Really pushed myself hard this morning. Oh and ignore the 9km/h on the display. That's cause I took the pic when I stepped off the hometrainer.

Stats:
Duration 63:54
Average speed 25km/h
701 kcal
Distance 26.6km

So much pain right now

Done for today! Body refuses to go on longer so... Know when to quit. In order to be able to walk tomorrow I have to stop now haha.

Time 31:50
Average speed 21-22 km/h
299 kcal
Distance 11.3 km

Guess what I'm going to do? Let's see how long I'll be able to keep it up today.

Have to start again for the sake of my legs. Really painful. I think only lipedema patients understand this kind of pain. Endurance is not the issue. But pain is. stupid lipedema.

Why I don't like having to wear compression sleeves: color difference between my skin and sleeves. And I can't properly wear anything with short(er) sleeves on top of that cause it looks ridiculous. Same goes for skirt: that is even worse looking.

Wearing my Nyan Cat shirt today. And the compression sleeves, as always.

I wear my compression sleeves on both arms every day, but it just doesn't get any less painful. And it still leaves a lot of marks and wounds.

Had fun in the sun today with compression sleeves (in case anyone is wondering what's on my arms).

(Half) bare feet in the grass. Wearing compression stockings so that's why the feet look funny. Blue nail polish = Gone Gonzo from the Muppets collection by OPI.

This is a teaser image. Click to see the full image together with a nice story!

I wear compression stockings for my legs. Every single day. And I usually also wear my compression sleeves (for the arms). But today I decided to start wearing the compression pants/bermuda again. I wonder how long it'll last. I am in a lot of pain because of it and I can't move properly. Can't walk with this thing, can't sit with it either. Also makes toilet visits unbearable. I just don't know what to do about this. I have to wear it for my upper legs. In the pic is my hand/arm with compression sleeves.

Just a quick update, to let my loyal readers know that I still haven't given up the dream to go back to college. HKU may have declined me, but maybe there are other schools out there who appreciate my work.

Where did this come from then?
Well, last Saturday we had a visit from friends. We talked about college and such. Wouter mentioned that perhaps ICT & Media Design could be a nice choice for me. And I even ordered some brochures a long time ago about this particular study. I'm not sure yet if it is right for me, but it did inspire me to go and look again online, for schools and studies/courses that are suitable for me.

I actually came across a website with information about schools and studies. And I also came across Avans/CMD, which is where/what I studied years ago, but never finished due to illness. I noticed a phone number and mail address from a dean who might be able to help me, since I'm chronically ill but still want to study. Maybe there are some advantages in my case. Perhaps I could get dispensation when it comes to museum visits, perhaps access to an elevator within the buildings, time off for when I have to go to the hospital, and maybe even when I have to swim (since not all swimming pools I can access are open in the afternoon and/or night). It's worth a try. I'm going to give the dean a call on Tuesday, which is when ChEeTaH is at school and Seth will be at his grandparents. I'd like peace and quiet when calling someone with such serious questions. And I'll report about the call next week.

Wish me luck!

This is a teaser image. Click to see the full image together with a nice story!

This is a teaser image. Click to see the full image together with a nice story!

This is a teaser image. Click to see the full image together with a nice story!

This is a teaser image. Click to see the full image together with a nice story!

This is a teaser image. Click to see the full image together with a nice story!

This is a teaser image. Click to see the full image together with a nice story!

I've blogged about Lisanne before. She's my sis-in-law. She just got back from Ghana and after having a good night sleep, she visited us so we could go downtown together. She needed new clothes, so did I. And Seth needed new clothes as well. Oh and of course I needed a Christmas present for Seth.

Nothing shocking so far. ChEeTaH, Lisanne, Seth and I walked through the cold and dirty snow to the city. Once there, we bought some toys for Seth. Some were belated birthday presents from aunt Lisanne. And some were Christmas presents. After that we went to M&S, a store with women's clothing. Small and large, chic and casual, they have a little bit of everything there. ChEeTaH waited in the fitting room area, as Lisanne and I both went our own way to choose clothing to try out. We did. Later, when we were almost done, we discovered that we both had 2 exactly the same pairs of jeans. That wasn't all. We also had the exact same blouses and sweaters, only difference with these items was the color! It's just plain freaky. It's not the first time we bought the same clothes. We seem to have the same size clothing as well, for the top that is. Because of my lipedema my jeans are usually 5 sizes bigger than my tops and shirts.

