LymphedemaGirl

Laundry bags

2012-03-01T03:57:00.000-08:00

I find that the mesh laundry bags that are often used for delicate lingerie are handy for washing bandages. If throwing nine rolls into the machine without bags one ends up with a humongous tangle that it takes forever to detangle. Placing a few rolls in each bag solves this problem. They don't really tangle much when inside the bags and if they do it is only a few instead of the lot.
I find that the zippers quickly falls off but they are also available with buttons instead.
They are sometimes called lingerie laundry bag or lingerie wash bag.

I discovered this video about Copenhagen anno 1937 the other day, have a look. There are even more bicycles now but the traffic is a little more organized these days. Not much though.

Salt with reduced sodium

2012-02-25T02:40:00.002-08:00

Here comes some apparently old news which nevertheless has only just reached me: Salt with reduced sodium exists. Salt is not just salt, salt is made of many types of salt. One of them is sodium and sodium seems to be the bad guy that binds the fluid in the body and therefore not the best friend of us with Lymphedema. The diet poll here on the blog shows that a majority experience a worsening of their Lymphedema when consuming salt. Although staying away from salt altogether is probably the best option I wonder if this is a sensible alternative to those who can't go without it?

Overhere there are a couple of reduced sodum salts on the market, I imagine it would be avalable in most countries.

Furthermore, although soy sauce is very salty it contains 40% less sodium than ordinary salt and so can be advantageously used for some things instead of salt. I am not sure about fish sauce which is used in the Thai and Vietnamese kitchens instead of salt, could very well be.

If you have any wisdom on this subject, please consider placing a comment.

Leg wedge pillow

2012-02-22T03:35:00.001-08:00

A kind reader here on the blog send me a link to a cushion designed to elevate the legs. I couldn't open the link but when I image-googled, using the search term I could see was used to find the link, up came a number of very interesting cushions. I have been dreaming about a cushion like this one. I used the words wedge elevate legs. Thanks Wendy!

Padding

2012-02-08T02:16:00.000-08:00

These are my tools that I use to shape my foot or to protect my sensitive spots when I wrap my leg or use my nightgarment. I never used to think I had bony feet. Both my mum and my littlebrother have a big bump sticking out next to their big toe though. I didn't but perhaps I was prone to this afterall.
I'm demonstrating on my good foot as some of you may be trying to keep your dinner down ;-) Kidding, it's not that bad.
The padding is held in place by cotton or gauze, you will see on one of the pictures.
My therapist made me these tools and she too uses them when she wraps my leg.

I use these "L's" around the bones near the ankle to maintain
some shape in the area as the fluid tends to build up here.

Like this. The pad is a little torn on the surface because I first
tried tape to attach it to my ankle when using it with my nightgarment.
Now I use gauze or cotton to hold it in place.

These two rings are made of the same material,
I turned one over to show how they look on the other side.
The bumpy side goes on the skin.

Like this. It can be a little tricky placing the rings while wrapping the gauze
over but I'm getting better. How dry and wrinkled my foot looks.
It had just been released after a long day in the shoe.

These are some new rings I bought the other day.

On the package it reads "pressure relieving rings".

Below I have made the hole a little tiny bit bigger and glued two rings together to make the padding higher. So far it has worked allright but I must take great care to place it very precisely or I can be sure to wake up in pain, rushing to tear the lot off.

These two pads are also made of the same material,
I turned one over to show how it looks on the other side.
The "canals" enables the fluid to travel away from the desired area.

I use them to put extra pressure on the forefoot.
I sometimes put the other pad same place but under the foot.

My foot with a ring on either side plus a pad on top, all held in place by gauze.

A kind reader of this blog send me picures of some "anklewheels" that her therapist made her. I showed the pictures to my therapist and she made me some. They are to go on top of the bones near the ankle, I don't know the English term. The "canals" allows the fluid to be lead away. They are quite good. Thank you, Sandra.

My anklewheels. About 8mm high.
The canals should probably be a little wider but one can work on that.

The wheels are to go over the stockinette but when I use
the nightgarment I don't use a stockinette and just put the wheels
directly on the skin, holding it in place with cotton or gauze.

That was it. Is this how other patients do it too? I wonder if these paddings are available to buy readymade anywhere online. I got the foamrings in a beautyshop similiar to Boots but they don't cater for Lymphedema patients specifically and really only had those rings.

Oz alert!

2012-02-03T04:35:00.000-08:00

It was either this guy or a jar of
Vegemite. Despite his nature I find
him more userfriendly ;-)

My Top 2 Australian songs:

No. 1: My really good Aussie friend that I met on my first trip Down Under once send me a tape he had put together for me. It's been many years now and I used to like this song back then too but especially in recent years it has really grabbed me and I keep going back to it, reflecting on the lyrics, wondering about the lives of those who made it back from "Nam". Do check it out.

No. 2: Once upon a time (1997) I worked as an orangepicker in a place called Leeton, Australia. We were a big group of backpackers from around the world and I had the time of my life. In the shack where we lived there was an old recordplayer and a few LP's. One of them was one with hits from 1983. We would play it over and over again. My favourite was this great song and the other day when I heard a Pat Benetar song that was also on that record I remembered "my song" and thought that by now it must be possible to find it online. And it was. Have a listen. Good video too ;-)

UK widefit shoe shop

2012-01-26T04:58:00.000-08:00

I have added a link to the Lymphedema Shoeguide. It is a UK shop with widefit shoes. It only ships within the UK and they are a bit pricey, but they have a large selection. www.widefitshoes.co.uk

I'd like to share this beautyful song with you. It's old now and they seldom play it on the radio anymore but I still like it. Have a listen.

Smile

2012-01-18T02:57:00.001-08:00

I was going through some old papers the other day and I found this that I kept. I hope you like it ;-)

Click on the picure and it will open in a bigger window.

Sensitivity

2012-01-11T05:42:00.000-08:00

My new Jovipak nightgarment has so far not been the success I was hoping it would. It is still early days though. The last two nights I have had to take it off during the night as it was causing pain on my sensitive spots. I have had the same problem many times when wrapping even though I try to protect the sensitive bones with little rings of foam around it.
The garment hasn't produced any results as to less swelling either. Last night I wrapped three rolls of Comprilan short stretch bandages over it, to mid thight, but as I had to take it off and I could not be asked to turn the lights on and check my leg I don't know if it was any good. I might try and get some better protectors soon. I feel discouraged as I had high hopes for this type of garment, so easy to slip on and go to sleep. Slip and sleep. Not.

Style Consultation #3

2012-01-09T07:47:00.000-08:00

Even though my Style Consultation started a bit dodgy as she put me into a hidious, long knit dress that brought out my not flat tummy and a couple of baggy jumpsuits that made me look like parachutejumper sack-of-potatoes hybrid I am glad I went and I will go again, perhaps when the Summer sale starts. One of my Christmas pressies was a voucher for that same departmentstore I went to, so I can use that next time.
I got some good tips and I took home some items that I would not have thought of or found myself. Good to get some new input and inspiration. I am sure many of you feel like I do about touring from shop to shop without finding anything that fits, especially these skinny-jeans days. I would recommend a Style Consultation if you can get to one, I think many big departmentstore do it for free.
Good news: The 70'ties style is coming back, widelegged items are ahead!

The general tips the stylist gave me:

Spice things up with colours, ie white top, green cardi, dark trousers/pants. Contrasts make a more lively look.
Wear colours that match your eyes. My eyes are blue-green, she told me to wear the colours of the sea. I'm more into red though but will give it a try.
Look in the mirror from a distance. Most of us stand fairly close to the mirror but try to move the mirror to a place where you can stand from a distance, it makes a big difference. Looking from a short distance makes us look bigger than we are and gives us a distorted image of ourselves. It may sound lame but it works, try it!
Set things off with accessories, ie a long necklace or a belt.

The tips that were more related to my leg challenge:

Shape your upper body by wearing short, tight cardigans. Emphasize a line at your slimmest point, your waist. That can be done by tucking the top down the trousers, wear a top in a colour different to the trousers and bringing attention to the area with a nice belt. I am thinking a fitted blazer will do the trick too. Lots of them in the new H&M spring collection. Leave the cardi or blazer open.
Tuck the trousers down into your boots to create a casual but fresh look. Tie the boots only loosely, this way the difference between the good and the bad leg doesn't show.
Wear legwarmers. Make them sit puffy and you can wear a skirt or dress that doesn't come all the way down.

If you have any tips on how to look good with Lymphedema any comments will be greatly appreciated, thanks.
You can see the other posts about the personal shopper here and here.

The diet poll

2012-01-07T03:41:00.000-08:00

There has been 40 votes in the diet poll so far, wow! A picture is starting to form and it is indeed very interesting. As you can see 55% say that salt/salty foods make their Lymphedema worse.
This is a screendump, you will find the poll itself overhere to your right.

Nightgarment

2011-12-28T05:52:00.000-08:00

After weeks of waiting, my Jovipak slip-on nightgarment finally arrived the day before Christmas. It has been allright so far, not too tight – actually not tight at all – not too hot and not too stiff. Much less stiff than bandages. It's a little dificult to put on but I guess I will find my routines eventually. I haven't noticed any difference yet but I've only used it a couple of times as I have been away at my parents over Christmas where I didn't bring it. It is quite big and takes up a lot of room. I'm thinking about going on a trip next spring and I am wondering if it will fit in my backpack.
The garment supposively works by softening and massaging the tissue so the compression stocking can do its job more effeciently, providing compression and leading the now mobile fluid away. I have heard good things about the Jovipak so I am excited about getting started properly. As sad as that sounds – looking forward to sleep with a ugly, very padded boot. I guess you know what I mean – I am looking forward to my leg getting better.
It comes with an extra sort of stocking to put on top of the boot itself to create more pressure. I might try that soon.

It's quite big.

Homemade Christmas present...

2011-12-20T02:21:00.000-08:00

... for my six-year old, dogloving niece. Good fun for Auntie selecting the dogs and naming them...

Style Consultation #2

2011-12-18T05:49:00.000-08:00

First, sorry about the really lousy picutures of myself. I took them with selftimer and they are indeed not very good, even having photoshopped them. Anyway, I hope you can still see something.
I got two pairs of trousers. One grey, one black, both by Principle (Debenhams). They are both very widelegged, especially the blacks. I loooove the thin leather belt on the grey ones. They are very well priced, only 43USD/28GBP and 63USD/41GBP, which I think is pretty good, especially the grey ones, they are quite stylish, good material and well made. I also got three tops, two cardigans and a belt. And the boots of course. The tops, trousers and cardis can all mix and match, very practical.

The stylist wanted me to tuck the trousers into the boots, just loosely. Something in me finds it strange to do that with dressy trousers and streetwear boots, but the more I think about it and look at the pictures, the more I m getting used to the idea. If the boots are tied loosely there is no difference to see from the good leg to the bad.

She made a point of emphasising my waist with short cardigans and sleeves pulled up to create a horizontal line where my figure is slimmest. That makes sense when having to wear baggy trousers.

Short and tight green cardi from Mango.

Black trousers from Debenhams. Zip in the side
and waistband acting as a belt.

My favourite: Dark grey trousers from Debenhams.
Comes with thin leather belt.

My other favourite: The super cool dark-orange belt (Pieces),
I think it goes really well with the creme top and jeans.

To come: My notes on the tips I got from the stylist.

Finally, I want to share this beautyful Christmas song with you, how can one not get in the spirit with this classic, performed by the legend? Here in Copenhagen we had snow today, yay!

Style consultation #1

2011-12-15T09:49:00.000-08:00

Yesterday was my big day with the Style Consult. It went well and I've got lots to show you come weekend when I can take pictures in daylight. Till then, these are the boots I got. Don't know how I feel about them yet, but I bet you can imagine my joy when I learnt I could get my big foot in them. They are from Clarks and their name is Active Air Jyro Hi.

Under the same moon

2011-12-12T01:13:00.001-08:00

Last night I was laying in my bed thinking. I was thinking of how many people from how many different countries is reading the blog. From the "engineroom" I can see that by now 87 countries from all parts of the world are or have been represented. That's a lot of countries. Lot of people. What if we could all meet...
We live in different worlds and have different lives but one thing connects us. Lymphedema. Even though we are far apart I somehow feel a connection. I imagined all of us going outside at the exact same time, looking up at the moon. We would be looking at the same moon and we would know that hundreds of others lymphers would be looking too, feeling comforted that we are not alone.

