Funky, stylish outfits for lymphers

A little while ago I was going through some of the links that I share on Shopping for Lymphedema wear and to my delight I found quite a few funky, stylish, widelegged outfits from the french label Coline. Go directly to the pants/trousers section here and see for yourself, it is incredible, especially for those with really big legs! The styles below are both around 25€ (34$) and come in five colours.

Happy 2014!

Hi everybody,

wishing you a Happy New Year! I hope 2014 will be a good year for you all. And for me. I hope that we will all find strength to deal with the challenges we have.

I guess this is the time of year for big thoughts. Mine are about living my life more intense, not wasting so much precious time. Making something of myself. I think all this has to do with turning 40 last year, it's been quite big for me. I don't want to be sorry and regret when my time is up. But what to do? I don't feel all that optimistic about the new year but who knows, perhaps it will bring some opportunities. A job. I know it is my responsibility. Sorry about this, I didn't mean to bring you down.

I hope you all had a beautyful, peaceful Christmas with loved ones. I did. Most of the time anyway. Christmas eve, which is the big one here, was spend with parents and one of my brothers. Really nice. I got some really nice presents, among them a coffee table from IKEA that I have had my eyes on for a while. It will go really well with my sofa. It was first launched in 1955 and was known for being the first furniture delivered in a flat package and that costumers was to assemble themselves at home. It's been away but has recently been relaunched. It is out of stock at the moment so I will have to be patient a litttle while longer. I also got the book River Cottage Veg Every Day which was on my wishlist. I have already marked quite a few recipes that I must try as soon as. The cute Hugh is so popular overhere. Can I have him as my personal cook, please?

I gave some nice presents too. I got my nephew and two nieces a cool water bottle from Stelton each, green for the boy, pink and purple for the girls. I'd like to get one for myself. I got Mum a beautyful scarf and Dad a perfume. For my brothers I got a nice desert wine, baked some Italian almond cookies and wrapped it all up nicely. Amazing what you can get away with with cellophane and a golden ribbon!

Tomorrow I am going to the personal shopper again, yay! I have three giftcards that I am going to use. I am excited to see what she has picked for me. Will let you know, of course.

Update on Dad

Hi all, I'm still here, sorry I don't post much anymore, I've got so much on my plate these days.

Here comes a little update on my Dad who, while I was in hospital in Spain last year, was in hospital at home having surgery for Melanoma: Now he too has Lymphedema. The swelling started soon after he came home but he hasn't done anything about until recently.
My Dads way of coping with many things is to pretend they didn't happen, sort of, or wait till someone else takes action. It works well much of the time. When he was in hospital having heartsurgery (also last year – what a year for him, and us) he would sit in the visiting area in his own clothes, hiding the monitoring device that he was hooked up on under his shirt. Sweet, isn't it? I understand he needed to feel as if nothing was wrong, I guess that was how he could cope. Afterall it was a scary situation.
Anyway, until recently he has handled the swelling by acting as if nothing was wrong. He refused to look into compression stockings and treatment until some months ago when he went for a check-up at the hospital and the nurse told him that she really thought he should get some stockings. I said something in the beginning but I didn't want to push him, afterall it is his choice and I know that one has to be ready. It took me a while to be ready when my Lymphedema started. Some months ago he talked to his GP about it and compression stockings have being applied for and granted. It is the best thing even though his leg is not all that big. I did notice it back in the summer when he was sitting crossed-legged and I could see his ankles, one was definitely bigger than the other. I think it has gotten worse during the last six months or so.
So now he is to contact his local fitter and get his measurements taken but who knows when that will be.

Last week I made a beautyful jelly from what I think are crab apples. I stumbled upon them one day I was out walking. I have never seen such apples before – they are the size of a cherry – and when I came home I googled them and I am quite sure it is crab apples. A couple of days later I went back and picked a small portion. The trees looked so beautyful in the winter sunlight.

Still here...

Hi everyone,

I am so sorry for not updating for so long. It sounds crazy but since I lost my job I have been more busy than in many, many years! I have joined a network for active jobseekers and I attend their activities two days every week. Then there is all the other things - refining my LinkedIn profile, creating on-line CV's, writing jobapplications, researching on new ways to go etc. I could do with a holiday!!

