Tuesday, 27 July 2010

The green, green grass at home

I drink wheatgrass juice every day and get two trays of fresh grass delivered each week from my "grassman" Corey. Every Wednesday afternoon when I get home from work two green buggers like the ones on the picture greets me at my door.

I usually juice the one tray as soon as possible after getting home and then freeze it in small disposable cups. I bring one with me to work every day and drink just before lunch. I juice a shot from the second tray every evening before dinner. Recently, however, I have been cutting both trays in one go, putting the grass in the fridge and juicing two shots every evening before dinner. I use a special juicer made for leafy greens. When the rosehips are ripe I will try to juice them in this juicer. Last year when I tried to juice a handful of them in the large (centrifugal) juicer only a few drops came out, so this year I will try the wheatgrassjuicer.

Wheatgrass is also available as powder, I use that mostly for travel, as I believe the freshly made juice is by far the most nutritious.

Wheatgrass is indeed a super food, it is packed with all sorts of goodies, in fact it is one of the healthiest foods you can offer your body. It is rich in antioxitants, enzymes, chlorophyll, amino acids, bioflavonoids as well as many different minerals and vitamins. Wheatgrass is believed to help in protecting against degenerative diseases, stimulate blood circulation and support liver function.

Wednesday I went to my weekly Ichuan class. Part of the lesson we practice in couples and Wednesday I practiced with a guy I had not practised with before. He knows nothing about my lymphedema. When he wanted to make an adjustment to my position, touching my knee he of course felt that it was bigger and "upholstered", and so he asked if I was wearing something (as in a bandage). Great. I just said yes but perhaps I said it in a way so he gathered he should not persue the matter. I don't know what he thought. My teacher and one or two others at class knows, but I am not interested in everyone knowing. The situation is what it is though. I can be ashamed all I want, but it’s not my fault that the Lymphedema has come, so I should try to not be ahamed of it. But for Christs sake, everyone else is hopping around in little summer dresses and flipflops being beautyful, and then I turn up, elephant legged, sweaty and sticky in long trousers and compression stocking. I feel sure people would be repulsed if I lifted the leg of my trousers up exposing my leg, or if they could see me struggling to get the compression stocking on. I can disguise my condition and look quite “normal”, but if they only knew...

Maybe I am blowing it out of proportions in my head, but everything is so superficial nowadays and sometimes (even before LE) I think that it is no longer the inside that counts. It is for me, but what good is that if the majority feels the opposite? One can say that if it is the inside that matters to me, you would think that there would be others too. I don't have to look any further than my family and friends, they like me just as much as before, no difference there. But they also knew me before. So one can say that if people (and this is not just about men but people in general) that Lymphedema doesn't change anything, but is that completely true now? Yes and no, there will be people for whom it means nothing and there will be people who will run a mile and then one could say that “they are not worth it then,” but then I say “so what” - it is still me being left with a kick in the stomach and it doesn't really help thinking that they were the "bad guys".

Anyway, enough whining for one day, I will try to spare you in future posts. This blog is not meant to be complaining only.

It is a long process getting used to being “sick”. Not only physically, but at least as much psycologically.

Monday, 19 July 2010


Monday. Yesterday I was up at 8, baking bread, doing my Ichuan, coffee+newspaper and a stepclass at the gym. I started stepping about six months ago I believe, as part of my project of getting my body to do its job properly. Not that I wasn't active before my lymphedema started, as I have cycled a lot for years and always walked a lot. I have never been overweight and always felt relatively agile and fit. Lack of exercise has hardly any influence on lymphedema arising – a few months ago I met a long-time runner who, like me, suddenly got it. I think however, that exercise and various forms of training – including energy workout like my Ichuan – may help to get body in a better condition and thereby perhaps help better the situation. Time will tell. I'm planning to take up swimming soon, apparently some lymphedemasufferes have good effect from that.
Back from the stepclass I could feel my ankle was better than before I left, not so congested.

