As I said...

... things can change so quickly. I lost my love to manic depression. Runs in his family. He has turned against me and wants nothing to do with me. Outlooks are bleak and I don't think he will get help and come back to me. It feels so unreal, absurd and confusing.
The jobsituation has changed too. I still have my job but a new CEO has been brought in and my working conditions and opportunities for the future are now much different. My co-worker is not being nice to me.

Life goes up and down. I really did cherish what I had when I had it. At least I got that one year with my love and I am still thankful that I got that job after all those months without.

It is not all bad news though. In April this year I bought a lovely little allotment on the outskirts of Copenhagen. It is more like a small summerhouse really, with electricity, running water, toilet etc. There is a bedroom and kitchen so many times during the summer I have stayed there for some days. My sanctuary. A place of peace and quiet in an increasingly mad world. As I live in a flat on the 3rd floor it is heavenly to be able to go there and step out on my own lawn and sit with my coffee, listening to the silence and the birds. Being able to wear sandals without worrying about anyone seing the compression stocking and the toecap. I am already looking forward to spring and summer so I can go there again. It is six months away though.

I am sorry it's been so long. I haven't had so much to write about, at least not reg. Lymphedema. My leg is the same, big. Earlier this year I got two new JoviPaks to use at night. They do a good job and my leg is soft when I wake in the morning but it hasn't really made my leg any smaller. Oh well, at least it keeps the tissue from growing hard etc. I had a MLD a few weeks ago and my therapist was impressed, she thought my leg looked and felt very well managed. I am seeing my fitter soon, maybe he has some new ideas reg. nightgarment.

Happy New Year!

Hi there.

First, have a listen to this beautyful piece of music, that I am listening to a lot these days:
https://www.youtube.com/watch?v=nUcX1w-aAro

I've been wanting to wish you all a happy new year, guess it's a little late for that now but here goes anyway, I wrote it around new year but never got to publish it.

Happy New Year! We all know that life is mixed and that it can't all be good but I do wish you will all have a year with lots of love, luck and good times. I hope your conditions will behave and not give you too much grief. Newbies; know that by this time next year things will be different and you will be in a better place.

2014 was a big year for me. After more than a year of being out of work I landed a great job as a Marketing Coordinator and I am so grateful. What I am even more grateful of is my gorgeous, loving man that I got together with. Can't believe we've been together a year! Even though is's been a year and being together feel so right and natural the concept of having had a boyfriend for a long time is still new to me.
I am in a good place and the good things that happened in the year behind us proves that life goes up and down and things can change. I sometimes look back on what my life was like about five years ago. My Lymphedema was a fact and I was in the phase where I had to get my head around having been struck by an incurable illness. My soul had suffered great damage from men I wish I had never met, the jobsituation wasn't good either as I did have a job but it was on borrowed time and other things too brought me to the lowest point in my life so far. I am in a different place now. Not only because of the job and the man but living with Lymphedema is much different for me now than it was. It took me over a year to come to terms with the diagnosis but very slowly things got better. I got to know my condition and I learned to work around it and gradually came to realize what I could do and wear instead of grieving over my loss. I guess I have come to accept one of the things I cannot change.
I wonder what this year will bring. Hopefully I will keep the job and the man but life can change so quickly. I hope that now that I have an income I will travel more again and be better at living my life more intensely. I wish you all a happy 2015. Thanks for being part of my blog.

The other day I took some things to a place where a group of people collects clothes and other necessities for refugees inside Syria. I took some clothes, some old compressions stockings, soap, sanitary towels, toothbrushes, razors, etc. I also brought some canned food and rice.

Stay tuned, I am working on a post about long term effects of Lymphedema/getting older with Lymphedema. Who knows when I will get to publish that but hopefully it won't be too long.

New book about people with Lymphedema

There is a new book out with stories and pictures of real people with Lymphedema. Its title is "Impressed by you" and it is published by the Dutch Lymphedema Network NLNet. It has been a huge success already with more than 2000 copies sold and now it has been published in English too. It contains stories from children, teenagers, women and men explaining what Lymphedema and Lipedema is and how it affects their life. The people behind the book wanted to put some light on Lymphedema and Lipedema but with the help of real patients instead of doctors and therapists. The idea is to present the people in the book as the strong and beautyful individuals they are and not as patients or victims and from what I have seen of the book they have really succeeded in doing just that. How refreshing!
The book also provides background information and an introduction by a doctor within lymphovascular medicin.

You can learn more about the book and also buy it here.

Hats off to Kathy Bates!