My big, annual wrapping session is coming up, I have made appointments for nine sessions in late October. Dreading it... I am going to see if I can get some shoes that I can wear when wrapped instead of my trekking sandals which don't look very stylish with socks in, I feel.

I just got this cool jacket below from H&M, I am really pleased I got it. The fitted style goes well with baggy/widelegged trousers, creating some shape. It is getting colder here but with a bit of luck I can still use for perhaps another month.

A couple of months ago I got this stylish denim jacket which I am really glad I got. Something different with the zippers instead of buttons. I wore it to a christening a couple of weeks ago with a maxidress and my Chucks, sorry about the blurry picture.

The maxidress I got from Asos a couple of years ago.

Approaching a stranger with Lymphedema

About three weeks ago I passed a lady on my way home, she had really big legs. As in humongous! Her lower legs must each have been the size that my head is, if not more! For some reason that I don't understand she was wearing capris – and no compression stockings. My heart almost skipped a beat and I slowed down and got off my bike. I wanted to talk to her but she was on the phone and also looking like she was waiting for her lift to show. She kept talking and meanwhile her lift turned up and off she went. What a disappointment! I was upset as I carried on not having talked to her.
Next day I printed some of my Lymphedema flyers, looked up six doctors in her area (I saw her outside a building that I imagine she lived in) that she would be likely to belong to and posted them. From then on I cycled that way home every day, hoping to see her again.
Weeks passed and I didn't see her, until Monday this week. I couldn't believe it and nearly fell off my bike! I was SO close to chicken out and leave but I knew I would have been so disappointed if I did, so I went up to her and said "Hi, I can see that your legs are quite swollen, I wonder if you have ever been checked out for Lymphedema?". She said no!! I said that I thought this was what she had and that she could get treatment. I quickly explained that it was a condition in the lymphatic system and that I had it myself. It didn't seem like she had ever heard the name Lymphedema before. I wrote it down for her and she said she would ask her doctor.
I was in a state when I saddled up and cycled home. Ecstatic for having talked to her but also very angry at her doctor for not knowing about Lymphedema and not helping her. She must have been late 30'ties or early 40'ties and her legs looked like they had been neglected always.
Anyway, I am glad I got to speak to her and I really do hope she will get treatment now.

Guinea pig

The week before last week I was a guinea pig for future Lymphedema therapists in training. It went well and they were all very sweet. Upon arrival I had a chat with the teacher, a Lymphedema therapist from a clinic in Germany, so she knew a little about me and my Lymphedema. Then I undressed and the students had the opportunity to look at my leg and ask questions. Then they took turns touching my legs, feeling the difference between the good and the bad leg and they had a go at manual lymphatic drainage (MLD). They were very gentle with me and often asking me if I was OK. Finally the teacher did a quick bandaging demo on me.
As a thank you I got the beautiful bunch of flowers on the picture, I thought that was a nice gesture.

You would think it would be slightly intimidating to lie only in your underwear and being looked at and groped by 15 strangers but it wasn’t. I felt completely at ease. Afterall they were physiotherapists and accustomed to dealing with people in a warm, non-judging and understanding way. That's what's so great about professionals working with hands-on treatment. They like people and are not repelled by abnormalities. They are aware of the person inside.

At the Q&A session with the therapists one of them said something like "so you don't have any major inconveniences of it?". I was a bit taken aback by that one. Having Lymphedema is for me one huge problem. However, I don't have pain, restlessness or a feeling of heaviness like many others and I have also only had Cellulitis that one time last year. I heard myself saying "no, it's mostly minor things." I guess it is but it doesn't feel so. For me it is a sorrow that I can't wear a short summer dress, sandals, smart long boots. That I can't just go swimming in the sea. That I must be careful not to get Cellulitis. That I have to buy two pairs of shoes each time and they still don't fit. That something happened to my body so that it now looks different and I can't do anything about it. That I feel like an elephant. Compared to lifethreatening diseases I am whining over nothing. No one can see that I have Lymphedema, at least not from a first glance. (And no one can see what a job it is to create the illusion that nothing is wrong...). Perhaps this was a reminder to once again try to turn down the selfpity and look at all the things I still can and maybe even explore new possibilities (now with valuable learning curves - and antibiotics - in my pack...).

