough weight to attain a more manageable size, but remain extremely supersized. It is hard to explain how devastating this experience was, and even now, I am surprised I survived it. I was a young woman when I hit my peak weight, during my late twenties. This year, I will turn 50. It seems like a miracle to me I made it this far.

My 2014 diagnosis gave me answers, and explained why dieting and exercise failed. Help with other health problems also was necessary. Ironically, in one of my old journals, I wrote, “I know I am bloating with water.” I spent years begging doctors to investigate further, and that this was a problem that far outdistanced the PCOS, hypothryoidism and other endocrine conditions that they finally figured out was not just about overeating and weight biases.

I have lung problems, am seriously hearing impaired, and have other health issues. My supportive and loving husband of nearly 20 years duration says I am his hero for what I have gone through. This disease, before it was diagnosed, landed me in the hospital for multiple bouts of cellulitis. It can be very painful. My mobility is impaired too. Compression and other therapies have reduced my infection rate and given me higher quality of life since diagnosis.

This disease for me did bring extreme stigma, censure and rejection from a family of origin, wouldbe employers, strangers and others who had prejudice against overweight people in general, but I pressed on. In the 1990s, I discovered the fat acceptance movement and was involved in that, which helped me keep some self-esteem intact. No one should be discriminated against for how their body looks. I also recently have gotten into standing up for disability rights and how ableism works in denying good medical care and understanding for people.

I believe I had Lipedema by the age of 13, if not younger. My weight was always extremely high, no matter how active I was as a child, with a newspaper route and loving to ride my bicycle around. I was an art teacher in my early twenties, having earned an art education degree. For several years, I worked with incarcerated youth at a juvenile home as an art teacher. I also had some short-term assignments in public schools. I had a strong history in art therapy too. I last worked as a residential counselor, before I was health worsened. I did continue with art on a volunteer basis, doing a few projects at churches with adults and children, and doing an art therapy project at a self-help group seminar. I also kept painting and doing cartoons which I do to this day. I had a few "do it yourself" art shows. I still continue with this to this day, still making art and sometimes on occasion selling a painting or two. I love doing crafts and photography as well.

I like to write and combine that with art work. I have also gotten into making zines. I became interested in them during the 1990s, when I read 'zines like Temp Slave, and am glad to see them undergoing a revival.

Despite all my various health problems, I have always tried to make my way in the world as the best as I can, and have dedicated myself to various causes, to make it a better place.

My husband and I enjoy many other activities together and share mutual interest in artistic pursuits. He is a writer and also plays music, and we have done things like co-write songs, and organized and hosted poetry groups and open mics together.

Even if one has Lipedema and severe at that and has become disabled, I think we should still try and live life as best as we can, and do what we can. As people with Lipedema get greater understanding, and there is more education out there, I feel that things will improve for all of us. I respect Mrs. Katia Page in what she has done for the Lipedema community a lot. Thank you

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Our Mission: 

The Lipedema Queen is a 501c(3) organization created to assist women with lipedema:

Obtain needed medical grade compression garments, surgeries and treatments, 

Advocate for the ICD (International Disease Code) insurers need

Re-issuance of the Lymphedema Act 

Thank you for your support!