Still here

2011-12-09T01:43:00.000-08:00

I'm still here, didn't realize I had not posted anything since Nov 20. Since my big wrapping session at the therapist finished my leg has gone up. I pump and wrap most nights now which helps a little but it's difficult to get the bandages as compact as the therapist can, especially when I have to be very careful with my sensitive spots. Many a night I have had to get up in the middle of the night and take the whole thing off.

I have ordered the second new stocking from the fitter. I have been approved for two stockings + toecaps per year which I find it hard to get by on, but I will have to, as I haven't got the apr. 450$ a taylormade stocking costs. I am waiting for the Jovipak nightgarment to arrive. It is being made in America and it takes a while to make it and get it here. Can't be that long now, I think I got the approval and ordered it about two weeks ago now.

30 people has voted in the dietpoll so far. I really appreciate you guys wanting to contribute. Just over half says that salt makes the swelling worse, and I guess that doesn't come as a surprise as one often hears that salt is bad for lymphers as it it binds the fluid. Alcohol comes in second but what strikes me is how relatively many indicates dairyproducts as the bad guy. Interesting.

New stocking

2011-11-20T08:55:00.000-08:00

Last week I recieved the first of the new stockings. Like last time I ordered it with a pellot sewn into the stocking on both sides of the foot, near the bones. I hope you can see it on the picture, it is with the inside out. The pads take up some room in the shoes but it's not too bad. It makes a big difference for me as it maintains shape where the pads are. This only shows without the stocking on of course so one could say "what's the point", but to me it's a point. Without these pads my ankle would be enormous and this is an area prone to growing hard, which I really don't fancy. The stocking is from Medi. I am not sure how I like the black. It is more in-your-face but perhaps a little less Nora Batty, don't know... What do you think about colours on compression stockings? The black are definitely more practical reg. dirt.

I've managed to sell these long fancy boots I can no longer wear. They were so gorgeous. And expensive. I only got to wear them a couple of times before Lymphedema started. Even though I feel that letting go of them is accepting that I will never be able to wear them again, these boots are still worth a fair bit and they won't continue to be so I figured I'd try to sell them and use the money for new clothes at the style consult I have coming up. I was meant to go November 12 but they cancelled and rescheduled me to mid December. I sold the boots on an online marketplace a little like eBay but on a smaller scale. I got 500 DKK for them (91USD/57GBP) so I guess that was allright.

At the same marketplace I recently got these new jeans. Never been used, but I only payed about one third of the original price. They fit reasonably but there is a difference to see on the lymphedemaleg. Maybe over time if my leg get a little smaller they will be better, but I do use them. I seem to wear my jeans out relatively quickly because of all the cycling – the saddle tears.

19 people have voted in the dietpoll so far. It is indeed very interesting – have a peek at the score and please vote if you haven't already. It's overhere to your right.

I thought I'd share some fine words I came across the other day:

"It's impossible" said Doubt.
"It's way too dangerous" said Fear.
"It's also unnessesary" said Sensibility.
"But do it anyway" whispered the Heart.

It's sweet, isn't it? Have a good week, everyone.

Microsurgery

2011-11-07T09:22:00.002-08:00

There has been a comment about microsurgery, it is with the previous post. I knew that it existed, but have never heard of anyone IRL that have actually had it. Melissa, I am very interested in learning about your situation and how it's going after the surgery. I should be so very grateful if you would contact me on thelymphedemagirl@gmail.com
Update: Check out Melissas blog about her Lymphedema microsurgery.

Last week I went to have my leg measured for the new stockings and the Jovipak nightgarment that I hope to get – still waiting for Handicapcenter to get back to me on that. I do my best to keep the swelling down until the stockings are ready, with pumping and wrapping every night.

My new pump, the LymphaPress Mini is really, really good. There is a world of difference to the MultiPress12 I had before. My leg looks so fine and feels so drained after 45-60 minutes in the pump. The pumping really softens the tissue and that way prepares it for the bandages so they can do their job more efficiently.

Check out the diet poll (in the right column) and the interesting score so far.

The picture is of a little cycle/walk path near me, a little peaceful detour I sometimes take on my way home from work. The leaves are everywhere at the moment, there are places where a snowplough would be handy! I guess they will be out soon enough as winter is approaching.

Bandaged

2011-10-27T04:28:00.000-07:00

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 www.duoboots.com. 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.

(How) does diet matter?

2011-10-19T23:55:00.000-07:00

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.

Still shaken...

2011-10-18T01:54:00.000-07:00

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.

More Lymphedema?

2011-10-15T02:10:00.000-07:00

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.

Note on post about dressing like a LymphADiva

2011-10-14T07:41:00.000-07:00

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.

More shoelinks

2011-10-12T09:44:00.000-07:00

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.

Poshness

2011-10-08T08:45:00.000-07:00

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.

Bubbly

2011-10-04T12:24:00.000-07:00

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.

:-)

Autumn

2011-10-03T06:32:00.000-07:00

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.

Dressing like a LymphA'DIVA

2011-09-24T01:49:00.000-07:00

As most of the ladies here would know dressing up can be a challenge when having lymphedema. Though we may feel a need or want to cover up we can still look gorgeous. There are possibilities.

We need to focus on our good assets. I know what I haven't got – good legs. I haven't got a flat belly either. What I do have is a good collarbone, good shoulders, good hips, so I look for items that make these stand out and cover or tone down the not so good bits. I've always liked the idea of leaving a little for imagination anyway. This can be so much more elegant than a display of flesh, which I alltogether don't think is elegant.

These are some of the dresses I checked out when researching for something to wear for the wedding I went to earlier this month.

Green divadress from Goddiva. 48 GBP.

... also comes in stunning red. And other colours.

Halterneck with Balinese print, from Asos. ~~50 GBP~~. Now 35 GBP.

Red promdress from eBay. 57 USD.

Kimono style maxidress from eBay. 23 USD.

Turqoise flowerdress from FashionUnion. 40 GBP.
The one I ended up getting.

OMG

2011-09-22T02:51:00.000-07:00

Update (Jan 2012): The company mentioned below is no longer operating. Bummer.

My Goodness, I was having a little break here at work (ahem...) sniffing around on the net and I found this US shop where they sell pairs of shoes in different sizes – one shoe in one size, the other in another!!! This is a dream come true for lymphedema patients, isn't it? As if that wasn't enough, one can choose between a medium and wide within each size! I am about to fall off my chair!
Anyway, just had to share this ASAP. See what you think. Better get on with work, boss is back!

www.oneshoetwoshoe.net

Update: Unfortunately they don't ship to outside continental America, but perhaps they are willing to consider this, who knows. Apparently there are 140-250 million people suffering from Lymphedema worldwide. Anyway, at least it is good news for American readers.

Elevating my bed

2011-09-18T07:49:00.001-07:00

As I was changing the linnen on my bed yesterday I though I might as well show a picture of how I elevate my leg at night. As you can see I've put some old phonebooks under the bed itself, and under the topmatress I've put some towels in the right side. Quite a few, actually. Once all the covers are back on none of all this really shows.
I've got a post about a cushion designed to elevate the legs, check it out here.

These are the shoes I wore for the wedding, I got them two days before! Cheap-and-cheerful. The colour isn't very fancy at all, but they did the job and the dress would cover them most of the time anyway. I had to get them quite big, size 41 – I used to wear 38 or 39. I got an inlay to put in the one for the good foot and also folded up one of those little socks and put in the back of the shoe to fill it out. The pearls etc. around the ankle is not really my thing, but that and the zipper made the shoe sit pretty good and they were fine to walk in.

Today I have finished my annual batch of rosehipjam. I cooked it yesterday, let it sit overnight and transferred it to jars today. It tastes absolutely heavenly. Nothing more, nothing less. It is a big job to prepare the rosehips but the result is so worth it. Happiness in a jar.

JoviPak nightgarment

2011-09-16T01:14:00.000-07:00

Yesterday I went to the prostegist to talk about a nightgarment. They had the JoviPak, and that's the one I am going to apply for. I had it wrong about putting new compression stockings on hold until I got the nightgarment and letting that do it's thing, I actually have to be wrapped and get the edema down as much as possible before being measured for the JoviPak nightgarment. I will now make appointments with my lymphedema therapist about a big wrapping session, leading to measuring for stockings and nightgarment. I also have to go see my GP to get her to file for the nightgarment at the healthservice. Apparently the JoviPak nightgarment is well known and used in Norway.
What's the right word for the shop that makes compression garments, specialized footwear etc. – is it truss, prostegist or something else?

Yesterday was a good day for my country. The political situation have changed to the better and a decade of reversed Robin Hood has ended. New and better times are ahead, I feel.

I've ordered these stylish palazzo trousers from asos.com. They were reduced from 40 to 12 GBP, but there was only size 12 left and as I believe that is my size I thought I'd better get them before they are gone. Good price. And great, dusty colour. I am sure they will look good with some sort of black top. Looking forward to recieving them, they are already on their way. Asos has free worldwide shipping.

Again

2011-09-14T11:15:00.000-07:00

Barely is the wedding over before my older brother's 40th Birthday is coming up next month. He's been having a bit of a trauma over turning 40 but has now decided to have a dinnerparty at a nice restaurant in the town where they live. And yet again I have to go find something to wear... He says casual in the invitation, but I guess old, baggy jeans are taking it a bit too far. I am thinking some nice, dressy palazzo trousers and a fitted top with a long necklace. I had a quick look around this afternoon and I thought I'd let the ladies know that there are quite a few palazzo trousers/pants out there very reduced right now. Probably also maxidresses and -skirts. Have a look at www.asos.com for example.

Today I have made my annual batch of elderberryjuice. I do that every year. Good to have for those cold autumn- and winterevenings. My parents have loads of elderberries in their garden so yesterday I took about 2 kg home. It produced 13 one-mug portions that is now in my freezer. By freezing it I can use only a minimum of sugar, so that's good.

LymphaPress Optimal

2011-09-13T02:27:00.000-07:00

Before my holiday I had the LymphaPress Optimal to test and I managed to try it six times. Here goes:

The pump has two functions, actually four:

Gradient
PreTherapy + Gradient
Wave
PreTherapy + Wave

PreTherapy is a feature that sort of "clears a path" for better drainage during the treatment itself (Gradient or Wave). PreTherapy takes about 8-9 minutes before the pump moves on to the desired program, Gradient or Wave.

I have been running it between 45 and 60 minutes, pressure 40-50 and I've tried both programs, incl. PreTherapy.
Common to all days was that the foot and ankle were not drained nearly as good as with the LymphaPress Mini I tried previously.
The Gradient program seemed a little bit more effective than Wave as it maintains the pressure while the next chambers are filled.
Both programs operate in a very choppy manner. In the Wave program every other pump is very short, the other a little bit longer. On Gradient the pumps is more or less of the same duration.

Before and after each session I would measure my leg three places on the lower leg and three at the upper leg. The result was surprising, about half of the measurements had gone up, the rest a little bit down. As I mentioned the other day I have now applied for a LymphaPress Mini. I hope it comes through. I am still not all that hooked on the velcro boot, I am not sure it is tight enough and fits properly. Will try and get the one with a zipper.

The red cargo pants I ordered a little while back was a disappointment. The fabric was very light, too light for this style, the legs weren't straight and they were a little too tight on the bum, which I don't think this style should be.

Things are starting to be more normal again after a busy time at work, my holiday and preparation for the poxy wedding. This week I've got a couple of things I am looking forward to. I am attending a meeting where a controversial, but cool politician from Parliament will speak, and the next day is a big day – election day. It looks like were might be getting a new goverment, but it is all up in the air. Lots can happen still. Whatever happens it is a day to celebrate. Not everyone is fortunate enough to have the freedom to choose.

In this country we have had coalition goverments for donkeys years (great expression, isn't it...), and so we will again.
Our Parliament: On the left wing we have a very left-wing party called Enhedslisten (the Red-Green Alliance). Because the conservatives have messed up and thus reduced so much in recent years this party is now bigger than them! Then we have the Socialistic Peoples Party, then the Social Democrats. In the middle we have two centerparties – Liberal Alliance and the Social Liberals. On the right wing there is the Liberals and a horrible nationalistic party. And the Conservatives, of course. Beyond the Conservatives is where the US Democrats start. I was quite surprised, when I first learnt that.

At the moment it looks like it will be a coalition between the Socialists, the Democrats and the Social Liberals, perhaps relying on the Red-Green Alliance (not sure). The leader of the pack – sorry, Democrats – is a woman, so perhaps we will have our first female Prime Minister ever. Great song, by the way.

Halleluja

2011-09-11T07:34:00.000-07:00

Me in my fancy dress.

