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The battle against Lipedema

Rosana Kooymans

I'm a Dutch designer and artist. I run 2 Etsy shops. On Rosana Kooymans: Art & Design I mostly sell Freezer Bunny plushies and hand drawn illustrations. And on Retro Hugs I sell planner and craft supplies.

I'm crazy about my Filofax and Carpe Diem planners, and I also create custom inserts and stickers for planners.

In my spare time you can find me gaming/creating on SNW. I stream twice a week on Twitch.

I love my geeky hubby and our 3 creative, geeky sons!

On this blog you can find some of my crafty projects (including handmade cards), illustrations, design projects, photography, family life and my health journey. I record the occasional video too, and plan on recording more crafty and planning videos soon. So keep an eye on my blog.





Thursday, May 28, 2009 - 14:12

So, I haven't blogged again for a while. That's mainly because I've been busy working on new projects. Once they are done, I will add them to my portfolio. Until then, you'll just have to be patient.

As for my health, it's not going so well. Many people have been wondering since yesterday what's going on. I did post messages on some sites (my own fansites and some social networks) that I didn't have any good news and that is still true. I've been having health issues since my pregnancy, even though I tried to stay healthy. I will try and explain it in this blog. Hopefully it'll make things more clear to family and friends. For me personally it's very depressing. I know there are much worse diseases in this world and some people are dying. I am not trying to make people feel sorry for me. I'm just trying to explain what's wrong and what I'm trying to achieve.

When I got pregnant unexpectedly in the beginning of 2007, we were shocked, but happy. We had to make a lot of adjustments in our lives in a very short amount of time. We tried our very best. Somewhere during the second trimester I started to gain a lot of weight. I didn't have a scale but it was clearly visible. And it was weird. Of course I ate some chocolate sometimes (who doesn't) and of course we didn't always have healthy meals. But I went from drinking coffee and eating pizza's before the pregnancy to being very healthy during my pregnancy. Not only did I want to be healthier, I didn't like all the greasy and caffeinated stuff. It didn't really matter though. It became worse and I was bloated, my body absorbed a lot of fluid and it wouldn't go away. Even though it was clear to the midwives and the doctors and I asked for help but no one actually did. I had to lay down for a few hours every afternoon so the fluid would go away. But it never really did.

Along with that I got other complaints. My pelvic diaphragm began to act up as well. I had a lot of pain, couldn't get out of bed properly due to the pain, couldn't turn around in bed because of the pain, couldn't sit and stand up properly because of the pain. And the pain later on (after I gave birth) went away. The side effects however didn't. I'm still having issues with my pelvic diaphragm. Not so much the pain, but stress urinary incontinence. Which means I have to wear special pads each day. That doesn't sound so bad but it's just all these health issues and they're driving me insane. I now have physiotherapy so I can hopefully one day live without too many of these pads. The physiotherapist told me there is a big chance it will never go away. And I won't see any result for the first year or so.

I wanted the best for my son and decided before he was born that I would breastfeed him. I am quite allergic myself, have many allergies and asthma and I just didn't want that for my son. Now I can't make sure he doesn't end up getting that. But I could at least try and help to prevent it. I did so by eating healthy, taking special pregnancy vitamins every day, and breastfeed him once he was born. It was trouble from the beginning. He did get some mother's milk but not enough in my personal opinion. I tried for months. But ended up with irritated breasts and now I still have an infection like area on one of my breasts. Among other things. I'm pretty convinced I need a mammogram but I'm too young to be eligible. I have asked the GP several times for help but I'm not getting through to him. I need to have my breasts examined otherwise I can't rest. I'm pretty sure I felt something in my right breast and I am worried. I'm now still using breast pads and special creams.

Now, back to the weight gain I suffered during my pregnancy. It didn't seem to matter what I did during my pregnancy as I gained a lot of weight in the second and third trimester. I don't know my weight at the worst point during my pregnancy. All I know is that I gave birth to my son and afterwards didn't even fit in my pregnancy clothes anymore when I was released from the hospital. That's weird, seeing as I gave birth to my son, and I ate healthy in the hospital.

At the end of my pregnancy I began to have trouble with my digestion. I tried all these "tips" people gave me. I ate pieces of fruit, drank special syrups, drank medication, lots of water, ate more fibers than I usually did. It all didn't matter and it became worse and worse. So I gained even more weight at that point and it was getting completely out of control. 8 months after I gave birth to my son I finally got special medication for my digestion. The doctor said I was completely clogged on the inside so I needed enemas and special medication. That seemed to work a little. The medication did anyway. The enemas didn't really do it for me. Wasn't fun but I would have tried anything, as long as I could get a more normal digestion again. I'm now still on special medication for my digestion as my healthy eating pattern and regular exercises don't seem to be enough for my digestion to improve.

