Friday, 31 December 2010

Happy New Year!

It is the last day of the year and I would like to wish you all a happy and joyful New Year.

I hope I too will have a good new year. The old one has not been so good. It started – after a wonderful Christmas and New Year's Eve and what seemed like a bright future – with deceat, breaking up and breaking down. A breakdown I still ain't done with. Everything has changed and nothing will ever be the same again.

A breakdown may be a new beginning. An opportunity to build oneself up again. Each individual have the responsibility to pull oneself out of the darkness. Making a decision of ending the selfpity and stop wasting time. Dry ones eyes and stop being a victim.

There is a time for everything though. A time to grieve. A time to be bitter. A time to potter around in the darkness. A time to move upward again. Timing is everything. Being ready. Maybe one should from time to time check whether one is now ready to make the change that one needs and then act, if ready. Otherwise one might not get up. If one is not ready, it is no use.

It has been a year when the consequenses of having Lymphedema fully dawned on me. It has been a spring with six weeks of continuous bandaging with fatal consequences. A summer of shame and grief over my ugly leg in my fleshcolored supportstocking. A year of hybernating.

Some good things happended too though. I started this blog, and although I haven't got tons of readers I don't regret starting it, and perhaps over time more readers will come and share knowledge. Must give it time. I am grateful for the comments and emails I have recieved, and for my followers. Thank you.

It has also been positive to get away from the hospital and their "treatment" and it has been a joy to find my amazing, competent and caring physical therapist who takes such good care of me. I am so grateful. I often think of the innocent people who still frequents the hospital where I used to go. I wish that they too had escaped and gotten/taken the opportunity of professional and competent treatment with manual drainage, proper bandaging and measurements, etc.

My recent trip to Asia was also a good thing, and it did me good. Also my good friend's visit and our trip to Stockholm I cherish.

Despite all my moaning I am grateful for what I have. My loving parents. My home. Food in my belly, a bed to sleep in, healthinsurance. My travels. My Qi Gong teacher. My good friend. My little nieces and nephew. My new coffeemaker.

For the first time ever I am spending New Years Eve alone. Feels a bit surreal, but I think it is going to be fine.

I wish you all a happy New Year, filled with joy, love and good times.

Thursday, 23 December 2010

Under pressure


I need your help! It really hurts on the one of my two sensitive spots now, I have marked it on the picture above (not my foot, a photo I snatched somewhere). I am off work today and indoor because of snowstorm, so no shoes on. I have to wear the stocking and toecap, but it hurts – what to do? Anyone out there had the same problem?

Wednesday, 22 December 2010

Happy Christmas!

My leg is doing better, it had expanded a little on the trip, but the cooler temperatures and to be home following my usual routines has brought it down to close to what it was before the trip. I've been to the Physiotherapist three times since my return, the two of which I got bandaged and I have also wrapped the leg myself a couple of times. Some days I put a light bandage on the outside of the stocking on the lower leg, that works really well on me.

My foot hasn't been all that great lately, it gets squashed in the shoe, and the cold somehow makes it worse. Yesterday I had pain on one of my sensitive spots, which was even turning a little blue-ish when I took the stocking off at the Physio's. At that time I had been standing in the cold waiting for a bus for 35 minutes though. My shoes are quite good apart from now being too small for the lymphedema foot, they are hiking-style Salomon's, and it is the only shoes I can actually wear now with winter, but I hope I can find some new and better at the upcoming sale, some with room for my toes. Will probably have to buy two pairs in two different sizes, but that's life. As much as I no longer enjoy shopping I really do have to find something, shoes as well as clothes.


The weather is crazy here, this morning it was -17°C where I work, arghh! Almost too cold to handle. A place not so far from here it was -22,5° – hasn't been that cold since 1981! Really beautyful with the snow though, like a fairytailland.

I wish you all a wonderful Christmas!

Wednesday, 15 December 2010

New Easy-Slide

Yesterday I recieved my new Easy-Slide and it's really good. The compression stocking came on like never before this morning. I'm not sure if it is made of a different material than the old one or if it is because it is new and not worn. Probably the latter. The size (L) is better than the old (M). I bought it at lymphedemaproducts.com, and there was no taxes added on its way to Europe from America. 
It seems an Easy-Slide lasts around eighteen months. Perhaps it pays to buy a few at a time, postage is probably the same.

