Thursday, 14 June 2012

How far will we go?

In the beginning of my Lymphedema life I was very keen to experiment with various things to find a Lymphedema cure. I felt certain that I could cure myself and make it go away. I googled high and low and I tried many things. Wheatgrass juice, Epsom salt baths, Chlorella, green clay, herbs, reflexology etc. Gradually I stopped and a little while ago I suddenly realized it seemed I had given up and accepted that this is what it's going to be like for the rest of my life. I guess part of it is true. I guess I have somehow accepted that this is my life now. However, even though I doubt a Lymphedema cure as such exists, I do think it is possible to make Lymphedema a whole lot better and control it. I know two ladies who does. One of them, K, claims to have healed herself completely by cleansing her body and mind. I don't feel certain it was really Lymphedema she had though. The other lady, W, keeps her Lymphedema at bay so much so she can wear skinny jeans and fancy boots, even more than Sophisticated Tina. She does it by eating a very restricted diet. She does wear a compression stocking though. K doesn't. This leads me to a dilemma, something that I have been wanting to write about for a long time: How far will we go? How much are we willing to "pay" for that slim leg?
Personally I don't think it would be worth it for me giving up all those lovely foods that I cherish, to have that slim leg if I would have to wear the compression stocking anyway. But what if I could get rid of the stocking? I don't know. I am thinking there has got to be a balance. What's the point having a slim leg if obtaining it makes me miserable? I guess we have all got to find our balance. What are your thoughts on this?

Comments are ticking in after I announced my Give-away and I appreciate it. Keep 'em coming :-) Your comments mean a lot to me and they are for everyone to benefit from. I feel that with this blog I shout "hello - is anybody there?" into some dark, unknown Lymphedema emptyness and so when you guys write comments to my posts I feel I'm not alone with this akward condition. Thank you.

PS: Bad idea looking for naugthy cake pictures half hour before lunch :-/

36 comments:

  1. I've had lymphedema for about three years. I was properly diagnosed about a year after developing it, and I would say it took another year and a half after that before I shook off some really persistent denial and began to accept and adapt.

    For me personally, the prospect of trying to cure myself sounds too emotionally taxing. Now that I have a solid treatment routine that I can live with, coping with lymphedema is finally starting to take up less of my energy. I don't want to get into a mode where I'm always striving to change things and wondering what I could be doing better.

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    1. Hi Unknown, thanks for writing :-)
      It really does take a good year or more to somewhat come to terms with this. Personally I don't think I was really in denial, I just went into hiding mode for several months, grieving, feeling embarrassed. I still hide a little. Even though I have come a long way and much of the time I feel like my old bubbly self things are definitely different from before when it comes to being social and looking for a partner.
      I am with you as to finding a routine one can live with as looking and hoping for a self cure can be so draining. Perhaps one could do it for a limited time but not for good. Life is too short. I guess I am where you are, although the dream is still there.
      Liz

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  2. Nice post, thanks.

    I think 'balance' is the important word here. I decided last year that I would not let my right leg rule the rest of me; I am a person with one swollen leg not a swollen leg with a person attached! That said, I do pay more attention to diet than I did before (eg cooking from scratch with 'real' ingredients, avoiding added salt, cutting down alcohol). But I know I could not sustain a really strict diet and if by some miracle I could keep it up, then I would no longer be me. I have wondered though about going on one of these 2-week de-tox retreat type breaks to see if it makes any difference. I'd be interested to know if anyone has done that.

    Anyway, for me it has been important to try to identify what makes the leg worse, not just in terms of diet but types of exercise and other activities, certain shoes, etc. It doesn't mean I will no longer eat/do/wear these things but at least I can make an informed decision and then take the consequences. It also helps me to feel I do have some level of control over it.

    The stocking is not the main issue for me - most of the time I don't mind it. It's the size calf and the ugliness of my ankle that bother me most.

