Finding Active Members (Ghost Town?)

[bayoulady]

Hi All,
I am a new member that has just mostly visited and read comments and articles for the past month:confused:. A lot of good information is here. But every time I see someone on the member list with which I have commonality(Lymphedema both legs, sixty, and looking for friends/support)I find that they have not posted for 2 or 3 years. So disappointing. It's like a Ghost Town, and that is a shame, because this is a good site. Who is out there ? Of the 17,000 plus members, I am the only member logged in. :confused:

[Ann]

Lymph Notes has been online for many years and we have learned that there is a pattern in membership.
(1) Many new members are recently been diagnosed. They are frightened and have a great need for information. At this stage they are very active posting questions and our goal is to provide the information they need.
(2) Other members are wonderful in helping and supporting them them with answers and suggestions.
(3) After a member has learned to manage their lymphedema, they are no longer as active on the board. Instead they move on with their lives. We miss them, but know that this is a healthy sign.
(4) We greatly appreciate those who take the time to help others.
(5) If you have a question, please post it!
Best wishes for a happy and healthy New Year.
Ann, from Lymph Notes

[Whamo]

Hello Bayoulady -

I am new to this website so this type of forum is new for me. But I have Lymphedema in my right leg primarily but can also get it in my left leg if I fly or am on my feet too much. I am 50 and have been dealing with lymphedema since I was 16. I know that dealing with lymphedema can be difficult.

I am here for support. If there is anything you want to know or discuss, let me know.

Hope all is well with you!

:)

[bayoulady]

Thanks to both of you. I guess I see your point, Ann. I was also diagnosed with sleep apnea a year ago, and I did frequent the apnea boards more often in the beginning. I learned so much and made some great cyber friends.I visit a few times a week now, and my posts have greatly reduced. Usually, someone else has already posted an answer, so there is really nothing to reply .

I am just devastated at my diagnosis. I know they say there is not much pain, but I DO have pain.Also my doc has put me on Paxil for depression. I teach elementary school and sometimes can't complete the day anymore. Today I woke up, and was just too depressed to struggle with my compression hose. They are only 20/30. How do folk make it with the firmer ones?OUCH!

[Ann]

Who ever told you that there was no pain with lymphedema was providing bad information. There is pain. Some patients have more than others. Hopefully you have a good lymphedema therapist who will help you learn how to reduce the swelling, reduce the pain, and handle the compression garments more easily. (For example, a donning aid might help.)

If you have private questions you want to ask, feel free to contact me by e-mail at ann@lymphnotes.com There is no way that we have all the answers, but we will try to help.

Ann:)

[Whamo]

Hi Bayoulady -

I don't know what Ann is referring to when she talks about a donning aid. I have used all of the following to help get my compression garments on.

- Rubber gloves ... the same ones for washing dishes and this helps a lot.
- Usually the garments come with something that goes over your foot and this helps quite a bit to slide the garment on.
- Sometimes if you put baby powder on your leg ... it can also help.
- You may want to try turning your garment inside out and and then working it onto your leg that way. I found this helpful with the regular compression garments.

I do have a higher compression garment and I found the ones with the smaller weave (the typical ones) more difficult to get on. I prefer the custom garments made by Jobst. It is a very heavy weave, which makes it look less like a regular stockings if you're concerned about what it looks like, but it is so much easier to get on and so much more comfortable to wear. No binding / biting behind the knee.

[Partner]

A "donning aid" is a metal frame that is shaped to simplify putting on a compression stocking. (I tried to find a photo of one, but no luck.) Anyone who is interested in such an aid, might try searching under "donning aid" or visiting the website of the major stocking manufacturers.

It has been helpful to me. Partner

[tearose]

I am new too and believe people usually go to a forum as they need. Let's hope others are not here because they are managing well.

I have used Juzo products and find them less likely to irritate my skin.
I had no luck with the donning aid!! Both the physical therapist and I had a good laugh. It was like a sling that kept smacking into me and was just impossible to use. I do use powder on my legs. I have to sit on the floor and slowly and gradually work them up my legs. I use the Juzo 30-40mm pressure waist high pantyhose and they are life savers! I just had to learn and manage to get them on because I cannot manage without them!