I've got this song in my head at the moment and I listen to it all the time. In cafes and restaurants in Thailand they would often play compilations from the 70ties, including this song. I think it is very special, she sings it so passionately, and the lyrics are very meaningful.

Update on dateballs: Go easy on the pepper..!

Sunday, 12 December 2010

Date balls

Yesterday I finally managed to get out and get some Udo's Choise for my juice. It's good to be juicing again and now I can complete it with the oil. I also got some big, beautiful pomegranates, they provide a nice flavor and a silky smooth and delicious texture to the juice. I think I might freeze some for smooties and salads later. It's supposively one of the healthiest things one can offer the body so I am stocking up now that they are available and in season.

Today I made my delicious – and healthy date balls. They are fairly Chrismassy, but I make them throughout the year. It has been a while since I last made them, but now I finally have some dates and almonds, and I had the time. Here comes the recipe:


Healthy, yummi date balls 

Equal parts of dates (dried) and almonds (with skin) – though perhaps a little more dates 
Spices – I use white pepper, cardamom, cinnamon and cloves, all ground 
Vanilla
Cocoa powder 
A little bit of water or orange juice (very little)

Grind
the almonds in a food processor or electric mini-chopper. Add the rest of the ingredients and taste as you go. The mixture should be of a consistency so you can roll balls. These can be tossed in finely chopped almonds or eaten as they are. Store in cool place. Yum!
Instead of dates only you can use a mixt of apricots, raisins, almonds etc. You can also use other nuts than almonds.


************* 

 
Thursday and Friday I went to the physio. My therapist thought my leg looked OK, all things considered. She wrapped it and told me to wrap the lower leg at night myself and also do some exercises. I hope we will soon get the leg back to the fine state it was in before the trip, I think we will.
I have started using the lymphedemapump a little again, it has been collecting dust for a long time (see here why), but before the trip I learned how to do selvdrainage, so now I feel OK using it and I need its help. I have previously had it on about 90 but my therapist told me to turn it down to 40-50, so that I do.

Friday, 10 December 2010

Dry skin etc.

The other day I ordered a new Easy-Slide (aid to put on the compressionstocking) from Lymphedemaproducts.com. Before my Thailand-Laos trip, I managed to fix the broken loop of the old one, but already on one of the first days out there the loop simply came off. I could just use the tattered remains, but had brought one of the little slides that comes with the compressionstocking from Medi, and so I've mostly used that, as it was too much hassle with the broken one. I have ordered a size large because I feel the old one probably should have been a tiny bit bigger, that was medium and I use/used size 38-39 in shoes.

The skin on my legs is really dry, I noticed the other night, so the lymphleg got a good glug of Decubal, the greasy – and smelly – cream I sometimes use. I am going to get some oil soon to mix with my juice soon, I ran out shortly before the trip, so it's been a while now, and thus no wonder the skin is dry, especially now with very dry air from heaters, etc. I like to use the Udo's Choise as it supposively is the perfect mix of Omega 3, 6 and 9.

Saturday I went to a Christmas outing with the Qi Gong team, and it was really pleasant. They are good people and I'm happy to have joined the team. On my trip I didn't find the peace and opportunities to practice as much as I had hoped, but I managed to most days do 7-10 minutes standing, and a couple of times the Ba Duan Jin exercises.

On the journey I sometimes used a cast protector I got from the pharmacy, it's just at thin plastic one and it has been leaking a little, but I found that putting a small rubbishbag on the foot first, with a rubber band to keep it in place, and then the cast protector – sometimes with a small towel around the lining of the stocking, inside the protector. It's good to have the option of a shower at other times than getting up and going to bed, espcially in a hot and humid climate.

The four weeks was not quite enough to give me the peace and the feeling of really being away, sitting somewhere else looking at my life at home, a feeling I have experienced in my longer trips years ago. However, it has still been good to be away and have a break from my life at home, I needed it too. Imagine needing a break from ones life, something's wrong then. And there is, obviously.

Tuesday, 30 November 2010

03:34

That was the time when I, after realizing that I couldn't sleep anymore, looked at the clock. Went to bed half past eight yesterday and Sunday night (arrived home Sunday morning) I fell asleep after the first spot in the 7-news.
 