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    1. Hello Hutch,
      I like your decision about being a person with a swollen leg instead of the opposite.
      I too dream of going on one of those retreats, I have actually found one in Turkey that I saw some programs from a few years back - people with various embarrassing ilnesses. I feel sure that there would be improvement.
      Good point, knowing what makes the leg worse is knowing how to control it.
      Liz

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    2. I've fantasized about how my leg is and isn't part of me - that it has its own name and own personality - but we have to live together so we have to manage to negotiate somehow :)

      But it is all balance. I think the idea of knowing what affects it for good and for bad is important; then you can make your decisions and choose well, if I travel this day maybe I have to wrap at night, and so on. I'm keeping a log right now of everything I think might affect the leg - temperatures, caffeine intake, and so on - and it's pretty interesting. Plus it turns coping with the leg into kind of an interesting science project, which helps me be less emotional about it all!

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    3. Liz, do you still have the details of the place in Turkey? I'd be interested to look into it. When I tried to do my own research I didn't really know what I was googling for, and admittedly didn't try very hard...

      Elaine, re the leg with its own personality, I sometimes feel sorry for my good leg being the well behaved one that gets no attention. Like the stoic sibling of a chronically sick child. ha

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    4. Hi Hutch,
      I kept the link for the detox place. I thought it was in Turkey but apparently it is in Spain or Portugal. This is definitely the place because it mentions the Israily (?) Yair guy (who seems to have a clinic in London) who I remember as very interesting in the TV-shows.
      http://www.detox-international.com/index.html

      I also kept a link for a place in Turkey:
      http://www.thelifeco.com/bodrumdetoksmerkezi.aspx

      Also, the "Juicemaster" Jason Vale has retreats in a gorgeous place in Turkey, look him up or click on the picture overhere to the right under "Dear Santa".

      Oh man, would I like to go on one of these retreats. I am 100% sure I would see some sort of improvement. I imagine these retreats being like conditioner for the soul too.

      Liz

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    5. Hi Elaine,
      I guess that when a bodypart suddenly changes dramatically it is natural for us to distance ourselves from it. But it is still a part of us. Perhaps I distanced myself a little in the beginning but then I turned loving towards my leg instead. It is my leg, my poor leg, must be nice to it :-) Also, in the beginning I hated the stocking - still do - but it does help me, so part of me feels I should be glad that I have this option.
      Liz

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    6. Haha, I'm still kind of annoyed at my leg for doing what it's done so it's hard to feel that I have to be nice to it - but I suppose it's more like dealing with one of those relatives you always shake your head over yet still go to see. (Maybe?)

      As for the stocking, I think of it a bit like armor - it's keeping things away from my leg at the same time it's keeping my leg in line. I guess it's nicer to view one's self as a warrior than somebody things have just happened to.

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    7. Hi Elaine,
      I guess we all look at our situation differently. In the beginning I thought of it as my leg having done something, then as something that happened to me and feeling like a victim/sorry for myself but now "just" as something that happened to me, something that wasn't my fault and that in theory could happen to anyone.
      Warrior is definitely better than victim :-)
      Liz

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  3. I'm still hoping it will go away, and I'll find my way out of this bubble of denial, or out of my compression stockings, and whichever way it goes, I'll most likely survive. I am curious, though, what kind of diet restrictions east lymphedema that much? (As I walk off for the nearest vat of chocolate pudding.)

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    1. Hi Person :-)
      The two ladies I mention both eat "real" food - vegetables, fruit (though only little), beans, lentils, sprouts etc. No sugar, no salt, no dairy. No processed foods. I don't think they have pasta or bread either. The K-lady also took wheatgrass, spirulina and other things. I am not sure any of them eats meat.
      Mmmm, chocolate pudding - I'm off to get a big slice of apple pie ;-)

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  4. Hi, your blog has described extactly how I feel trying to come to terms with my left leg primary lymphoedema which only came up three weeks after my wedding in October. It's great to read, keep it up :-)

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    1. Hi Kelly,
      it is good to know we are not alone and that others are going though the same things as this is such a "secret" condition.
      I am so sorry to hear yours started only three weeks after your wedding, you must have been devastated. I hope you are slowly coming to terms with it, have faith! I found that after the first year, perhaps even before that, I was on my way back to myself, although I feel I have had to redefine myself in some respects, but I recognize myself now.
      Thank you for your kind words :-)
      Liz

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  5. Hi, this blog is great! I have primary Lymphedema in both legs, have had it since I was 14 and am now 32. Thanks for all your tips and resources!

