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Most people think having liposuction surgery is the only answer. I unfortunately had two different outcomes from what is expected after surgery, the first being that I developed lipedema in other places, notably in my abdomen. My physician has said that lipedema has now developed over my entire body, from my feet to my neck. Secondly, another surgeon with whom I consulted showed me via ultrasound the ragged tissue under my skin due to “poor technique” (these were his words), and so I developed lymphedema. I did have a “reputable” lipedema surgeon at that time. Surgery is a trauma (it appears that lipedema can be trigged by trauma in many), and the development of lymphedema is also a very real possibility after surgery. I was termed a “late” stage 3 prior to surgery, and my only positive outcome is that surgery did help somewhat with mobility.
I was in my early twenties when miniskirts and hot pants came into fashion. I knew I had gorgeous legs and loved to show them off. At 5’9″, and short-waisted, all my height was in my legs. I got a lot of whistles and comments on my legs, and I loved it.
I knew I would age and eventually not have gorgeous legs, but I never dreamed, even in my wildest nightmares, that lipedema would come along. My only concern was not even about the fight to keep my weight down (most of the time by consuming no more than 450 calories a day) but rather, “What do I do to get rid of these rather large upper arms?”
That was my first inclination that I was not like all my friends. I grew up a skinny, little kid with thin arms and legs, and then at puberty – BAM! – those upper arms started to grow. All through adulthood, it was a challenge to find clothing with long sleeves that would fit the upper arms. The thighs were never bad, but oh those upper arms!
Then along came two babies, and after each one, the upper arms seemed to grow more, and the weight issue became more profound. After a hysterectomy and bilateral oophorectomy at age 40, I noticed the thighs increased a bit, but I still never attributed a thing to hormonal changes; I just thought, “You’re destined to be fat, just like your mom and grandmother, with huge upper arms and chunky legs.” I also noticed my fat was not evenly distributed and that I had these little lumps under the skin. “Cellulite,” my friends all said. “It happens to all of us.”
And so it went until 2015, and that is when I nearly died. I woke one morning feeling fine and had just lost 50 pounds with healthy eating and walking three miles a day. I went out to eat with friends, came home, and starting feeling queasy. By midnight, the gigantic sepsis I didn’t know I had (from a pea-sized stone blocking a ureter) had me already not thinking clearly. I managed to call my brother, who came to my house and called an ambulance.
After being life-flighted to the best hospital in Wisconsin and a week on vasopressors to save my life (my BP was 40/25 when I arrived there), I was taken off the ventilator and round-the-clock dialysis, just to find out that the vasopressors (which take all the blood from your body and send it only to the heart, lungs and brain to keep you alive) also cause all dormant viruses and autoimmune diseases to rear their ugly heads.
In one week, the arthritis I knew I had (although I saw no outside indications of) bent and crippled my fingers. Fibromyalgia (which I had only had recently diagnosed at that time) became much worse. Something (they never did give it a name) caused several blisters (2″ across) to rise up on the inside of each lower calf. Those took weeks to heal, and I’m still horribly scarred on each leg, like burn scars. Shingles broke out on my chin. Who knew I had that hiding in me? And it unleashed something else: lipedema.
Yes, I always had it, although I didn’t know it, but after I nearly died, it went wild and progressed exponentially. I watched while, within the next few months, the shape of both legs changed; lumps appeared in various places, like above and below each knee, below each ankle, inside and outside, and even along the side of my left foot. And they grew fast. Each time I would show up at the doctor’s office, her only guess was some form of lymphedema, and finally she sent me to a specialist for MLD (manual lymphatic drainage). After weeks, nothing changed, and obviously the therapist did NOT know about lipedema. For three years, I watched everything worsen, and then one day I ran across something about lipedema and, “Voila!”
There I was, nearly dead at 67 (all 20+ doctors said not one of them thought I would live) and then finding out at age 70 what I actually had all my life. So many questions were answered, but so many more arose. Thanks to a couple of doctors who were willing to learn and my lipedema Facebook group, I feel thankful that I at least know now, even though I will be 75 this year, that there was little I could have done to have changed things.
