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.

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.

Thoughts on my bout of Cellulitis

In my hospital bed last year with my first – and hopefully only – bout of Cellulitis I would feel that it was my own fault and that it was silly venturing on a trip like that altogether. In hindsight things often look differently, don't they. I was ashamed. I thought that I should have seen it coming. The friction between the toecap and my skin causing blisters, and blisters being a very real risk of infection. I guess I thought I was immune to infection as I had not had it before and my health is generally quite good.
Anyway, a text message from my little brother made me see things differently. He wrote:

There is nothing to be ashamed of - on the contrary - hats off for trying to push the limit and taking a chance :-)

It had not uccured to me to look at it that way. Then I wrote something I no long remember and he replied:

What is important is that you know that the world will go on even though you end up in a boring hospital for a couple of weeks.

After that I stopped beating myself up about my uncautiousness. Also, my Lymphedema therapist and my fitter both knew that I was going and neither of them advised me to not go. In fact my fitter recommended me some tape to protect my skin. I guess that growing older has made me more insecure and prone to blaming myself even when it is not my fault, at least not completely.
Having said that, I should have been more careful but I no longer see it as completely irresponsible to go. I should have brought bathing slippers for showering in the various hostels. I should have respected the blisters I got and I should have brought some antibiotics, but I know that now. Before the trip I had never had Cellulitis before and didn't know how much or how little it takes but I do now and in the future I will be more careful.
We must be careful but we must also live our lives. I am dreaming of new adventures and I do worry about the dangers that lurks in regards to having Lymphedema. There will be some challenges but life is too short to miss out on adventures because of being scared of Cellulitis.

I am curious of to what antibiotics you guys bring with you on travels or keep at home to fight Cellulitis. I'd appreciate if you would place a comment with the names of the products. All readers can benefit from this and this way we can help each other. Thank you.

Check out Lauras comment from February 7 in this post, it has some good tips on staying clear of Cellulitis and it is an eyeopener to how little it takes to get it. I can't link to the comment itself but scroll down and you will find it. Check out the other comments too.

Breakthrough

Last year I watched some of the Breakthrough programs with Tony Robbins, the supercoach from America. They were very interesting and inspiring and already back then I meant to write something about them but didn't get around to it. Now they are being repeated overhere and it is time to put some words on it.  
I imagine there are many opinions about Robbins, particularly in the therapy world. Personally I think he comes across very sympathetic, good at what he does and with an honest wish to help other people. In the programs he helps people in different places in life, people who may have been in an accident or in some other way need help to get back to living and not just surviving. The first program of the ones I have seen was the most interesting. It was about a man who at his own wedding party had jumped into the low end of a swimming pool and was paralyzed from the waist down. Very tragic. In the years since the accident, he had been miserable. He found it very hard having to rely on others for every day things. To be the man in his marriage. Not being able to do the things he once dreamed of. Robbins mission was to help the man get back to living and not just surviving and to help the couple back to each other and the life they had almost given up on having together. 
Although having Lymphedema can not be compared with being paralyzed and referred to a wheelchair there are still aspects of the situation that I think are the same and I felt that I could use some of Tonys words of wisdom. 
In this case he worked with the following seven points:

1. Rewrite your story. 
2. Confront your real issues. 
3. Discover your inner strength.
4. Redefine what is possible. 
5. Exceed your expectations. 
6. Change your way of thinking. 
7. Own your breakthrough.

Most of these steps makes sense to me but especially number four grabbed me. Redefine what is possible. That's what one has to do when ones situation changes, which it often does when getting a chronic disease and one can no longer do the same things as before, or be the same person. This is what we have to do. I've spent much time mourning what I can no longer do but gradually it changed and now I more and more work with what I can do. Also the second one, confront your real issues is interesting. 
I haven’t been able to find much about the program from Tony himself but I did find this page where Tony talks about the episode and there are bits from the show. On this page  another coach has interpreted the seven points.

I put some pictures here of my leg the night before I went into hospital with Cellulitis. They are not too gross, I just thought people should have a choice of not seeing them, that's why they are on a separate page. Next morning the knee was almost all red and not with the big white patch you see. When I look at the pictures the feeling and heat of the skin comes right back to me. I am thankful it is over.

