Wednesday, 28 December 2011

Nightgarment

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.

Tuesday, 20 December 2011

Homemade Christmas present...

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

Sunday, 18 December 2011

Style Consultation #2

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!

Thursday, 15 December 2011

Style consultation #1


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.

Monday, 12 December 2011

Under the same moon

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.

Friday, 9 December 2011

Still here

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.

Sunday, 20 November 2011

New stocking


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.

Monday, 7 November 2011

Microsurgery

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.

Thursday, 27 October 2011

Bandaged

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.

Wednesday, 19 October 2011

(How) does diet matter?

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

Tuesday, 18 October 2011

Still shaken...

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

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

Saturday, 15 October 2011

More Lymphedema?

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

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

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

I looked nice in my new palazzo trousers.

Friday, 14 October 2011

Note on post about dressing like a LymphADiva

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

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

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

Wednesday, 12 October 2011

More shoelinks

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

Saturday, 8 October 2011

Poshness

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

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

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

Tuesday, 4 October 2011

Bubbly

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

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

:-)

Monday, 3 October 2011

Autumn


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.

Saturday, 24 September 2011

Dressing like a LymphA'DIVA

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.

Thursday, 22 September 2011

OMG

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.

Sunday, 18 September 2011

Elevating my bed


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.

Friday, 16 September 2011

JoviPak nightgarment

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.

Wednesday, 14 September 2011

Again

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.

Tuesday, 13 September 2011

LymphaPress Optimal

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.

Sunday, 11 September 2011

Halleluja

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 peace. 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 sea of flowers, and people would stop by to pay their respect.

Wednesday, 7 September 2011

Back from holiday


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.

Tuesday, 23 August 2011

So long...

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!

Saturday, 20 August 2011

Cargo pants and LymphaPress Optimal

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.

Wednesday, 17 August 2011

The dress

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.



Friday, 12 August 2011

Lymphedema in-flight exercises

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.

Update: Download a PDF-file with my inflight exercises here.

Tuesday, 9 August 2011

Style consultation

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.

Thursday, 4 August 2011

Nightgarment

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.

Thursday, 14 July 2011

Shopping for Lymphedema wear

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.

Sunday, 10 July 2011

Hiking

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.

Sunday, 3 July 2011

LymphaPress Mini

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...