I am not big because I sit around all day stuffing my face with food. I don't eat junk food. I don't drink pop. I don't binge either. In fact, I eat less than 1200 calories a day. I am large because I have a disease that went unchecked for over 35 years (largely because doctors see an overweight person, label them, and make up their minds that "they just aren't trying hard enough") called lipedema, which turned into lipo-lymphedema because the disease advanced. I am currently stage 3 and holding out hope that I won't reach stage 4 anytime soon. But that's another story. You can read all about what I have here.
Last month I saw a surgeon about the gallstones. To give you an idea of the kind of prejudice I go through with doctors and my disease, he wrote on his chart that I was 400lbs, without even weighing me. I am pleased to say I am NO WHERE NEAR that size. But this gives you a good idea of what he was thinking about me while he was talking to me. He informed me that not only did I have gallstones but I had a hernia as well. He would prefer to not touch the gallstones (since they don't bother me [and they really don't]) and because it's so difficult to operate on people of "my size". He then proceeded to tell me that I should stop eating junk food, getting fast food, drinking pop, etc. (all the things I don't do) if I ever hoped to be operated on. I tried to tell him about my disease and he said to stop using that as an excuse. I then tried to tell him I didn't do any of the things he mentioned and he said, "Well you're obviously doing something. You're only lying to yourself." A typical male doctor. Prejudiced and judgmental. He was very lucky I didn't bop him on the nose!
He then told me something "funny" was growing on my hernia. When I asked him what he meant by funny he said, "Unusual, you know...odd." Odd? Funny? I guess I should be relieved it's not cancer because if it was he wouldn't use the word "funny" right?
Flash forward to today. I saw another surgeon (referred to me by the other one) who is going to perform an endoscopy on me to look at this "funny" thing on my hernia. This doctor came in and said he was glad to see that I wasn't 400lbs. and wondered why the other doctor would write that in his chart. He said he was very glad that I wasn't because operating on a person of that size would have been difficult. Good...already I feel better. A nice doctor who isn't judging me. Off to a good start. He then added, "But operating on someone of your size is also a dangerous thing."
Sigh. Moving on . . . he wanted to discuss the "funny" thing the other surgeon talked about. Apparently it isn't growing on my hernia, it is growing on my esophagus and according to him and my medical charts it's been there since my last CT scan (several years ago) that no one bothered to tell me about! He then informed me that it was unusual because it looked like metal. Metal!?! He then asked me if I'd had any operations on my stomach. Nope. Only my legs and abdomen. "Well then," he asked. "Have you swallowed something metal?" I racked my brain. "Maybe it was a penny when I was a child?"
For some reason back in the 60's, mothers used to bake coins into birthday cakes. Could I have had a nickel or dime in my stomach for all that time? He said it looked calcified so...maybe?
"But it could be diverticulitis."
"Whatever it is I'll take it out when I do the endoscopy."
"Okay. Great. So what about my hernia? Are you going to fix that?"
"Well you have two hernias..."
At this point my inward dialogue is something like this: "Why am I only getting little bits of information at a time about what is going on inside me? For crying out loud this is my life, my body. Be truthful and stop hiding things from me! Do all doctors do this? If it's cancer will they even bother to tell me?
Okay, so I have two hernias. How did I get two hernias? Then the thought popped into my head about all my exercising (I do sit-ups in a vain attempt at thinking it will make a difference. I know it won't but I do them anyway).
"Would doing sit-ups have caused this?"
"Sit-ups would definitely make it worse."
Of course they would! (BTW, he never answered the question).
"So . . . the hernias? Are you going to fix them?"
"No...a woman of your size ..."
Really? You're going there? We were doing so well...okay...so a woman of my size?
"Makes it dangerous to operate on you. So unless they aren't bothering you we'll leave them alone."
Really? So all the coughing I'm doing after and during each meal and every drink I take isn't bothersome enough?
"When they start getting painful ... sharp ... excruciating pain ... we'll fix them then."
That's what the other surgeon told me in regards to my gallstones. But he was more, "When it feels like you are having a heart attack, then we'll take them out."
So basically if you are big and you need surgery don't count on it. But if you are in so much pain that you end up in the ER you might luck out and actually get fixed!
If you don't die waiting to be seen in the ER. Which in Canada is a real possibility.
While my family and friends know me for my loud laugh and my tendency to blurt things out at inappropriate moments (one of my worst flaws), a Lippy Lady has nothing to do with my mouth. A Lippy Lady is a nickname for those of us who suffer from lipidema or in my case lipo-lymphedema.
I don't talk alot about my health situation, but I figured it's about time I said something - if only to bring hope to some other female out there who has struggled for years with her weight and can't figure out why she never loses.
I have a combination of two diseases. The primary disease is lipidema and the secondary disease is lymphedema. Lipidema (also known as painful fat syndrome) occurs exclusively in women and yes it is very painful. It is the abnormal build-up of fat cells in the legs, thighs and buttocks. It usually begins at the onset of puberty and while I'm told it is hereditary, my mother never had it. Currently, over 17 million women have this disease and don't know it! Why? Because their doctors only see fat, not an underlying disease. Plus, I'm told that a total of 15 minutes of training, during a four year medical course, is all that is given to doctors on the lymphatic system. Which is why most doctors do not recognize it.