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    1. Hi Bea, thanks for your kind words, and for writing :-)
      Liz

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  6. This discussion is great, the kind of thing I've really been searching for. I mean, no matter how wonderful therapists are, they don't have this problem and so they can't really understand the emotions and everything involved!

    I'm still searching for the balance in terms of care and slowly, slowly getting myself out of the situation where the lymphedema was taking up so much of my energy. Still working out what really helps and what doesn't. Right now I'm keeping a log of how my leg is each day and all the things that might be affecting it, like caffeine and alcohol intake, hours of sleep, heat and so on, then changing the variables - almost like a science experiment, which helps somehow. No great discoveries yet.

    The comment about knowing good and bad options so you can make an intelligent choice really helps, as does the idea about occasionally making a bad choice if you're prepared to deal with it later. In the end, it's really what brings us the best life. Thanks for setting up this forum!

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    1. Hi Elaine

      I also have a 'leg diary'. Not quite in so much detail as it sounds like you have, but I measure the widest part of my calf each morning and night for reference. I note exercise, alcohol and anything out of the normal routine that might affect it for good or bad. Extra long day in the office, extra lazy day at home with foot up reading my book... Stuff like that. I should probably note down caffeine as well but I don't think I want to face up to that one yet :)

      You know, we should set up some standard variables to measure and get together and publish a paper. Nobel Prize here we come!

      As for informed (bad) choices - as an example, last Friday I simply had to go to the pub to support England (I live in Sweden) and so drank beer (bad for leg) and stood all night (even worse for leg) and yes it was enormous when I got home. But I don't beat myself up about the fact I've made it worse, I just smacked it down the next day & night with bandaging and it went back to its usual size.

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    2. Hi Elaine,
      it does take a long time to figure out what works and what doesn't as it is often small things that we never realized could have an impact.
      It's a great idea keeping a log of what you eat and do too detect what makes a difference. Do keep us posted in case you find something important.
      Thanks for reading my blog and contributing with comments, much appreciated.
      Liz

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    3. Yep Hutch, that's exactly it. Figuring out what's bad and what's good, and keeping it in line. Love the idea of "smacking it down" to size again, as if it was a naughty child!

      I haven't gotten the tape measure but think I might - my measures (ie, fingers around knee) are much too subjective to make sense.

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  7. Hi Elizabeth, I'm attempting a comment again. I agree with your post about finding a balance with what we can live with. I'm VAIN; so much so that fitting into normal clothes is worth sacrafice.

    But, really who knows that my diet and lifestyle are what keep my lymphedema from getting worse? I may have a moderate form of it that responds well to the compression stocking and nothing to do with results from diet. I think honestly that is it.

    Don't give up hope; someday there may be a cure. Here is an interesting question my therapist asked; "what does lymphedema keep me from doing?" Once you acknowledge that you may realize or find information that free you do the things you had given up.

    Another interesting question is what people think triggered their lymphedema; everyone seems to have a different trigger.

    Thank you Elizabeth. I thought the pastry was beautiful! I work in a gourmet store and love to see the food people buy and talk about how to make different dishes. I live vicariously through them.

    Wendy

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    1. Hi Wendy, yay - it worked!
      I guess you are right, we can't know if your diet and lifestyle is what keeps your leg so good. I do think it has in impact though, but I guess we all have different forms of Lymphedema and reacts differently to diet, stockings, treatment, climate etc.
      Good point, what does Lymphedema keep us from doing? I can do most things, it is more the really not so important things such as going to the beach or wearing sandals. I still have my leg, I can still walk, cycle etc. I still have my good health, my life.
      Perhaps I should set up something where readers can put down what triggered their Lymphedema. Especially with Primary most have a different trigger. Thanks :-)
      Liz

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    2. Actually, being on the beach and wearing sandals are two of the toughest things for me to accept - I love them both. Whereas since I've never been much of a shoe person that particular thing hasn't bugged me that much. Everyone's different - and that's why a forum like this is so much fun, and so useful.