I'd show pictures of the new clothing but I don't feel like taking pictures right now. And the M&S website didn't have a decent collection preview online so no help there either. Maybe I'll take some pics later But we definitely had fun downtown.

So my family members are finally back from Ghana. My sis-in-law Lisanne went there early September to volunteer in a school and some other cool things. She blogged about this in Dutch on her travel blog. And then my in-laws went to Ghana on vacation a few weeks ago, to accompany Lisanne. Because of the snow many flights and fares were canceled. But they all made it home in one piece eventually. They were dirty, hungry and tired though after a long flight, so we talked briefly and then decided it was best to see how things are tomorrow. I still have to go downtown to get some things. And Lisanne also needs some new clothes so we want to go together.

I really missed the family, especially Lisanne. My in-laws are Seth's weekly babysitters. When you're trying to work at home, with kids at home, you will soon find out it's not easy. Sometimes it's just impossible. So I'm more than happy that they are babysitting him. And then there's Lisanne. I can talk for hours with her, and we never seem to run out of things to talk about. We complain about our annoyances, we chat about fun things. We also go shopping together, if we have enough money of course. She regularly buys the same clothes as me. She often gets Seth presents (clothing, but also toys). We borrow each other's Wii games and so much more. We chatted a little through mail recently and she will be spending some time here also once she's rested and has time. We will probably attend a swimming group together in 2010. I really want to exercise more, but with lipedema it can be very painful. I'm sure everyone knows water makes your body feel lighter. So moving is less painful in the water. It'll cost some money but I personally think it'll be worth it.

Oh how I can't wait to see the family again! I'm sure they have loads to show and tell us too!

I have enough hobbies already so I don't really need to add too many websites to my collection. But there are just a few more sites I will be adding in 2010. I will be telling you about these projects in December, to prepare you!

If you're reading this blog, there's a chance you know me. If not, I should tell you I have a disease called lipedema. It's something I got during the second trimester of my pregnancy. I gained more than 50-60 kilos within a few months. My eating habits were pretty healthy and I did not have a car whatsoever so I had to walk everywhere. Yet I was so bloated and we didn't understand. Now, years later, I finally know what it is. The only issue is that there is no cure for this disease. And there's a high chance it will get worse. That's why I'm fighting to prevent it from getting worse.

For a while now, I've been monitoring my food, weight, BMI, activities and so on. I do this on a private blog. This is really nice for myself so I can see what I've accomplished so far by myself. I will continue this in 2010. I've been slacking a little lately because of deadlines, emotions and the holidays of course. But I will definitely start again in 2010.

The problem with lipedema is that many women have this disease, but don't know about it. There are a few very good sources online with information and all that. But I was looking for a message board with fellow patients. I found just one (Dutch) lipedema forum. And I registered immediately of course. But when I was finally logged on, it said I couldn't post because the board admin had not paid to extend the board. They passed 500 messages or so and after that you need to start paying the host. It's ridiculous. But I was sooo sad over this. I thought I had finally found some women and girls with the same issues so I could share experiences.

At first I was sad and angry at the same time. Then I came up with an even better idea. Why don't I start a lipedema forum myself? I have the knowledge, the opportunity, and experience. So that's exactly what I'm going to do in 2010. I have to finish some other projects first. But this is definitely one of the things on my to do list of 2010. It's important to be able to talk with people who have the same disease. Your family can be so supportive but sometimes you just want to chat with people who go through the same as you.