It is Sunday, the day after the wedding. It went well, but I'm so relieved it is over. Sadly I've been seeing it as an ordeal, partly due to all the fuss with the outfit and partly because I more and more am a homeperson. I am not good at crowds and staying up late, as boring as that sounds. I think it is natural to go through different stages in life. In first youth we love going out, partying, meeting people. As we get older I think we (maybe it is just me) instinctively feels like building a nest, settling down, finding piece. I've been in this stage for years, but I wish I had someone to be here with.

The happy couple was so beautyful, especially the bride. It is so wonderful and fantastic that these two have found each other, even after more than five years they are so into each other and so enjoy their life together, not to mention their beautyful little girl. They are so good and so right together. I wish I had what they have.
My outfit looked OK and I even had a couple of compliments. My leg behaved, it really had no reason not to, exept that the one shoe got a little uncomfy, but nothing major.
The dinner was an endless stream of speeches and songs with courses of food in between. There must have been 15 or more guests wanting to pay tribute to the couple. Overhere it is normal for close relatives or friends to make a song for the couple. One chooses a melody that everyone knows and writes a little song about the couple, their life, hobbies, how they met, funny annecdotes etc, photocopies it and hands it out to all the guest, and everybody sings. Yesterday I think there were three songs, and a lot of speeches. A set of friends performed a little, homemade fairytale about the couple.

Today I feel a little sad. I always get (more) emotional the day after events like weddings. Thinking about what was said in some of the speeches. Thinking about my life.

Today is also 9/11. Unreal that it's been ten years. My newspaper brought a lot about it today, ie a number of interviews with survivors, how they experienced it and their thoughts about it. The big national TV-channels are broadcasting from memorial events all day and I've seen some footage that I don't think has been transmitted before, at least not here.
I was at home that day, ten years ago. We're about eight hours ahead, so it was afternoon here. I had just sat down with a coffee, having a little break from domestic chores and turned on the TV, and there it was, on all the newschannels. It had just happened, but the towers were still standing. As soon as I realized what was going on I called Mum and Dad to let them know, in case they hadn't heard already. The following hours I sat in disbelief, glued to the TV, switching between CNN and the Danish news channels, trying to take it all in, which I couldn't. Who could? In the evening I had a dinner appointment with an old friend I don't see very often and hadn't seen for a very long time. It had been arranged months ahead and I couldn't bring myself to cancel even though I just wanted to stay home and watch the news, and it felt wrong going out having fun, catching up with my friend while all this was going on. On my way to the restaurant there were people from the big news agencies handing out flyers on the street about the horrible news. Later that night people would spontaneously head for the churches, looking for some sort of consolation, I guess. In the weeks that followed the area outside the American embassy was a field of flowers, and people would stop by to pay their respect.

Back from holiday

2011-09-07T04:36:00.000-07:00

Hi'ya, I'm back after a wonderful holiday in London and Scotland. It was good to see my good friend again and have a chat and we had a wonderful trip to Scotland. Edinburgh is a lovely city with much to see. The highlands was amazing, really beautiful with rugged mountains, grassy hills, steep cliffs by the sea, lots of sheep etc.

We got the train from London to Edinburgh and on the way back we went by coach. We were a little late arranging transport so the train tickets were fairly expensive, therefore coach back. It cost only nine pounds but took ten hours, and those I had dreaded a little, mostly in regards to the leg. It went okay, we had three breaks where I could get out and exercise a bit. I think that being on a coach for ten hours is different than on a plane, as the pressure must make a difference when flying.

In Scotland we stayed at B&B's, really nice ones too. What a relief it was being able to take the compressionstocking on and off and wash and dry it in front of my friend without being too embarrassed or trying to hide it. My friend knows about my condition and is really cool and compassionate about it.

I came back Saturday late afternoon, quite tired after the journey. The flighttime is only and hour and a half, but it takes forever to get to the airport, through the airport and from the airport. Gatwick was madness and so was Copenhagen, which is usually isn't. Sunday I was involved in a charity event all day where children from asylum centers and other not so fortunate children and teenagers had a good day out with sailing, games and goodies. I was knackered when I got home that night, a lurking cold added to feeling miserable.

In London I shopped a couple of things: Treats from Poundland, the purple (and nicely strong) Nescafe (this particular one is not available overhere), crumpets, knickers from Marks+Spencer, razor blades and a few other bits from Boots, ie a small spray bottle that I think it might be good to carry with me on hot days for spraying the stocking. I stocked up on the razor blades, they were indeed cheap.

In Edinburgh I had the pleasure of catching up with my former landlady from my time at the language school in Cairns, Oz. She is Scottish and moved back a few years ago. It was really good to see her, and a bit surreal after 15 years. We had coffee and lunch with her and went for a little walk before she saw us off. We talked a little about my condition, and she said that it was formerly known as Dropsy. I'd never heard that word before. It seems to be a term used for various forms of fluid retention, so perhaps it is not exactly Lymphedema. I have only researched it very quickly since being back, but I will do more when I get time. Any of you native English speakers out there know anything about this?

Next week I am going to see the prostegist about a nightgarment. Feeling a little excited as I do think it is going to bring my swelling down. Also the wedding is coming up, it's this Saturday. What a production not only for the happy couple but indeed for the guests too, perhaps more female than male. Finding a dress, having it shortened, getting a purse, shawl, shoes, jewellery... Most of it is in place now, only need shoes, but I do have a pair I can use if I don't find others. Got my eyebrows done today.

So long...

2011-08-23T23:04:00.000-07:00

I was hoping I would have time for a post about the LymphaPress before my trip, but time is up, I leave for the airport in two minutes. See you soon!

Cargo pants and LymphaPress Optimal

2011-08-20T05:58:00.000-07:00

The other day I purchased these funky cargo pants at eBay. You can find them here, they are 35$ plus shipping, and they ship worldwide. It was 12$ to here. I hope the legs are wide enough, but the do seem quite wide. They come in a number of different colours. I think I will cut those straps off. I wonder if I'm too old to wear such pants. Still, nearly 40 is different now to what it was say 25 years ago. Anyway, if I like them and they look good on me that's all that really matters.

I’ve got the LymphaPress Optimal at home to try for a week, a nine kilo monster and quite a challenge to get home on the back of the bicycle. Anyway, I've tried it three times so far and can do three more session before I must return it. Against all expectations I am not all that impressed. The tissue does soften up a little, but the foot, leg and ankle doesn’t feel as drained as with the LymphaPress Mini. All three times I have measured my leg six places before and after pumping and at least half of the measurements have gone up! Really not the idea. This evening I am going to increase the pressure to 45 or 50 (was 40) and see if that’s better. More on this later.

Now is the time for making rosehipjam. I do that every year. A bit of a job to get the suckers ready, but the results is heavenly and worth every minute. This year I have been picking a little portion everyday – they grow in big numbers near my work – cleaned them and frozen them, and after my holiday that starts Wednesday I am going to make the jam. Doing a little everyday is not as tiring as doing three-four days of 2-hour sessions.

The dress

2011-08-17T04:02:00.000-07:00

Finally the dress for the upcoming wedding is in place. I have chosen this beautyful baby by John Zach, purchased from www.fashionunion.com
I was a little concerned as to how it would look IRL, as it wasn’t all that nice where I ended up purchasing it, but a little cheaper than where I saw it first, and where this picture is from. Anyway, it lived up to my expectations and I think I will clean up nice. It's a little bit more turquoise than the picture.
I probably need to have it shortened a little unless I find some shoes with heels that I can get my foot into. I am not sure heels are a good idea though, as the foot will be pushed forward in the shoe and the upper material will gnaw into the forefoot. It will look akward and feel uncomfortable. It is mostly the discomfort I have in mind as the dress is floorlength anyway and hides the shoes.

Lymphedema in-flight exercises

2011-08-12T08:57:00.000-07:00

I have created a page with my tips and exercises for long-haul flights or ie long train- or coachrides. It is filed under Pages in the right column, or use this link.

I will soon make use of them myself again, as I have a 9-10 hour busride from Edinburgh to London coming up. Hopefully there will be more than one stop along the way so I can get up and exercise the leg.

Style consultation

2011-08-09T11:54:00.000-07:00

My new look?

I have discovered that in one of the big departmentstores in inner city one can now get a free style consultation, so I have now booked one. It is not until November, as there is a long waitinglist, but that's all right.
I find it a challenge to dress smart with the challenges of Lymphedema and I deperately need inspiration. I look forward to the consultation and I have high expectations. It is obviously something that they do to sell and I will probably buy something, but most important, I am taking lots of input and good ideas home with me to use for future buys and items I already have in my wardrobe.
There are two free consultations, a one-hour, and the other – the one I chose – a two-hour. One fills in an online form with measurements, wishes etc. and uploads a picture and then, upon arrival, the stylist has selected a number of outfits to try on. In the form there was a box called "Special considerations" in which I explained the situation and also stated minimum width that trousers need to have.

Today I called the LymphaPress distributor to ask if the LymphaPress Optimal I am going to try would arrive soon, and they said they would send it today. It shall be interesting to try it.

Nightgarment

2011-08-04T08:43:00.000-07:00

Having beaten around the bush for way too long I have now decided it is time to get a nightgarment. I have postponed it because I feel akward enough as it is with compression stockings, pumping, bandages and what have you, and because the time when I am in my bed with nothing on the leg is a haven. A time where I can feel almost as before Lymphedema. Almost normal.
Nevertheless, there is no doubts a nightgarment will do my leg good, and so it is foolish not to do it.

I have made an appointment next month with the prosthetist where I also get my compression stockings from, they sell nightgarments by Jovipak and Mobiderm. I am going to have a chat with him about what might be good for me, and perhaps get a testgarment to try at home. I am very interested in learning about others experiences with nightgarments, both the above mentioned and other brands.

Any readers wearing nightgarments – if so, which one?
Is it effective?
Is it hot at night?
Is it easy put on and take off?
How is the mobility, if any?

I just came across a tip about putting the garment in a plastic bag in the refrigerator during the day, leaving it nice and cool for the night. Supposively it "keeps its cool" pretty good through the night. Clever.

Shopping for Lymphedema wear

2011-07-14T08:58:00.000-07:00

Since my Lymphedema started, going out shopping is no fun at all. Finding trousers and shoes that fits the leg and foot is like searching for a needle in a haystack. However, webshopping is something else. How easy and comfy it is to browse from home, having all the shops in the wolrld only a click away, and then having looked and chosen, recieving the goods in my mailbox or at work – how much easier does it get?

Realizing how much hassle some lymphedemapeople have finding clothes and thinking of how I would have liked any tips on this I have launched a page here on the blog with my tips on shopping for Lymphedema clothes.
I have put the link in the right column on the main page, but you can take the fast lane here to check it out now.

Hiking

2011-07-10T03:09:00.000-07:00

Yesterday I went walking with a hiking club that I used to go walking with before Lymphedema. It was the first time since the Lymphedema started. Previously, I would sometimes go on 10-15 km walkingtours and also some weekend trips to Sweden, but since the Lymphedema began I for various reasons haven't been on any tours. In the beginning I had to learn what I could and couldn't do, then I was bandaged, then my walking shoes didn't fit, the route was too long, the weather was bad etc etc, but yesterday I finally managed to get going, and it was so good! Wonderful to go walking again, super nice area and really good to get out and meet some new, positive, genuine people. Now I will try and attend walking tours more often when there is a one that is right for me.

I was knackered when I got home though the tour was only 13 km. I guess it's about being used to it. The little toe on the lymphedemafoot had been squashed a little, but today it was back to normal – or as normal as it gets. It seems the foot and ankle is a little bigger today so I've put a little bandage on top of the stocking, just two rolls, and only for wearing indoors.

LymphaPress Mini

2011-07-03T06:03:00.000-07:00

I have now tried the LymphaPress Mini five times and I must say it is clearly better than the one I have (Pulse Press Multi 12). It makes a difference that it inflates from the foot upwards every time instead of all over at the same time. Especially my foot and ankle feels completely different and flexible with the LymphaPress, as if it has been completely emptied of extra lymph fluid. It wasn't perfect around the knee, and I am not all that keen on the boot with Velcro, but perhaps it is possible to get it with a zipper, and also, this one may not match my measurements a 100%. All in all it was better than the one I have now, so I will make the arrangements to apply for one.

Oh man, was it hot and muggy yesterday, and it is building up again as I am writing this. I went out for brunch with a good friend, and when I came home after having cycled in the humid and warm air, I ran for the atomizer which I store in the fridge, and sprayed the compression stocking. Oh Heaven! The one I have is big, one liter. I did have a smaller one that I brought with me to Thailand and Laos in November, but I dumped it on the way since I never used it and it just took up room in my backpack. On my trip to England later this summer I am going to get some 100ml travel bottles with spray to have in my bag, I can see they have them in Boots.

