Tuesday, 31 August 2010

My first MLD

Today I have been to my first Manual Lymph Drainage with a physiotherapist, and it went really well. My leg is quite soft and the lymph fluid is mobile, so that's good. The massage was very comfortable and my therapist is really sweet and very knowledgeable. Immediately after, it was clear to see that the forefoot had gone down a fair bit. I walk around almost with a little cushion much of the time but she managed to almost make it disappear. She said that it is in the hours just after drainage that the body is really working with the treatment, so I am curious to see what the measurements say tonight. I measure my legs six places every morning and evening monitoring the development. Next session is on Thursday where another hour on the couch awaits me, feeling excited about it. The strategy is to give me a couple of long and very thorough treatments, kickstarting the body and then see how how I react to it.
I am so glad that I found this clinic.

Thursday, 26 August 2010


Today was the day when I was to have a consultation with a physiotherapist specializing in Lymphedema. A day I have been anticipating. The therapist was very, very kind and seemed very competent. We had a long talk and she examined my leg. It seems that my leg is very cooperative and the fluid quite mobile, so that's good. She explained a lot about the lymphatic system and also gave me a short session of manual drainage.
We talked about the lymphedema pump and she too said that it is very important to open up the system before pumping away, since at worst it may cause lymphedema elsewhere, ie in the genitals! I look forward to her showing me how I can open up the right way myself, it would be really good. I find it appalling that I have not been informed about this neither by the hospital where I had treatment before nor by the company that delivered the pump. Shame on them!
Anyway, next week I will go there for treatment two times of one hour. Feeling excited about that. After the two treatments we are going to evaluate how my leg is reacting and then make a plan. The plan could be five days of treatment in a row, possibly with wrapping. It all should end up with a new compression stocking and hopefully a somewhat smaller leg. She said that I will be done by November where I am going on a long trip to Thailand, so that's good. Maybe there is even time to make two stockings, that would be fantastic.
Already after the short session of manual drainage today my leg feels a tiny bit different (better) when I bend it. Not so tense and filled with fluid.
I am so happy that I will be starting treatment there and now I finally feel that I am being "taken care of." Yippiii!

Sunday, 15 August 2010

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.

Friday, 13 August 2010


The last 10 days I have trained Qi Gong (standing) every day, six minutes or more. It feels as if my lymphedema is more "quiet", not as "active" as usual. I don't know if it has anything to do with training, but maybe it has. As the worrier I am I wonder if it is a good thing or a bad. I am leaning towards good, thinking that the training is working like it should – creating circulation.

Thursday, 12 August 2010

Open up!

I have just read a post in a big Lymphedema forum about the importance of opening up the lymphatic system in the abdominal region before using a Lymphedema pump, so the fluid being pumped away from the affected area is being lead away properly and doesn't "strand" and cause lymphedema in the genitals. Apparently a great number of people have developed genital Lymphedema by pumping away, not opening up first! I have never done that myself (opened up), but will sure do it from now on!

You may find more info about selfdrainage in this video:

Tuesday, 10 August 2010

My new therapist?

Recently I called a lymphedema therapist in another part of the country, a therapist that I had met at the patient associations yearly meeting earlier this year, I wanted to ask her if she knew of any physiotherapists in the Copenhagen area where treatment is covered by national health insurance. She knew of a couple, and so I called one near me. The therapist I wanted was on holiday, but is now back and I rang and spoke with her yesterday. How happy I was afterwards, and still am! She was very, very sweet to speak to and I already feel I am being taken care of. Like the other place up North I called a while back, she was horrified to hear about the no-good six-week wrapping at the hospital and of the fact that it was nurses, not doctors or physical therapists conducting treatment there (at the hospital). Anyway, I have now made an appointment for a consultation on 26 August where we will talk, she will look at my leg and we will make a plan. I am so pleased and also a little nervous (good nervous) how it will go. Maybe it will be no better than the at hospital, but I feel pretty sure that it will be better. I keep thinking about what they said up North: "A machine (lymphedemapump) can never replace a pair of human hands."
Today I have been to a funeral, the Dad of a good friend of me and my family. I feel quite drained now, funerals is one thing one never really gets used to, eh. Some beautyful psalms, including this one, which is one of my favourites. Also found this unusual version. Very dramatic construction, I find. The title translates "See, the sun is rising (from the oceans lab)".

Sunday, 8 August 2010

A magic garden

This picture is from the moore (I snatched it from the web), and not where I sat,
but similar, only my secret place was even more tranquil, peaceful, lovely.

Yesterday I trained (Qi Gong/Ichuan/Yiquan) at a wonderful place at the moore near me.
is a little secret place, as you only if you know it is there, can find it. Especially here in the summer when vegetation is quite dense it is impossible to see from the path. There is a bench litterally one step from the waters edge and sitting there is like being in a secret, magic garden. There are also wild flowers and even blackberries, I think. I brought my flask of coffee and some cake, and when I had marvelled over the scenario for a while I rised and and did ten minutes standing (Qi Gong). Ideal settings for it. I will definitely go there again for training  – and coffee :-)

Friday I went to a shop nearby to get a couple of household items and they played "Heartbreaker" by Dionne Warwick. Whenever I hear those first tunes I get instant goosebumps, and first thing home again I found it on YouTube and jumped on the trampoline listening to it. It is so good. You can listen to it here.

Today it has been raining all day, but that's OK, I have been busy doing housework. Having my good friend from abroad visiting from next weekend, so better clean the place up. 