Yesterday I recieved a letter about the two extra stockings being granted. It was good news, though someone have messed up and I have been granted kneehighs insted of hiphighs, sigh. Must ring the handicap device and sort it out. Perhaps things are a little too hectic at that hospital, they were the ones who applied.
My two sessions of reflexology have had no effect. The therapist doesn't believes she can help me if there was no improvement at all to see after those two times, so I might as well stop here. Maybe I will try another therapist, one working more traditionally instead of this one where it was more like a massage.

I am pt rebounding to the extraordinary "Summerwine" by and with Nancy Sinatra and Lee Hazelwood. It is very unique with Lee's deep voice, Nancy's perfect shifts from high to low and of course the dramatic cellos and violins. Like a journey into a dark and dangerous place. You can listen to this masterpiece here.

Saturday, 17 July 2010

Heavy metals

Thursday I had reflexology for the second time - first time was the week before. There was no improvement to see or measure after the first time and it doesn't look like there is any this time either. My reflexology therapist has successfully treated people with secondary Lymphedema, and as she says, if people with a, due to surgery, damaged lymphatic system can achieve good results, people who, in theory, has an intact system should, if any, but perhaps this is not how it is. After all, clearly it is not intact, although I have all my nodes etc.

We talked about the possibility of heavy metals causing the Lymphedema. Apparently heavy metals, especially lead, is responsible for lots of conditions. My father is, like me, a typesetter, but, contrary to me who was trained only on computer and paper mounting, a great deal of his worklife he worked with lead, as this was the "technology" when he was young. You know, grabbing the letters made by lead, one by one, forming words, lines, paragraphs, pages, books etc. He was 28 when they had me, so at that time he would have worked with lead for 14 years and I assume he could have soaked up quite a bit in that time. Whether it can be passed on from father to child I don't know.
I am going to take a test that apparently will tell me just how poisoned I am from heavy metals. It is done by a hairsample with will be analysed and then a report will be send to me. I am quite excited about this, how interesting it is going to be!

I used the lymphedemapump for one hour yesterday at 75, I think it was better. The measurements were a little bit smaller, but it varies a little anyway and I can't be sure I always place the measuringtape the exact same place. On the front of my leg I can however, as I measure on some freckles which I have marked on a map of my leg I have made. Anyone say geek?

I have a huge blister on my foot which the toecap is responsible for, and it just continues to play up. I'll try to sew a small piece of cotton inside, hopefully it will help. Next time I need a new toecap I will order it with cotton inside, I have heard that is possible.


Wednesday I went to see my GP to discuss the possibility of recieving treatment at the Danish Lymphedema Clinic in Skodsborg north of Copenhagen. My GP could not say if treatment there was possible because it didn't appear whether the clinic has agreements with the public health insurance or not. I called the clinic Friday to ask, but it was closed for vacation. To be honest I think a GP should sort such matters out for their patients, but never mind.
I gave her three leaflets about lymphedema I had from the supportgroup, one for each of the doctors in the practice, to bring their attention to this condition and hopefully help others in the future. It was pure luck that my lymphedema was discovered and dealt with as when I went to my GP when the swelling started, she thought I may had had a thrombosis and send me to, which turned out to be completely irrelevant examinations at the cardio section, but then they send me on to the hospitals lymphdepartment and I was diagnosed. So many GP's just don't know anything about Lymphedema.
Earlier this year I went to a workshop with the patients organisation and at dinner I sat next to a woman born with LE in both legs. I don't know her age, but she had grandchildren, so I suppose she would have been around 45 or more (looked 45-ish), and it was only 12 years ago she was diagnosed - upon reading about a Lymphedemasufferer in a womans magazine, and then telling her doctor "listen, I think I know what's wrong with me"! That goes to show just how little knowlegde about LE there is even among doctors.
Anyway, I am holding my breath until the the clinic up north opens again on 26. July and I can ring them. I am wondering how it will be to have treatment there, and I wonder if I am doing the right thing, moving away from the hospital where they also are supposed to be real good, though this is not my experience. Nothing else to do but try, see what happens.

