You Are Getting Fat!

    “You are getting fat,” was what my grandmother said when I was eleven. I was stunned: I was always told I was skinny and now I was suddenly getting fat?! I told her I disagreed and she replied that “at least my legs were on the heavy side.”  The not so subtle comment stuck. I noticed, more so over the years, that my legs were not what people would consider pretty. I had cankles and chubby knees. Still, on the whole I had a good figure and a very average size. It didn’t stop me from wearing shorts, short skirts or a bathing suit. I’m grateful for that: lipoedema did not wreck puberty for me.
    I wore the skimpy things on my good days. On the bad days my legs were bugging me, making me imagine I was fat all over, which was rubbish. Young girls can be very self conscious that way. I tried silly diets like eating dry bread all day every other day, basically stuffing myself with carbohydrates. A real no-no. My mother was a huge fan of both crash diets and weight watchers. She took pride in breakfasts that consisted of nothing more than black coffee and salad dinners, which both disgusted and attracted me. My vague attempts to NOT eat bad things made me crave them even more. I got very obsessed with what other people ate. I envied their ability to eat junk food and getting away with it. I also kept comparing myself to the skinniest girls in school, which was not particularly useful, but I was at that age where insecurities have a great impact and send you left and right on your search for the way that suits you. So far this wasn’t particularly remarkable. It just was.

                                                             Turning Point

My period was a nightmare and so was my skin. My legs may have bugged me some days, seeing my pimply face staring back at me in the mirror was a regular nightmare. I was also popping pain killers every single month like it was candy. My mother took me to our family doctor. He was shifting in his chair, coughing, asking me about my social life and finally asked if I had a boyfriend. I confirmed this proudly. In the Netherlands many doctors jump at the first opportunity to prescribe birth control pills in an attempt to avoid teen pregnancies. Even the hint of a bad period or bad skin will prompt birth control pills as a remedy. When I asked if there were other ways to tackle my problems he told me it was possible but less effective and took more than one remedy, since the problems were very different. I was 16 and like many other girls my age I left the practice with a prescription for birth controll pills. Happy. Forget about the brand new boyfriend who had not made it to second base yet: no more pizza face! This was supposed to make life a little easier, gave me tool to skip my period on vacation or camp and would save me an awkward trip to my doctor at a later time to talk about birth control.  
    The package insert said one could temporarily gain a few pounds. When I did I was not happy and I also found there was nothing temporary about it. After a while I experienced side effects and went back to my doctor. I was told there was no way I could have gained from such a low dose of hormones, but to stop the side effects I needed to stop for a while, which a did. When I went back I was again encouraged to try birth controll pills, but change brand. I agreed and immediately packed on a few more pounds. A year later the weight was still there and the side effects were also back.
    I developed a routine of starting, gaining and stopping with birth control pills. When I brought up the weight gain I was told that it was either impossible or highly unlikely. By the time I was in my twenties and had a new family doctor I got really cranky. I was tested for an STD I didn’t have; it was ‘just’ side effects again that had presented themselves with similar symptoms as this STD. I pointed out it was in the package insert. I was not making it up! He went over the alternatives for birth control and pointed out all the negatives. He was still pushing me towards birth control pills, despite my medical history. I said I would think about it, but stayed clear of that junk for several years. Looking back it’s impossible to name a number, but I gained at least 15 pounds, though probably a little more, from my yoyo experiences with birth control pills.

                                                           Wedding Pictures

By the time I reached my mid twenties I was chunky. I wore stretchy things to fool myself one size. I was terrified to quit smoking, because everybody was going on and on about binge eating and gaining after that. Fear of comments on my weight drove me to eating secretly, hiding empty packages in the bin below ‘innocent’ trash. I hated myself for it. Despite my insecurities and the drama I created for myself, the love of my life popped the question. Not being a big fan of being the centerpoint of attention, we decided to do something awesome: a quiet wedding ceremony on a beach in Australia. At the time marriages in the Netherlands could only be legally closed at city hall, which was not exactly where our hearts were. The sound of the waves makes our blood stream, so it just had to be on a beach.
    Like every bride to be I came up with the plan to lose weight before The Big Day. Trying to lose weight under pressure with a tight deadline is murder. But I really, really wanted it and gave it a go. Nothing. Not a single pound. Despite everything I also started taking birth control pills again, for the very last time. My efforts didn’t get me anywhere but keep my weight stable. It just had to make do and I bought myself some corrective underwear, which also got me to proudly tell the seamstress that the dress had to be taken in.
    When I saw the wedding pictures afterwards I was mortified. The legs had been neatly hidden under a long skirt, but where did the granny arms come from?! I had fat hanging over my elbow. So much for short sleeves! I didn’t get it. I still had a great waistline. I had not gained anymore. What was this? I simply couldn’t wrap my head around it. I passed mirrors every day, but my mind had been playing tricks on me, concealing my actual shape. Despite the increasingly ‘tired sensation’ in my legs, my feet always being cold, the easy bruising, the unusual shape of my arms and legs I never mentioned this even once to a doctor. It simply didn’t occur to me something may very well be the matter. Running had always hurt my legs. I blamed it on my feet. I was always told I had a problem as a child with my feet. I reckoned something had grown or developed the wrong way, which caused me pain when running. The fact that I got more and more bloated I blamed on my being overweight.