We don't have a lot of money but we are gamers and we bought a Nintendo Wii as soon as we could afford one. Then later on, we bought Wii Fit and Wii DDR because I thought this would be a nice way for me to do workouts when my son is sleeping. Our current living situation is sometimes annoying. I don't have an elevator here. And I don't really need one because I'm too lazy or anything. But I have a son, have to go down 3 floors to get the stroller, drag it up the stairs with my son - which isn't working. And the worst part is probably that when I leave the building, I can not get in the building with the stroller. The door is too heavy and automatically closes immediately. The stroller isn't strong enough to push the door open and it auto-locks itself so I just can't get back in. I tried several times but it's not possible on your own. So during the normal work days I'm at home with my son and I can't get out to go for a walk with him or do some errands. That's really annoying. Walking is the only form of exercise I have outside. I don't have a bicycle and I don't have a sports membership as it is too expensive. It's not exactly healthy for my son to stay inside every day either.

I have been trying to become even healthier since the end of March and I feel it's going well. I do notice that it is a lot harder for me to lose some weight and my physiotherapist also told me what she thought was wrong with me. Lipedema. In case you never heard of it. It pretty much means my hormones messed up my body, as I gained too much weight, and it wasn't my fault. It's not a diet thing. According to some sources, lipedema is often confused with obesity and that is indeed how people look at me these days. They think I overeat and that I am lazy. It's hurtful to have to explain to everyone that it is not due to my "life style".

I waited months for an appointment at the dermatologist. I'm sure there are things that you have to wait longer for. But I had to wait over 2 months before I could see the dermatologist. Yesterday I went to see a dermatologist because of the lipedema suspicions and my breast issues. He asked me to take my clothes off and looked at my legs and confirmed it is in fact lipedema. He also stated that they can't help me to solve it in any way. They don't know what causes it exactly and there is no cure whatsoever. I don't have lymphedema yet. But that also means lymphe draining has no use. And I asked about alternative solutions like lipostructure, as I've read quite a bit about it online from people who suffer from this condition. But the dermatologist strongly advises me not to do that as it will most likely damage my lymphatic vessels and then I will in fact get lymphedema sooner. Since there is nothing I or the dermatologist can do about it, I'm stuck.

I can of course continue with my healthy life style. That was already my plan. I eat healthy and exercise enough. I could try and exercise more, but I can only walk, step, bike and swim. Other sports are not suitable, not for lipedema and certainly not for my heart. I gained more than 50 kilos during my pregancy. I know it is in fact more. I used to be somewhere between 80-90 kilos. And after I gave birth I weigh about 130 kilos. So I gained over 50 kilos. Because my son was definitely big and heavy and of course I lost all the weight from the placenta and the amniotic fluid. I'm guessing I must have weigh more than 140 kilos during my pregnancy but I'm not sure. All I know is that I gained weight and that it wasn't my fault. But nonetheless I can't get it all off myself. The dermatologist said there is no way of saying if I ever lose the extra weight on my legs. There is a big chance it will not decrease at all. It's not properly divided on my body. It may be hard to understand, but my legs are colossal and the lipedema makes it almost impossible to lose weight there. I am currently losing some weight but I'm noticing it's more from the top of my body and not so much my legs. I will never have normal legs and it's very depressing knowing that I will always have painful legs, I have to wear special compression stockings on both my legs. No matter how hard I try, my legs will not return to their previous state. It makes it harder for me to do the daily things. My legs feel heavy and painful.

And it also makes me wonder if I'll ever have the family we want. I am very happy with our son. But I wouldn't dare to think about another pregnancy because of what I went through during my first pregnancy and the health issues I've had since.

After reading this, I'm pretty sure many people still won't understand the condition and the situation. I can't blame them. I don't even understand it fully yet. Some people will think it's not worth being depressed over something like this. Maybe some people will even think I'm being dramatic. I just don't want to continuously have to explain to people that I'm not suffering from obesity but lipedema, that it's not my fault I gained this weight, that there isn't anything I can do about it that I'm not already doing right now. And since I doubt barely anyone of my family, friends, acquaintances or other visitors and readers suffer from the same stupid disease, I don't think anyone has the right to judge me because of this. Because you don't have an idea how hard I'm trying and how hard it really is. I sound really angry here and I don't mean to be. I just don't want people to judge me on how I look. I know people have judged me in the past few years on how I look because they think it's all my own fault. Apparently it's not. I'm happy about that. I'm just still looking for a solution.

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