Thursday, 15 July 2010

My new pneumatic pump

I have recently been granted an IPC-pump, and last week it was delivered by a lady from the distributor. 
I am unsure of how much pressure I should go with. At the hospital they set it on 90 or 100, but the lady from company said 40 – but she said also that some are running with high pressure, some with low, and that it is a matter of taste. Now I have tried a couple of nights on 40, 50 and 60 and have not been registering any differences in measurements. The only difference I could detect is that the forefoot decreased slightly. Today I will see if I can run an hour on 90. Comments on this are highly appreciated.
I spoke with the hospital today, they'll try if I can get me two more stockings. Copenhagen municipality has only granted me two per year, and that's not much, I think. I have already used the two, so unless the new application goes through I have only one stocking until September. I have no washing machine of my own, and it is a hassle having to handwash the stocking all the time. I am hoping for the best, but we'll see.
Today I have been good, doing my Ichuan (Qi Gong). Haven't been doing it much apart from the weekly class, but today I managed. It is my mission to do 20 minutes standing every Saturday and Sunday and on my weekly day off, and the other days some less strengthening and time consuming – the classical Ba Duan Jin or Y ji jin exercises.
Baduanjin keeps the bones and tendons stron and flexible, and Yjijin promotes flow in the body. The two series of exercises assists in getting better at what really rocks: Zhanzhuang – pronounced jamjong. Standing training. The purpose/benefits are better circulation of the blood, increased muscle control and thus greater brain activity, mental relaxation and tranquility. To get the energy circulating throughout the body at the same time, using only standing and moving exercises. Attention to and in the body, which creates energy circulation throughout the body. For training we do different exercises and standing, but at home I just stand in different positions we have learned. It is quite tough, and although it may not look like it, there is a lot going on inside the body, and one can really feel one is doing something.
On the trampoline, I have come to Summertime by Chet Baker (4:16).

Tuesday, 13 July 2010

Feeling hot

Oh man, it is hot today! It is torture wearing the stocking and toecap, but I am sure all you other sufferes out there know all about that.
Yesterday I had all the windows open with the result of hot air coming in, so last night I also had everything open, so this flt could be cooled somewhat down, and shortly after I got up this morning I closed all the windows and pulled the curtains in the room where there sun is during the day. Still hot, but as bad as yesterday. I am watching Tour de France today (today too) and eating Tour de France food: Tortillas
slightly toasted in a dry frying pan, spread mayo on, place sliced cucumber on and sprinkle with a little salt - yum! The term "Tour-food" stems from years ago when my little brother was really into the Fit for Life concept and that summer we had these, from the book, when we were watching Tour. They taste good, are easy to prepare and they are summery, and OK healthy I suppose, if you use organic mayo.  
Today I have testdrived a skirt I bought this spring. Well, I didn't drive, just walked to my local market to see if the skirt is usable or if my big ankle is showing too much. It went fine, looked OK, and I caused no major traffic accidents and it was nice to wear a skirt, it gives a little more air than trousers. It was a bit windy, so a few times the foot and bottom of the lower leg was exposed briefly, but I think I can live with that. The skirt is from Ellos (image from there). I got it in a beautyful, dark dusty blue.

Monday, 12 July 2010

Handlotion becomes feetlotion

It seems that applying herbal lotion upon removing the stocking for the night have helped a little on the harlequincellulite. Across the forefoot, where the toes begin, I have a deep fold/furrow which gets very dry, rough and looks like it might crack if I don't take action, so every night before bed I apply my wonderful handlotion Biomain from Biotherm. I've used it for years, as have Mum, and it's simply the best, so now it keeps both my hand and feet soft and smooth. Also on the outer side of the foot I have a deep, dry furrow, on that I apply a cream for cracked heals, it works fine.