The talented actress Kathy Bates has become the spokeswoman for LE&RN - Lymphatic Education & Research Network. After a double mastectomy two years ago she now has Lymphedema in both arms. I am so sad to learn this but her situation is similar to so many other women out there, including some of you reading this. I think Kathy Bates is so cool for speaking up and coming out about having Lymphedema. I have often wondered what famous people did when developing Lymphedema. Hide in embarasment I suppose since one never hear about celebrities with Lymphedema. Ingrid Bergman had and also Elizabeth Edwards but apart from that I don't know of anyone.
I really hope Kathy Bates will succeed in bringing focus on Lymphedema and the challenges we have. If you want you can listen to her story here.

If you too want to help educate others about Lymphedema you can download and print my little flyer and give it to who you think could benefit - ie your family doctor, your biglegged next door neighbor, other clinics, the notice board at the local supermarkets or somewhere else. Find the link here. 

I am sorry it's been so long. I have been so busy but I have lots to tell you and show you. I got a job, yay! I have started working in a markting department where I will be making product sheets, updating homepages, designing ads and brochures etc. etc. My new colleagues are very nice and my office is comfy. My days are long though as I have some commuting. I get up at 5.45 and I am home at 5.30. Still, I am so relieved that I am, at least for now, is out the stinky swamp that looking for work is that I don't care about the journey back and forth.

Compression pump on auction now

Some months ago I put my compression pump up for sale on eBay and as it has not yet been sold I have now put it up for auction. The auction ends soon. You can see it here and place a bid if you are interested. Again, it probably makes most sense for Europeans to buy it as the shipping costs outside Europe are very high but I will send it worldwide, with tracking and insurance only. Have a look!

Update: Sold.

I've got sandals, yay!

I recently bought these leather sandals that I am hoping I will be wearing a lot this summer. I was inspired by Hutch’s picture in this post and when I saw these I thought I had to check them out and see if it would work. I think they look very femine and simple, perhaps a little girlish. My Lymphedema foot does look big but I will only wear them with long trousers anyway so perhaps it will be allright. I wear a toecap so I can't wear opentoe sandals/shoes but these ones hides it enough while it still provides some air for my feet.

I got them in two different sizes, one size for each foot and I am selling their lonely partners on eBay. If you want you can check them out here.
They are US 7 (right) and 8 (left). UK sizes are 5 and 6 and European is 38 and 39.

Cute little film about Lipedema

I just saw on Helen Samias blog that June is Lipedema Awareness Month and as this condition is somewhat related to Lymphedema I thought I'd share the link to a cool little cartoon about living with Lipedema. As a Lymphedema patient I can relate to the first bit about ones leg suddenly sweeling for no apparent reason and the frustration that comes with it. Check it out, it is quite sweet. It is made by Lipoedema Australian Support Society (LASS).

Selling my compression pump

I have decided to sell my old compression pump, the PulsePress Multi12 on eBay. I also have a Lympha Press so the PulsePress is just sitting in its box not being used. It is in good condition and have not been used much. It will probably make most sense for Europeans to buy it as the shipping costs outside Europe for a 7 kg beast are horrendous.
You can view the pump here. I am also still selling the lonely partners of my odd-sized shoes, check them out here. I have a couple more than listed at this time as they are more for winter but do ask if you are interested. I have just listed some leather sandals with closed toes, check them out.

Since I heard about CNN's Freedom Project many months ago I have been wanting to support organisations that helps women and children that are victims of slavery or for other reasons need help. Last month I donated some money to an organisation that helps victims of acid violence. One can donate as little or as much as desired and with PayPal. If you want you can check it out here:
http://www.acidviolence.org/

I have been thinking about giving the cabbage poultice another try, perhaps doing it every night for a month or so. I really think this is a powerful remedy and who knows if it could help us. More about this soon.

Thank you for your comments, they really mean a lot to me and to other readers. I am sorry I am being so slow to reply.

Update: Sold.

Stem cell therapy for Lymphedema

A while ago I got a tip about an online diary of a woman who is undergoing a new kind of treatment for Lymphodema in South Korea. It is a combination of Liposuction and Lymphosuction, to clear the site where the lymphatic system has been damaged, followed by intravenous stem cell therapy.

This lady has Lymphedema an Lipedema in both her legs due to surgery that went wrong. On her blog she shares her experiences from before her surgery and up till now where she is today, which is a very good place, it seems.

You can read her very first post shortly before the surgery here, where she explains a little about the procedure. On the mainsite you can find the posts that followed.