Before the storm.

Here in Copenhagen we had a torrential rainstorm last night with thunder, lightning and all in a volume that no one can remember having lived to see before. Roads and basements were flooded, Tivoli Garden evacuated the guests, movie theatres closed and some areas were cut off from electricity. I live on the top of a hill so my building wasn't in trouble, but the window in my bedroom leaked at the frame when the rain came pounding directly on it with great power. It is an angled window like the ones you see in the roof on the picture. I managed to save my bed just in time and organise some containers to collect the water. I think we're in for more this evening...

Let the search begin

2011-06-29T00:58:00.000-07:00

This one, perhaps?

I have been invited to a wedding. It is not until September, but to not leave things to the last minute I have already started to look for a dress. September is here before we know it too. I do have a beautiful, long prom dress in the back of my wardrobe, but it is at least ten years old, worn and probably too short to hide the lymphedemaleg.
I am, in a way, looking forward to dress up big time, if the dress is beautiful, fits well and I feel comfortable. It is so important to feel comfortable. Can't count the times I have worn uncomfortable shoes, had pantyhoses falling down or causing spare tires, worried about the knickers showing etc, etc. I really can't be bothered with all that anymore. It's not fun.
When I hear the word bothered, pronounced with Brit accent, I often think of this extremely funny video with Tony B and Catherine T.
Anyway, so far I have found a couple of dresses that I am going to have a closer look at, all online, from Denmark or abroad. The web sure is handy, one can get anything! At the moment I am waiting for some vanillapods I ordered from vanillamart.com
I will have to get some shoes for the wedding too. I wonder if I can get my foot into a pair of heels. I will probably have to buy two pairs in different sizes as dressy shoes is no good for putting an insole into.

Update: Check out my tips on shopping for Lymphedema wear.

Pumping and wrapping

2011-06-27T09:44:00.000-07:00

For the good part of two weeks I've been pumping and wrapping almost every night and last weekend even pumping in the morning upon getting up. The measurements don't show any significant difference but the tissue becomes soft and the lymphfluid more sort of movable. I notice that when I (no stocking on) lie on my back in my bed with my knees pulled up to my chest, my feet are now next to each other instead of like before when the lymphedemafoot due to fluid was much higher up than the other. In other words; I can bend the lymphedemaleg more now.

I am getting better at wrapping, but I need many rolls of bandage. I have nine rolls of shortstretch bandage and that's what my Physical Therapist uses to wrap me, but I find it hard to get the bandage as compact as she can, with only nine rolls. Will ask her for some tips next time. Might have to get some more, was thinking of getting another set anyway.

I have already received the LymphaPress that I am to test, that was quick. Bit of a hassle to get the big box home on the bicycle. Unfortunately one little part was missing, but I will get that tomorrow. The trial period is only just over a week, so I will have to return in next Monday. Hopefully I can pump every night starting tomorrow and get an impression of it. I'm excited to try it.
The pumping and wrapping has also meant that I can now wear my beloved old trainers/walkingshoes again. But only just, and I take it off under my desk at work.

The trick with spraying water on the compression stocking with a atomizer is not bad at all, it cools the leg, which is much needed on a day like today, it is very hot overhere at the moment.

In line for a LymphaPress

2011-06-21T03:07:00.000-07:00

Last week I phoned the company that sells the LymphaPress compressionpump overhere. I spoke with a real nice lady who put me on a waiting list for a pump to test. It will be interesting to try it once I get it. We talked a little about the pump I have now (Pulse Press Multi 12) and she said that it works by inflating from the foot upwards, but only the first time – from then on it inflates all over at the same time, which I don't think makes sense when the idea is to push the fluid up and away from the leg. I do think it works somewhat afterall, especially after I brought it to the physiotherapist who adjusted the settings to 30 seconds of pumping and 10 seconds pause, but it doesn't seem to bring the swelling down. The LymphaPress inflates from the foot upwards every time.

It turns out that the company I got mine from does not, as I had been told by the hospital who applied for it for me, have the competitive tendering on compression pumps in my area, they are just "really good friends", whatever that means – with the hospital, which is why I got this one and not ie a LymphaPress.

I'd be very happy for comments if you have experience with the LymphaPress. Thank you. All readers can see comments and benefit from them.

On having flaws and handicaps as a younger person

2011-06-10T02:03:00.000-07:00

There are many who have something. Also younger people. Among people I know, know of, or have known or known of I can list the following, all in their 30ties or early 40ties:

• Sleep apnea. Must sleep with a mask that helps with breathing.
• Hearing aid. (four people)
• Psoriasis in the face and most of the body. (two in face+body, three body)
• Marks/scars in the face and neck after removal of birthmarks.
• Bad eye.
• Diabetes
• Cerebral Palsy, suddenly onset in the 30ties.
• Deformed and missing fingers and toes.

In that light my swollen leg and the need for compression stocking is "just" my thing. Like so many others have "a thing". I don't think differently about these people because of their "things".
I don't take comfort knowing that someone is worse off than me, but I do take a little comfort that mine is not worse than it is. It is bad enough though, but maybe it helps a little to see it in light of the fact that it is not so unusual to have something. And I can even hide mine.

After I've gotten Lymphedema I have become less judgemental of people that act or look more than a little different. Not that I was a horrible, judgdemental person before. It's not always because someone is crazy that he or she behaves a little "alternative", the person may have had a brain haemorrhage, and one is not necessarily fat because he or she is a lazy dog who can't get his act together and lose weight, but because of an addiction beyound control or a disease that the person is not to blame for. And what if one was to blame? Nobody deserves to be sick.

Staycation

2011-05-30T17:30:00.000-07:00

I am planning a little staycation in my flat. Thursday this week is a bank holiday and I am taking Friday off too so that's four days, a little holiday. Very little. My plan is to read and do qi gong. A lot. I recently bought Buddenbrooks by Thomas Mann. I love to read, and especially as a child and teenager I used to read a lot. Not so much anymore as I often find it difficult to find the time, peace and concentration for it, but once I do get started on a good book I don't stop.
I plan to do two sessions of qi gong every day, one in the morning and one in the afternoon. These days I do 16 minutes of standing and sometimes some additional exercises, but I want to increase to 20 minutes eventually, hopefully I can soon do perhaps 18 minutes and some excercises such as Ba duan Jin.
I am specifically planning to not do any housework or major cooking sessions (except one), which will mean no guilty concience for curling up with my new paperfriend.

Hopefully there will be time for another favorite activity; lying on my sofa watching the clouds drift by, listening to Leonard Cohens beautyful songs. My favorites are Alexandra Leaving and Love Itself, but also In my Secret Life and The Faith are special to me. He is such a unique artist. A gift to mankind, as I think it says in one of the comments on Youtube. The poetry, the simple but yet so fulfulling music. His deep voice oozes inner peace and goodness. I love that he is being celebrated so much while he is living, instead of just after passing.

So long, old girls...

2011-05-28T08:56:00.000-07:00

Today I have packed almost all of the old shoes that I can no longer get my feet into, at least not the lymphedema foot. They are going to my storage room in the basement. I could have thrown them out or given them away, but I feel it would be accepting that this is for life, and I am not ready to do that. Some of the shoes, however, I will try to sell – some heels that I don't care that much for anyway. I hope that one day I'll be able to use some of my old companions again. Feeling a little sad now, looking at the picture. I am going to do the same with some skirts and dresses I have.
It looks a bit over the top with 16 pairs, but most of them are old.

I am still making sprouts, alfalfa again and now also chickpeas – or gabanzo beans as I now know they are called in America. They sure are delicious, chickpeas – can't help munch on them even though they are not done yet, hmm. I use a little sprouting jar for the peas, but any glass could do.

I have ordered as much as three pairs of trousers – two very light fabric summers trousers and one pair of very widelegged jeans, feeling excited to get them all.

Pain and magic

2011-05-23T12:00:00.000-07:00

Yesterday I went to my Sunday yoga class for the first time since the trip and to be honest – it sucked! I felt like an elephant and my body seemed all stiff, especially the groin of the lymphedema leg. Many of the poses I could not do due to either general stiffness or lymphedema, and the instructor wasn't all that great. I just longed for the torture to be over. Today I hurt all over.

This evening I went for a little bikeride at the moore near me. It's been sunny today and the light is so beautyful this time of day. There is hardly any people out at this time and so the only sounds to be heard are the birds. Everything is so green and lush right now, and at days like today it is like magic there.

Sprouting

2011-05-21T05:24:00.000-07:00

Yumm – toasted ryebread with avocado and crunchy, homegrown sprouts.

To try and make my diet a little healthier I have started sprouting again and today I harvested my first crop this time around. Sprouting is great, it's yummie, easy, cheap and very, very healthy. How handy it must be if living in ie Greenland, where nothing grows and the fresh produce they do get has to be flewn in and thus cost a fortune. Or the Australian outback where there could be hundreds of kilometers to the nearest town and one doesn't go grocery shopping every other day.
The ones I just made are alfalfa sprouts, but I have some samples of broccolisprouts, beetrootsprouts and some others that I'd like to try soon. I use a sproutbag.

Compressionpump seeing the physiotherapist

2011-05-19T02:57:00.000-07:00

My compression pump.

The new settings, pumping for 30 seconds, then resting for 10. Pressure apr. 50.

Yesterday I was at the physio therapist and I brought my compression pump. My bike sure was heavy loaded, as I had my giant bag with the pump, sheet, bandages and parashutepants and sandals for possible wrapping on the back, but I managed. When going home, I thought it was best to bring some balance to the vehicle, so I had to get a cream cake out of a bakery and put it in the basket in the front of the bike. What else could I do?
It was very interesting to bring the pump so my therapist could see it while it was working. She was not happy about the way it was pumping, but after she adjusted the settings and it had been running about half an hour while she performed MLD on my upper body it turned out that it had had an effect afterall. She could tell on the foot and feel that the tissue in the calf had loosened up some places with lumps of build up fluid before. I will be using it every night for a week or so, then going to see her again and I will measure the leg tonight and after the week of pumping too see if there is any difference.
My therapist thought I should try and borrow a LymphaPress from the distributor, so I will do that. Apparently the LymphaPress works a little differently than my pump, it sort of "rolls" the air up the leg in a better way than mine and that is what it's all about – pushing the lymph upwards so that it can be distributed into the rest of the body.
It was also really good to get the settings adjusted. From now on it is 30 seconds of pumping and 10 seconds pause.

My razor

2011-05-16T08:58:00.000-07:00

I thought I'd bring a little tip about the razor I use for shaving my lymphedema leg (and the good leg too). The razor is called Intuition, I am sure many of you already know about it. Around the blades is a soap unit which acts as shaving foam and provides a very gentle, safe – and smooth – shave. It is as if the skin is protected by the soap unit while shaved, one can hardly feel it, though it is very efficient. Before Lymphedema I would sometimes use this, and at other times an ordinary womens razor, but for the leg I dare no longer use an ordinary razor, too risky. A lymphedemagirl must take great care to not cut oneself due to the risk of infections, and I feel safe with this one. Although I find it very safe to use I still take extra care around the ankle, kneebend etc.
The units cost a fortune overhere so I usually stock up when abroad, ie in Boots when in London.

I just found out that California Dreaming is excellent rebounding material, the rythm and the duration is perfect for jumping! I've got it in a Forest Gump album on my computer, but you can listen to it here.

Have started up some alfalfa sprouts, they are to soak till tomorrow morning.

Thinking

2011-05-11T09:23:00.000-07:00

It feels a little surreal now, the trip being over, with all the the worries I had before going, in terms of whether the leg would behave, if the others would notice, insurance in case something happened etc. It was a sort of study trip arranged and paid for by a posh organisation (nothing religious or anything). When interviewed for the program I was asked if I had any illnesses, and before I knew it I had said no, because I don't feel ill, and I don't see the Lymphedema as an illness as such, though it is. I worried that if something happened with the leg and I had to go hospital that "the suits" who selected me would be angry and send me home or make me pay all the money back. I thought about confessing just to have my concience 100% clear prior to departure, but decided against it. Afterall, my doctor had signed my paper about me being able to attend and I carefully checked that my travelinsurance would cover, should something happen.
I needn't have worried because everything went smoothly, nothing happened. I almost can't believe that the trip came and went, now it is all over and nothing bad happened and no one discovered anything. Not even the girl I often shared hotelrooms with. I wish I could have just told her, said "these are the facts, I too think this darn compression stocking is as ugly as hell and I hate wearing it, but I have to!". I think that even though she would probably feel symphathy for me she would also be disgusted, secretly. She is very sporty and very chic too. I don't think she would be able to relate to it.
Perhaps someday, under the right conditions, I will be able to share a room, telling the roomie about it, not having to hide. How much easier it would be, I tell you I had to be creative sometimes on the trip!
I loved being in Stockholm with my good friend last summer. She knows about the Lymphedema, and I could do what I had to do without feeling embarrassed. Hopefully we will make a trip together somewhere this year too. She is so good. So compassionate and understanding, unlike most others (when it comes to understanding).