Sunday, 11 July 2010

The right treatment for me

I am receiving treatment for my lymphedema at a hospital here in Copenhagen. Presumably they should be some of the best in this field, yet I doubt I am getting the treatment best for me. The treatment I receive is limited to lymphedema-pump and bandaging. Bandaging however, I get in abundance, recently I was bandaged for six weeks, the bandages was changed every four or five days. Unfortunately it did not lead to a slimmer leg, almost the contrary, as I, when it was finally over, was left with a leg barely bendable, and a sore and very swollen knee filled with fluid. Reflecting on it I suppose it is logical that this would happen, a limb being tied up and not able to move will wither and languish. Now it's some weeks ago and my leg is somewhat better than when the bandages first came off. However, I now have to wear the toecap every day – before I almost never used it, and all in all I feel my leg is worse now than before. It is harder to keep the edema down, especially my ankle is very swollen, and I can no longer potter around at home for just five minutes without the stocking on (gotta take it off for washing sometimes...). I have to, once I have left it to soak, go lie on the sofa with the leg elevated, and then later quickly rinse it and then straight to bed.
The chiefnurse will not hear of anything other than lymphedema-pump and bandaging, there will be no manual lymphatic drainage.
After this last episode I feel I have to try something else. It is my body and I can not accept my leg getting worse than it could have been, because of hidebound, bustle and sloppiness.
What to do? I called a a renowned lymphedema therapist (Skodsborg) to have a chat, and she was absolutely mortified to hear that I had been bandaged for six weeks, and that I only got IPC pump, not hands-on massage. "A machine can never replace a pair of human hands." So true. This practice only does bandaging for one day at a time, and always with MLD first. How I would like to try this place for treatment... Unfortunately, this is a private clinic and so I would have to pay for this myself and since my income is currently very limited, this is not possible. I have now made an appointment with my GP, to see if there is anything she can do to get me in there instead the hospital, I know there are lymphedema patients receiving treatment there, paid for by public health insurance.
I should be SO grateful for ANY input on this matter, particularly about manual lymphatic drainage on legs (massage). Thank you heaps!

Friday, 9 July 2010


Yesterday I tried reflexology for the first time ever. The experiment is to try and get the body to do its job; pump the lymph around properly. It might be useless, but I feel it is worth a try. If nothing else, the treatment may help cleanse my body and thus perhaps help me in my selfhealingproject. We have agreed to try two session and see what happens. I don't think two times only is much, but that's what the therapist suggested.
There was no change to see neither at bedtime nor the next morning when measuring my leg, but the therapist said it could take a day or perhaps even two before results, if any, would show. She has given no guarantees, but after many amazing results she no longer dismisses anything. I've got a huge blister under my foot (from the toecap), but she was gentle with it, so it went fine. After reflexology and a quick pitstop at home, I was off to Qi Gong, more on this another time.

On feeling beautyful with lymphedema

Recently I went to a party. I haven't been out much since my lymphedema began, but now I had an invitation for a Birthday party. Before lymphedema I would always wear a skirt or dress when going out, and I don't really have any trouser partyoutfits, so you can imagine my joy when I found this beautyful long dress from Asos (photo from there): 