I hope you all are well. Tomorrow I am going on a little trip with my parents to the western part of my country, just for a couple of days. It's been nearly 30 years since I was in that area so it's going to be good. I am also looking forward to spend some time with Mum and Dad.

I lost my job through more than 11 years. My workplace is closing down and from early August I will be looking for new opportunities, as they say. I do hope I will find something soon but I doubt it. Hard times in many professions including mine (graphic design). I guess it was about time for a change. One that I couldn't get around to make myself but now it has come for me.

New shoes

The sale is on and I just recieved as much as six pairs of shoes! However, I send two back and ended up with two usable pairs in two different sizes, one size for each foot. They were very reduced and I think they are nice and light for Summer so I got a pair in white and one in blue.

I have been asked by the leader of the lymphedema therapists overhere to be a sort of crash test dummy when new therapists-to-be are doing a training course next week and I said yes. I think the leader, who I know briefly, is going to do a wrapping demo on me and perhaps show the students (who are trained physio therapists) how to do MLD. I will let you know how it goes.

I forgot about this fine song but the other day it popped up in my head. Do have a listen, it is beautyful.

Overhere everything is so green and lush and the most delicious produce is in season. I have made some beautyful rhubarb compote to use in trifles, it is heavenly! Also thinking of making some elderflower vinegar. The smell of elderflower is the smell of Summer...

They are 39 and 40. I think the difference shows less IRL.
No one but myself will notice.

Print, send, help

For the cost of a stamp everybody can help raise awareness about Lymphedema, how to recognize it and what to do about it.

So many Lymphedema patients are never diagnosed because too many doctors don't know about this condition. I have created a flyer about Lymphedema that those who want can download (for free, of course) print on their own printer and send or give to doctors or others who could benefit from learning about Lymphedema, how to recognize it and what to do. Download the flyer here. It is only the very basics as I am thinking that once they have a clue what might be up with their big-legged or big-armed patient there are plenty of medical sites, books etc. where they can find more information.
I once gave the three doctors in the practise where I go a leaflet each that I had from my patient association. The board of the patient association have been discussing sending leaflets to all practises in the country but I think they ended up deciding against it as it would be too costly. Anyway, I am thinking that with this flyer we can all be ambassadors and help doctors etc. understand Lymphedema so that more patients can be diagnosed and get help. I hope some of you will want to print it and pass on. Download it here.

You can print as many as you like, the more, the better. I am planning to find a list of doctors in my area and send a bunch.

I placed three flyers in an A4-sheet so please cut along the dotted lines.

If anyone out there is interested in the flyer in other languages, feel free to translate the text, e-mail it to me on thelymphedemagirl@gmail.com and I will place it in the layout and upload it so that it is available for downloading and printing like this one.

What do you think?

Overview of Surgical Treatment for Lymphedema

Sniffing around I discovered a very recent video about surgical treatment for Lymphedema, check it out here.
The video explains various types of surgery including Lymphavenous Anastamosis, lymphnode transfer and liposuction (SAL).

The video is quite long, I scribbled down a couple of index points that I found particularly interesting:

11:30 Information about Lymphatic Detour aka Lymphavenous Bypass aka Lymphavenous Anastamosis. I believe these terms covers for the same procedure.
19:00 Candidates for the above type of surgery.
20:20 Information about Lymph node transfer.
23:30 Disadvantages of Lymph node transfer.
45:55 Question from the audience about whether a patient with Lymphedema for many years can be a candidate.

Despite the challenges listed at 29:19 I personally still think that the LVA (Lymphavenous Anastamosis) is very interesting and that shall be very interesting to see what the future holds regarding this.
I should have some news soon from Miss C who was to have the procedure earlier this month. I am hoping to catch up with her next week, can't wait to hear about her progress.
If I one day was to have this surgery I know it wouldn't solve all my problems and that I would still have to wear a compression stocking but the thought of wearing skirts that are not floor long again and perhaps long, smart boots like I used to wear makes me dream...

Patient weekend 2013

More or less the view from my room.