      I'm actually wearing sandals around the neighborhood but I wear a low sock (peds style) on the foot with lymphedema to protect it - and my one free leg REALLY savors the feeling! I don't wear them to work anymore, which is too bad; don't want to risk somebody stepping on my foot on the crowded train, which hurt like hell even before I had issues!

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    3. Hi Elaine,
      I too really miss wearing sandals or being able to feel the sand or grass under my bare feet :-/ I imagine your good leg must be having a party :-)
      Liz

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  8. I'm still hoping for a cure in the future, or at least something that will lessen lymphadema greatly. Dr. Stanley Rockson at Stanford University in California is doing tremendous research and hopes there will be a cure. I wear my full length compression stocking to work,five days a week. Now that it's summer, I usually can only muster wearing the knee high. On the weekends I pretend that I'm normal and don't wear my stocking at all. Usually the swelling starts back up by Sunday afternoon. I do self massage pretty regularly and try to get manual lymph drainage by a therapist once a month, but it's expensive. Heat and humidity seem to affect it the most. I haven't figured out if alcohol or food make a difference. Although I swear that my monthy hormonal changes cause more swelling.

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    1. Hi Cheryl, thanks for writing :-)
      There may very well be a cure in the future. I think certain doctors have come a long way so who knows what the futures holds for us. Will look into Dr. Rockson.
      Apparently a Doctor Isao Koshima in Japan has good results with his procedure too. I am so jealous that you can go without the stocking for a day or two!!! It's great for you, I wish I could do that, but even a few minutes without mine the fluid builds up so I wear my thigh-high from I get up till I go to bed. The nurse at the hospital where I used to go said that hormonal system affects the lymphatic system too so it makes sense what you are saying. I suspect certain types of alcoholic drinks affects mine, but not all. Also sitting, but that's old news.
      Liz

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    2. My therapist just said that hormone changes, especially the change, can trigger primary in some people. I noticed a definite change in my cycles around the time I got lymphedema, so they may well be right.

      Hmm, I'll have to look up this Japanese guy! :)

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    3. Hi Elaine,
      I too have heard that hormones can influence Lymphedema but I think it is still undiscovered land, as so much about this condition is. Interesting that you notice a difference.
      I am in touch with a man who is having surgery next month by doctors using the Japanese docs methods, I am very excited about it!

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    4. Let us know about the man having the surgery! An orthopedist I see for the lymphedema did mention surgery to me - I don't know if it's by Koshima's methods or not. He also admitted that at this point nobody knows if it really lasts...I don't know, maybe if I could get ten lymphedema-free years at this point I'd be willing to do it, just to get ten more years of travel to exotic places. But I'm sure insurance wouldn't cover it and don't even want to think of the cost...

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    5. Hi Elaine, I will definitely keep you posted! I agree, there is much uncertainty about all this. While I think this man is getting his operation quite cheap I think the standard price is quite steep. I know Italian Dr. Campisis charges a lot. However, I think this mans procedure is somehow more simple than Campisis, but I don't know a whole lot about it.
      How wonderful it would be to hop around in a summerdress and sandals, or swim in the sea again. Feeling the grass or sand under my feet... Overhere Summer is at its very best this week and I can't help feeling a little sad when looking at all the women looking so carefree and beautyful in bare legs and a feminine dress.
      Liz

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  9. I'm so happy to have found this blog. I've had primary lymphedema in my right leg since 2000, with many ups and downs along the way. When I was first diagnosed I had many other health problems as well, (rheumatoid arthritis, fibromyalgia, sky high cholesterol, etc)so it didn't bother me as much emotionally. As far as I was concerned, it didn't hurt, it didn't do any damage, so I could deal with it.