Yesterday I finally received my compression (arm) sleeves. They are annoying. I am going to take macro pictures later to show you the difference between the structure of my compression stockings and my compression sleeves. I am this close to ask for new ones. These are so horrible that I can't even work while wearing these. I have my arms bent when I am behind my computer, and it really hurts. I did get a free Easy Slide for my arms, so that's positive. This one is extra long (there are 2 sizes and my arms are too long for the normal size, so I got an extra long one). Oh and I have new gloves. Apparently my old ones were too big and that's not really convenient when you try to put on compression stockings, compression pantyhose or compression sleeves.

Here are the two macro pictures. On the left you can see the compression stockings and on the right my compression sleeves. It's photographed at the same scale. Imagine how rough the pattern of the compression sleeves is. When I asked for the sleeves, they promised me it would be the same material as my compression stockings. But the lady who made the arrangements apparently chose otherwise.

Tomorrow morning I will go to the hospital to pick up the compression sleeves. I don't really feel like it because of what happened during my last visit. But I need them anyway... So I'm going.

I just returned from my visit to the hospital, which is where the Kousenzorg is located. It wasn't a fun visit at all. I was kind of afraid what they would say about my already broken compression pantyhose, but I didn't expect to feel like this the way I do now.

It started when I came in. They would measure my arms for the compression sleeves. The dermatologist didn't mention it was just one arm and it didn't say on the documents that it was one arm. But the lady measuring my arms thought it was all very strange. She mentioned that my lower arms do now show any obvious signs of lipedema (they do, but it doesn't seem that bad because my upper arms are way worse). She did measure both arms in the end because, obviously, she couldn't find it was for just one arm. I have lipedema in both arms so yeah, err? Seems logical that I would get sleeves for both arms right? It's not like I asked for this stupid disease to begin with. Isn't it bad enough I have the disease, I'm not happy that I'm sick!

After measuring my arms I politely asked for the statistics of the measurements for my arms. But she wouldn't even write them down. Because this would give me the opportunity to go "shopping" (her words). Which means they think I might go to other compression garment companies and get more compression stockings. I told her clearly I wanted the statistics for my blog, but she still wouldn't give them to me.

I asked the -rhetorical- question that these were my medical records. They are my measurements, my arms? Right? Well she didn't quite care, because she didn't give me the statistics. She also mentioned she would inform all her colleagues to never give me my statistics. Because that's just not the way they work. What the?!

If she stops and thinks about it for a minute she would realize I can't go anywhere else to get compression stockings. And why would I? It's being paid for by my health insurance, though limited. So the Kousenzorg can't see if I get more compression stockings, but my health insurance sure can!

As if that didn't ruin my mood enough already, I had to mention the broken compression pantyhose. And basically she says it's my fault it's broken. I was probably being too rough with it. I always use those stupid gloves and I'm being careful. What else can I do about it?

There are 6 obvious holes and hooks in the pantyhose. But there are more (developing) hooks. And the hooks result in runs and holes.

The lady at the Kousenzorg said I should return the pantyhose as soon as possible so she could bring this to this other lady who can fix the runs and hooks. But it will cost me. And it's not being paid for by my health insurance. I also think this lady charges per hole. It's not one, I have several! Also, I'm not the only one who thinks this is a production failure. This isn't normal, that many holes in just one week?

For some people it may be hard to understand, but after this visit to the Kousenzorg today my day was pretty much ruined. I couldn't help myself and got emotional when we left.

Just like the previous visit, where they just had to tell me I have to lose weight. Excuse me? Lipedema? It's not like I just ate too much and can easily lose all the weight again. I have this stupid disease which doesn't just make it very tiring to work out (if possible at all), but also without any result. I really try here, but if people keep giving me nasty comments from all over the place, then that does not exactly motivate me to continue. I only end up depressed. Sigh.

I have really bad news. I don't even have the compression pantyhose for a week now and there is already something wrong with it. Pieces are sticking on the outside and there are holes everywhere! I have to at least wait 3 more months before I can even request a new one. I just don't get it. I am careful enough when I put this thing on. I always use the gloves. I did notice there is a hole in (one of the fingertips of) the left glove. But I have holes in the right side of my pantyhose as well and I only use the right glove on that side, not the left glove. I am almost afraid to go to the Kousenzorg today. I don't want them to lecture me because my pantyhose is broken already. At least I know it's not my fault! But I will tell them about the issue. I have to go there anyway, for my arms.