                                                               Raging hormones

     In my late twenties I had a change of heart and figured out that I wanted to be a mother after all. Before that I wanted to get into shape to get healthier for my sake and my future baby’s sake. I was a regular couch potato. I tried a crash diet with protein shakes. I lost a fair bit of weight and became less bloated, although I remained prone to swelling. I simply labelled it yet another flaw in my design, not too hard to explain since my mother had the same problem. The fact that running hurt provided me with a lovely excuse to refrain from exercising - as if each and every sport involves running. After going back and forth on the subject, I finally managed to quit smoking. Of course I gained some of the weight I had lost right back. But I didn’t care! I got pregant!
    The pregnancy was very demanding on my body. The morning sickness was more like all day sickness. Water retention also started very early on. I was a regular whale, despite my modest cravings: apples with cinnamon and whole wheat bread with peanut butter. No matter what I did, I kept blowing up. I felt terrrible. My legs could barely support me. I was in so much pain. But all attention was devoted to the baby. I struggled through the days, but was ordered to sit this one out all the way: 40 weeks and 6 days. Baby had complications. Baby was happy where he was. Baby would be less happy and facing lots of medical procedures after birth. Mom was *****.
After the birth for 10 days I lost 2 to 3 pounds every single day. I joked that I might as well move my bed to the bathroom. I had my hopes up, but the weight loss, or rather the loss of excess water stopped abruptly after 10 days. What pregnancy weight had remained, stood its ground. I gave it time, tried to be patient, but lost my final bit of patience about a year after the birth. Not even a crash diet – my last attempt in that department – did anything for me.

                                                     How I got My Diagnosis

    I contacted the local physical therapy praxis, that also had a gym attached to it. Despite my aversion of sports I decided to give it a go. With lots of patients rehabilitating and it not being a spandex infested joint, I figured I could handle it. My first session the therapist helping me out heard a lot of red flags in my background story. He referred me to a colleague. She helped me with some common post pregnancy stuff, but also noticed the water retention. She told me she could apply manual lymphatic drainage (MLD). My health insurance covered a few sessions, so we gave it a go. I felt sooooooo sick. Very polluted lymphatic fluid that had been trapped forever was set into motion. It took me several sessions to experience improvement. But I would only lose some water for a day or 2 and than it was back on. It was more a matter of the relieve of losing junk, toxins.
    It also got us talking. She waited until she got to know me a little better and than dropped a bomb. She brought up the shape of my legs, the bruising, difficulty losing weight and what not. She ticked all the boxes. If that never got me wondering, at all? She than brought up lipoedema. She pointed out that she wasn’t allowed to diagnose me, but encouraged me to research the topic, to see if I recognized the symptoms. If so, she urged me to see my doctor AND bring information on lipoedema. With what I know now any idiot with knowledge of lipoedema could have spotted it, but that’s where it usually goes wrong.
    I went online and nearly had a fit. In case of lipoedema, the adipose (affected) fat is expected to be there to stay. No treatments, no cures and no hope of shedding those pounds and the prospect of wearing ‘granny stockings’. I DID NOT HAVE THAT! Or so I told myself for the next 6 months. Until reality caught up with me. My legs started swelling after the littlest of diversions of my routine: walking more than usual, driving for more than 30 minutes, standing for a long line. Anything. My legs were also getting really sore.
    I worked up all my courage, went to my doctor, told her about lipoedema and came home with a diagnosis of.....lymphoedema. I was supposed to lose the excess water by MLD, while I had already established that didn’t do the trick, and start wearing compression stockings. I did it all, had to admit the granny stocking were feeling good, but was still stuck with sore legs that had started growing and growing despite my efforts at the gym. I went back and got referred to a dermatologist. I had a lucky break: she knew lipoedema. I had my diagnosis in no time. But she also crushed my hopes. I was supposed to try and keep my weight down, wear the stockings and forget about MLD. There was so to speak ‘nothing anyone could do’. That hurt the most: I felt so lost with this crappy diagnosis with a crappy prognosis.
    Thankfully I didn’t leave it at that. Thankfully there are ways to fight the symptoms. The earlier you get your diagnosis the better. And thank God for support groups. They get you a long way, which includes the way of improvement of your symptoms.