I spend about one hour a day in a lympha-press. A machine that squeezes my legs in the hopes of moving the lymphatic fluid in my body. The picture above shows what it looks like. It feels like a blood pressure cup on my leg and can at times be very painful.
In the early stages of lipidema a woman will be small on top and wide on the bottom. In other words a pear-shaped body. During each hormonal change (onset of periods, pregnancy, menopause) the woman will notice her behind and her legs getting bigger. When I was sixteen I noticed my legs (at the top) were getting huge. I couldn't figure it out because I was very active - rode my bike everywhere, swam a lot, walked everywhere and was very conscientious about what I put in my mouth. Things got so bad when I was a teenager that I barely ate anything, yet I found it impossible to lose weight anywhere below my waist. I can remember going to the gym with my mother at an early age to work out, with little to no success, and I continued to do that right up until the time I could no longer move my legs without severe pain. In all my years of working out and dieting I became incredibly discouraged and depressed because nothing worked. And with each pregnancy things got worse.
While trying yet another diet (Jenny Craig) and exercise program (Curves) I began to notice a rock hard substance in my legs and it felt like they were getting bigger. About this time my legs started to split open and water would leak out (that's how big and tight they were getting). Unbelievably, when I went to my doctor he refused to listen to my concerns. I have since learned that most male doctors are preconditioned with an incredible prejudice against overweight women. So much so that they will tell you over and over again to go on a diet (even though you're on one) and exercise (even though you do). Mine would insinuate that I was cheating on Jenny Craig, when in reality there was so much food on Jenny Craig that I couldn't eat it all. My counsellor with JC began to notice that I was losing inches everywhere but below my waist (she measured me each week). She also measured my legs and told me they were getting bigger too. She was also concerned that after almost a year on the diet I had only lost 16 pounds when it should have been closer to 50. I went back to my doctor who again refused to listen to me.
In my case, I started to get several serious skin infections called cellulitis over the course of a year or two. After seven or more visits to the ER where I was given I.V. antibiotics and received home-care for a week at a time, one doctor in frustration said to me, "Why aren't you getting your lymphedema treated?" At that point in time I had never even heard the word "lymphedema" before. So I asked him what he was talking about. He was shocked that my doctor had missed something so obvious and sent a letter to him with a recommendation to have me treated with manual lymph massage. But did my doctor listen? Of course not. He could only see the fat. So I dumped him and went to a walk-in clinic, where I managed to get a new doctor who realized right away there was something wrong with me. FYI - my new doctor is a woman. (Yes, I think it makes a difference).
She sent me to a lymphedema physical therapist who took one look at me and said, "I have some good news and some bad news. The good news is that all those years of trying to lose weight with diet and exercise and never being able to lose anything at all is not your fault. You have lipo-lymphedema and it is the reason you can't lose weight."
I wanted to cry. All those diets! All those gym memberships that never worked! All that money invested! I felt like a weight (pardon the pun) had been lifted off my shoulders. I always blamed myself but knew in my heart I couldn't have done anything differently. Still I continued to blame myself. But, now I finally had some answers. So I eagerly awaited her cure for me to lose the weight. That's when she hit me with the bad news.
"You have stage 3 lipo-lymphedema. There is no cure and dieting and exercising will never help you to get rid of it. Your legs will unfortunately continue to grow, but we can with manual lymph massage and compression stockings keep the growth at bay for a while."
Unfortunately, after examining me further she realized the tissue was so hard and congested that I would need surgery to remove it before any treatment could begin. The goal was to reduce the swelling in my legs so that I could get into compression stockings which would keep the disease (supposedly) at bay. She sent me to a specialist who agreed with her diagnosis and to make a long story short I had the surgery, it didn't work and the lymphedema (my secondary disease) kicked in with a vengeance. Five months after my surgery the congested tissue would also return and get so big that I could no longer walk without severe pain.
I apologize that this post is so long. So I will finish up by saying this. The picture to the left is not of my legs. My feet are not quite that bad yet, although they are getting that way. My legs however are almost the same. These are the legs of someone with stage 3 lipo-lymphedema. They get this way because the lymphatic system is not doing its job.
We have hundreds of lymphnodes throughout our bodies and in a normal person the lymphatic system takes all the bacteria, dead blood cells, fat, etc. and filters it through the lymphnodes to the liver, kidney, etc. and all that bad stuff eventually comes out in your urine. In someone with this disease, the lymphatic system gets all backed up with fat and it doesn't filter through and everything gets clogged up and stays in one place and builds and builds and builds until the patient can't even move. Most people with this disease are in wheelchairs.
All that to say this - if you are struggling with your weight and you cannot lose and you've tried everything, don't let your doctor convince you that you aren't trying hard enough. Go to someone who will listen. Below, is a video that will explain this disease way better than my attempts. It will show you what the first two stages look like. I think a lot of women are going to be surprised at what they find.