The journey home went OK and better than the outward journey. I wore the old grade three toecap and having boarded the plane I put the toecap outside the compression stocking. I wore my trekkingsandals but took them off most of the time. One of my two pressure sensitive places played up a little and I had to get up to walk and stand now and then but the situation was far better than the outward journey, so that was good. I don't think the leg has gone much bigger from the flight, but I still wrapped it Sunday night. Had to take it off around midnight though.
Update: See my tips and exercises for flying with Lymphedema here.
 
Some winter landscape I came home to! From one extreme to the other as Bangkok was almost 30°C. This morning it was -6°.
 

The last week and a half on the trip I wrapped the leg every night and perhaps I should have done from the start. I don't know if it would have made any difference in the end, but maybe it would.
 

Tomorrow I am going to see my little nephew and nieces, I bought them mini tuktuk's made of Coke cans, I think they are gonna love them.

Thursday, 18 November 2010

Travelling in Laos

Hi all, sorry I have been silent for so long, I am travelling in Southeast Asia, have been since my last post. Life is good, really enjoy being out here again.
I started my journey in Bangkok, spent a couple of days there browsing and eating, have been there before so no sightseeing this time. Went with nighttrain to the Lao border and headed for Vientiane, the capital. Then on to Phonsavan to see the Plain of Jars which I missed when in Lao ten years ago. Very intriquing. The jars were used for burrial. I finished my Lao adventure in wonderful Luang Prabang by the mighty Mekong river, had a gorgeous time. Flew to Chiang Mai in Northern Thailand, didn't like what the city has become, but really only meant to use it as a gateway to the North anyway and to have some jeans made at tailor, will post photo when home - still using film camera, so no uploading. Have spent a lovely time at Cave Lodge in Tham Lot, what a great place! Run by cool Aussie dude.
Staying at The Nest in Chiang Dao at present, the place looks like something out the The Hobbit, very cute.

My leg is doing OK. It is bigger now than before due to the heat and humidity I assume, but perhaps also because I haven't been eating as healthy as when home, and probably should drink even more water than I do. Have wrapped the leg a couple of times and will do it tonight and the next couple of nights to make the compression stocking fit better, it has been a little more difficult to get on than usual and the measurements have gone up.

Flight from Europe to Bangkok was not good, the new stockings and especially the toecaps are very tight, so had some pain on my vulnarable spots and had to get up and walk around every hour or so. Have a plan as of what to do for the trip home, will wear my old toecap which is only grade three whereas the new ones are grade two, and will put it over the stocking, even though it is supposed to be under, which I usually do. The foot and lower leg will probably be a little bigger by the time I get home, but will deal with it then, can wrap it on the first night back and will probably see Physio the first week anyway.

Update: See my tips and exercises for flying with Lymphedema here.

Saturday, 30 October 2010

Yes!

Wonderful! I have been granted bandages for bandaging the entire leg, quite an achievement. It did involve a million phonecalls, faxes, explanations, misunderstandings etc, but everything is sorted now, I have the wrappings – and I am hanging on to them! The prosthegist had never before seen so many materials being paid for by NHS, usually one has to pay for much of it oneself, but my super-hero Physiotherapist has been fantastic and really helped me a lot advocating for my needs.

I've got nine rolls of short stretch bandage, tube gauze, gauze for the toes and cotton wool padding. My loving dad picked it all up for me, very helpful. The second new compression stockings has also arrived, great!

Thursday, 21 October 2010

New stocking – yippiii

My new compression stocking has landed and one more have been ordered so I have two for the trip, wonderful! The sewn-in pads on the sides of the ankle takes up a fair bit of room in the shoe, but they are good, and it looks good with a little shape on my ankle – with the stocking off that is. I can get my foot into at least one of my shoes and the stocking I ordered today will be without the pads, so I have the choise of wearing other shoes – my foot have gotten so fine that I can wear some of my shoes from before Lymphedema – YES!