I am listening to this song, I have loved it for years, but only recently did I get my hands on it. I don't think the lyrics make much sense, but the music, the way he sings it and the individual sentences grab me. Also the video with the before-and-after pictures and the stories they tell.

Cabbage poultice, Vol. 1

2011-05-08T12:59:00.000-07:00

Savoy cabbage (isn't it?)

Ready for action:
Olive oil, kitchen towel, cabbage, old bandages to hold cabbage in place, plastic wrap and tape.


Lanes of cabbage leaves wrapped around my leg, covered with plastic wrap to hold it in place and avoid to much mess in bed. After I took this picture I put some old long-stretch bandages on to keep everything in place.

For a while I have been wanting to try cabbage poultice to see if it would have any effect on my Lymphedema. Apparently this old household remedy is good for many things, ie various types of swelling, so I thought I'd give it a go.
I measured my leg Saturday morning and again Sunday morning having had the cabbage leaves on for the night, and the measures had gone down a little. Not very much though, and I am thinking that it might not be the cabbage, but the bandages, although I just used some old long-stretch bandages and I didn't do a proper lymphedema wrapping, the wrapping was only meant to hold the cabbage leaves in place. I will try again soon, and again later with another type of cabbage. I think the one I used yesterday was Savoycabbage.
There are different ways of doing a cabbage poultice, I did it with whole leaves that I cut into lanes, but one can also grind the cabbage with water into a think paste and apply to the affected area, though not for a whole night, only an hour or so.

Rebounding resumed

2011-05-04T08:45:00.000-07:00

I have resumed jumping on my trampoline. In fact, I started jumping again a while before the trip. My physio therapist thought that I should stop because she thought it was a rather stiff motion for the foot and ankle, and it may well be but I am convinced that it is essential that the lymph fluid gets exercised in order to not get "stuck" and and irreversible and thus the tissue getting hard. If that happens, it is for good.

When I started to jump a long time ago (see here), my leg was rather hard, but after a period of rebounding several times a day it went quite soft and even a little bit smaller. It probably means that it was still reversible, and it is because bandaging still helps, but I strongly believe that activities where gravity is involved are worth gold.

My problem area is the area around the ankle. When I go to bed at night and remove the compression stocking the tissue is hard and built up, though less when I have been wearing the stocking with the sewn-in pads. I am terrified of the tissue getting hard and stuck. I will have to do more to bring the size of my foot and leg down in case it should "get stuck".

I read many places that rebounding is good for the lymphatic system. Any other "jumpers" out there?

The flight

2011-04-25T01:50:00.000-07:00

The long flight went really well in terms of Lymphedema. The longest bit was nearly 11 hours. I did as my physiotherapist had advised, and was often up walking, kicking my bum etc., and in the bathroom I would do 15 deep squats every time. I also did a lot of deep breating as well as some pelvic floor exercises. The leg was hardly marked by the flight upon arrival, fantastic! Also the trip home went fine, same procedure as the outward journey.

Update: See my tips and exercises for flying with Lymphedema here.

I'm back!

2011-04-25T01:45:00.000-07:00

I am back from my trip to North East Asia. It's been fantastic, I have seen so much and had so many good times with wonderful people. Being with my little four-person group has been invaluable, we have had so much fun and it has done me a world of good. I think I've laughed more in the last five weeks than the last two years together, it's been wonderful! It's been going really well with my lymphedema leg, no problems. For the sake of archiving I am going to make a separate post about the flight. The lymphedema has behaved and no one has noticed anything. Some might say it is silly to be so inhibited about it but currently this is how it is. I'm not interested in the questions, pity and concern so I do what I can to hide it. Many times I shared hotelrooms with one of the others and at times it has been a challenge in terms of putting on and taking off the compression stocking, let alone washing and drying it, but I've found a solution every time. One time I could put it under the bed to dry, another time it hung under the jacket in the closet.
We have eaten perhaps two thirds of all meals on the floor at low tables, shoes off, and it has not been a problem as I wore black microfiber stockings over the compression stocking so this could not be seen. I am glad that I had practised to sit cross-legged, it was hard enough as it was, but without practise I surely would have been up the creek.
It's good to be home. Yesterday my loving parents came to town to spend the day with me, how wonderful it was to see them again. Even though it's "just" been five weeks, it seems my Dad looked older.

My beautyful new skirt

2011-03-15T03:30:00.000-07:00

Check out this beautyful long skirt I recieved yesterday! I ordered it just over a week ago, and hoped – but didn't think – it would get here before the trip, but it did, yippiii! I got it out of a place called missethnic.com, in Thailand. They have numerous, very beautyful and unique skirts and other things, I almost couldn't make up my mind which to buy.
It is very light, but still lined. Perfect for a summers day. I will bring it on the trip for special occations, to go with a white top and a colored scarf or shawl, if I can find one.

Update: Check out my tips on shopping for Lymphedema wear.

MBT shoes

2011-03-13T03:19:00.000-07:00

At Qi Gong training the other day one of the others wore MBT shoes. She is a physisian and knows about my lymphedema, and she thought it might be good for me to try MBT-shoes as lots of different muscles in the lower legs gets exercised and thus can stimulate the lymph flow. I tried her shoes, and it felt really good walking with them on, I felt like I was floating, as on the rolling sidewalks in airports. Subsequently I googled lymphedema and MBT’s and found a site where it said that the Vodder clinic in Austria recommends their patients to use MBT’s. I'd like to try, but boy, are they expensive! However, there are copies available, I saw some from Puma, or maybe it was Fila. Any readers out there who have experience with MBT shoes in relation to lymphedema, or any input on the matter?

Not long till the trip now. I hope we get to go, despite the terrible events in Japan. The situation is very distressing and worrying. Who knows what will happen if more nuclear plants explodes or melts down. I really feel that nuclear power is too dangerous for humans to be messing with at all. I've been to Japan and seen what nuclear radiation can do, and thus it seems odd that Japan of all places choses this source of energy. But, as my good friend suggested, it may be their only choise. I don't agree though.
I've decided what to do reg. the long flight from Europe to Asia. I am going to wear one of the old class three toecaps – the one that I have cut a hole in for the bunion – and when aboard the big plane, I will put take the tocap on the outside of the stocking to minimize the pressure on the sensitive area. Last week I went to the physio twice and my therapist advised me to do plenty of exercises on the flight, both knee-kicking and -lifting, deep squats, deep breathing and pelvic floor exercises. I hope the flight will go well. If new readers since my trip in autumn have any advise as to flying with lymphedema, I'll be very grateful.

Update: See my tips and exercises for flying with Lymphedema here.

Yoga and new clothes

2011-02-27T12:29:00.000-08:00

Today I have been to my Flow Yoga class and it was good. It was the instructor with the most stretching, so I was looking forward to it. I work hard to get ready for the trip to Korea and so I also do some exercises at home. I eat dinner sitting cross-legged on the floor in order to get used to it and hopefully get a little better of enduring it. The other day I lasted the entire 7-news, which is 25 minutes! Not long till take-off now. I hope I get to write a post or two while there.

I have received all the clothes I had ordered and most of them are keepers. The Palazzo pants are from Asos (photo from there), I think they will go well with the new lace top. I think it is good with something relatively fitted for the upper body when the trousers or skirt is wide. The trousers need to be shortened, must sort that soon. I mostly do that myself, but with this fabric I think I am better off leaving it to a professional, so I will drop them off at a tailor I pass on my way home from work. The trousers are also available in two other colors – a beige and a kind of copper brown.

Yesterday I managed to sell my old skiing pants on an online auction, hurray! However, I have agreed with the buyer that she can return them before Thursday if she changes her mind as she wasn't sure about the size, so I've got my fingers crossed that she will want to keep them.

Update: Check out my tips on shopping for Lymphedema wear!

Art

2011-02-25T04:34:00.000-08:00

Sunday I went for a Flow Yoga class again, and it was good. It was another teacher than the first time, apparently there are two of them that take shifts. The instructor this time was also good, and part of the class was the same as last time, though not as much stretching and more sitting on the knees. I couldn't really do that and when the instructor noticed she came down to me. I said I had something with the lymphatic system, and then she asked me if I had Lymphedema and if I wore a compression stocking! Imagine someone who knew what it is! She was really sweet and showed me a different exercise than the others did and now I know that she is aware of my condition.
Although there wasn't quite as much stretching as the first time I do feel that I've been doing something, as my body felt rather beaten up the first couple of days after. Nothing compared to last time though, when it wasn't until one week after that I was back my my normal self!
I've stopped measuring my leg every morning and evening, now I do it only in the morning and not even every morning. My physical therapist thinks I should tone it down a little, maybe it was a little overkill, and contributing to making me hysterical if the measurements went up a little.

Last Friday I walked past a shop where they had some funky, wide shoes from a brand called Art in the window. They looked a little like El Naturalista or Fly London, they looked comfy – and festive too. Back home I googled the brand and found several places where they are sold, including this International one, at least for Europe:
www.spartoo.eu/Art-o105-0.php?type=1&track_id=adwo_4811

The last few weeks the leg has been quite good, not as much fluid build up in the foot. I'm wondering if it is be because I have almost eliminated salt from my diet, or it might be the yoga. I've only been there two times, so probably not. Recently I haven't been drinking much water. I am not sure know what to think of this, some say "drink plenty of water" while others say "drink as little as possible". I suppose it could be the Qi Gong too. Could just be coincidence.

At the gym

2011-02-15T11:46:00.000-08:00

On Sunday I was at the gym for two classes, first a Flow Yoga I and then a LatinMix. Flow Yoga was much more what I need than the Hatha Yoga I wrote about in the last post. In this class I got my legs properly excercised and also did some stretching which will – if I keep going – lead to more flexibility. I think I will go again. At home I do some flexibility exercises for my legs.

Yesterday I got to tick off one more thing on my to-do list before my upcoming trip to Korea, buying a new cast protector so I can shower with the stocking on. I will probably need it on the trip. I got it out of the pharmacy.

Since my wrapping marathon recently I have wrapped the lower leg some nights and it's been fine. Only a couple of times did I have to get up up and take it off during the night. Those bandages sure tangles up when washed in the washing machine. I think I am gonna get some more laundry bags and put a couple of bandages in each, then it is not one big bunch to detangle, but perhaps four or five smaller ones.

Other news; I have ordered some clothes which I am excited about recieving soon, there is a very nice, black lace top from eBay and a long white skirt from a Danish company. I am considering another skirt from eBay and a pair of trousers from Asos, more on this soon.

New shoes, yay!

2011-02-06T12:57:00.000-08:00

How lucky can you be? I've been shoeshopping today, got four pairs! They will, however, end up being two pairs to use. The three of them was a soft, wide shoe which can be used for a bit of everything, ie a long summer dress. I bought the three pairs because I wasn't sure of the sizes, will return one pair next week. Having tried them thoroughly at home now it seems that 39 for the left foot and 41 for the lymphedemafoot is it. They were avalable in red, black and silver, I got the silver ones.
The fourth pair I got from another shop where a pile of shoes was reduced beyond belief – from 299 DKK to 69, which is about 13$ or 8 GBP! They are off-white, fairly wide and with velcro straps. They look a little like childrens shoes, but I don't care, just happy to have some shoes, and my trousers are wide enough to cover the straps anyway. I bought size 40 even though 39 might have been best for the healthy foot, but 39 wasn't available and 40 does work on both feet. I hope they are wide enough, time will tell, but I've been wearing them a bit at home this afternoon and they are very comfy, yay!

I've almost eleminated salt from my diet. When I say almost, I mean that I don't add salt myself, but do eat food that others has prepared, food that may contain salt. So far it's been going really well, haven't really missed it. I guess the tastebuds adjusts, although I did expect them to take longer. Salt is supposively bad news for the lymphatic system.

Yesterday I went to a yoga class. I'd like to get a little more flexiblity in my legs, and I thought yoga might be the thing. Although the instructor was a dish I wasn't all that impressed with his class. Much times was spend spinning around oneself, sitting on the knees (not me) with closed eyes and feeling completely relaxed in the tounge and ears, hmm.

Shake that booty!

