This is a post from another forum, that Blush wanted everyone to see “Our Daily Lives with Lymphedema”
Post is called “Need to Vent”
June 20, 2006
stockings. I didnt think they would be as tight as they are. I all ready got teased about them. When I got home I stayed in my room until I had to leave to go to work. I all ready decided that I m not wearing shorts anymore. I know the stockings are to help me. I just hate the unwanted comments and looks. How do you deal with that? I thought I was a strong person. But when I heard this comment "Look at her with those Granny Stockings on." I left that persons sight and broke down crying. I see its going to take me awhile to get use to everything. I am usually happy chatty and right now I am quit. I thank you for reading this, I welcom all relpies. Im glad to have found you all. At least here I know I wont get teased and I know that you all know what Im going thru and how I feel. Thank you.
June 21, 2006
Glad you founf the joint....
I am not sure how to answer your question except for allowing me to make some comments on my feelings regarding comments; Granny Stockings...ahhh heck thats nothing....I have been called much worse in my 38 years, LOL. That said, I guess it all boils down to attitude......
I grew up poor, no money, wore hand me downs from others and my fathers old clothes as well!!! So I have heard it all, the point is...in my life right now here is how the cards are stacked up......
1. I have been happily married to my high school sweetheart for going on 20 years.
2. The absolute center of my life is my daughter whom I love morwe than anything in this world
3. I have successfully lost close to 90 pounds in the last 9 months and feel soo much better than I did previously
4. I have a job that makes me smile
5. For the most part I have a good amount of freinds and many will tell you that they really value my freindship.
Thats the Pro's, the cons.......
1. I have Lymphedema (which I maintain I have controled thru diet and excercise)
2. I cant quite get my goatee to fully grow out giving my an Abe Lincoln look at times!
3. I still have not found a Jeep Wrangler I want yet
So like I said in my world I have it good, I suspect you do as well. As I said on the old forums, sometimes it takes a good swift kick like Lymph to knock the wind out of you to get your priorities correct. Not that I want LE but honestly its made me realize whats the most important in my life....
Ohhh, on top of that I dont give a crud what people think....gimmie a few weeks and I will show you a pic of me out bike riding with my "granny socks" on!!!!
June 21, 2006
Granny stockings well i actally call them my sexy supports
Iwear long skirts and for the first time in years i have got trousers theat go round my legs thanks to those sexy supports
When people stare at me I am a lot larger than life I smile lift the hem of my skirt flash my ankles in those supports and wink with a real naught y smile they usually turn red look very embarassed and move along
Monicaw there strangers that are in and out of your life in the blink of an eye they are ignorant and uninportant
This is your life your space dont let anyone make you feel your not
entitled to have that space .
I know its not as easy doing it as typing it but your worth the effort
It takes a while for even family to understand lymph
a lot of the medical profession still dont understand and do not diagnose it
i did not know what i had from puberty to a diagnosis at 52
The stockings are hard to get on try wearing rubber gloves the ones with the pimples on the fingers
When putting them on dont gather them up like normal stocking put your foot in pull up as far as you can then pull about an inch of stocking over your toe and work it up to the top of the stocking and then again and again till the stocking is up
When taking them off dont just roll them down they can dig into your creases behind knee and ankle and really tighten therepull from the top of the stocking like your pulling them inside outdown the leg work them down
and washing in soap not detergant rinse well try to dry naturally not on heaters or dryers this will help your supports last longer
after a few washes they will soften a little
now go flash your sexy supports smile its your space
if they dont like what they see TOUGH they dont have to look
hugsssssssss Silks xxx
June 21, 2006
Welcome to the Stylish World of Lymphedema Fashion!
I am guessing that you are young. If you were middle-aged, like some of us, no one would mock your "granny stockings." I don't know how I'd handle it if I were young, and trying to look cool. But the fact is, Monica, that many people have some disability or oddity that elicits questions and/or remarks. Look around and you'll notice. Nevertheless, I do emphathize with you, and here is my experiene.
When I started getting therapy a year and a half ago, my therapist wrapped my leg in bandages for several weeks. In between visits, I had to do it myself. It became obvious that I could not hide the fact that something was wrong with my leg! Of course, I put away skirts and wore long pants, but the bandages showed anyhow. Not only coworkers but strangers would ask, "What happened to your leg?" I realized that I now had a "calling"--I had to be a missionary for lymphdema! That is, I had to inform people about it. I developed a 10-second spiel, a 30-second spiel, and those who were really interested got the long version! Occasionally, I have found someone who has a relative or friend with LE, and they are grateful for information and for referrals to this website and some online groups.
