Discouraged with lymphedema: How do you cope?

I too have had cellulits and ended up in the hospital. I have a pneumatic pump also. Yes, I agree, it sucks to be tethered to a machine every day. For me, if I'm not in compression, it takes about twenty minutes for the swelling to start. I was managing it really well for quite some time but recently the swelling inexplicably got worse. My lymphedema therapist told me to go back to the "wraps" (elatic bandages on my arm and gauze around my fingers and hand) that I wore when I first was diagnosed. I realized I have to know that I've done all I can to control this.
I just filled out the six page questionnaire for Beth Israel's Lymphedema Center. They will review it and determine the next steps for treat it.
They call this "Cancer's Dirty Little Secret." As much as I wouldn't wish this on anyone it is so good to hear your story and frustrations because I realize I'm not alone with this. I don't have pain but I sure know what you mean about feeling the skin "stretching". It feels like my arm is being pumped up like a tire or a balloon. Thanks for sharing your story and for your encouragement.

Yes, I wear the compression bra. I met another woman who wears it and she calls it the "torture bra". I've gotten used to wearing it, but it sure cramps my style with clothing. I never wore plunging necklines but this bra sticks up above a neckline that is at my collarbone. I was managing quite well for sometime but it suddenly started to swell again. So I am going for a second opinion and consultation for possible surgery at Beth Israel Deaconess Hospital in Boston at their Lymphedema Center. Thank you for your encouragement. It means more than I can say.

I developed lymphedema not long after completing radiation. I was referred to lymphedema therapy, had lymphatic massage and bulky wraps to my hand and arm and used a “swell spot” to help reduce edema to chest and underarm. When I reached a point where swelling was reduced and not changing I was measured for compression sleeve and glove. I found a wonderful company that makes fashionable sleeves and gloves that are medical grade. This was a life changer for me. I have sleeves and gloves that match my outfits or my moods. Sometimes they spark a conversation. The company, Lymphedivas, was started by 2 cancer survivors.

Thank you, mossa,
I talked with my lymphedema therapist this morning about the "swell spots" you mentioned. I have a big swelling at my underarm. I had asked my lymphedema therapist about Lymhediva right from the start. I too love their fashionable sleeves but I have stage 2 lymphedema and have to have my sleeves custom made. I may be able to talk my lymphedema therapist into letting me order a glove. Have you gotten insurance to cover Lymphediva products?
Good news! In my visit to my lymphedema therapist today, the volume of my arm had gone down. It isn't at the 4.2% I had been but it also isn't at the 13.6% it was a week ago. I was happy with 6,2% to day. It's going in the right direction. My therapist and I brainstormed what was causing it to swell and we think it was from a wasp sting that I got, right through the compression sleeve! It was really a nasty sting that itched for about two weeks. Then my skin began to peel around the bite. They aren't kidding when they tell you to watch out for the least little break in the skin. I had insect repellant on but didn't think to spray my compression sleeve.

It has been so great to hear from those of you who have lymphedema as well as those who have sent hugs.
I told my lymphedema therapist about Mayo Clinic Connect and how I didn't even realize how much I needed support, even five years out from cancer.