2011-02-04T02:43:00.000-08:00

On Sunday I went to a Zumba class again – or Latin Mix, as it rightfully called in my gym. Wow! Some serious bumshaking going on – for my part attempted – I am looking forward to the day my hips, shoulders etc. begins to show signs of life! I couldn't believe how the instructor could do it so fast, it was crazy! Like a sambadancer in Rio! After the class I thought about asking if there was a beginners class, but I think one is supposed to be able to just walk in and do it, hmm. Hopefully I will get better at it over time, I'm also trying different teachers, they are probably all different.

This week is the week of my wrapping marathon and so far it has exceded all expectations. I have been wrapped since Monday morning, with breaks and drainage each morning and so had it on during the night and all, and with no problems! I had my worries as to how the bunion and the sensitive area would react, but it's been going really well, what a relief! The leg is making progress, it looks better and the texture is soft and wobbly.

I bought safflower oil for the juice the other day, a special offer at the shop I usually go to. I think I overdid it a little when I tried it, and I could taste it, must use a little less next time.

Zumba

2011-01-30T03:28:00.000-08:00

Last Sunday I went to a Zumba class at my gym. I am going again this afternoon. I don't feel as flexible as I used to, maybe because of the Lymphedema, maybe I am getting old. In a couple of months time I am going on a trip to Korea. There will be quite a few business related restaurantmeals, and as I expect we will be sittting on the floor at low tables I want to see if I can get a bit more flexible and not feel too challenged by this.

It was indeed a long time since I had been to the gym, but it was good to go, and Zumba – which is a kind of dance class – was fun and good. I almost got into a proper dancemode!
I also intend to attend a yoga class soon. I meant to try the Lymfyoga, but as I am a member of one gym already, and can't afford both, the gym's yoga class will have to do.

Yesterday I went to a wonderful shoe shop near me. They have a good selection of Angulus shoes (don't know if this brand is Danish and/or available in other countries) in ladies sizes and I tried two pairs, but didn't buy anything, they were quite pricey. One pair was very comfy though, and I think it would work for my troubled foot. Now I know my Angulus sizes, and hence a little less risky to buy online, since there is less chance they don't fit and have to be returned.

Glyconutrition

2011-01-22T02:48:00.000-08:00

I have bought some UGGs, two pairs, one in 39 and one in 41. There is room for the little toe and they are nice and warm. Support wise they are not particularly good to walk in, but for now the priority is to give the little toe and environs space to recover. Soon I am going to be wrapped for good part of a week – in a responsible manner with breaks and drainage – and I very much hope that the little toe and the bunion can be ready for that challenge. My lower leg indeed need some bandaging, but I have not dared, and my Physiotherapist didn't either last time I was there, due to the sensitive area.

Recently I wrote a renowned radiodoctor in my country to ask about something reg. heavy metals and lymphedema. My suspicion about this appeared mostly to be a blind alley, but he attached an article he wrote about something called glyconutrition. The healthy sugar. In the article he sayes that patients with conditions of genetic errors sometimes see a good effect from glyconutrition. I had never heard of glyco before and perhaps it is no use in my case, but I will try it, even if it may prove to be a waste of money. Imagine if it is not! I don't expect instant cure, but I want to see if it can make some kind of positive difference. As always, I am very interested if anybody out there should have input about this that they'd like to share. Thanks.

I wish you all a great weekend.

The shoehell

2011-01-14T01:20:00.000-08:00

The Ichuan (Qi Gong) class has started up again after the holidays, and it's good to be back. I try to do standing and some exercises every day. The other day I discovered that a little dodgyness – nothing serious – at my left shoulder, something I have noticed every time I've done standing ever since I started on the team is no longer there. I actually think it's been gone for a while, just haven't thought about it. It proves that this system works. I slowly get my body adjusted into what it should be. Whether I can correct my lymphatic system time will tell. Recently I went to see my chiropractor (whoom I have previously discussed the shoulder issue with, but could not do anything) and she said that my body is very good indeed and completely different – mellow and healthy – than a year ago. I have seen her for many years.

I'm desperate for new shoes! Have searched high and low and tried many, but none fit. There is no room for the forefoot with the toecap on, the little toe gets squashed and it hurts. I bought a pair of casual shoes the other day, when I tried them on they were fine at the toes, but now they gnaw. Have tried Duckfeet which had lots of lovely room for the toes, but it is a low and very stiff shoe (when they're new) they didn't fit well on my heel, and it is a lot of money for a pair of shoes that one can't know for sure how will sit when they are used a little and the leather is softer. They are also too cold for now.
Is there anyone out there who can recommend brands with plenty of room for the toes?
Angulus and Rieker is a little wider than many others (and my old pair of Angulus is super nice and wide, but the one for the right foot is too small now), but the variety in the stores I've been to is not impressive.

Yesterday I made Popeye juice – apple, lemon, zucchini and spinach. Lots of chlorophyll. Tasted allright, will make it again. In the future I'd like to do more green juices, I have a couple more recipes to try. Haven't been drinking wheatgrass juice since before my Asia trip, but is planning a major comeback this spring.

Bunion

2011-01-08T12:15:00.000-08:00

Over Christmas and New Year I have had big problems with pressure on my foot. I have now got a proper bunion near the little toe and it has been very sore. One morning after removing the wrapping I had worn for the night there was almost like half a marble sticking out. After a few days inside and thus without shoes, and also without the toecap, things were better, and now it is OK again. I dug out the very first toecap I got and cut a hole where the bunion is, so I now have a little less pressure on it. It works well so far, but for how long it will stay back to unravel. Must really get some new and bigger shoes, will probably have to buy two pair, one in each size, as the lymphedemafoot needs a bigger size than the other one.

I've ordered two more Easy-Slides from Lymphedemaproducts.com, as I recently recieved a discount code for "unlimited shipping" (WINTER). It turned out that it was not applicable to overseas customers, but instead I managed to get a 20% percent discount which would cover the shipping. Subsequently, the company contacted me and said that the shipping choise I made is only for America. This time, however, they will send them by post, but in the future I am looking at $83 for shipping, so this company is no longer an option for me. As I now (well, soon) have three Easy-Slides I won't have to buy for a while, but when I do, I will probably shop from the company where I bought my first Easy-Slide, brightlifedirect.com

Last Sunday I made a pumpkin pie and it came out beautyful. I will definitely make it again next pumpkin season. I used the Libby's Famous Pumpkin Pie recipe and it worked fine with my homemade pumpkin puree from my freezer.

Happy New Year!

2010-12-31T08:50:00.000-08:00

It is the last day of the year and I would like to wish you all a happy and joyful New Year.

I hope I too will have a good new year. The old one has not been so good. It started – after a wonderful Christmas and New Year's Eve and what seemed like a bright future – with deceat, breaking up and breaking down. A breakdown I still ain't done with. Everything has changed and nothing will ever be the same again.

A breakdown may be a new beginning. An opportunity to build oneself up again. Each individual have the responsibility to pull oneself out of the darkness. Making a decision of ending the selfpity and stop wasting time. Dry ones eyes and stop being a victim.

There is a time for everything though. A time to grieve. A time to be bitter. A time to potter around in the darkness. A time to move upward again. Timing is everything. Being ready. Maybe one should from time to time check whether one is now ready to make the change that one needs and then act, if ready. Otherwise one might not get up. If one is not ready, it is no use.

It has been a year when the consequenses of having Lymphedema fully dawned on me. It has been a spring with six weeks of continuous bandaging with fatal consequences. A summer of shame and grief over my ugly leg in my fleshcolored supportstocking. A year of hybernating.

Some good things happended too though. I started this blog, and although I haven't got tons of readers I don't regret starting it, and perhaps over time more readers will come and share knowledge. Must give it time. I am grateful for the comments and emails I have recieved, and for my followers. Thank you.

It has also been positive to get away from the hospital and their "treatment" and it has been a joy to find my amazing, competent and caring physical therapist who takes such good care of me. I am so grateful. I often think of the innocent people who still frequents the hospital where I used to go. I wish that they too had escaped and gotten/taken the opportunity of professional and competent treatment with manual drainage, proper bandaging and measurements, etc.

My recent trip to Asia was also a good thing, and it did me good. Also my good friend's visit and our trip to Stockholm I cherish.

Despite all my moaning I am grateful for what I have. My loving parents. My home. Food in my belly, a bed to sleep in, healthinsurance. My travels. My Qi Gong teacher. My good friend. My little nieces and nephew. My new coffeemaker.

For the first time ever I am spending New Years Eve alone. Feels a bit surreal, but I think it is going to be fine.

I wish you all a happy New Year, filled with joy, love and good times.

Under pressure

2010-12-23T06:04:00.000-08:00

I need your help! It really hurts on the one of my two sensitive spots now, I have marked it on the picture above (not my foot, a photo I snatched somewhere). I am off work today and indoor because of snowstorm, so no shoes on. I have to wear the stocking and toecap, but it hurts – what to do? Anyone out there had the same problem?

Happy Christmas!

2010-12-22T03:25:00.000-08:00

My leg is doing better, it had expanded a little on the trip, but the cooler temperatures and to be home following my usual routines has brought it down to close to what it was before the trip. I've been to the Physiotherapist three times since my return, the two of which I got bandaged and I have also wrapped the leg myself a couple of times. Some days I put a light bandage on the outside of the stocking on the lower leg, that works really well on me.

My foot hasn't been all that great lately, it gets squashed in the shoe, and the cold somehow makes it worse. Yesterday I had pain on one of my sensitive spots, which was even turning a little blue-ish when I took the stocking off at the Physio's. At that time I had been standing in the cold waiting for a bus for 35 minutes though. My shoes are quite good apart from now being too small for the lymphedema foot, they are hiking-style Salomon's, and it is the only shoes I can actually wear now with winter, but I hope I can find some new and better at the upcoming sale, some with room for my toes. Will probably have to buy two pairs in two different sizes, but that's life. As much as I no longer enjoy shopping I really do have to find something, shoes as well as clothes.

The weather is crazy here, this morning it was -17°C where I work, arghh! Almost too cold to handle. A place not so far from here it was -22,5° – hasn't been that cold since 1981! Really beautyful with the snow though, like a fairytailland.

I wish you all a wonderful Christmas!

New Easy-Slide

2010-12-15T13:03:00.000-08:00

Yesterday I recieved my new Easy-Slide and it's really good. The compression stocking came on like never before this morning. I'm not sure if it is made of a different material than the old one or if it is because it is new and not worn. Probably the latter. The size (L) is better than the old (M). I bought it at lymphedemaproducts.com, and there was no taxes added on its way to Europe from America.
It seems an Easy-Slide lasts around eighteen months. Perhaps it pays to buy a few at a time, postage is probably the same.

I've got this song in my head at the moment and I listen to it all the time. In cafes and restaurants in Thailand they would often play compilations from the 70ties, including this song. I think it is very special, she sings it so passionately, and the lyrics are very meaningful.

Update on dateballs: Go easy on the pepper..!

Date balls

2010-12-12T11:30:00.000-08:00

Yesterday I finally managed to get out and get some Udo's Choise for my juice. It's good to be juicing again and now I can complete it with the oil. I also got some big, beautiful pomegranates, they provide a nice flavor and a silky smooth and delicious texture to the juice. I think I might freeze some for smooties and salads later. It's supposively one of the healthiest things one can offer the body so I am stocking up now that they are available and in season.

Today I made my delicious – and healthy date balls. They are fairly Chrismassy, but I make them throughout the year. It has been a while since I last made them, but now I finally have some dates and almonds, and I had the time. Here comes the recipe:

Healthy, yummi date balls
Equal parts of dates (dried) and almonds (with skin) – though perhaps a little more dates
Spices – I use white pepper, cardamom, cinnamon and cloves, all ground
Vanilla

Cocoa powder
A little bit of water or orange juice (very little)

Grind the almonds in a food processor or electric mini-chopper. Add the rest of the ingredients and taste as you go. The mixture should be of a consistency so you can roll balls. These can be tossed in finely chopped almonds or eaten as they are. Store in cool place. Yum!
Instead of dates only you can use a mixt of apricots, raisins, almonds etc. You can also use other nuts than almonds.

*************

Thursday and Friday I went to the physio. My therapist thought my leg looked OK, all things considered. She wrapped it and told me to wrap the lower leg at night myself and also do some exercises. I hope we will soon get the leg back to the fine state it was in before the trip, I think we will.
I have started using the lymphedemapump a little again, it has been collecting dust for a long time (see here why), but before the trip I learned how to do selvdrainage, so now I feel OK using it and I need its help. I have previously had it on about 90 but my therapist told me to turn it down to 40-50, so that I do.