I still make delicious juice almost every day. It has been a while since I did the big one with celery, cucumber etc., but carrot, beetroot, lemon, ginger – and sometimes an apple – is very good and easy too. Recently it struck me that I have not had a cold since I began juicing nearly eighteen months ago! Besides that, my facial skin is clearer and there fewer lines on my chest than before. The latter is likely to also be because of my magic rosehip oil that I use there and around the eyes instead of eye cream.
I want to try making green juices, representing several of the super-healthy green vegetables. I dream about going on one of the mighty juicemaster Jason Vale's retreats in Turkey where it really is about health with only juices and smoothies as well as plenty of opportunities for meditation, rebounding, yoga, pilates, swimming, walks, lectures etc etc.


I also still do Qi Gong, I have a little program that I try to do most days. It is three small warm-up exercises for the ankles, hips and knees, seven minutes standing, one or more Ba Duan Jian exercises ("lifting the sky", "bow+arrow" etc.) and/or Y ji jin exercises for flow as well as two exercises to open up the hip. Finally I do "the plank" from Pilates for one minute to excercise my arm muscles a little.

Tuesday, 19 October 2010

Flying with Lymphedema

Soon I will be going on a long flight, first from Copenhagen to Vienna and then the big one from Vienna to Bangkok. The latter is almost 10 hours and I'm a little concerned about my lymphleg and how it is going to react. Since I got my Lymphedema I have only flown the short trip to London and that went fine, but this is something else. I am afraid that the edema will go beserk, I will get a blood clot in the leg or something else. Should I tell the flight attendants that I have Lymphedema, in case something happens? My physiotherapist recommends me to put a small bandage on the lower leg on top of the compression stocking and also make sure to do some excercises while flying. Anybody out there has any further tips or calming words?

Update: See my tips and exercises for flying with Lymphedema here.

New: Download a PDF-file with my inflight exercises here.

Sunday, 17 October 2010

Pumpkin soup

Friday I went to the Physio to be bandaged for the last time before the new compression stocking comes. I was hoping it would be in the mail yesterday, but no. Now I try to keep the swelling down myself as best I can until the stocking arrives. During the day I wear a light dressing on top of the stocking and at night a proper bandage.

Yesterday I made a delicious pumpkin soup. I do this every autumn and freezes portions every time so I have for most of winter. Last year I found this recipe which I have now tried a few times, it is really good. I use a Hokkaido pumpkin and a handful of carrots instead of what the recipe states, and I leave out the cream. Also, I don't roast the vegetables nearly as long as in the recipe. It is a soup that takes time to make, but the result is so worth it.

Monday, 11 October 2010

Lymph Yoga

I recently read about a course in my area of yoga especially for Lymphedema patients, it's called Lymphyoga. The instructor is a Lymphedema therapist and from a study in Southern India she has brought back techniques that she uses in the course. Her introduction:

In the Lymphyoga we focus on the breathing in the exercises – the shift between inhalation and exhalation creates an alternating pressure around the central lymphatic system which is hereby discharged and prepared to receive lymph from legs and arms. Deep breathing stimulates the transition between the lymphatic- and veinsystem so that the body can get rid of the excess fluid through the kidneys and urinary tract.Stretch and "muscle pumps" in the exercises stimulate the peripheral lymphatic system to incorporate the lymph and pass it on.We work with standing, sitting and reclining yoga "asanas" and breathing exercises, "Pranayama". 

When back from my upcoming trip to Thailand I think I might do this course, I will of course share my experience here. It would be interesting to hear if anyone else has tried something like this.

Friday, 8 October 2010

At the fitter

Yesterday I went to the fitter to have measurements for the new compression stocking taken. It was wonderful to get the bandages off and I am so pleased to be able to cycle and move freely again – even if only for four or five days before I am to be wrapped up again to be ready for the new stocking. I had been talking with my physiotherapist about ordering the new compression stocking with extra compression (grade 4) in the lower leg (I have 3 now), but in the end she thought it was too risky. We will have to see whether it can hold it anyway, if not I suppose we can order grade four in the lower leg next time. The fitter thought we should just make one stocking before my big trip to Thailand soon, and then see how things are when I get home. I was hoping I would have two for the trip, but it's probably better this way.

I've bought a bathing holster, it's a cover for the leg if you have bandages or a cast on, or a compression stocking and you'd like to have a shower say in the middle of the day or before going out for the evening. Today I was to test it, feeling all excited, as it is a brilliant invention. It seemed promising because the elastic band was good and tight but unfortunately there was some leaks there, so the bandages got a little wet, bummer. Maybe one is meant to fold the frill sort of down inside the cover, making it more waterproof, I will try that next time.


