Discouraged with lymphedema: How do you cope?

That is discouraging @wellgirl I am not troubled overmuch with lymphedema, it is an occasional issue for me. That being said I do understand your pain, and five years is a long time to be steadily dealing with this. I searched the breast cancer pages for something that might answer some of your questions about how others cope.
There is an older thread I was reading, when I cam across a post from our fearless leader here at connect, @colleenyoung to another member.
She included a link to a page from Mayo about this.
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-lymphedema-when-is-surgery-indicated/
Would you be willing to see another professional in order to see if there were different options open to you? Do you have a good network of doctors or one that you have a good relationship with that you can have an honest conversation about this?

Lifetraveler's hug brought tears to my eyes because I was feeling very alone. The sense of not having control over my own body was overwhelming. Just the fact that she had heard me and knew I needed a hug meant a great deal. Then your reply, Chris meant more than I can say.
I am an hour away from Beth Israel in Boston, which has a Center of Excellence" Lymphedema Clinic. lymhatic center according to the Lymphedema Research and Education Network (LE&RN). I had looked into getting evaluated there but didn't follow through, feeling so many people are so much worse than I am they would probably blow me off. Your message and the link you sent me made me feel that I do need to follow through and send that application for an evaluation in to them.
All I was told here was doctors don't study lymphedema. I got blown off by my (first) oncologist, who said "Oh, that will be there" when I pointed out swelling to her. I was ignored by the nurse navigator (she didn't reply for three weeks to my email when I first sensed something was wrong, I thought I was just a complainer. When I was finally referred to PT, it was simply to a PT assistant, with no training in lymphedema but no one told me that I needed a LANA certified CDT therapist.
When my arm was 19% larger than my other arm, I was finally referred to a LANA certified therapist
I have no complaint with her. But it is hard to not be able to trust a doctor when you have a medical problem. I even tracked down an MD (a family physician) who is in my neighborhood who has lymphedema. I just wanted to meet her (not as a patient but just as another woman who has lymphedema) She refused, I have begged for a support group but am given cockamamie excuses for why that is impossible. One of the excuses is that women who have lymphedema are too ashamed and would never come out to a meeting. Hearing that made me feel like a freak. Was I supposed to be ashamed for having lymphedema? All the more reason that they should have a support group.
My radiation oncologist didn't know that there are stages of lymphedema. He blew my concerns off, telling me all I needed to do was elevate my arm and make fists. By that time I had stage 2 lymphedema and it doesn't respond to elevating it or exercise. The fact is, when I developed a rash where the radiation had been, a year earlier, I sent him a message. It was through the portal so his nurse may have gotten it, not him) When he didn't respond, I thought it mustn't have been anything serious. I ended up with cellulitis/lymphangitis. By the time I got to the hospital, they told me had I stayed home that night, I would have had about twelve hours to live. My kidneys were shutting down.
People don't realize that while lymphedema isn't fatal, lymphangitis/cellulitis can lead to sepsis and that is fatal. They don't realize that when you're missing lymph nodes, a small infection can lead to this complication. And it happened very fast. One night I felt fine and the next morning I was sicker than I had ever been.
I feel others think I'm making a big fuss over "a little swelling".
My lymphedema therapist told me, "this will be a daily battle for the rest of your life."
I have even thought of ending my life just to end the misery I feel about the lymphedema. My biggest fear is that cancer will be missed again on the other side and I will get lymph node involvement. I'm not in the least afraid of cancer again. I'm far more afraid of getting lymphedema on the other arm.
A good day is one that I run errands or go out socially and no one comments on my compression. Even little kids run up to me innocently wanting to know when I will "get better". It is embarrassing. When I wanted to take off the wrappings just to feel a little more attractive when having a special dinner with my boyfriend, my arm started swelling within an hour. It has been five years of this. I get praised for how "normal" my arm looks and I respond, "That's like telling Sisyphus "Good job". My lymphedema care is like a part time job, Each morning I don't know what I am going to see when I take off the bulky and heavy night compresssion sleeve. This morning I used the pneumatic pump and my arm and afterwards my arm and hand looked worse than it was before. I used to love to cook and to garden but both are so difficult to do because the gauntlet gets filthy and if I put a glove over the gauntlet, in the garden the heat from the glove causes my hand to get even more swollen. When I told my rad onc about how when I cut an avocado my gauntlet was stained with green, he thought it was hilarious and told me I should lick it like a cat. That comment was humiliating.
I finally switched my cancer care to Dana Farber in Boston and have found a different attitude. It's a long ride on public transportation and it's more expensive, but it's worth it. And now, I realize I need to get an evaluation at Beth Israel. I'll send that application on Tuesday, after the holiday.
I can't thank you enough, "auntie oakley".