Dry skin etc.

2010-12-10T03:31:00.000-08:00

The other day I ordered a new Easy-Slide (aid to put on the compressionstocking) from Lymphedemaproducts.com. Before my Thailand-Laos trip, I managed to fix the broken loop of the old one, but already on one of the first days out there the loop simply came off. I could just use the tattered remains, but had brought one of the little slides that comes with the compressionstocking from Medi, and so I've mostly used that, as it was too much hassle with the broken one. I have ordered a size large because I feel the old one probably should have been a tiny bit bigger, that was medium and I use/used size 38-39 in shoes.

The skin on my legs is really dry, I noticed the other night, so the lymphleg got a good glug of Decubal, the greasy – and smelly – cream I sometimes use. I am going to get some oil soon to mix with my juice soon, I ran out shortly before the trip, so it's been a while now, and thus no wonder the skin is dry, especially now with very dry air from heaters, etc. I like to use the Udo's Choise as it supposively is the perfect mix of Omega 3, 6 and 9.

Saturday I went to a Christmas outing with the Qi Gong team, and it was really pleasant. They are good people and I'm happy to have joined the team. On my trip I didn't find the peace and opportunities to practice as much as I had hoped, but I managed to most days do 7-10 minutes standing, and a couple of times the Ba Duan Jin exercises.

On the journey I sometimes used a cast protector I got from the pharmacy, it's just at thin plastic one and it has been leaking a little, but I found that putting a small rubbishbag on the foot first, with a rubber band to keep it in place, and then the cast protector – sometimes with a small towel around the lining of the stocking, inside the protector. It's good to have the option of a shower at other times than getting up and going to bed, espcially in a hot and humid climate.

The four weeks was not quite enough to give me the peace and the feeling of really being away, sitting somewhere else looking at my life at home, a feeling I have experienced in my longer trips years ago. However, it has still been good to be away and have a break from my life at home, I needed it too. Imagine needing a break from ones life, something's wrong then. And there is, obviously.

03:34

2010-11-30T00:08:00.000-08:00

That was the time when I, after realizing that I couldn't sleep anymore, looked at the clock. Went to bed half past eight yesterday and Sunday night (arrived home Sunday morning) I fell asleep after the first spot in the 7-news.

The journey home went OK and better than the outward journey. I wore the old grade three toecap and having boarded the plane I put the toecap outside the compression stocking. I wore my trekkingsandals but took them off most of the time. One of my two pressure sensitive places played up a little and I had to get up to walk and stand now and then but the situation was far better than the outward journey, so that was good. I don't think the leg has gone much bigger from the flight, but I still wrapped it Sunday night. Had to take it off around midnight though.
Update: See my tips and exercises for flying with Lymphedema here.

Some winter landscape I came home to! From one extreme to the other as Bangkok was almost 30°C. This morning it was -6°.

The last week and a half on the trip I wrapped the leg every night and perhaps I should have done from the start. I don't know if it would have made any difference in the end, but maybe it would.

Tomorrow I am going to see my little nephew and nieces, I bought them mini tuktuk's made of Coke cans, I think they are gonna love them.

Travelling in Laos

2010-11-18T05:20:00.000-08:00

Hi all, sorry I have been silent for so long, I am travelling in Southeast Asia, have been since my last post. Life is good, really enjoy being out here again.
I started my journey in Bangkok, spent a couple of days there browsing and eating, have been there before so no sightseeing this time. Went with nighttrain to the Lao border and headed for Vientiane, the capital. Then on to Phonsavan to see the Plain of Jars which I missed when in Lao ten years ago. Very intriquing. The jars were used for burrial. I finished my Lao adventure in wonderful Luang Prabang by the mighty Mekong river, had a gorgeous time. Flew to Chiang Mai in Northern Thailand, didn't like what the city has become, but really only meant to use it as a gateway to the North anyway and to have some jeans made at tailor, will post photo when home - still using film camera, so no uploading. Have spent a lovely time at Cave Lodge in Tham Lot, what a great place! Run by cool Aussie dude.
Staying at The Nest in Chiang Dao at present, the place looks like something out the The Hobbit, very cute.

My leg is doing OK. It is bigger now than before due to the heat and humidity I assume, but perhaps also because I haven't been eating as healthy as when home, and probably should drink even more water than I do. Have wrapped the leg a couple of times and will do it tonight and the next couple of nights to make the compression stocking fit better, it has been a little more difficult to get on than usual and the measurements have gone up.

Flight from Europe to Bangkok was not good, the new stockings and especially the toecaps are very tight, so had some pain on my vulnarable spots and had to get up and walk around every hour or so. Have a plan as of what to do for the trip home, will wear my old toecap which is only grade three whereas the new ones are grade two, and will put it over the stocking, even though it is supposed to be under, which I usually do. The foot and lower leg will probably be a little bigger by the time I get home, but will deal with it then, can wrap it on the first night back and will probably see Physio the first week anyway.

Update: See my tips and exercises for flying with Lymphedema here.

Yes!

2010-10-30T02:18:00.000-07:00

Wonderful! I have been granted bandages for bandaging the entire leg, quite an achievement. It did involve a million phonecalls, faxes, explanations, misunderstandings etc, but everything is sorted now, I have the wrappings – and I am hanging on to them! The prosthegist had never before seen so many materials being paid for by NHS, usually one has to pay for much of it oneself, but my super-hero Physiotherapist has been fantastic and really helped me a lot advocating for my needs.

I've got nine rolls of short stretch bandage, tube gauze, gauze for the toes and cotton wool padding. My loving dad picked it all up for me, very helpful. The second new compression stockings has also arrived, great!

New stocking – yippiii

2010-10-21T09:30:00.000-07:00

My new compression stocking has landed and one more have been ordered so I have two for the trip, wonderful! The sewn-in pads on the sides of the ankle takes up a fair bit of room in the shoe, but they are good, and it looks good with a little shape on my ankle – with the stocking off that is. I can get my foot into at least one of my shoes and the stocking I ordered today will be without the pads, so I have the choise of wearing other shoes – my foot have gotten so fine that I can wear some of my shoes from before Lymphedema – YES!

I still make delicious juice almost every day. It has been a while since I did the big one with celery, cucumber etc., but carrot, beetroot, lemon, ginger – and sometimes an apple – is very good and easy too. Recently it struck me that I have not had a cold since I began juicing nearly eighteen months ago! Besides that, my facial skin is clearer and there fewer lines on my chest than before. The latter is likely to also be because of my magic rosehip oil that I use there and around the eyes instead of eye cream.
I want to try making green juices, representing several of the super-healthy green vegetables. I dream about going on one of the mighty juicemaster Jason Vale's retreats in Turkey where it really is about health with only juices and smoothies as well as plenty of opportunities for meditation, rebounding, yoga, pilates, swimming, walks, lectures etc etc.

I also still do Qi Gong, I have a little program that I try to do most days. It is three small warm-up exercises for the ankles, hips and knees, seven minutes standing, one or more Ba Duan Jian exercises ("lifting the sky", "bow+arrow" etc.) and/or Y ji jin exercises for flow as well as two exercises to open up the hip. Finally I do "the plank" from Pilates for one minute to excercise my arm muscles a little.

Flying with Lymphedema

2010-10-19T04:01:00.000-07:00

Soon I will be going on a long flight, first from Copenhagen to Vienna and then the big one from Vienna to Bangkok. The latter is almost 10 hours and I'm a little concerned about my lymphleg and how it is going to react. Since I got my Lymphedema I have only flown the short trip to London and that went fine, but this is something else. I am afraid that the edema will go beserk, I will get a blood clot in the leg or something else. Should I tell the flight attendants that I have Lymphedema, in case something happens? My physiotherapist recommends me to put a small bandage on the lower leg on top of the compression stocking and also make sure to do some excercises while flying. Anybody out there has any further tips or calming words?

Update: See my tips and exercises for flying with Lymphedema here.

Pumpkin soup

2010-10-17T03:18:00.000-07:00

Friday I went to the Physio to be bandaged for the last time before the new compression stocking comes. I was hoping it would be in the mail yesterday, but no. Now I try to keep the swelling down myself as best I can until the stocking arrives. During the day I wear a light dressing on top of the stocking and at night a proper bandage.

Yesterday I made a delicious pumpkin soup. I do this every autumn and freezes portions every time so I have for most of winter. Last year I found this recipe which I have now tried a few times, it is really good. I use a Hokkaido pumpkin and a handful of carrots instead of what the recipe states, and I leave out the cream. Also, I don't roast the vegetables nearly as long as in the recipe. It is a soup that takes time to make, but the result is so worth it.

Lymph Yoga

2010-10-11T01:08:00.000-07:00

I recently read about a course in my area of yoga especially for Lymphedema patients, it's called Lymphyoga. The instructor is a Lymphedema therapist and from a study in Southern India she has brought back techniques that she uses in the course. Her introduction:

In the Lymphyoga we focus on the breathing in the exercises – the shift between inhalation and exhalation creates an alternating pressure around the central lymphatic system which is hereby discharged and prepared to receive lymph from legs and arms. Deep breathing stimulates the transition between the lymphatic- and veinsystem so that the body can get rid of the excess fluid through the kidneys and urinary tract.Stretch and "muscle pumps" in the exercises stimulate the peripheral lymphatic system to incorporate the lymph and pass it on.We work with standing, sitting and reclining yoga "asanas" and breathing exercises, "Pranayama".

When back from my upcoming trip to Thailand I think I might do this course, I will of course share my experience here. It would be interesting to hear if anyone else has tried something like this.

At the fitter

2010-10-08T01:25:00.001-07:00

Yesterday I went to the fitter to have measurements for the new compression stocking taken. It was wonderful to get the bandages off and I am so pleased to be able to cycle and move freely again – even if only for four or five days before I am to be wrapped up again to be ready for the new stocking. I had been talking with my physiotherapist about ordering the new compression stocking with extra compression (grade 4) in the lower leg (I have 3 now), but in the end she thought it was too risky. We will have to see whether it can hold it anyway, if not I suppose we can order grade four in the lower leg next time. The fitter thought we should just make one stocking before my big trip to Thailand soon, and then see how things are when I get home. I was hoping I would have two for the trip, but it's probably better this way.

I've bought a bathing holster, it's a cover for the leg if you have bandages or a cast on, or a compression stocking and you'd like to have a shower say in the middle of the day or before going out for the evening. Today I was to test it, feeling all excited, as it is a brilliant invention. It seemed promising because the elastic band was good and tight but unfortunately there was some leaks there, so the bandages got a little wet, bummer. Maybe one is meant to fold the frill sort of down inside the cover, making it more waterproof, I will try that next time.

The self wrapping has been going better that I had expected, and it is not as dificult as I thought. Being able to bandage oneself is a really good option to have, especially for emergencies. Now I just need to practice. The physiotherapist said on Monday, having bandaged myself during the weekend, that I had kept it down really good. That was nice to hear. I too think it went well, at least on the foot and lower leg. Now I just have to learn how to do MLD on myself.

Greenpee

2010-09-29T09:17:00.000-07:00

Today I have been to the Physio and been bandaged again. I am going again tomorrow morning and Friday morning. Friday afternoon I am going to have my leg measured for a new compression stocking. I am going to try to learn how to bandage myself.
I have started taking B-vitamin as a preparation for my Thailand trip coming up, it is for mosquitoes. When I first started taking them in the spring I was a bit startled when my pee went green – apparently if the body can not absorb it all, then the rest comes out with the urin – and it's green. Very festive!
The compression stocking hasn't been fitting very good lately but I think it's because the treatment has made my leg a little smaller and different than before, and perhaps also due the the stocking being worn. I have worn it every day since early June. It will be exciting with the new one, it is going to have extra compression in the foot and lower leg, and little pockets on the side of the lower ankel for pillots. On the toecap the seam will be placed somewhere else than on the inside of the foot where it is now.
Today and the rest of the week I am off work, a combination of treatment, time off and little work-from-home. I only have a little work to do so today I relaxed, prepared the mixture for my overnight coldrised bread and I have ordered goods from Strawberrynet – including luxurious hair products from Alterna which I am excited to try. It's been a while since I ordered last time, but now they missed me so much that on top of my 7.5% loyaltybonus and 4% "buy-more-save-more" they gave me a 14% "miss-you" discount, so now was the time to stock up on needed items.
Now I am gonna go have a sit in the garden and read for a bit, the weather is beautyful. Must also eat some of my pickled green tomatoes I made this weekend, soooo delicious!