I am over five years out from my diagnosis of breast cancer and mastectomy, within six months of the mastectomy I developed right upper Lymphedema. Occupational therapy, massage, compression garments, pump, lost weight, exercise, weight training, Lymphedema only gets worse. Finally diagnosed with total lack of e in the right upper extremity. Add a Venous lymph node transfer surgery done. Experienced lots of complications, but the VLNT surgery healed well and appears to be working, somewhat. Measurements have stabilized, somewhat. In the meantime, I have two spots, one of the wrist and one of the elbow that support the diagnosis of a blockage. The blockage at the wrist is scheduled for surgery 14 months from now! That is how backed up the surgeon is. The elbow area remains a mystery as the diet test is not really good at showing upper arm blockages. Part of surgery will include use of an ultrasound to determine if there is a vein in the upper arm, that will support a stent as well. Good news, bad news, if I get another bout of cellulitis, I call the surgeon. I bounced to the front of the list! I don’t know whether to vote for that or not. In the meantime, I continue to wear highest compression sleeve and glove, and in facing yet another surgery that may or may not work. Lymphedema for some of us is truly the gift that keeps on giving. It’s frustrating. I used to get it seemed to me to be pretty constant questioning for people until I started just avoiding people. My family and my friends all know and understand the sensitivity of such comments. It is truly just pure strangers usually asking what they think isn’t innocuous question. Some of them are embarrassed when I give them an answer and they realize that they have overstepped or boundary. Some of them are just amazed. avoiding them has been a good strategy for me. I also tend to wear long sleeved garments that hide the sleeve. That has also been helpful, but sometimes difficult to do in the hot summer sun. Cancer is dirty little secret isn’t a strong enough phrase to discuss the level of difficulty and medical issues of people with a high stage of lymphedema. While I still am happy that I have some lymphatic function in that arm. I am also very very sad that it’s not very great function, I have a lot of backflow, a lot of the veins are just seeping out lymph so in the long run, is it all for naught? I so much hope that going forward surgeons learn to be more judicious in their diagnostic and removal of lymphatic tissue and all cancer surgeries. I also hope that treatments for Lymphedema and coverage for necessary. Lymphedema surgeries improves significantly over the next few years. I have to wait 14 months to have surgery because there are so few qualified lymphedema surgeons in the United States of America Who are capable of the surgery that all of them are backed up and it has a serious impact on all of us who so badly need their care. It is beyond sad and beyond frustrating. I think it’s cancer‘s dirty little secret and I think society views swelling, and inflammation as being a character flaw in general, as they do with anything that smacks of a weight issue. So very sad. That said we are lucky to be living in a time Now where there are these super specialists and the ability to take a look at Lymphedema arm and determine exactly what the true problem with it is and sometimes even finding something that makes it a little bit better and I think for some people makes it a lot better. But it is still frustrating. Still little understood by the average person and even by the average physician. One of the best things that ever happened to me was finding a group like this where you could vent with people who have some degree of experience and understanding with how hard it can be.

I am so glad to know you yet I wish we never had to meet, considering we are meeting because of "cancer's dirty little secret". I know what you are saying about avoiding the curious.
A good day for me is one that no one asks about my arm or hand.

There you were doing all the right things and this insidious disorder still gets worse.
I hate the unpredictability of it.
I find it interesting in this video (below) that they mention care for lymphedema is better in Europe. My lymphedema therapist said the best treatment is in Germany. I might plan a vacation in Germany.

If you are unaware of the Lymphedema Education and Research Network (LE&RN) it is worth checking out their website. There is a good video here. You may know most of what they are explaining; but it is affirming to see Kathy Bates, who has lymphedema and others.

It is frustrating that 10 million Americans have lymphedema which is more than people with HIV/AIDS, MS, Muscular Dystrophy, Parkinsons and ALS combined. Yet, doctors spend about fifteen minutes in their entire medical training studying the lymphatic system. It makes me feel betrayed by the medical system. Those surgeons who do learn about it are extraordinary.

Sounds like you have a great therapist. My insurance does not cover the sleeves or gloves, my first order was from Lymphedivas “seconds” website, where cost is greatly reduced.
Best wishes to you on this journey.

A HUGE thank you for sharing this video. I have lymphedema and this video has given me hope that I can find someone that can help me.

I’m pretty sure by law they have to cover them.

The legislation requiring Medicare to cover lymphedema garments was passed in 2022 and it took effect last January. https://lymphedematreatmentact.org/
As you can read here https://www.congress.gov/bill/117th-congress/house-bill/3630 This bill provides for Medicare coverage of lymphedema garments. If @mossa is younger than sixty-five, she probably doesn't qualify for Medicare or an Advantage or Medicare supplement plan.
"Mossa", check with LE&RN or SHARE Cancer Support to see if there is any way of getting assistance. I will ask my lymphedema therapist what she recommends for patients who don't have Medicare coverage. There's got to be a way!
For more information check the Lymphedema Education & Support Network (LE&RN). Veronica Seneriz is the Patient Services Director. She herself has primary lymphedema. I spoke with her on the phone when I was looking for "peer support". https://lymphaticnetwork.org/
And/or contact SHARE Cancer Support. https://www.sharecancersupport.org/ They are an organization of women who have had female cancers.
They are very supportive and if they don't know something you ask, they will find out. Their national helpline is excellent.
However, I have gotten the most support for lymphedema through Mayo Clinic Connect, that is all of you!
Mossa, you called this a "journey". In my opinion, a journey" is a trip to Prince Edward Island, to Lisbon or the Adriadic... I'll pass on the lymphedema journey. especially if it means having to lug that pneumatic pump around. 🙂