Hi! Wellgirl:

I am so sorry for all you've been through all these years:( For 5 years is such a long time for anybody to suffer through!

Please be reminded that our thoughts & prayers are with you and you'll never be alone, for our loving spirits are with you along the way, my friend!

Best wishes to you on future treatments at Beth Israel and Dana Farber in Boston!

You are so brave to keep seeking help after all the discouraging encounters trying with a local team. I can’t wait to hear about your encounter at Beth Israel, I just know it is going to be amazing. I think a lymphadema support group sounds like a pretty great idea. Not much different than what we do here (virtually of course). So I am going to tag @kamra to join us here because she has recently had a bout with lymphadema as well.
The shame does not belong with the patients, the shame belongs on the medical professionals that can’t recognize the problems that are created by our cancer treatments.
Have you tried any of the new gardening gloves with the nitrile palms and fingers, I use them for barn chores and my hands don’t get so hot?

Diagnosed with Stage 2 Lymphedema in left breast and Stage 1 in arm. Had PT at Sutter Roseville Lymphedema Clinic and continue to do Lymphatic Massage at home and follow up visits with NP at the clinic! Tried compression bra and pump but was too uncomfortable! Having Lymphedema sucks but it’s manageable. Sending you comfort and healing🌻

My good friend from high school battles lymphedema, and it is very serious! I was shocked to learned from her how few medical professionals really understand lymphedema. It’s shameful. She has often been treated as less than a human being because of her lymphedema. I pray you get some resolution from Beth Israel. Please keep us updated! We’re all here to support you and want the very best for you.

Thank you so much, runnergal and all those who sent hugs and other support.
Lymphedema is awful because doctors don't study much about it in medical school so they don't know how serious it is. When doctors don't know, nurses don't know either. And people can be really insensitive. I was wearing bulky wraps one day, soon after my diagnosis, standing at a corner waiting to cross, and a guy riding his bike yelled at me, "You look like Popeye!" I have been approached by strangers who ask about it. Sometimes I don't mind but sometimes I just would like to go out and not be noticed. I know what you're saying about being treated as less than a human being. I would like to see a support group started for people like your friend and me, even if it is virtual.

The doctors who are the most knowledgable about lymphedema, its management and treatment are few and they are typically specialized plastic surgeons, sometimes vascular surgeons. Travel out of state is typical. Surgery both for lymph function and cosmetics is their focus. Insurance coverage so far is spotty. They may be selective in accepting patients. But it is an option that is growing. Sloan Kettering, Cleveland Clinic, Rush, Mayo are some places that have this. There are more. Surgeries i life reconnecting blocked lymph vessels to restore flow and transferring functional lymph nodes to areas where function has been lost. These procedures are often accompanied by liposuction to debunk the tissues in affected areas. 10-20 years from now I suspect that lymphedema treatments that actually ok l help patients will be the norm. Dry beginning stages now JMHO

"people don't realize that while lymphedema isn't fatal, lymphangitis/cellulitis can lead to sepsis and that is fatal. They don't realize that when you're missing lymph nodes, a small infection can lead to this complication. And it happened very fast. One night I felt fine and the next morning I was sicker than I had ever been."

This is very true. I have lymphedema and chronic venous insufficiency in my legs since 2013 and only take off my stockings to take a bath or shower. I have had cellulitis 3 times since 2013 and twice ended up in a hospital for one week each time. I found a good veneous doctor in my area and have had ultrasounds, CT Scans, MRIs and now have a pneumatic pump by Lympha Press. It sucks and is discouraging that there is no cure BUT it can and I do manage it. I also had a vein ablation on both legs in 2019 which changed most of the swelling from my legs between my knee and ankle to my feet. I take off my stockings and within 10 minutes my feet are starting to swell and hurt and it feels like the skin is stretching. It is important to have a good vascular doctor or team of doctors. And to try not to get too discouraged.

Here is a very good YouTube video I first watched a few years ago about Lymphedema and the similar diseases and it is still on YouTube.
https://www.youtube.com/watch?v=e_vFa5BKfJk