The self wrapping has been going better that I had expected, and it is not as dificult as I thought. Being
able to bandage oneself is a really good option to have, especially for emergencies. Now I just need to practice. The physiotherapist said on Monday, having bandaged myself during the weekend, that I had kept it down really good. That was nice to hear. I too think it went well, at least on the foot and lower leg. Now I just have to learn how to do MLD on myself.

Wednesday, 29 September 2010

Greenpee

Today I have been to the Physio and been bandaged again. I am going again tomorrow morning and Friday morning. Friday afternoon I am going to have my leg measured for a new compression stocking. I am going to try to learn how to bandage myself.
I have started taking B-vitamin as a preparation for my Thailand trip coming up, it is for mosquitoes. When I first started taking them in the spring I was a bit startled when my pee went green – apparently if the body can not absorb it all, then the rest comes out with the urin – and it's green. Very festive!
The compression stocking hasn't been fitting very good lately but I think it's because the treatment has made my leg a little smaller and different than before, and perhaps also due the the stocking being worn. I have worn it every day since early June. It will be exciting with the new one, it is going to have extra compression in the foot and lower leg, and little pockets on the side of the lower ankel for pillots. On the toecap the seam will be placed somewhere else than on the inside of the foot where it is now.
Today and the rest of the week I am off work, a combination of treatment, time off and little work-from-home. I only have a little work to do so today I relaxed, prepared the mixture for my overnight coldrised bread and I have ordered goods from Strawberrynet – including luxurious hair products from Alterna which I am excited to try. It's been a while since I ordered last time, but now they missed me so much that on top of my 7.5%
loyaltybonus and 4% "buy-more-save-more" they gave me a 14% "miss-you" discount, so now was the time to stock up on needed items.
Now I am gonna go have a sit in the garden and read for a bit, the weather is beautyful. Must also eat some of my pickled green tomatoes I made this weekend, soooo delicious!

Monday, 20 September 2010

Looking good

Last night I had a shower and upon drying my hair afterwards I looked at my body in the mirror, and my leg looked really good, even though it was Sunday evening and I haven't had wrappings on since Friday. Actually, my leg looked so fine that if you did not know it, you would not immediately notice that something was wrong. If you knew it, you could see it though. The measurements are still smaller than when we started wrapping, that's impressive, isn't it? I'm so happy with my physiotherapist.

After the shower I put some coconut oil the leg and covered with a towel to let it absorb before going to bed. Although my skin looks nice and not dry, the physiotherapist still thinks I should put lotion on every day to nourish the skin. I believe that the best nourishment comes from within through diet but I guess lotion or oil can do something too, so I will do so, if not every day then maybe a couple of times a week or so.

The physiotherapist thought I should try to stay off my trampoline for a while to see if rebounding actually does me more harm than good. Although I am convinced that jumping is good and it was obvious when I started that the calf went soft, I will do as I'm told.

Tuesday, 14 September 2010

Wrapped again


I am wrapped up again, now the whole leg. It feels rather stiff, but that's how it is, isn't it. It does sit fairly good, although slightly tight on top of the ankle, I hope I can endure having in on till tomorrow where I am seeing the Physio again. I am curious of how it will look when we take it off.I'm tired. Off work tomorrow and had planned to go to a Qi Gong class in the morning before physio but I think I'll stay at home and relax, don't feel like going anyway with the leg all stiff. The not-going will give me plenty of time to indulge in freshly baked roles, I have just made the dough.

Friday, 10 September 2010

Wrapped in marshmallows

Yesterday I had another session of MLD. After drainage my therapist bandaged my leg, but only the lower, to just under the knee. It felt fine, and this morning when I took it off the leg looked good, the edema had gone down a fair bit. The therapist had also placed some little items on top of the forefoot as well as on both sides of the ankle to create a little more shape, and it worked.
On part of the leg I had a new-to-me bandage with small "marshmallows" strewn between two layers of thin fabric. It is to go underneath the usual compression garment. The product is called Mobiderm and I think it is relatively new within Lymphedema treatment, at least not many years old. A quick search on the web suggests that the dressing has shown good results and I think it sounds exciting. Will google more soon. I copied the following from the importer's website:

MOBIDERM have no compression in itself but works by generating a pressure difference between the areas where foam squares are located and the surrounding skin. This stimulates the microcirkulation. The effect is intensified by excercise of the affected area.

