Need to Vent

[patoco]

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.
_________________
Monie

REPLIES:

June 21, 2006

Hi Monie-

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!!!!

Memphis

-------

June 21, 2006

Hi Monicaw

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

Monica,

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.

Marigold

-------

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!

Maureen Kennedy

-----------

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.
_________________
Vanessa

--------------

August 16, 2006

hey babes,

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!!

take care

blush xoxo

---------

August 16, 2006

Hi Blush,

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!

Joanne Johnson

[raingoddess 2]

hi everyone! first of all, i have found that venting is very healthy, coarse i usually end up in hysterics so maybe the forum would be a better place fo me, huh? blush, who seems to be about closest to my age i love your upbeatness, which i try to have as much as possible. thank you for that post - i agree that it helped!

and as for stockings, i wore them through my grade school years up to 7th grade and wrapped at night. i hated them, gym class was horrendous and i mean it still is, but it didnt help that i would fall flat on my face all the time and was picked last. i felt so stupid all the time and ugly, ooo i could have killed my gym teacher for singling me out all the time and asking in front of everyone if she would have to call the nurse today! the kids in my class didn't help. i had 4 or 5 friends (ok people that didn't call me humiliating names but didn't invite me over to bdays etc.) but the rest of them would hardly even look me in the face - needless to say, i kept my head down and didnt say much to anyone during those years and crawled into a shell. i defended other people and held doors for kids holding projects or something, i never said anything cruel. i felt like God shut a door on me.

even in 7th and 8th when i started wearing compression bandages during the day,everyday ( they keep my legs looking and feeling so much better, stockings are strictly for dressing up when i am wearing a skirt or something now) and i had known everyone since preschool - i went to a private school pre - 8th - i still was treated like a sore thumb - but i kept me head higher now and explained more about my legs - when i used to get the "what the hell is wrong with you", i would walk away with a "there is nothing wrong with me but maybe you should see a doctor about your self esteem " proceeding to cry my eyes out in the nearest bathroom.

high school is better, i still never wear shorts except in gym class and explain to each and every person that asks about my legs, giving notes to gym teachers what i can and can't do. except now i have tons of friends that stick by me and have made up a story for the rude people. its not believable but if someone asks and is not genuine or says words like freak, they just get told i had a tragic croquet accident when i was young! yeah its kinda stupid but i need the humor most days. i too can enjoy informing people about le, but a absurd story is sometimes the better option. coarse now i get asked if i was really in a tragic croquet accident and how that could possibly lead to my legs being how they are - but hey, at least i have less jerks to deal with! when we get to the swim unit i end up bawling after, and my friends, goofy as they are - help it all seem trivial.

sorry about the ranting, it just seemed to be a good place and if i didnt i would be sobbing into my pillow about another year of gym and mean people and my stupid, fat ugly legs. really sorry it was so long, but i will probably have another rant after school starts - urgh, i hate being so negative, i really am a fun person most days, i am just having an off one

[blush]

raingoddess,
hey babe,
wow. that was a good rant!! Do u feel better now?? im sure it helped a little atleast!
as long as you understand you're not the only person who goes through this. it is very frustrating isnt it. Im travelling at the moment and im totally trying to keep ontop of eveythin, even something as simple as making sure i have my stocking cleaned beomces a chore. i feel so lazy. I keep putting off my massages, but ive gotten good the last couple of days and play my ipod while i do my exercises. though my singing isnt too bad it helps the massage time go quicker.

i didnt have LE when i was at school, but i can understand what your goign through. you said high school is better. Materialistic people learn lessons later in life so next time just grin, coz u understand the important things inlife more than them.
ive met a whole bunch of new friends since i came overseas and ive only told one of them about my leg so far. apart form a whole bus load on a tour! im building up the courage to tell some of the others. but it is hard! i suppose i should take my own advice sometimes!!

anyway keep up the venting, we all know what its like..
take care
blush

[ro81nm]

I was diagnosed with arm lymphedema this March and am still upset about it. As if breast cancer wasn't enough to deal with at 22 years old! I get asked all the time what happened to my arm and it's not fun. I sometimes give funny answers like "freak trapeze accident" or something else ridiculous like that. I think that you need to make life and your ailments somewhat fun or it'll get the best of you. You'd be surprised how far a positive attitude can get you!