[Trish]

I'm glad you are able to laugh about the struggle with the donning aid. I've watched the videos on the websites where these are sold and they make it look so easy. Have you seen a "thing" called a "Slippee? That looks easy too.

I'm going to try some of your suggestions. I come here looking for ideas that WILL WORK. Like many others, I need all the help I can get.

Thanks, Trish

[CarolLymphPT]

Hi I am a lymphedema therapist and have had patients use the Jobst stocking donner or the Medi butler. The butler is better if you have trouble reaching down to your feet and is wider if your leg is large. You may be putting your stocking on wrong, there is a technique to it and you need to turn in nearly inside out, never bunch it up. You could talk to your therapist or fitter to make sure your stocking isn't too small. Good luck, everyone has trouble getting the stockings on.

[tearose]

Well, if we don't find things to laugh at then it all gets too serious. Fact is, it will be a lot harder when we are 90 years old so let's stay strong and keep a sense of humor.

(If we need to discuss the pain and losses that is probably good on another thread.)

The donning tools may work in lighter level compression but it was impossible for me in the 30-40mm! With respect LympPT, even the inside out does not get the panty hose over my foot and ankle. I must scrunch and gently tug, scrunch and tug and once over my knees it is smoother upwards. I have been managing since 1992 and have tried everything.

The best things for me is also to get into the pantyhose as early in the day as is possible.

[bayoulady]

Hi to all,

I haven't been on the site in a while.I have been so So sick with H1 N1, and then an inner ear infection, a bad 3 days when my asthma played havoc,and THEN bronchitis. All since Feb. 8th!(I used to never "catch" anything,though I teach 2nd grade.)

Anyway, getting back to why I'm posting. Tearose's suggestion has helped. No more lazying around, drinking coffee, etc when I get up. I take a quick shower/dry off and get my compression stockings on immediately.I'm a sight to see ......my old plump self(213 lbs) rolling, huffin' n puffin' and muttering encouragement or nearly crying with frustration!!LOL!!! But since I elevate(4 pillows) at night, 1st thing in the a.m. is when my old legs are at their smallest.

Thanks!
bayoulady from Louisiana

[Helena]

You must have a great sense of humor -- your description of getting into your compression garment is classic and you certainly are not alone. I figure that it is worth the struggle.

Thanks for providing a smile and knowiing that I'm not the only one who does not just "slip" into that garment!

Helena

[bayoulady]

Ha! Glad I gave you a smile.We have to laugh..or wallow in self pity. Most days, I laugh. A few times..well..I need chocolate!:DI forgot to mention that all that puffing was with KNEE HIGH 20/30. Heaven help if I ever have to have thigh high 40! Seriously,though...I watched a you-tube video of an easy way of putting on the garments by turning the stocking inside out and grabbing the heel..well,it is complicated to explain, but I have learned to get them both on in about 5 minutes MOST days....

[ProudParents]

A lot of people struggle with getting stockings on and off (donning and doffing seem like such strange terms for this daily battle.

I have notice that some new devices have been develops and maybe they would help. The "all knowing internet" will search for them if you search on those terms.

Then I read your post again and wondered if it is possible that you have the wrong size the compression of stockings. Might be worth checking!

[MissEmmaLee]

I haven't posted before since everything seems to be changing on a daily basis.

I am recovering from lymph removal from my right leg and melanoma removal. (Nodes came back clean:o)

I am learning much from the forum and can not express how needed it is.

But maybe a General Discussion area, where folks can talk about other things than Lymph problems could be used to get to know each other on a different level?

[Ann]

There are so many things going on that many of us have difficulty deciding where to place a posting.

You can look at the bottom of a page for "search" and look for a word that fits for what you want to post about -- or you can just go ahead.

One important thing is when you signed in to be notified when a message is posted. If you haven't done this, go back to the home page, go to the orange bar, and look for the heading "My Lymph Notes." You can make changes here.

