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.