Thursday, 27 October 2011


My big wrapping session began Monday morning and should last till Tuesday where I will be measured for new compressionsstockings and hopefully the JoviPak nightgarment, I'm still waiting to hear from HandicapService.
The days have been allright but the first two nights was a challenge. I've been going to bed around ten, waking up at 1 with toes going numb and pain at one of the bones, walking around, back to bed, up again, ending up sleeping some hours on the sofa with one leg hanging out, leaning on some items on the floor. Last night was really good as the bandages was sitting a little better and less tight at the ankle. It was wonderful to have a good nights sleep.

My leg is making progress. I don't feel it has made a world of difference yet, but my therapist is quite happy. I guess it takes a little while to mobilize the fluid and get the various players in this going. It does look better though and the tissue is much softer and wobbly. The Mobiderm bandage underneath the shortstretch bandages is very effecient.

Some of me in my wrapping outfit.

I am wearing my wrapping gear which is my ancient but much loved Scholl trekking sandals (have had the strap on the one sandal made longer) and very widelegged hip hop pants. Doesn't look all that flash with socks in the sandals, but that's just too bad. I am not really much out and about anyway, this week I have arranged three days working from home/time off where I go home and stay there after treatment. It's too much hassle with the stairs (I'm on the 3rd floor), too cold with sandals and I feel akward. I don't mind at all though, I am indeed a homeperson, and I have lots to do, in fact I'm a bit behind with e-mails and other things on the computer, not to mention domestic work.

There are now ten votes in the diet poll. One dairy, four salt and five "diet doesn't seem to matter". If you haven't voted already I should be ever so grateful if you would. You can have a peek anytime and see the score. You will find the poll to your right. Thanks.

I've added a link to the Lymphedema Shoeguide. It is I've known about this shop for years, even before Lymphedema, but for some reason I forgot go put it on the list. Sorted now. They make individually fitted boots for wide calfs.

The new pump arrived today and the timing could not have been better as I will be on my own reg. wrapping and draining during the weekend. I am going for a session Friday morning and then again Monday morning. I am planning to pump when I sometime Saturday take the bandages off, then put on stocking with bandages on top, and then pumping and wrapping before bedtime. Same procedure Sunday and perhaps a pumping session early Monday morning before therapy. I'm looking forward to get started with the LymphaPress.

Wednesday, 19 October 2011

(How) does diet matter?

There has already been four votes in my little, completely unscientific, but very hands-on survey about whether/how diet matters to Lymphedema. They are all "Diet doesn't seem to matter". It is going to be more interesting the more votes come in. I hope you would like to contribute by voting.

Tuesday, 18 October 2011

Still shaken...

A little update: My good foot has gone back to more or less what it was before the weekend. That's a relief, although I still feel shaken and scared. It does go up a little come evening, but it's been like that for a long time. It might not be anything, but it might be the early stage. Time will tell. I am going to my therapist next week for a big wrapping session, so might talk to her about it. And I might not. Depends on how it goes. I am afraid she will tell me to start treatment, and then there is no turning back. I do know it is important to start treatment as early as possible, but I will need a little time to get my head around it.
I really can't see myself wearing compression stockings on both legs. I have enough on my plate with the one and I feel akward enough as it is.

I do wonder if the wine – or something else I had at the party Friday – did it. I have never ever noticed anything with the Lymphedemaleg when drinking. A reader here on the blog seems to keep the swelling down with a very restricted diet, others don't notice any difference with what they eat or drink. To try and clarify what differs on how many I have set up a poll where one can vote for the foods/ingredients that make their condition worse, if any. I find this very interesting. I very much hope you would like to vote and help put some light on this matter, you will find the poll in the right column. Thank you.

Saturday, 15 October 2011

More Lymphedema?

Late last night when I was back from my brothers Birthday party and was going to bed my ankle on the good leg was rather swollen! I was devestated, I still am.
Last summer and this summer too I have noticed that the skin on the big bones on the ankel would be a little tiny bit swollen come evening, but I've put it down to normal heat swelling, that I believe many people have, especially when a little older than first youth, but what I saw and felt last night was more than that. I pressed my finger into the swollen tissue and there would be a hole. Also, when stretching the foot it felt sort of tight. I had been wearing some very flat ballerinas with no support and I had been sitting down for most of the day and evening, but still, I am afraid that can't justify it. I couldn't believe it and I am in tears of frustration and sorrow that I might be getting Lymphedema in one more leg. As I lay down to sleep I cried and prayed that it would not be Lymphedema.

This morning it looked itself again although it seemed the skin on the forefoot was a tiny bit more firm than usual. I am still frustrated and scared and desperate and sad. I want to call Mum and Dad to be comforted, but how can I, they will be so sad when I tell them. When something happens to me it happens to them too because I am their child. Being a parent never stops, especially for mine. We are a closeknitted family. But how can I keep it inside? Other people get fed up with what they see as whining in no time and seems to think one should just get on with it. They don't understand.