There is so much to learn about living with lymphedema. We try to cover it with articles -- and those who post generously share their experiences, feelings, and words of wisdom.

We look forward to hearing from you.

Ann

[KyWildKat]

Hi all,
It has been great to find a site that I can identify with instead of reading articles about the norm. What is normal with lymphedema? LoL
I have been told by my therapist that my leg lymphedema is not responding to treatment. I have had the wraps, the stockings, and the massage but still both legs are huge and they do ache and hurt like crazy. I have been sent to a new dr to find out the origin of my lymphedema which I'm still waiting to find out. I've had two drs tell me it was stress and I needed to see a psychiatrist but when you look at my huge legs it's easy to see it's not all in my mind. Have any of you gone thru this just because there are no drs that are familiar with lymphedema. I'm thinking seriously about going to the Cleveland Clinic to see what they can find out. I'm tired of being made to feel like there isn't really anything to worry about.
Thank you ahead of time for any advice or help you can give me. :)

[LymphedemaGirl]

Bayoulady, I really feel for you. The stocking can be a pain in the xxxx to put on, but as you know now, you must put it on first thing before the leg starts playing up. I find that I can't potter around for even a few minutes before the fluid starts building up, so in the morning I jump straight into the shower - me, who before LE would spend most of a Saturday morning lazing around in my nighties, sipping coffee, surfing the net, reading my paper. Those days are gone - at least until further notice. Also, I find that even the rays of water when showering are enough to cause trouble, they sort of lead the lymphfluid downwards, so I shower with one foot on the toiletseat (yes, my bathroom is very small :) ) and put my leg high up when rinsing soap off) and sometimes after showering I lie in bed with my legs up the wall for a bit while doing some deep breathing before putting the stocking on.
I use a device called an Easy-slide to put my stocking on. It is SO helpful, couldn't do it without it. I got mine online from brightlifedirect, but you can probably also get it in a proper shop with orthopedic remedies in your area. Fold the stocking so about 2/3 (upper part) are inside out, then use the Easy-slide, pull it out with your hands or by putting your big toe from the other foot in the loop and pull (with your foot/leg), then stand up and pull the rest of the stocking up, bit by bit - I do it in perhaps four bits or so. I'd say it takes me 1 or 2 minutes to get it on. I got the white Easy-slide, and I am shoesize 39 (European). It is fine, but next time I will get the bigger one. I hope this was helpful.

[Vette Girl]

Hi, I'm Vette Girl,
I was diagnosed with an aggressive form of uterine cancer a year ago. After the removal of 14 lymph nodes (four with cancer cells) and weeks of daily radiation and 12 chemo treatments; I developed LE from my abdomen, down through the pelvic area and down the left leg.

My oncologist recognized the LE immediately and sent me to a therapist. I now have nightly massage and my legs wrapped. As soon as I get up in the morning, I put on my compression sock on my left leg. I also wear a compression garment that starts at below my breast and goes down both thighs. I wear everything 24/7. Watching my the amount of sodium I consume helps greatly. We are adding on a room to the house that will have a 8' X 12' swim spa so that I can walk and swim without being outside. We live in Texas and one of the first things I was told was that for the rest of my life, I needed to stay away from temperatures 90 +.

I have had a special garment ordered to sleep in and will not have to be wrapped any longer.

None of this is fun, but I'm sure glad to be alive!

A sense of humor works. One crazy problem with my upper compression garmen is having to go to the bathroom. If you've been sweating, nothing helps to get it back up and I have to wear a garment with a full crotch because of the pelvic LE. It's pretty funny to see the porta potty at events shake when I'm dancing up and down trying to pull that darn thing back up.

[bayoulady]

hello, I have read all the helpful suggestions and now I realize that you cannot go without your compression garments for a few hours while you lazily get your day going. It has been over 9 months since my diagnosis now. I am coping much better. I am now (this summer) retiring from teaching. Maybe someday I will do some tutoring.:)Thanks to all who posted!