Saturday, 31 March 2012

Sophisticated Tina

This post is about a stylish woman I met at the patient weekend recently. She was a huge inspiration and I want to share with you guys. She had had Lymphedema for much longer than me, I forget if it was eight or 15 years, I met so many people there and I have some of their info mixed up.
Anyway, this lady really knew how to look stylish and make the most of her options with Lymphedema.
She made a point of wearing a nice makeup, jewellery, stylish hair and glasses – she had at least two pairs of glasses to shift between. Her upper body was having a party with colours, feathers etc. Lots going on there, shifting the focus from her problem area to another place. It really worked!
For example, she would wear a bright green tunic with a sleeveless jacket in another colour over. A little bit like this:

While I was searching for these pictures I also found these two below, doesn't it look stylish? Great way to spice up a plain top and bring attention to the upper body (leg lymphers). You can find lots of scarf tutorials on Youtube.

Reg. trousers/pants, she was good at sewing and she would alter her own trousers/pants. She sort of said – as did the stylist who spoke on the first night, and the stylist I went to before Christmas – to forget about boxpants. It makes our legs look bigger. It is true. When I look at pictures from a trip last year where I wore some really widelegged jeans both of my legs look enormous. See:

It's me in the middle.

It's me to the left.

Sophisticated Tina showed me her foot once and I saw her whole leg when we were swimming together, her leg is at least the size of mine, if not more, but she worked around it so well that no one would ever guess anything was wrong. I think it really makes a difference to be able to see that difference between leg and foot, even if covered in boots and baggy pants. Like this outfit I got at the personal shopper last year:

I have a waist now, yay!

She would buy shoes and boots in different sizes, one for each leg. Perhaps I should do that more, get on with it and focus on what I can do instead of what I can't do. Accepting that this is what I have to do and then stop worrying about it. What do I get from pretending I can still wear the same size as before when I can't? Nothing. No wait, grief. Perhaps if I buy different sizes I can actually wear more styles than I think I can. Maybe not stilettos but perhaps a little heel. She would also have shoes and boots made wider at a shoemaker, if nessesary. I've been aware of this option too but haven't used it yet. On the first day she wore Converse sneakers, I am not sure if they were high or low but I would go for high, I think. Later I saw her in some stylish boots a little like the ones below, she had the one made wider. She wore them with jeans (that she had altered) over, folded up so the boot showed.

She had a pair of shoes, the one two sizes bigger than the other, for when wrapped. She would be wrapped four days every two weeks at her therapist. I might look for some cheap, comfy shoes for wrapping instead of my trekking sandals.

Thursday, 22 March 2012

More compression

Monday I went to see my fitter about my Jovipak nightgarment. I wanted to discuss the fact that it's not really making much difference. He was concerned. It is a new product overhere and he had not had this problem before. I don't think he has sold all that many of them yet. He would contact Jovipak in America right away and see what they thought, I'm still waiting for news from him. He said they might take it in a little and see if that would help. I mentioned the Mobiderm nightgarment to him, a lighter garment with little foam squares that I have been thinking about for a while, but that dream ended when he said I would have to do a full wrap over it to get anywhere.
Just to check, he measured my leg and then got a concerned look on his face. The measurements had gone up quite a bit on my lower leg since I got this stocking and the nightgarment. The stocking can't hold things back. I might have to get a knee high, grade 1 to wear when at work where I sit a lot. Darn.

I also mentioned my not-so-good-anymore foot to him and showed him. He said it doesn't have to be Lymphedema but could be venous insuffiency. He said that it is not all that common to see Primary lymphers getting it in both legs. I don't know about that, as I think there are many out there with both legs affected. Perhaps most of them have it from Birth. I'm thinking "who cares if it is venous insuffiency or Lymphedema if I still have to wear compression stockings", but apparently with venous insuffiencency one needs less compression than with Lymphedema. Whatever. Anyway, he told me to cut an old compression stocking above the ankle and use it at night for a while to see if that will do it. I haven't gotten around to do that just yet but hopefully I will manage this weekend.