Yesterday before the party I went to my parents and I washed one of my two stockings in their washingmachine, but forgot to take it, and they live too far from me to go get it today. I realized my mistake on the way home, so when I came home I quickly rinsed the one I had been wearing and rolled it up in a towel. Sadly, I was so tired and forgot about it so this morning there was no stocking to put on, it was still sitting in the towel. What to do? I wrapped the foot and lower leg and as soon as the stocking is dry enough I will put it on. It is the most beautyful weather outside and I want to go for a ride on my bike. Also have to go to the library and pick up a book I've reserved.

I looked nice in my new palazzo trousers.

Friday, 14 October 2011

Note on post about dressing like a LymphADiva

I knew there was something I was missing in the post about dressing like a LymphADiva, and now I know what. I wanted to say that even though Lymphedema is a curse and it gives us grief when dressing up (and other times), it does provide us with an opportunity to wear something different. Something that the other guests may not have thought of. That can be a good thing, I feel.
I was the only one with my type of dress at the wedding I went to recently.
People that don't know we have Lymphedema may simply think "wow, cool dress, don't see that style very often".
We may not be able to wear the latest fashion, but we can still look gorgeous. And glamourous.

It's not me on the picture and not my dress, but I wish it was. Talk about wow-factor! She probably hasn't but for all we know this model could have severe Lymphedema in both legs.

I've got this beautyful song in my head today.

Wednesday, 12 October 2011

More shoelinks

I was going through some old links and I found some more shops that I've just added to my Lymphedema Shoeguide. I've marked them, can't miss them. The second of them has EEEEEE width, I would think that is very wide! I will add info soon about shipping.

Saturday, 8 October 2011


I'm feeling a little down today. Various thing that has happened lately. There are times where it really doesn't take much to throw me. I went to a posh bar last night in a posh part of town, filled with posh people. Felt so out of place. So much superficiality. Especially the young men were acting cocky and full of themselves. Statistically I guess there could have been one other person in that bar with Lymphedema, but really, I don't think so. Sometimes I wonder what posh people, say celebs do, if they get Lymphedema.

I need to find out where I belong now. I move in very different circles at the moment – the tai chi class, the walking group, the club I've joined that does charity and business related networking.

As I was sitting here feeling really low a sweet comment to the shoeguide ticked in and I felt so warm inside. Knowing there are others out there with Lymphedema, people that can relate to and use the things I write about comforts me. When people tell me they are glad they found my blog I feel honored and grateful. One can feel so alone with this, but I guess you know about that.

Tuesday, 4 October 2011


I've just come back from a wonderful evening with the group from the Korea trip earlier this year. We did a litttle presentation/slideshow from the trip for a group of people from the charity network we went with, talking about the trip. I had a couple of glasses of red wine with the dinnner afterwards, oh man, it hit the spot! Been so long. Afterwards we moved on to a nearby cafe, just us, having a drink. So wonderful to be with them again, I felt all bubbly and alive, like I did on the trip. Just thought I'd share this with you guys, I get so much from your comments and emails adn so I thought I'd share this with you.

My glutenfree life is goiing well. Had the nevermind white bread this morning and some mülsi, salad with chicken and egg for lunch, no gluten dinner at the presentation. Nothing to see or feel on the leg yet.


Monday, 3 October 2011


We are having the most beautyful and warm autumn weather, the other day was as much as 25°C! The colours of the leaves are magnificent, the picture is from an old hospital I sometimes pass through on my way home. I love that summer is over, here comes months of more Lymphedemafriendly temperatures and outfits!

My application for the LymphaPress Mini has come through, and I am going to get it soon, so that's good. I've also just applied for the JoviPak nightgarment as well as new compression stockings. This time I am hoping to get four stockings and four toecaps. I've only got two now and it really isn't enough.

The blue palazzo's has arrived, they are nice and indeed widelegged. I will have to shorten them quite a bit and I'm thinking maybe I can make some sort of little scarf from the left over fabric to go with it.

I have started October by eating glutenfree, I am planning to do it for at least 13 days, perhaps more. I want to see if it has any effect what so ever on the Lymphedema. There are many things I'd like to try, but it needs to be at times where nothing else is going on with the leg such as new stockings, nightgarment, wrapping etc. to see if it works, and it has to be a time with a minimum of outings that includes meals as I don't want to be the one who can't eat anything or has to explain why I am on this diet. Now is the time. Later this month I am going to have a big wrapping session before being measured for new stockings and nightgarment and I also have some social outings coming up.
I've got some glutenfree porridge and müsli that I thought I could have for breakfast. The porridge was horrible though, so I immediately moved on to the müsli, which was better. Today I got some not very interesting white bread, but it was edible. Last night I made a lovely cauliflower soup with shrimps.

I have published a little Lymphedema Shoeguide. It's not much, but if it helps just one, that's good too. If you have any input, please leave a comment on the page.