Advantages of the use of Mobiderm:
Achieve rapid mobility of subcutaneous tissues

• Improve the suppleness of indurated skin surfaces
• Prepare the tissues to achieve more efficient venolymphatic drainage

Tuesday, 7 September 2010

Skincare from the inside

A while ago at the hospital where I received "treatment" before I found the wonderful lymphedematherapist I see now, I was told by a an American lady from a company producing wrappings, that I had very nice skin. I assume she meant my leg and thereby fine skin for a lymphedemapatient. I haven't had any greater problems than a couple of dry furrows a couple of places on the foot either even though I almost never apply lotion, apart from sometimes on the troublespots on the foot. The other day I realized that part of the success is likely to be connected with my daily oil intake. I add a tablespoon of coldpressed oil in my juice every day and thus coveres a portion of the skin's need for fat. In the "old days", especially in winter, I would splash myself in lotion several times a week, but last winter (with lymphedema) I didn't even do it five times! 
My sister-in-law's mum once said that she took two tablespoons of safflower oil each day and that she didn't use lotion at all, not even moisturizer on her face. That's something, isn't it, rather than to rub oneself with chemicals.
Ideally I would like to only use Udo's Choice as it presumably is the perfect blend of Omega 3, 6 and 9, but it is a little expensive so often I use a good cold pressed, organic rapeseed oil instead, one that is fairly neutral flavourwise. Flaxseed oil is supposed to be really good too, but again, pricey. Some say "yuk" at the thought of "drinking oil", but the truth is that you can't taste, let alone feel the oil in the juice.
I also eat avocado and nuts which both contain good fat. And sardines.

Monday, 6 September 2010

Sunday morning

How wonderful Sunday morning is, especially when the day is as beautiful as today. Septembers sky is so blue...
I long for the time before lymphedema where I could potter around in my PJ sipping coffee, reading the paper and surfing the web as long as I fancied and shower when it suited me. I have to have the compression stocking from I wake up till I go to bed, so now I shower first thing and put the stocking on right away. It's not good to take it on and off more than necessary. Oh well, one adjusts so now the morning routine just starts after the shower and is otherwise business as usual.I find that even relatively small things can send the liquid downwards so when showering I stand most of the time with the leg up on the toilet and thus outside the rays of water – yes, my bathroom is quite small – and when done I put my foot as high up on the wall as I can and rinse with the showerhead from foot to groin 5-10 times to rinse soap off and lead the fluid away from foot and ankle. Currently I have only one stocking, so when rinsing it I stand with my leg up on toilet roll holder. Bizzare scenario, I know...I feel however, as mentioned in another post, that after I have started doing Qi Gong every day the fluid doesn't seem to build up as quickly as before.
Tonight I am going out with my family, we are going to the Tivoli Gardens to have a meal and see a show, looking forward to that. I am going to wear my good dress, it is perhaps the last chance this year, as autumn is approaching. Found out that I could get myself into my beloved golden sneakers if I take the sole out, super!

MLD

On Thursdag I went to my second time with MLD. Oh man, how comfy it is. Very relaxing, I almost fell asleep. I really feel I am in good hands.
As of
measurements of the other night, three of the six was smaller than in the morning, but I can see that has happened before. One would think that they would always be slightly larger in the evening than the morning, and that is often the case, but not always. It shall be interesting to see if all the measuments generally goes down a little when treatment has gone on for a little longer.
The physiotherapist gave me a little task, use a tennis ball to sort of knead/massage the foot with in order to make the foot softer and more flexible as it apparently is a little stiff for the time being. I am going to do that, will buy a tennisball next week. I sit down most of the time on my work, so I can easyly do it under my desk. In one of those "1$-shops" very near the clinic I bought a small vaporizer that I will bring on a trip, I'll be going on soon. The physiotherapist gave me a "hot-weather-tip"; to spray water on the stocking in 

order to cool.

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

Gratitude

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

Quiet

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:
http://www.nwlymphedemacenter.org/vid_mngmntA.php

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.
It
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!
Rebounding


 
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.