Monday, 19 March 2012

Lymphedema patient weekend 2012

This weekend I attended the annual patient weekend with the Lymphedema Patient Association of my country. It was a really good weekend, very positive and very giving. It's been so good to interact with other lymphers, discussing various matters, sharing info and generally just being with others with the same condition. Not feeling like a freak. Many of the others were breastcancer related arm lymphers but there were also some legs. We all wore nametags, blue for legs, green for arm and yellow for lipedema. A P or an S indicated if we were Primary or Secondary. Really good, and a good "ice-breaker". People would say to each other "I can see you're a primary too (there weren't that many Primary), have you had it since Birth" and then a conversation was on the way.
The weekend was a mix of speaks (a German Lymphedema specialist, a therapist, Lymphedema doctors, a fitter, a stylist etc.), workshops, a showing of a new DVD about Lymphedema the association has created, and various distributors showing off their products (garments, shoes, pumps etc.). One of them was this product (for now I link instead of writing the name). Apparently it can be an alternative to a Lymphedema pump. A Lymphedema therapist spoke about the product, she had had good results with it. Also this product was available to see and learn about. I'd like to investigate more on both of them once I get time.
The workshops was a chance to try or hear about Mensendieck system, acupuncture and water gymnastics. I had signed up for acupuncture, very interesting. The acupuncturist said that Lymphedema is related to the spleen meridian. I thought that was particularly interesting as the Qi Gong training I do also deals with meridians and I'm wondering if there are exercises I can do to stimulate the spleen. I will ask my trainer. I tried acupuncture 14 times when Lymphedema first started, nothing happened. However, the clinic represented at the weekend had good results, they specialised in Lymphedema. Still, now that I know more about Lymphedema I am terrified of triggering another outbreak, so I won't try again.

I met some really nice people. Most of the people there were probably 60+ but there were also some younger than that. I spoke to a 37-year old woman with Primary Lymphedema in both legs. I could relate to her, and I'm glad I got to talk to her. Her legs were huge. I also hung out with a very stylish woman that I had seen two years ago but didn't speak to at that time. When I saw her back then I thought she was around 30 or so but when we sat at the same table for dinner the first night this weekend she mentioned her 25-years wedding aniversary last year. "Huh?" – I thought. It turned out she was 48! She looked so good and she really knew how to dress around her condition and make the most of her options. She had secondary Lymphedema in one leg. She was indeed an inspiration, more about her in a separate post soon.

There were lots of socialising at breaks, mealtimes and at a walkingtour in the beautful surroundings. The hotel was really nice, great pool and most important – a pancake station at the breakfast buffet ;-)
I am glad I went. I can strongly recommend other Lymphedema sufferes to join a patient association and attend their meetings etc., if possible.

Coming up: At the fitter, swimming and sophisticated Tina.

Monday, 12 March 2012

Update on my nightgarment

I have had my Jovipak nightgarment nearly three months now and I've been wearing it every night except when washing it. It takes 36 hours or so to dry.
There is not much difference to detect. The tissue in my calf is a little softer but the size has not gone down. I think the garment is too loose. I have been wearing it with 4-5 rolls of short stretch bandages over it to add more compression but even that doesn't seem to make any difference.
I have made an appointment with my fitter next week to see what he says. He sells another garment too, a Mobiderm night boot. Perhaps that will be better for me. The Jovipak is very padded and can be a little hot during the night, I think the Mobiderm is lighter.

For a while I've been wanting to share this song with you. Check it out. It's from last years season of a Danish show similar to Idol. The way this version is performed really brings out the beauty of the lyrics. I never realized how beautyful this song really was before I heard this. It is a cover of another alternative version, but quite different. Almost hauting, I feel. Anyway, I hope you like it. There is some talking first, the song starts at 0:40.

Thursday, 1 March 2012

Laundry bags

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

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