I tried to get the big companies like Jobst to make nicer sleeves, but that didn't work out so I have started a company that will make compression sleeves for arm lymphedema more comfortable and fashionable. If any of you have arm lymphedema, please check out my site and give me some feedback. I'm really trying to make this experience a little more tolerable.

www.lymphedivas.com

Robin

[blush]

robin,
that is soo cool what u have done.
i totally agree that we need to have fun and make the most of it.
u sound very brave and amazing person!!

take care.. write back..
blush

[ro81nm]

Thanks, I'm glad you liked the site. Keep checking it, it's going to get redone soon to include a store where you can buy our sleeves.

I was at a BC convention a few weeks ago and at the seminar for lymphedema they told us that singing is actually good to get your lymph fluids flowing again. It's like the deep breathing activities they have you do as part of the massage.

So keep singing!

Take care,
Robin
www.lymphedivas.com

[dgeyer]

Hey all,
I've just read through all your messages....and just experienced a whole stack of emotions....wow is all i can say to all of u!

I'm 22, and was diagnosed with lymphoedema 2 years ago (right leg...primary). i'm also a medical student, so it has added another dimention there!

Monica....i haven't received any comments about my leg....but that is because i hide it so well! Long skirts that drag the ground, bootleg pants (lots of pants) and closed ugly shoes...that are covered by pants! I always have holes in my jeans as they drag the ground to ensure that they still cover my shoes when i sit down! lol! it sounds so silly when i write it down!

it do focus on other aspects of looks....i;m obsessed with earrings...i make em in all shapes, colours and sizes...so most people notice the earrings before anything else!

i have a pretty supportive family and circle of friends.....and the fact that half my friends are medical...it means that they are more empathetic!
it also means that there will be a small...but great....group of young doctors that will not be lymphoedema deniers...i'm teaching them all the ropes!

i miss my sports (soccer, tennis....) but i swim a couple of times a week!

swimming and wearing garments are the only way i can control my LE

i swim in a pool at a gym...so am less worried about showing my legs to the world....but beach scenario is way scarier!

however for those with swim issues....i found these pants that u can wear in the water...like what the olympic swimmers wear to go heaps faster....and i wear those in the water when around friends or at beach
these 'sexy' lycra pants do many things
a. cover my LE - still a bit dodgily but
b. cover my pasty white legs that never see the sun (its a viscous cycle)
c. cover hairly legs (can't wax, and refuse to shave as really hairy legs is not exciting concept, espec when almost no one sees them anyway)
d. protect legs from sand and shells at beach that could lead to infections (oh yeah, i have these bootys for my feet too)
e. protect my legs and feet from hot sand!

That may all sound like such an effort...which it is...but without it i would not go at all...thus worth it!

Hope that helps someone...sorry for long rant!

Also, i am interested in Blush's comments about travelling
any tips???
i'm due to travel overseas shortly...
i havent' travelled with or without LE, but am freaking out at the job ahead of me!

thanks for listening ppls

cheers
Debbie

[ro81nm]

Make sure you wear compression stockings when on an airplane. The decreased cabin pressure can cause extra swelling and you don't want that to happen.

I don't know if you've seen them yet, but I think Juzo has new "fashionable" leg stockings. They are patterned. They are supposed to look more like tights, which are very in right now.

Good luck,
Robin
www.lymphedivas.com

[blubrdfrend]

I have been ask some real dummers. I think the best is " Doesn't that hurt". I want to say " You bet your $%^@ it hurts". I usually tell them a big lie and say that I am used to it. I always felt hurt when I was younger and strangers stopped me and ask me questions. Now I explain Lymphedema to them in hopes that they will pass the information on to someone who needs help. One of the good things about growing older is that your friends begin having problems too. When some of my older friends began peeing their pants, lymphedema didn't look so bad. Pat will probably expunge the prior comment.
Betty

[patoco]

Hi Everyone

I have had some real dozzies too, but you actually get used to it. I just turn it into an educational opportunity.

LOL...sometimes, I feel like I ought to carry a tape recorder with me and just turn it on.

Pat