Wednesday, 4 August 2010

Wonderful day off

Today is my day off, oh joy. I have had a long sleep, trained Ichuan and baked a wonderful bread. Quite simple, but baked in my Römertopf – a clay pot – it gets beautifully golden and delicious and with the most incredible, crunchy crust, yum! Next time I borrow my dad's digital camera, I must bake and take a picture so you can see it.
Yesterday I went to the weekly Ichuan class and it was good. We were back in the community center after summer training in my teachers lovely garden. It's been wonderful to train outdoors. The last time in the garden we had a BBQ afterwards, super nice. Great to attend a class and be part of something.
Ichuan / Qi Gong is very, very interesting. It is very comprehensive and I understand that I have a lot to learn. I believe that through continuous, intensive, wholeheartet and correct training Qi Gong can be very powerful. Whether it is able to correct the body so much that the lymphatic system is motivated to do its job properly, I have yet to find proof, but I am ready to try. I do not want to accept my Lymphedema fate without fight. I am sure some people think is pointless and silly, but so be it. Maybe it is pointless and silly, but maybe it isn't. We shall see.
Ichuan belongs to the so-called internal styles. Can also be spelled Yiquan – and probably also other ways. 

The more I learn about this, the more hooked I am on it and the more I think that if there is anything that can help me, this perhaps is it. And wheatgrass.I am, after only one year of training, a humble beginner, and does not yet manage to describe adequately what it is about, so here comes some introduction I found elsewhere:

Yiquan (Ichuan), also known as Dachengquan, is a Chinese martial art founded in the mid-1920's by Mr. Wang Xiangzhai. Yiquan aims at developing the natural instinctive abilities and reactions of the human body and mind. Instead of practising fixed movements and postures the practitioners of Yiquan research the movement in its simplest form, that is the interaction of relaxation and tension. The interaction of these two states is the origin of every movement, but alone neither of them is enough. Only when both of these states are trained to their best, to a level where the whole body and mind are one, can maximum power and other necessities of combat be achieved.
Yiquan enjoys grat fame for its effectiveness in combat, but Yiquan is also very effctive for keeping fit and improving one's health. Many clinical tests and much research conducted in numerous hospitals and institutes all over China have proven Yiquan to be able to help patients with many kinds of deseases, especially chronic ones, and to have very positive effects on the central nervous system, respiratory organs, blood pressure, circulation, heart etc. Therefore some exercies of Yiquan have become part of the methods of treatment in many Chinese hospitals.

On the picture below is me jumping on my trampoline. I think I ascent a little more than the picture shows but the picture is taken with a timer, so I was happy simply with one where I have airtime. Rebounding has, as mentioned in an earlier post, meant that my lower leg is no longer rock hard, but soft and – I think – a tiny bit smaller than before. Because of the gravity and other things rebounding is efficient for exercising the lymphatic system and flushing it. My greatest fear is that the accumulated lymph fluid "gets stuck" and converts to fatty tissue, and the the thought of this motivates me to jump every day, sometimes just one or two sessions, even at times when I just can't be bothered. 
On Youtube you can find information and videos if you search for "rebounding".
Among the many articles I found on the matter by google "rebounding" and "lymphedema" are these:
Rebounding for detoxification and health
Jump for your Lymphatic system!

I haven't come much further in terms of length of each session, I am now on 4:28. That calf muscle in the Lymphedema leg gets tired faster than in the other leg, or so it feels, so I work myself only very slowly upwards.
My trampoline is a Kessler, it is OK, but next time I will buy a slightly better one with more bounce.
If I had a garden I would buy a large garden trampoline, that would be something. I have read that even people who are unable to jump themselves can benefit from rebounding sitting on the edge (it'll have to be one of the big ones) while another person jumps. Locical, isn't it, as you still get the "gravity rush" which is what excersices the lymphfluid.

Monday, 2 August 2010

As good as gold

As part of my project of cleansing my body and boosting it with nutrients I drink fresh vegetable juice every day. Whenever possible I go with carrot, beetroot, ginger, lemon, cucumber, apple, parsley and celery, but recently I have been unable to get celery and organic beetroot, but a little variety doesn't hurt, so right now I am on liquid carrot, apple, ginger and lemon – oh bliss, it it so good - especially on a hot day! I use my Philips juicer that I got for Christmas a year and a half ago. My sweet Dad drove a long way to get it for me. Last year Mum, my brothers and I got him one, so now he is also juicing away – when he has time, that is. Fresh juice is super healthy and nutritious, and extra handy for those of us who are not so diciplined when it comes to getting our 600g a day, hmm. 

I think I have come to the conclusion that a pressure of approx. 100 of the IPC-pump is good. Maybe I will try for a tiny bit more. To strengthen its work on the forefoot I put a folded sock on top of the forefoot, inside the jersey- or nylon stocking I use (have cut the leg of an old pair, I don't really like my leg being naked in the pump) and that intensifies the pressure there. I experiment with various objects around the bone on the outside of the foot in order to drain the area more and I get me a little more shape. On the big toe I put an old filmcontainer as I am prone to the nail growing downwards into the skin and it can hurt a little with the pump squashing the toe and nail. The whole thing looks peculiar, to say the least :-) 

This weekend I have had my beautiful little nephew on "holiday" and we had such a good time. What a beautiful little person he is. Nine years. We played Monopoly and Risk, made sushi and nachos, he has been grinding coffee (my old-fashioned coffee grinder is a hit) and we were exploring the ruins of Absalon's Castle under Christiansborg Castle in inner Copenhagen. It's been absolutely super.