What will I Wear Today?

Lymphedema

Lymphedema (Photo credit: Jacob & Kiki Hantla) This young man has lymphedema of the lower leg.

Having Lymphoedema changes  aspects of your life, many of which I took for granted, but they are changes you need to make to keep the lymphoedema manageable. Gone are my tight-fitting jeans and trousers, replaced by skirts, dresses or loose pants and for sure no minis!! I loved my jeans, I still have them in the wardrobe but I rarely wear them and if I do they need to be stretch! Once upon a time you would never see a dress or skirt on me but now they are my uniform. I also have redundant pairs of shoes that no longer fit, trying to put shoes over thick stockings and sometimes an enlarged foot is a nightmare, hence shoes a size bigger.

Compression garments worn by a lady with Lymphoedema in both arms

I am sure those of you with Lymphoedema of the arm have had some agonizing moments trying to find suitable things to wear. The favorite shirt or jumper needs to have a sleeve cut off to get it on! Who would have thought clothes would become such a problem. Men and women with primary Lymphoedema I am sure have their own problems to deal with. Just getting dressed in the morning can take much longer than it used to, out come the rubber gloves to squeeze into compression garments and hope it is a day they do not roll down or misbehave!!! Some people may think I am a little strange when the rubber gloves get pulled out of the handbag to rearrange wayward garments!

Lymphoedema is a cruel health issue in that it distorts and swells areas of the body, no diet will help and exercise will not “tone up” the offending area. The only way of managing this problem is with Lymphatic massage, light exercise, complex bandaging and compression garments etc however the limb will never return to its “normal” size, in fact over time it will get bigger and heavier, especially if neglected. Lymphoedema is a cruel twist of fate whether primary or secondary, whether you are male or female it is a health issue that makes life very difficult. No tablet can make it better, no treatment can make it go away, when you have lymphoedema you have it for ever.

I would love to hear stories from others with Lympoedema and I am happy for you to use comments to do this. Sharing helps others to understand.

9 thoughts on “What will I Wear Today?

  1. How true — I can no longer wear those attractive dresses that I used to wear to work every day. How could I explain the two different legs and feet. Even long skirts are a problem as they don’t cover the ankle or foot. So I am resigned to loose fitting jeans and pants. Buying shoes is no picnic either!
    On another subject, I too am scheduled for lymph node transplant surgery on 4/12. I had my consult on 2/28 and I loved the surgeon. He could not guarantee any results but did give me a 60% chance of success. If after six months the transplant is shown to be successful, he can do liposuction to clear out the fat deposits and scar tissue so that I may have two legs that just about match.
    I am looking forward to your blog and to read how your surgery goes. I am thinking and praying for you! I love your blog. You speak so elegantly for all of us fellow victims of this ugly sneaky condition.

    • Oh Bridget how exciting.. yes same for me no guarantees but that is ok as all new. Where are your lymph nodes coming from and where to? Mine are Neck to the knee.. I guess we are the front runners and if this gives hope in the future for others then that is good.. Stll trying to book this MRI the doctor needs .. it is all so new they have no protocol for this type of MRI only for the arm surgery that they have already done a couple of. I want to try to find the results of these but due to confidentiality little is said!!! will have to try to connect with the ladies themselves!!! as you say a very Sneaky condition!

  2. Hello there! This post couldn’t be written any better! Reading through this post reminds me of my old room mate! He always kept chatting about this. I will forward this post to him. Pretty sure he will have a good read. Thank you for sharing!

  3. This is so very true. It could not be written any better. All I wear is dresses now. One thing that I have not done yet and pray that I will not if it gets worse is to hide it. I still wear my dresses above the knee. I just bought 5 today for the summer. I do get a lot of questions and I feel okay to talk about it. I think it draws people to me. I always smile and if I am not everyone wants to know what is wrong. Others that I have known are now telling me about their loved one or themselves and it’s not lymphedema, but we all have challenges in life. They are just different. I want everyone to know. One day it may be someone that has the power to do something to make it better for us all. Helen you are so beautiful.

    • Thank you Sheila. Starting the FB page gives me the opportunity to share older posts. Clothes abd shoes is a big thing for everyone… I wear my skirts and dresses just below the knee before LE you would never see me in a skirt or dress!! It sort if changes who you are a bit!!! Loving this Lymphedema community!! 😃😃

  4. I completely agree with everything been said. I use to hide behind baggy trousers and wouldn’t wear a dress for ages! To me and anyone else with this condition it is ver noticeable to yourself but I have now found it’s noticeable to other people. I have managed to get my Lymphoedema to a Point wear I can wear skinny jeans (still slightly stretch) and dresses and not worry what everyone else thinks! There is hope and I hope people put the hard work in and see signs at the end of it!
    I have been hurt by rejection from surgery but I won’t give up hope and I am going I look into the transplants!

    • There is always hope.. I think at last I have come to terms with having Lymphedema… My lower leg is great since surgery but knee and lower thigh swell but I can deal with that and look forward to winter when I can put some boots on!! It is hard work but worth it to stay on top of any swelling.. I also love to wear compression sports tights I get them small so they give good compression and I get to feel “normal” … And if one knee is bigger it does not matter !!😃😃

      • I would love to get some of the names of the doctors involved with these surgeries. My daughter is 16 years old and has primary lymphedema since 12. She was diagnosed last year over the summer when it became extremely noticeable. Her right foot and ankle always appeared swollen later in the day for a few years and then last year when we took our annual road trip to Disney from NJ it was all to surreal. It was red and hot to the touch. The swelling was no longer just her foot and ankle, the swelling was up to her calf. We need to find a doctor that can monitor her condition and see what other options are out there. The summer is almost here and finding the right clothes and shoes is extremely difficult on her. If anyone has suggestions for shoes/clothing and compression garments would greatly be appreciated if you can mention them on this thread. Thank you and god bless you all!

        • Hi Fanny … If you use the search button you will find lots of info in this blog.. One of the best things i have found especially when the weather is hot is to find a swimming pool and walk up and down in the water as it acts as a natural compression… There are videos on this under aquatic exercise or search videos.. Where a bouts do you live… It would be good to find your daughter a lymphedema clinic or Doctor who could look after her.. For treatment, garments etc as important to get on to this straight away so that it can be controlled.. Are you on facebook as there are quite a few groups on there where you can connect with others and find lots of information… If you search online you should be able to find what is available in your area… Please let me know where you live and i will see if i can connect you with someone … Or someone else could see this … Helen

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