I cannot afford to have liposuction, and my diet is vegetarian, mostly vegan, so other than watching certain foods, I am limited. However, all that being said, and that is a lot to say, I try hard to not let lipedema get me down. If I have to struggle with compression garments, so be it. If I have to deal with pain, so be it. And yes, I have to keep those once-sexy legs hidden, or I would scare small children and probably neighborhood dogs. They hurt sometimes but not much since I went vegan. We all seriously have to find the diet that works for each of us.
These days I have bigger battles. I have constant kidney stones (which put me in the hospital about twice a year with sepsis) and have bilateral laser surgery at least once but usually twice a year. I also have four herniated discs in my neck, two of them severely; these cause pain daily and seriously hamper my ability to do more than the basic activities of daily living. Lately, the tremors caused by this have even stopped me from doing many basics. I’m often worn out by midafternoon just from simple things.
But I’m so happy and blessed for so many reasons. After being married for 40 years to the wrong man, I’m now with a man who adores me. He does not see my fat and lumps (of course he does but looks past them). He sees my heart. He sees my soul. He sees my joy, joy in life, joy in our love, joy in everything. He laughs because I will never grow up. He tells me how beautiful I am all the time and how blessed he is to have me.
He loves that I try always to find the good in every situation and not focus on the negative. And if I find myself having a pity party, and I do, I only let it last about five minutes because I do not want to waste what is left of my life moaning and crying over something I can do nothing about. Life is not fair, and we know that, but I choose to look at the sun so the shadows are always behind me.
Too many times we get caught up in feeling sorry for ourselves or looking at what we can no longer do, or have, instead of what we can still do and still have. We take our eyes off the small sweet pleasures of life. When that happens, we miss so much. One day, this life will be over. I want to live life so I have no regrets when that day comes.
No matter how compromised I am by my health, and mostly by my lipedema, with legs that just will no longer do what I need them to do, I want to remain that young person we all have trapped inside; that little girl never changes. She still thinks she can do cartwheels and stand on her head. She still wants to search out four-leaf-clovers, play tag, look for dragons, and run barefoot through the woods with the wind in her hair, like I did as a child on my parents’ 120 acres. It reminds me of the first lines of a poem I love by James Kavanaugh.
I was born to catch dragons in their dens and pick flowers
To tell tales and laugh away the morning
To drift and dream like a lazy stream
And walk barefoot across sunshine days.
I urge you to walk barefoot across sunshine days, to take more time to pick wildflowers and watch sunsets – not just the spectacular ones either but all the sunsets, because we never know which might be the last.
I just got done with my check up after vein surgery. My doctor said my varicose veins were thumb sized; usually they are pinkie sized. She said that the vascular system with that vein was very big, which was why it was such a very painful recovery from the phlebectomy. She said I should’ve called her to get some meds to relieve the pain instead of pushing through. I’ve really thought as to why I didn’t reach out to her and suffered needlessly.
I really think it’s that most of my life I’ve talked myself out of pain because no one could tell me why I was hurting, and it didn’t make sense. I thought I was such a wimp because a cat standing on your legs shouldn’t hurt. I also thought I was lazy because my legs would get tired and heavy. Even though I was relieved last year when I was diagnosed, I didn’t realize how ingrained these thoughts were until she told me that I should’ve called her because the thrombosed veins are extremely painful.
I told my doctor my thoughts today about why I didn’t call. She said I need to always remember that if I hurt, it’s because I have a medical condition, not that I’m a wimp. If I get tired and feel heavy, it isn’t because I’m lazy but because I have a medical condition, and it’s time to rest. She said that I need to stop dismissing the pain because, “Normal people don’t hurt doing this,” because the pain is real because I have a painful medical condition.
We need to stop beating ourselves up over what this disease is doing to us. If you feel pain, it’s because you are in pain, not that you’re a wimp. If you’re tired, it’s because we have a medical condition that makes our limbs very heavy, and it would make anyone tired. Be encouraged today: the birds are chirping, the sun is shining (at this moment), and always remember that this isn’t our fault.