I didn't even know this existed, compression (arm) sleeves. I also have lipedema in both arms and would really like to do something about it. I can't do much about it. But I have been thinking about this. After all, I got compression stockings for my legs, and I kept wondering, that when I got the new compression pantyhose, if I could ask them to take my compression stockings and make those smaller so I could use them for my arms.

Last week I visited the Kousenzorg (compression garment contact person) and I just asked about this, kinda unsure but I had to know. I was afraid they would laugh (I had no idea there were compression arm sleeves!) but they didn't laugh. In fact they thought it was a pretty good question. And they showed me some examples.

Obviously I need to have the okay from my dermatologist. So we needed to make an appointment there. And we did. The dermatologist approved it so now I have to go back and make an appointment at the Kousenzorg. I hope I can have the sleeves in a couple of weeks!

Last Friday I got new compression stockings! Or well it's actually a compression pantyhose. It's hell to put this thing on. But every day it seems to go a little better. And I understand it's necessary to wear this. Or well at least I assume it's necessary. With my previous compression stockings I lost a lot of fluids and that's good news. The only problem was though that it only did wonders for my lower legs, whereas my upper legs -which obviously are even bigger- didn't benefit at all from the compression stockings. The result is just really weird (lower legs losing fluids while upper legs staying the same), not to mention painful. So let's hope the pantyhose will do me some good.

I went to the hospital today, to have my breasts checked and for the new compression stockings. At the Kousenzorg I asked them if they could give me the statistics for my legs, either written down or copied, so I could post them to my blog. That way, I can see my progress overtime!

Measurements circumference legs June 2009
Left
cD: 43cm
cC: 47cm
cB1: 39cm
cB: 29cm
cY: 34.5cm
cA: 25.5cm

Right
cD: 45cm
cC: 48cm
cB1: 38.5cm
cB: 28.5cm
cY: 34cm
cA: 25cm

Measurements length legs June 2009
Left
|D: 44cm
|C: 34cm
|B1: 19cm
|B: 10cm
|A: 18cm

Measurements circumference legs August 2009
Left
cG: 80cm
cF: 63cm
cE: 47.5cm
cD: 40cm (3cm)
cC: 45.5cm (1.5cm)
cB1: 37cm (2cm)
cB: 28cm (1cm)
cY: 34cm (0.5cm)
cA: 25.5cm

Right
cG: 78cm
cF: 64cm
cE: 49cm
cD: 42cm (3cm)
cC: 47cm (1cm)
cB1: 36.5cm (2cm)
cB: 27cm (1.5cm)
cY: 34cm
cA: 25cm

Measurements length legs August 2009
Left
|T: 33cm
|G: 80cm
|F: 62cm
|E: 50cm
|D: 44cm
|C: 34cm
|B1: 19cm
|B: 10cm
|A: 18cm

On certain places I lost 3cm! That is pretty good for just 2 months (actually less, but okay).

I'm really curious to see what the new compression pantyhose will do for me!

I got myself an Easy Slide yesterday, a new one, one that isn't torn apart! And also an Easy Off, although I think I like taking off the compression stockings with the rubber gloves instead. Total was €27.50

Some time ago I told you about my new compression stockings and what it's like to put these on. My sister-in-law now got me an Easyslide. This is some sort of special shaped bag which helps to put the compression garments on. You just put it over your foot and leg, to make it easier to put on the compression stockings. Especially less painful. It's pretty easy and smooth too. However the Easyslide wasn't new so it has some holes. So I can't really take it off myself. Wouter helps me with this. I can put them on but with the Easyslide I still need help. Well it's definitely better than the stupid useless small sock help that came with the compression stockings.

Soon I'd like to buy my own Easyslide. One that doesn't have the extra holes in it and therefore will be in one piece. For now this is fine. But I would just like a better one soon. They usually cost over €25. I was wrong the last time. But since I'm a Groene Kruis member I can get it for €25. Soon. At least someday.