As my foot tends to swell quite a bit it is limited what footware I can use (the sexy, long, high-heeled boots now live a lonely life tucked away in the back of the closet) and I don't want to show it off anyway because of the way it looks, but I have purchased a – well actually two – pairs of lovely golden ballerinas, so on one foot I wear a size 39 (European, that is!) and the other a 40, and the shoes were perfect for the dress. The dress goes all the way to the floor, only the fine golden noses showing, just perfect. It was wonderful wearing a nice dress and feel a little bit feminine again, which I think can be a challenge with trainers and box pants although I try to make an effort with tops, hair, etc. Being and feeling feminine is of course not just about clothes and appearance, but it is part of it. I am not very interested in fashion and what is trendy now, but am delighted to find that maxidresses are in fashion this season because that means they are accessible, and that I could get my hands on this beautiful piece. I am so happy I got it. Bit of a drama though, as I had ordered size 10 to start with but had to return it for a 12, but it only came the day of the party, delivered to my parents house, so I had to wash it, dry it a little, travel home, dry some more and finally shorten it before the party, but I managed in time, phew! Even had time to make a yummi raw chocolate icecream: Frozen chunks of banana, cashews (best soaked for some hours), water, dates, maplesirup, vanilla and cocoapowder, all blended and processed in icecreammaker. Yum!

Update: Check out my tips on shopping for Lymphedema wear!

That'll teach me!

Part of my selfhealing project is about cleansing the body and in doing so I take baths with Epsom salt. One day in March this year I learned the hard way that, having lymphedema, one should not bathe in water warmer than 40 degrees C. After a lovely hot bath and having rinsed off in the shower I suddenly felt very dizzy. It was a little like when getting up too quickly after sitting down and I thought to myself "must hold on to the shower doorway until it is over" but the next thing I remember is that I'm on floor trying to detangle myself from the kettle which I had used for heating extra water (the hot water tank can not keep up). I managed to get up to sit on the toiletseat and after a little while I could stand up and go lie on the bed. That was when I discovered a semideep cut on the buttock/hip, it was from the metal spout on the kettle! The wound has long since healed but I still have a memory – a fine red line the shape of a kettlespout! Sometimes when I'm sad I am thinking that it doesn't matter anyway because there may never be anyone seeing that part of my body again. Who wants to be with a girl with an elephantleg :-/ It was a long time before I could (and dared) to resume my baths, and now I always measure the temperature of the water before I get in. Later I discovered that it is common knowledge among lymphedema patients that we can not tolerate very hot baths due to all the toxins released causing trouble.

Just because I can!

After my long, but less efficient bandaging in early summer (see here) I am still grateful every day for again being able to move and use my legs. I love cycling, and how wonderful it was, after getting rid of the bandages, again to saddle up and go for a bikeride in the beautiful park area near me. Oh bliss, I had to shed a tear, that's how happy I was! Sometimes I walk down the stairs or into the train in a particular way just because I can! Ways that I could not with a stiff leg. I am sure that my 12-kilometer cycling and 20-minute walk each day helps keep my lymphedema under control. I jump every day on a mini trampoline/rebounder, and some time after I started I could feel that my lower leg were not as rock hard as before, now it is soft as the "good" leg and maybe I am seeing things I want to see, but I think the lower leg seems a little less than before I started rebounding. For a long time I have jumped for two minutes every hour when I was at home as I read in the e-book "Heal Your Lymphatic System & Reduce Lymphedema Swelling" this is the most effective. However, I am a little bit suspicious of this book as I can not see that the author himself has lymphedema, and I often come across hidden advertisements for his book on the web. Anyway, now I tried with the two minutes for some months and I will now try another strategy; gradually working myself up to maybe 15 minutes rebounding per session. Pt. I jump a little more than four minutes, not every hour but a few times during the day. I have got iTunes on my computer and so when I jump I play a song that lasts the number of minutes / seconds I want to jump. That way I won't have to mess with the timer etc., and I can listen to my music while I jump. Pt. I jump to "Alt ljus på mej" (All lights on me) by Bo Kaspers Orkester - my favorite Swedes!

New compression stocking

New compression stocking. Better color ("Sand", now that it’s summer) but the compression doesn't seem as high as with the old one, although the measurements are the same as last time. Silicone edge gnawes, I'm now the happy owner of something that could be defined as red cellulite with Harlequin checkers, hmmm. Sometimes folds the top of the stocking down to get the skin some air , must try with some lotion at bedtime.