Friday, March 27, 2015

5 days to a new bum

I have been waiting for this day since I was a pre-teen, a smaller bum, my day is finally coming on April 1st, Forever I have been afflicted with a large buttocks, and the pain that it causes, I have been the laugh of everyone! Everyone judges, scoffs at me, and finally after so many years I know that it wasn't what I was eating, anything I had done wrong it was Lipedema! And finally I will be in less pain, I will be able to sleep better once the postop period is over and the bruising goes away I will feel like a new woman! I am almost 8 weeks out from my last leg surgery and still have a bit of discomfort in some spots, places are still tender and I don't do well without compression. I already know I am going to have to wear compression for the rest of my life and that is a fact that I accept. Lipedema is going to be a life long disease with no cure and I must always be viligant on what I eat, how I exercise, how much weight I gain etc.

Monday, February 16, 2015

How do I say thank you enough?~!







How do I say thank you to the surgeon that has given me the opportunity to run albeit slow but I can run! How do I express my gratitude for giving me back something that was taken away from me 12 years ago? There are simply not enough words to say or show all that you have given me with your kindness, bed side manner, answering all my questions and showing me the amount of comfort and compassion that no other medical doctor ever has. You truly understand my needs and the wishes I have to become mobile, to play with my children, to enjoy the things I have missed out on for so long. I can walk without my legs rubbing together, I have a thigh gap, my clothing are fitting better. The smiles on the faces of my children when I chase them down the hall way is well worth the money spent, the pain I was enduring was brutal and it is now gone. From my family to yours Thank you and I love you so much for all that you do for me and for others inflicted with Lipedema!

Sunday, February 1, 2015

Insurance denial cosmetic what??!

So I am writing to tell share just how messed up our national insurance companies are! Not once but twice have they denied me the much needed surgeries to restore my mobility! I have had to write gut wrenching letters, ask my doctors and specialists to write on my behalf, and send in scantily clad photos to get them to understand that these surgeries are NOT COSMETIC and need to happen! My BCBS insurance has a clause in which they will not cover any surgery after the gastric bypass to correct extra skin, I understand there are rules to everything, however if a medical necessity is needed, IE chronic infections, neuroapthy in the area, loss of intimacy, horrible pain, and a panniculus (skin) apron full of toxic lipedema fat, then concessions must be made, I will continue to fight them until I cannot fight them any longer! Stay tuned for updates I am currently on appeal number 1 of 3!

2 weeks postop surgery 4 -final legs

It is bittersweet after all the pain I have endured for the last 12 years to finally be DONE with my legs! I don't know whether to be excited, ecstatic, or saddened that the pain is gone. I have learned to "deal" with it and the swelling that ensues for so long. For 20 years or more I have had larger legs, buttocks, hips, belly, and arms then most normal people. For the longest time I thought I was just fat and destined to be in a wheelchair at adult hood. Which I almost was at 23 years old when I shot up to almost 500 pounds within a couple years time. No one in West Virginia or Ohio could diagnose me properly, and without health insurance I was surely going to meet my demise sooner then later. I had already become house bound and depended on a cane to walk at 23 years old. I knew something had to be done and soon. I tried to get the gastric bypass but was denied because I did not have enough obesity related diseases, although I did have hypothyroid, diabetes, and high blood pressure. So thankful that I met and married my husband and was able to get the gastric bypass within 6 years of this, and it did save my life. It worked for me I feel that I am a work in progress, and that the bypass helped me overcome those co-morbidities!  Is it right for everyone that is a personal decision.!Pictured below is my legs just one week postop from my final leg surgery. I have several more surgeries to go on my buttocks,hips and whatever else we can find lipedema fat in!


Monday, January 5, 2015

Week 11 postop Arm surgery

It is 11 weeks postoperative for my arm surgery I am doing well, slowly seeing improvements in movement and pain on that. It has been 3 months since my last leg surgery I see some improvement in mobility but there is still a lot of work to be done! Slow and steady wins the race! Dr Byrd is an amazing surgeon and one of the U.S's finest in water assisted liposuction. I am investigating a lymph sparing tummy tuck as well so many options for me in the future! Now to get insurance to cover everything!!

I am in the running for a full scholarship to the rare diseases conference in DC how exciting!! I hope I am chosen.
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Tuesday, September 16, 2014

2 weeks post-op update

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Sunday, September 7, 2014

Taking my life back- The first week after lipedema Liposuction

This past 8 days has been a whirlwind, we arrived in Georgia August 27th, we checked into our hotel. I definitely recommend Extended Stay America Alpharetta, Georgia. They definitely make it feel like home there. The next day the kids and my husband went swimming, then in the afternoon I got to have a consult with Dr. Byrd (my wonderfully awesome surgeon) to talk about the surgery and all the pre-op stuff. The very next morning I woke up and at 830 am I went into surgery! This was the day that will change my lipedema story forever, the day that I waited 11 years for, hoping to regain control of what was robbed and taken from me! During this 3 hours water assisted liposuction surgery about 6.5 liters of fat were removed from my buttocks, hips, legs and inner thighs. The world revered Lipedema surgeon from Germany was in the U.S. overseeing surgeons perform surgeries and he officiated in mine he is absolutely remarkable and knowledgeable.