Working around it

In my last post I said that I had somewhat accepted having Lymphedema and the routines I have now is for life. But there is more to it than that. I guess I relatively quickly accepted it within myself, although I still tried to cure myself, but when it comes to others it is a different matter. I still feel ashamed and I do everything I can to hide my foot and leg. It sometimes feels a bit surreal as it is not like I have committed a crime or anything and I shouldn't really feel ashamed but I do. However, I feel that I am getting better at working around it.
Over dinner at the first night at the patient weekend earlier this year I talked to Sophisticated Tina and I told her I was ashamed. I think she was telling me that in the Summer she would go swimming in the sea with her little daughter, wearing an old stocking and I said I could never do that. She asked me how long I had had Lymphedema and when I said "almost three years" she said "oh, you are not there yet", meaning that she was way ahead in the process of accepting it/not fussing so much and that I would get there too one day. Her words comforted me but I still find it hard to believe I will ever get to show my stocking. Who knows... If only people weren't so judgemental and if only I wasn't such a sensitive wuss ;-)

On Friday I went to the personal shopper again, stay tuned for more about this. It wasn't as mindblowing as the first time but I did get a couple of nice things of which I have to decide what to return and what to keep. Definitely one keeper, a beautyful long dress that can be dressed up or dressed down according to the occasion.

I have decided to wear the knee-high everyday at work this week, over the thigh-high, to see if it makes any difference. I doubt it as it is fairly loose, but we will see. I am going to see the fitter next month so can discuss matters with him and perhaps order a better one.

I thought I'd share that the sale is on at www.evans.co.uk where they sell very wide fit shoes.

Sorry about the koala bear, he's got nothing to do in this post but when when looking for a suitable picture in my archive I stumbled upon him and thought he was so cute. He is from this post about my Top 2 Australian songs.

More flaws and handicaps

I have updated the post about having flaws and handicaps as a younger person as I thought of some more. One of them is a woman related to me, a horse stepped on one of her fingers so bad it had to come off. I think it was quite hard for her back then, she must have been a teenager when it happened but I imagine she has learnt to live with it. At least she survived. Horse accidents can be fatal.
At the patient weekend recently we watched a really wellmade DVD that the patient association created about Lymphedema and living with Lymphedema in order to bring attention to Lymphedema and enlighten patients, doctors and others. One of the patients interviewed, a strong, beautyful woman in her late 40'ties, I imagine, ended up with Lymphedema after cancer, surgery, chemo etc. and it made an impression on me when she said something along the lines of "I got Lymphedema and it sucks but I survived, I still have my life". That makes sense. Mine is Primary and came out of nowhere so it is a little different. Still – and when others told me this in the beginning it would piss me off so much – it could be much worse. It could be better too though.
The last one on the list so far is a man in my Qi Gong/Martial Art class. He suffers from a condition that gradually is narrowing his sight and he is going blind. I think it might be Tunnelvision. He can only see things that are in front of him, he can't see things from anywhere near the corner of his eyes. I feel sad and frustrated about him loosing his sight. He is only 41 or 42, I think. When I learnt I got this urge for him to make the most of his sight before it is too late and see as much beauty as possible. Well, he does see me two times a week, but still... ;-)  Just kidding.
Life is liveable with Lymphedema too. We must live while we can, who knows what's ahead.

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.

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.

On having flaws and handicaps as a younger person

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

• Sleep apnea. Must sleep with a mask that helps with breathing.
• Hearing aid. (four people)
• Psoriasis in the face and most of the body. (two in face+body, three body)
• Marks/scars in the face and neck after removal of birthmarks.
• Bad eye.
• Diabetes
• Cerebral Palsy, suddenly onset in the 30ties.
• Deformed and missing fingers and toes.
• Pacemaker
• Fibromyalgia
• Epilepsia as result of an injury
• Amputated finger
• Bad eyesight, going blind
 
In that light my swollen leg and the need for compression stocking is "just" my thing. Like so many others have "a thing". I don't think differently about these people because of their "things".
I don't take comfort knowing that someone is worse off than me, but I do take a little comfort that mine is not worse than it is. It is bad enough though, but maybe it helps a little to see it in light of the fact that it is not so unusual to have something. And I can even hide mine.

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

Thinking

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

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

The first year

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