Looking good

2010-09-20T09:33:00.000-07:00

Last night I had a shower and upon drying my hair afterwards I looked at my body in the mirror, and my leg looked really good, even though it was Sunday evening and I haven't had wrappings on since Friday. Actually, my leg looked so fine that if you did not know it, you would not immediately notice that something was wrong. If you knew it, you could see it though. The measurements are still smaller than when we started wrapping, that's impressive, isn't it? I'm so happy with my physiotherapist.

After the shower I put some coconut oil the leg and covered with a towel to let it absorb before going to bed. Although my skin looks nice and not dry, the physiotherapist still thinks I should put lotion on every day to nourish the skin. I believe that the best nourishment comes from within through diet but I guess lotion or oil can do something too, so I will do so, if not every day then maybe a couple of times a week or so.

The physiotherapist thought I should try to stay off my trampoline for a while to see if rebounding actually does me more harm than good. Although I am convinced that jumping is good and it was obvious when I started that the calf went soft, I will do as I'm told.

Wrapped again

2010-09-14T11:40:00.000-07:00

I am wrapped up again, now the whole leg. It feels rather stiff, but that's how it is, isn't it. It does sit fairly good, although slightly tight on top of the ankle, I hope I can endure having in on till tomorrow where I am seeing the Physio again. I am curious of how it will look when we take it off.I'm tired. Off work tomorrow and had planned to go to a Qi Gong class in the morning before physio but I think I'll stay at home and relax, don't feel like going anyway with the leg all stiff. The not-going will give me plenty of time to indulge in freshly baked roles, I have just made the dough.

Wrapped in marshmallows

2010-09-10T00:08:00.000-07:00

Yesterday I had another session of MLD. After drainage my therapist bandaged my leg, but only the lower, to just under the knee. It felt fine, and this morning when I took it off the leg looked good, the edema had gone down a fair bit. The therapist had also placed some little items on top of the forefoot as well as on both sides of the ankle to create a little more shape, and it worked.
On part of the leg I had a new-to-me bandage with small "marshmallows" strewn between two layers of thin fabric. It is to go underneath the usual compression garment. The product is called Mobiderm and I think it is relatively new within Lymphedema treatment, at least not many years old. A quick search on the web suggests that the dressing has shown good results and I think it sounds exciting. Will google more soon. I copied the following from the importer's website:

MOBIDERM have no compression in itself but works by generating a pressure difference between the areas where foam squares are located and the surrounding skin. This stimulates the microcirkulation. The effect is intensified by excercise of the affected area.

Advantages of the use of Mobiderm:
Achieve rapid mobility of subcutaneous tissues
• Improve the suppleness of indurated skin surfaces
• Prepare the tissues to achieve more efficient venolymphatic drainage

Skincare from the inside

2010-09-07T02:28:00.000-07:00

A while ago at the hospital where I received "treatment" before I found the wonderful lymphedematherapist I see now, I was told by a an American lady from a company producing wrappings, that I had very nice skin. I assume she meant my leg and thereby fine skin for a lymphedemapatient. I haven't had any greater problems than a couple of dry furrows a couple of places on the foot either even though I almost never apply lotion, apart from sometimes on the troublespots on the foot. The other day I realized that part of the success is likely to be connected with my daily oil intake. I add a tablespoon of coldpressed oil in my juice every day and thus coveres a portion of the skin's need for fat. In the "old days", especially in winter, I would splash myself in lotion several times a week, but last winter (with lymphedema) I didn't even do it five times!
My sister-in-law's mum once said that she took two tablespoons of safflower oil each day and that she didn't use lotion at all, not even moisturizer on her face. That's something, isn't it, rather than to rub oneself with chemicals.
Ideally I would like to only use Udo's Choice as it presumably is the perfect blend of Omega 3, 6 and 9, but it is a little expensive so often I use a good cold pressed, organic rapeseed oil instead, one that is fairly neutral flavourwise. Flaxseed oil is supposed to be really good too, but again, pricey. Some say "yuk" at the thought of "drinking oil", but the truth is that you can't taste, let alone feel the oil in the juice.
I also eat avocado and nuts which both contain good fat. And sardines.

Sunday morning

2010-09-06T02:51:00.002-07:00

How wonderful Sunday morning is, especially when the day is as beautiful as today. Septembers sky is so blue...
I long for the time before lymphedema where I could potter around in my PJ sipping coffee, reading the paper and surfing the web as long as I fancied and shower when it suited me. I have to have the compression stocking from I wake up till I go to bed, so now I shower first thing and put the stocking on right away. It's not good to take it on and off more than necessary. Oh well, one adjusts so now the morning routine just starts after the shower and is otherwise business as usual.I find that even relatively small things can send the liquid downwards so when showering I stand most of the time with the leg up on the toilet and thus outside the rays of water – yes, my bathroom is quite small – and when done I put my foot as high up on the wall as I can and rinse with the showerhead from foot to groin 5-10 times to rinse soap off and lead the fluid away from foot and ankle. Currently I have only one stocking, so when rinsing it I stand with my leg up on toilet roll holder. Bizzare scenario, I know...I feel however, as mentioned in another post, that after I have started doing Qi Gong every day the fluid doesn't seem to build up as quickly as before.
Tonight I am going out with my family, we are going to the Tivoli Gardens to have a meal and see a show, looking forward to that. I am going to wear my good dress, it is perhaps the last chance this year, as autumn is approaching. Found out that I could get myself into my beloved golden sneakers if I take the sole out, super!

MLD

2010-09-06T02:51:00.000-07:00

On Thursdag I went to my second time with MLD. Oh man, how comfy it is. Very relaxing, I almost fell asleep. I really feel I am in good hands.
As of measurements of the other night, three of the six was smaller than in the morning, but I can see that has happened before. One would think that they would always be slightly larger in the evening than the morning, and that is often the case, but not always. It shall be interesting to see if all the measuments generally goes down a little when treatment has gone on for a little longer.
The physiotherapist gave me a little task, use a tennis ball to sort of knead/massage the foot with in order to make the foot softer and more flexible as it apparently is a little stiff for the time being. I am going to do that, will buy a tennisball next week. I sit down most of the time on my work, so I can easyly do it under my desk. In one of those "1$-shops" very near the clinic I bought a small vaporizer that I will bring on a trip, I'll be going on soon. The physiotherapist gave me a "hot-weather-tip"; to spray water on the stocking in
order to cool.

My first MLD

2010-08-31T10:37:00.000-07:00

Today I have been to my first Manual Lymph Drainage with a physiotherapist, and it went really well. My leg is quite soft and the lymph fluid is mobile, so that's good. The massage was very comfortable and my therapist is really sweet and very knowledgeable. Immediately after, it was clear to see that the forefoot had gone down a fair bit. I walk around almost with a little cushion much of the time but she managed to almost make it disappear. She said that it is in the hours just after drainage that the body is really working with the treatment, so I am curious to see what the measurements say tonight. I measure my legs six places every morning and evening monitoring the development. Next session is on Thursday where another hour on the couch awaits me, feeling excited about it. The strategy is to give me a couple of long and very thorough treatments, kickstarting the body and then see how how I react to it.
I am so glad that I found this clinic.

Gratitude

2010-08-26T09:34:00.000-07:00

Today was the day when I was to have a consultation with a physiotherapist specializing in Lymphedema. A day I have been anticipating. The therapist was very, very kind and seemed very competent. We had a long talk and she examined my leg. It seems that my leg is very cooperative and the fluid quite mobile, so that's good. She explained a lot about the lymphatic system and also gave me a short session of manual drainage.
We talked about the lymphedema pump and she too said that it is very important to open up the system before pumping away, since at worst it may cause lymphedema elsewhere, ie in the genitals! I look forward to her showing me how I can open up the right way myself, it would be really good. I find it appalling that I have not been informed about this neither by the hospital where I had treatment before nor by the company that delivered the pump. Shame on them!
Anyway, next week I will go there for treatment two times of one hour. Feeling excited about that. After the two treatments we are going to evaluate how my leg is reacting and then make a plan. The plan could be five days of treatment in a row, possibly with wrapping. It all should end up with a new compression stocking and hopefully a somewhat smaller leg. She said that I will be done by November where I am going on a long trip to Thailand, so that's good. Maybe there is even time to make two stockings, that would be fantastic.
Already after the short session of manual drainage today my leg feels a tiny bit different (better) when I bend it. Not so tense and filled with fluid.
I am so happy that I will be starting treatment there and now I finally feel that I am being "taken care of." Yippiii!

The first year

2010-08-15T03:21:00.000-07:00

It must be around this time last year that I, after diagnosis and treatment, got my first compression stocking. Imagine that a year has passed... I have of course worn the stocking every day since, but it is as if it is only the last six months or so that it has really hit me. I think much more about it now, I worry and feel sad. Perhaps because of the season. When I started it was no longer time for sandals etc. anyway and therefore natural to wear long pants and closed shoes, so this summer was the first. It is often seen that when people loose someone they have loved for a long time they grieve for a year. The sorrow and longing will of course always be there, but it is the special days, the seasons, the traditions one has to go through for the first time without the other that is extra hard. The first Christmas. The first Birthday. The first summer holiday etc. Perhaps it's a little like that with chronic illness. The first year is the hardest. Then one has experienced the various situations. I still grieve, so my year is probably not gone yet. I don't know if I am strong enough to ever being able to handle this.

Quiet

2010-08-13T12:28:00.000-07:00

The last 10 days I have trained Qi Gong (standing) every day, six minutes or more. It feels as if my lymphedema is more "quiet", not as "active" as usual. I don't know if it has anything to do with training, but maybe it has. As the worrier I am I wonder if it is a good thing or a bad. I am leaning towards good, thinking that the training is working like it should – creating circulation.

Open up!

2010-08-12T03:49:00.000-07:00

I have just read a post in a big Lymphedema forum about the importance of opening up the lymphatic system in the abdominal region before using a Lymphedema pump, so the fluid being pumped away from the affected area is being lead away properly and doesn't "strand" and cause lymphedema in the genitals. Apparently a great number of people have developed genital Lymphedema by pumping away, not opening up first! I have never done that myself (opened up), but will sure do it from now on!

You may find more info about selfdrainage in this video:
http://www.nwlymphedemacenter.org/vid_mngmntA.php

My new therapist?

2010-08-10T09:25:00.000-07:00

Recently I called a lymphedema therapist in another part of the country, a therapist that I had met at the patient associations yearly meeting earlier this year, I wanted to ask her if she knew of any physiotherapists in the Copenhagen area where treatment is covered by national health insurance. She knew of a couple, and so I called one near me. The therapist I wanted was on holiday, but is now back and I rang and spoke with her yesterday. How happy I was afterwards, and still am! She was very, very sweet to speak to and I already feel I am being taken care of. Like the other place up North I called a while back, she was horrified to hear about the no-good six-week wrapping at the hospital and of the fact that it was nurses, not doctors or physical therapists conducting treatment there (at the hospital). Anyway, I have now made an appointment for a consultation on 26 August where we will talk, she will look at my leg and we will make a plan. I am so pleased and also a little nervous (good nervous) how it will go. Maybe it will be no better than the at hospital, but I feel pretty sure that it will be better. I keep thinking about what they said up North: "A machine (lymphedemapump) can never replace a pair of human hands."
Today I have been to a funeral, the Dad of a good friend of me and my family. I feel quite drained now, funerals is one thing one never really gets used to, eh. Some beautyful psalms, including this one, which is one of my favourites. Also found this unusual version. Very dramatic construction, I find. The title translates "See, the sun is rising (from the oceans lab)".

A magic garden

2010-08-08T11:56:00.000-07:00

This picture is from the moore (I snatched it from the web), and not where I sat,
but similar, only my secret place was even more tranquil, peaceful, lovely.

Yesterday I trained (Qi Gong/Ichuan/Yiquan) at a wonderful place at the moore near me.
It is a little secret place, as you only if you know it is there, can find it. Especially here in the summer when vegetation is quite dense it is impossible to see from the path. There is a bench litterally one step from the waters edge and sitting there is like being in a secret, magic garden. There are also wild flowers and even blackberries, I think. I brought my flask of coffee and some cake, and when I had marvelled over the scenario for a while I rised and and did ten minutes standing (Qi Gong). Ideal settings for it. I will definitely go there again for training – and coffee :-)

Friday I went to a shop nearby to get a couple of household items and they played "Heartbreaker" by Dionne Warwick. Whenever I hear those first tunes I get instant goosebumps, and first thing home again I found it on YouTube and jumped on the trampoline listening to it. It is so good. You can listen to it here.

Today it has been raining all day, but that's OK, I have been busy doing housework. Having my good friend from abroad visiting from next weekend, so better clean the place up.