Only two summers ago, I too was walking around in shorts or knee-length skirts, as my LE was not pronounced. Then that winter, my leg swelled up more with each bout of infection. As soon as my insurance took effect (I'd just started a new job) I got therapy. But it became clear that I would never look good in shorts again...my leg size reduced, but will never be what it was in summer 2004. So even when I wear a compression stocking, I normally wear pants. A long skirt would do as well. But sometimes I just say, the heck with it, and wear a dress...not a short one, but a mid-calf one. One leg is bigger, but so what? When I was young, we had kids in school who had one leg shrunken from polio....so I am just them in reverse!
Sometimes I still have to wrap up in bandages, and people ask What Happened, and I tell them. (Dang, I ought to get paid, I am becoming such an advocate for LE sufferers!) Keep reading here, and good luck.
June 29, 2006
Monica - I joined this website just so I could respond to you. When someone says something about Granny Stockings - just tell them you are a ballet dancer and the stockings keep your calf muscles limber! You are not required in life to become a lympedema spokesperson - those that want to - fine, but don't feel pressured into doing so.
I just thought you sounded young - and while I am a grandmother's age, but never had kids, I think about how my niece would feel if this happened to her and what I could tell her. At my age, I am beyond being hurt by careless remarks of others - basically I am of the age where I could care RIP what others think or say - and one day far in the future you will feel the same too!
July 19, 2006
Monica, I feel the exact same way as you! I'm 19 years old, and I was diagnosed with primary lyphedema 6 years ago. I have SUCH a hard time dealing with this whole thing. I want to be active in sports, and be able to do the stuff that I used to be able to do when I was younger. I feel that no one understands what I'm going through, and the people that try to at least, still dont. I have some good days, but the days that I cant deal anymore... are the worse. I just need someone to talk too that I can feel is going through the same thing as me. I'm here to help if I can in ANY way.
August 16, 2006
there will be good days and bad days. always.... it only means you are human!!
I am 22. i got diagnosed 2 and a half years ago. Sometimes i love explaining LE to people and other day i feel like making up a really cool story! i do both!!
When i first got diagnosed, i totally thought i had something that older people got (no offence to anyone) and i was the only youngster in the world with it, i was freaking out, i had no self confidence, i was up and down, and got very emotional. my family are very helpful and all my friends are very interested. I am lucky.
I know this sounds horrible to compare but i dont get as angry about having LE when i think of people who have it in more than one limb or people who dont even have a leg. i know that sounds a bit wierd and selfish but it is reality. Everyone needs help weather they have any condition or not.
As it turns out, i won a photo shoot at a portrait company. i got through the whole shoot without the photographer even knowing about my leg (to my knowledge anyway) and to top it off i have been use din all of there lastest advertising. This is not a good sign for me in the fact that it is very embarrassing but i must admit that being a model ffor this company and having LE which is such a mental and physical thing is just amazing to me! I dont even know if any of this is making sense so i apologise if it doesnt!!
some day i wont even consider wearing a skirt or short and other days i dont care. I went to my friends party and got all dressed up and everyone said how much they loved my outfit, i was wearing a dress. i was shocked and honestly think no one really noticed my leg that night,
spoil yourself, buy a new top, lash out of the most comfy shoes you can find, buy new jewelery, get your hair done. coz its ok to do that. it makes some people feel better.
also i planned on travelling by myself around the world. but then i got diagnosed. everyone said oh oooo dunno about that, not a good idea, do this, that blah blah. i do listen to people and i love getting advice. so well. im actually typing this from the other side of the world. well my world anyway!! it just goes to show that you can do anything you want and its whats inside that count.
also... sorry if im boring you, after i got diagnosed i spoke to my social worker about starting a young people group. well that was 2 years ago and now there is one. and it is getting to a great point where lots of young people are meeting. i also plan to get tyoung people connected form all ofver the world and create a special site through this one. we have money that i raised, and put it towards making welcoming packs for new members to the clinic. every little helps!! i plan on going full steam ahead with it all when i get home.
well sorry i used your post to completely vent a little and tell everyone about myself but i feel better now!
which does remind me that amongst all this travelling i should do a massage tonight!!
August 16, 2006
Are you sure you are only 22? You have such wisdom and insight. I think you are an inspiration to everyone. I know I feel better about myself and the big fat legs that God has given to me after reading about your upbeat attitude. Do something nice for yourself because you did something nice for all of us through your posting. Glad to know you Blush!