This lady links to another online surgery diary. I am not sure whether they are having the exact same operation but do check it out.

I am sorry it has been so long since my last post. I am well and things are good. Still no sign of a job, but things seems to be picking up a little and there have been more openings lately so I am hopeful. The wonderful man is still here and still wonderful. His name is Glenn. He really doesn't care about my leg. He sometimes helps me roll up bandages, how sweet is that! I think we are good together. While being in the middle of it I am also observing this wonderful thing that has happened to me. It is kind of unreal and very different - good different - than other attemps into relationsships I have had. I can be me.

I recently recieved the maxi dress on the pictures below, it is really not too bad. I will see if I can take a picture wearing it so you can see what it really looks like. I need to stop buying clothes from China on eBay as the quality is often not very good and the pictures can be very different from what you actually get but I was lucky with this one. The quality is not too bad. The dress is quite long too and not Asian sized. I am 168 cm high and is long enough for me. It comes in many different colours. I bought it here. The colour is a little bit different from the pictures but not dramatically.

Tip for arm lymphers

To my page about Shopping for Lymphedema wear there is a comment from a reader with arm Lymphedema, asking for advice about clothing. I thought about a loosefitting, baggy top under a stylish corsage in order to provide room for her arm and maintaining shape on her upper body not to mention looking stylish. I really think a long sleeved baggy top takes the non-decency right out if the corsage and makes it look rather elegant. One could have a number of tops to combine with the same corsage. What do you guys think? Please throw a comment!

Something like this. This one has a lace-up back. I found it here.

With a top a little like this under, perhaps without the thing in the middle.
I found it on eBay but lost the link (I searched for chiffon top).

 

Or this one, that I got for myself a little while ago.

It would probably look a little like this, only more
baggy over the bust, which I think would look nice.

I also found some funky bustiers/corsages here.

I wonder if one could use a strappy top over a baggy top instead of a corsage, or if it would look too bulky. I might give it a try and see how it goes, will let you know. 

Loveliness

Hi everyone! I am sorry it's been so long.
I have some breaking news. Breaking news for me.

I have met someone. A sweet, loving, gorgeous, kind man. He doesn't care about me having Lymphedema and about my poxy stocking. My horrible secret. The first couple of times we were together he didn't even notice it! I did do my best to hide it though, as silly and insecure as I am when it comes to my Lymphedema and the stocking. However, when he discovered he was not disgusted. At all. We talked about it and since then he has told me many times that it doesn't matter. And it really doesn't. Unbelievable! I can potter around in my stocking and put it on in front of him and he has even looked Lymphedema up and read a little about it! Life seems easy now. No hiding. No horrible secret. What a mindblowing and unreal relief! I never thought this would happen. In the years that have passed since my Lymphedema started I have sometimes wondered if I should ever feel the nearness of someone again this way. Now I do.
Who knows what the future holds but if this should end I will be warm inside when looking back at it and at him and the fact that he thought I was beautyful and wonderful and that he saw right through the dodgy packaging and into what I have to give. I feel so lucky.

The other day I spend the afternoon together with Sophisticated Tina. She looked more stylish than ever with a really cool haircut - very short on the sides and a little longer on the top, dyed black. A  fauxhawk. A little bit like this or this. I think she is so cool for daring to have such a hairstyle at 50! And she really pulls it off. As we were sitting in a coffeeshop I was expecting some style agent to come over and discover her any minute. We walked around in the city for a bit and checked out a couple of shops. She is really good at spotting potential outfits and I felt almost encouraged to shop again, or at least investigate.

I am listening to this song. It is in Danish but check it out anyway. It is a beautyful and intense ballad about trusting your destiny and love while lifes little electric shocks pushes your around. If the link above doesn't work in your country try this one. It is slower but still beautyful.

Odd size shoes

Yay, I have sold two Converse sneakers and one Sorel boot on eBay, to buyers in France, Russia and England!

I have put my other odd-size shoes up for sale too, but as these are not universal like Converse and Sorel I am selling these in pairs. Check them out here. In the individual ads I have put in the US sizes as well as European and UK. They are the partners of the shoes that I use for myself so these are unused.

Last week I started on a yoga course for people with cardiac or lymphatic disfunctions and it was allright. I think it will be even better in the weeks to come. There were six of us and three of us have Lymphedema. I have seen one of the others in the patient association. The instructor is a Lymphedema therapist so she knows about the lymphatic system, Lymphedema and the troubles we as Lymphedema patients can have so I think it is going to be good.

These are the shoes I am selling on eBay - click on the pictures to check them out on eBay:

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?