A couple of weeks ago was the annual members weekend of the patient association overhere. It went well, I had a good time. Tina was there and a couple of others I had met before and even more that I had seen before. Tina, myself and a couple of others formed a little group who sat together at meals and hung out, it was really good. I think we were all 38-48 years old.
Lymphedema wise there wasn't really much news which was disappointing as I think lots is going on around the world, ie the LVA-operations. I made a suggestion that they have a surgeon come and talk about the developements in this field next year.

My room was overlooking the sea, or rather a strait between two islands, and two magnificent bridges. I really enjoyed that.

It was good to be with Tina again, she looked fabulous, as always. She is a wizzard when it comes to finding clothes that works around her bad leg and altering it so it fits and no one can see she has Lymphedema. Even if I had her talent I don't think I would succeed as the difference between my two legs are bigger than hers. She wears relatively tight pants and jeans, on me the difference would show if I did that. I can't wait to go to the personal shopper again but the one that I want is not back from her leave until December so I think I will wait. Could do with some new input.

There were many patients there with arm lymphedema due to BC surgery. Alltogether many more Secondary than Primary, but we were there! In our little group was a youngish woman in her late 40ties suffering from Primary Lymphedema most in her lower legs but starting to show its ugly face in her hands too, well actually most of her body, including her face. There was also a lady who had lymphedema in her genitals, she stood up and spoke about that. Quite brave, actually.

There was also a really sweet 50-year old lady with enormous legs. She had Primary Lymphedema in both legs. She may very well be the most positive and happy person I have ever met. I chatted with her and she said that some years ago she had suffered from stress and had a real hard time with her Lymphedema flaring up crazily and coming out on the other side nothing could ever throw her again. She was so in peace with herself and really seemed to cherish the fact of being alive. An inspiration!

For Saturday nights entertainment a line dance event had been arranged. It was good fun. Not all could do it due to our condition but most of us had a go. A lady who is there every year, about 50 years old I'd think, with Primary Lymphedema in most of her body - not that you can really tell - and lots of other health issues going on - really went all in and had a blast. It was so good to see. She had dressed up real nice and despite all her very serious illnesses she was dancing, laughing and having fun as if there was no tomorrow. Refreshing and indeed inspiring!

I really do recommend joining a patients group if at all possible. It really means a lot to meet people in the same situation. One can feel like the only person in the world with this akward condition but you know what, there are millions of us out there. On Wiki it says as much as 140 million people! Mindblowing.

That's all from me today. Have a great weekend, everyone!

My Chucks, now on eBay!

I still have the lonely partners of the Converse sneakers I got last year and I have finally managed to put them on eBay, what an ordeal! You can find them here. I send worldwide (except the usual navy bases etc.). They are brand new and the sizes are 6.5 (left) and 5 (right). You can buy one or both.
Mine have been hiding all winter but are about to come out of the closet as Summer is approaching. I find that they can go with many outfits catering for us, fx. a long dress or some wide leg pants/trousers with the ends tucked into as I talked about in the previous post.

This year I am going to wear them with - among other things - the items below.

 

I haven't bought these yet but I think I will.

 I have added a couple more suggestions for wide leg pants in this post here.

Wide legged pants for Summer

As I may have mentioned I have recently found lots of good stuff on eBay and the other day I did a quick search of wide leg pants. Loads came up, check out these:

Loose linen pants, £10.89, many colours, ships worldwide, free postage

Chiffon flower pants, £11.90, ships worldwide.


I quite like these ones, they look comfy and I think the oversize pockets are cool. $38 incl. postage.
Baggy harem pants.

I think these look very stylish. Seems see-through, but black might work. Cool buckle, eh? $23 incl. postage.
Baggy pants.

While the first pictures are from eBay reader Hutch tipped me about a great site, Etsy, and a seller there with some beautyful clothes. I really like these and they look like they are good quality too. Green trousers, $69.99, from SophiaClothing (on Etsy).

I think they all look great like this but I imagine one could tuck the ends down some high-top sneakers like the personal shopper told me to do on the picture below. At least the first two that are not as wide as the Etsy trousers. I wear the outfit below a lot and I am still amazed of how normal my leg look this way. I really think this is one of the best tips the personal shopper gave me. That and working with contrasts so that trousers, top and cardi/jacket are different colours.

Outfit from the personal shopper.

To new readers; I'd be ever so grateful if you would vote in my little unscientific survey about Lymphedema and diet overhere to the right. Thanks :-)