Breaks down daily...

[marisams74]

Hello to all. I’m so lost in my horrid journey with lymphedema! I know longer feel comfortable going to friends and family for support, no one understands what I’m going through, they just keep telling me to get a new doctor, or a second opinion. I have horrible, open and weeping ulcers on my legs due to the swelling from the lymphedema. I’m still waiting to be approved for a wound care specialist, as well as a CT scan of my pelvic area. This is now causing friction in my marriage, and my entire life! Not a day goes by that I’m not in pain, even with meds. At this point I dread changing my bandages, and have to psych myself out each time I even attempt to do so. I can’t even imagine a dressing change without having taken my medication at least 20-30 minutes beforehand! Oftentimes I’m so tired, I fall asleep waiting for my meds to kick in, then have to wait till my next dose...I’m losing my mind here, and I’m at my wits end! I break down every day, however, life must go on, so I put on a happy face, and go on, at times pretending like nothing is wrong! I can’t handle much more...

[Lynora]

Your profile says you are in the US. This site is based in London - so please contact sites where you might get help and advice such as:

lymphnet.org

clt-lana.org

lymphaticnetwork.org

I’m sure some of our USA based members will be along soon to add some support.

You need wound care treatment soon!

[marisams74 in reply to Lynora]

Thank you, I haven’t done much research, I found this site, but not much more. I have medi-cal, through the state, so I’m just a number at this point. I figured my paperwork is in someone’s desk waiting to be looked at, so they can approve my procedures, until then I’m left with open wounds getting worse daily!

I will be looking for some support out this way, thanks again, and God bless you!

[Mary-intussuception in reply to marisams74]

What do you bathe them with? Plain water?

Have you considered adding a little Bicarbonate of soda / Baking Soda to tepid water. Boil water then leave to cool.

[BADFoote in reply to Lynora]

Wow, that was really rude. A person reaches out for help and you say go here instead. I live in the USA and have done tons of research trying to find a site like this one--and haven't. I'm sure you meant well, but when someone is new to this they are grasping for help.

[Lynora in reply to BADFoote]

I apologise if my suggestions came across as critical or rude, to marisams74. You may have seen from a more recent post from her, that her situation has improved, and she has found a supportive MD.

It is difficult to give clinical advice to people who are not able to gain access to treatment in this country, let alone those who live thousands of miles away. I simply gave her contact details to groups in country.

I work with lymphoedema patients daily, as a therapist. Many have fallen through the net of care offered by our NHS.

I also have the condition following breast cancer treatment in 2001.

[CCT67]

You’ll find support on the US equivalent of this site. Just google Inspire.com, then enter National Lymphedema Network in the Inspire search window to be taken to the NLN forum.

You might find the link for 10 Things LE useful in helping your family members understand what you’re going through and how they can support you. It was devised by a group of Lymphedema survivors in the US who faced unhelpful responses from their doctors, family and friends to their struggles with LE due to their limited/misunderstanding of the disease. Sadly it’s all too common for Lymphies to be brushed off by medics and family due to their lack of knowledge about the disease

10thingsle.info/resources/

[BADFoote in reply to CCT67]

Just checked out that site. $50 to join their community.

[CCT67 in reply to BADFoote]

Which site/community?

[2198224]

Hi marisams74. I'm in rural US, Montanan, and have lymphedema in both legs and abdomen, but no weeping sores yet. I'm really sorry you have to deal with that. Do get in touch with the lymphedema groups Lynora listed.

I had to see a wound nurse a couple months after the bladder surgery that brought on the complication of lymphedema. That nurse ordered a wound care paste for me from Coloplast brand. It quickly closed up the weepy wound. I don't know if the same type medication would be used for your situation, but wound care folks here had some magical things they can do. In order to be seen I called directly and got an appointment. I didn't wait for anyone to refer me. I just told the receptionist what was going on. I wish that would work for you.

You might also start making frequent calls to whoever is holding up your paperwork, explaining what is going on the the absolute need for help from a wound nurse. From what I've read, this isn't something you should be made to wait about. The old saying, "the squeeky wheel gets the grease," is true when dealing with some bureaucrats. I'll tuck you into my prayers and hope things turn for the better for you very soon.

[Oonagh1]

Oh dear, I wish you all the best, suffering in the midst of misunderstanding and ignorance is pretty unbearable.

Irrespective of your unsupportive environment please get out there and make those who are dealing with your paperwork understand just how far you will go to escalate matters, if you don’t get immediate treatment. This delaying game is putting your health in danger, be bold if you can, go as far as putting you affected areas on YouTube, choose a good title and off you go. You are in my thoughts.

[Pyar]

hi dear, there is nothing to worry about. I have had lymphoedema for 10 year. three golden rules are wear your sleeves each day not at night to keep the swelling down. do not spend long hours in the sun and make sure you get no bites on holidays. this could be dangerous ohhh and one other, TRY NOT TO GET CUT ON THE AFFECTED ARM. stay away from sharp knives in the kitchen.

[Mary-intussuception]

Hi

I thought that GPs were suppose to attend to such ulcers as a priority.

[Katem25]

I understand your pain, though I don’t have any open sores, the pain is constant, everyday, all the time. I’m sorry you are struggling so much. When well meaning people ask me how I am, I put-on the “I’m ok”face, if I don’t I get, did you go to the dr., maybe you should this or that. They mean well, but, have no idea how much pain my knees are in. So, hang in there & do the best you can do for you.

[marisams74]

Hello again everyone! Thank you all so much for the support, it is greatly appreciated!

Well, I have some great news! Shortly after I joined this site, I took a trip to the ER. That proved to be the last straw in my horrible journey! I was hospitalized for five days, within three days of being in the hospital, I had surgery done to clean up my wounds entirely, and then had skin grafts put in place to promote quick healing! A large portion of the grafts took, however, one big portion of my right calf was too far damaged. I also found out I am diabetic, so that explains why my wounds were in such bad shape, and why I kept getting infections. I’m dealing with it pretty well, and the last of my wound is healing, in fact, my new doctor has already ordered the newest skin grafts to be put in place soon!

God bless everyone, I hope we all are able to get, and keep well for a long time to come!

Sincerely,

Marisams74

[buddygreco]

I have head to toe Lymphedema, caused by a biopsy butchery. Following that after 7 yrs. l now have Lipedema, that scares me to death. The biopsy was to find out why l had lumps everywhere. My own research led me to its name: Dercums. What we have to really get: 'THERE IS NO 'MY DOCTOR', they know little to nothing about the lymph system, one l know online fb.John Douillard, write to him on symptoms. Find a Qualified MLD therapist, there are 90% of them fakers, just physical therapists posing as qualified, took me 8 yrs. to learn that.. Nothing from traditional doctors helps me, they just shove you out the door w/a pill w.worse side effects than the illness, . Check on books by, Karen L.Herbst on lymph system. Check on Linda Anne Kahn San Diego, she has a clinic that treats all things lymph, maybe she can lead you to a doctor or qualified therapist, insurance should cover! , she has a list. We have to learn to b e more PRO-ACTIVE than ever. We are wired in childhood by mothers, l'll take you to the doctor', unwire that, there is no 'my doc tor' your own self care w.knowledge is the 'my doctor'. I do 100% Functional & Integrative Medicine ONLY, Supplements that do the same as drugs. I work on it 2-3 hours every few days.