    I cleaned up my diet as a way to help my efforts to control my other conditions, and to my surprise the lymphedema improved as well. I too resisted the idea of giving up the foods that I loved, but the fact is the cleaner and better I eat, the better I feel. I have more energy, I'm less lethargic, my mind works better, my moods improved, etc.

    I think the key is baby steps. If I just woke up one day and said, "Ok, I'm going to start depriving myself now," it never would have lasted. I started by cutting way back on things like high fructose corn syrup, and processed foods, then started cutting back on red meats, etc. Now I eat a mostly vegetarian diet, but it took two years to get to that point. Baby steps are easier to deal with, and they also show you pretty quickly which foods help and which aggravate.

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  10. Hi Michelle, thanks for writing :-)
    wow, well done, it's great that you have cleaned up your diet and that you really notice a difference! I think you are right about baby steps. Creating good habits, slowly replacing them with the bad. I feel encouraged now and will start working on my salt habit from today :-) My diet is not too bad but there is definitely room for improvement.
    Liz

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  11. I just found your blog and I want to thank you for it. I feel A's though I just want to give up. I was 20 years old and 4 months pregnant wrn my right leg started to swell. I was misdiagnosed for about a year before I found a physician that knew it was lymphedema. They say it was caused by my daughter's position in my belly. She was pushing against the lymphnodes in my groin area, which caused them to collapse and quit working. I was told I wouldn't be able to have children when I was 18, so having my little miracle has helped me overcome all the emotional stress from it. But I still struggle with it sometimes.

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    1. Dear Lauren,
      don't give up! I can't see how long you have had it for but for me I can say that things are much different now than when it first started three and a half years ago. It takes a while to accept things and learn how to handle them, but it will get better. I am warm inside when you talk about your little miracle and how she has helped you cope. Keep your chin up :-)
      Warm regards

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  12. Hello,

    I realise this thread is rather old but I stumbled upon your blog and I just had to say hello. It's so lovely to see there are others who actually understand how it feels to live with this, and that it is so much more than just a 'swollen limb.'

    I was diagnosed with primary Lymphoedema in my left leg when I was 14 (Im now 27) and in the past 3 years I have seen dramatic improvements, from the swelling being so bad I used a crutch to the point where my leg is sometimes barely noticeable. I did it by becoming quite tough on myself - I walk as much as I can, eat only clean fresh foods, no alcohol, cigarettes or junk food. But the other big help has been hula hooping! I do 20 mins most days and it's fantastic for moving the toxins about! I call it my medicine as it has been so helpful in getting my leg down to a normal size. I really recommend it.
    Of course I have treat days where I don't hoop, eat junk and dance all night (and I'll suffer the next day!) but most of the time im pretty strict with maintaining a healthy lifestyle.

    My triggers are heat, long periods of standing and strangely, pollution/city air. Im very lucky to now live by the sea and the clean air seems to have done wonders.

    So, in answer to how much are we willing to pay for a slim leg - for me it's quite a lot! But Im no longer tired and ill all the time and I now am the proud owner of a pair of skinny jeans! So I'll keep at it... but once a week I'll have that delicious cake!

    Best wishes, Shula

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    1. Hi Shula,
      thanks for writing and for introducing yourself :-)
      You sure have seen dramatic improvements, I am stunned of how far you have come! Some stay forever where you once were! It is admirable that you have managed to do so much and keep it down to the level where you can wear skinny jeans, wow! No skinny jeans for me. I don't smoke, don't drink much and eat relatively healthy although there is room for improvement. Thanks a lot for the hoola tip, I'd like to try that. It sounds fun too :-) What you are saying about air pollution is very interesting. I guess it makes sense that if avoiding pullution our body with cigarettes, junkfood etc. keeps the swelling down so does fresh, clean air instead of pollutied air.
      Thanks again for writing, and for reading my blog - looking forward to more comments :-)
      Liz

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