GRRRRRRRRR I HATE LE..........
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And let someone else do the heavy lifting of baggage. Also, lots of deep breathing.
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Gma, some deep abdominal breathing too.
Happy travels!
Binney0 -
Thanks for reminders. I'm traveling with my boss (son). He is taking care of my carry-ons.
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Carol and Janet-yes excited but also a little fearful about going back to school after 30 years. I have to relearn how to learn.
GMA-happy travels to you.
Linda and all-I know this sucks, believe me I do. Everyone has seen my meltdowns on this board. You know, Ingrid Bergman had breast cancer, and she had LE so bad her right arm was almost useless. She said, "At some point, you have to make peace with adverse circumstances … you have to bend. Bending is part of life.”
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Nibbana - I completely understand. I went back to school to finish my degree at 43. I was so intimidated, I could barely raise my hand. After a few weeks, I could barely put it down. I loved 'the kids' but I found them kind of boring - they hadn't really experienced too much in their lives. So I made friends with my fellow oldies. The biggest difference between us and the youngsters was that we sat at the front of the class and brought our own snacks.
Gma - Make sure your boss does all the lifting.
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On my way home soon. Didnt sleep at al last night. Pain and LE acting up. Will take it slow. 3.5 hour drive. And yes, my son packed my car for me.
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Good luck on your new adventure nibbana!
Gma, safe travels! Hope you can enjoy the fun stuff!
Linda....Hugs! I know this sucks! I've been in a funk, and I'm pretty sure it's because of the LE. We'll hang in there together! Hopefully the cooler weather will help relieve some of the symptoms.0 -
Well, I thought a mastectomy, chemo and radiation were awful (and they were) but lymphedema is worse than all of them. I was blindsided. I had no idea it was such a pain in the ass....and the arm particularly. It is my dominant arm. I now find that my arm is the main focus of my life. I am looking forward to retiring next year, but really have lost enthusiasm for trying new things. Between massage, exercises, wearing and washing garments, making a decision about every move I make, it sort of runs my life. I have gloves everywhere to put over my gauntlet because every thing you do has the potential to get it dirty and it just isn't like washing your hands anymore. They are in most rooms of my house, my purse, my car (pump gas) and my desk and pockets at work. Should I do this next move with my bad arm? My arm is a little more swollen today, what sleeve will fit over it?. I just got a custom sleeve ($444 before insurance), it is very hard to get on right, it makes my arm ache and my hand swell. My therapist who I loved left for a new job. My new option is not appealing (that is a long story). I do have a Flexitouch ordered and though I am not excited about it (or the $1500 copay), if it will help, I will be grateful.
My arm now runs my life. Time, activity, pain (to me it is an ache), swelling, the damn sleeves are HOT and yes, I get a least one question a day. I work in a hospital and I do answer employees questions.."did you hurt your arm?" but have lost tolerance for those in the grocery store....it is none of their damn business. I am working on an answer that will make them feel bad but doesn't sound pitifull. Any suggestions???
I cry every day, I am angry, I am sad, I had to stop my private yoga lessons for now....note the previous money amts. Just as I am planning my future as a retired person, I feel no joy.
I have not had reconstruction, will see the plastic surgeon in a couple of weeks. She is going to say that reconstruction will aggravate the LE, it is not huge now, it is probably moderate but it is miserable. So is wearing a prosthesis.....I swear I have not felt this hopeless before.
Maybe saying all this will make me feel better.....but it hasn't yet.
PS. I work with a nurse who had bilateral mastectomy with immeditate reconstruction, no chemo, no radiation. She made a comment to me one day that we need to think of ourselves as normal. I raised my arm with the sleeve on it in her face and replied...."this is not normal" and walked away.
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TNNurse... BIG GENTLE & WARM HUGS TO YOU!!! Much respect to your post... and why??? because thats what LE is all about and thats the reality of it. Some of us can make peace with our condition quicker than others and/or more often than others, but for those who are still coming to terms with it in general, they have our support. Theres no two ways about it, LE SUCKS big time. I could write much of your post. I hear you about the dominant arm and I would suggest that THAT on its own presents a unique and major pain up the butt never mind all the other stuff.
They say: theres only one thing worse than a non smoker telling you it's easy to give up... and thats an ex smoker. Sounds to me like that nurse with the bilat. ("if I can do it you can do it" syndrome) Pretty arrogant me thinks. We are all unique. Your response was justified and bang on. People can be cruel.
Hope things get better for you real soon.0 -
TNNurse, maybe a glimmer of hope? I have LE in both arms and just had DIEP reconstruction six weeks ago. My arms are actually 4% smaller than before surgery. I wore my sleeves in the hospital after surgery and even had to explain LE to the nurses. LE is a royal pain, I hear you, but maybe you will have surgery and your arm will not be any worse for wear.
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I have not seen any study to prove it, but there is some thought that recon surgery may remove scar tissue that has contributed to LE, so sometimes improves LE.
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TNNurse, everything you said is right on. This really sucks. Remember Ingrid Bergman, "you have to bend..."
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Oh, and here's a good thing to say abut the endless questions.
"Medical conditions are between a doctor and a patient."
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TNNurse, welcome! Sorry for the reasons you're here, but you're singing our song. So big, gentle hugs, and looking forward with you to much better days.
Here's an article on dealing with the emotional blow that LE is. You might find it helpful as a lot of us have:
http://www.stepup-speakout.org/patoconnorcopng.htmThis diagnosis is full-on grief, so please be gentle to yourself and give yourself all the time you need to grieve well. The learning curve is huge, and there's a lot of trial and error finding exactly what works for you by way of garments and interventions, but it gets better, honest.
You mention hand swelling with sleeve use. You DO have a glove, yes? Some of us have found we're compression sensitive, so less is more where compression is concerned. In other words, too tight compression (or garments that are made of a heavy fabric) can result in rebound swelling. Good news is, lightening it up can often result in great control and a lot more comfort.
As others have said, reconstruction is definitely not off the table. Moving forward, be sure to ask here and others with experience will give you some of their tips for managing through recon.
I think we've all gone through that "my-life-as-I-know-it-is-over" sense, and the truth is even when we're able to move ahead again it still comes up from time to time and has to be mastered all over again. That's what "chronic" means, I think. It takes courage to try new things--or even renew old activities. But we're all here to cheer you on. Please tell us how we can help.
Gentle hugs,
Binney0 -
TNNurse - I agree my LE arm is now a big consideration in most activities. I feel it has a life of it's own so I named my arm Little Martha. Doesn't make anything better but I can blame things on Little Martha and at least know it's not 'my fault'.
I am not friends with LE but I learned everything I could to at least understand the cause and effect and then learned to tools to treat it. That deep down ache is annoying, MLD helps me, water helps me, then the weather changes and the ache goes away for a time.
I have the Flexitouch and I like it. I don't use it daily but I use it when Little Martha is downright cantankerous and will not behave. Sixty-six minutes calms Little Martha and relaxes me. I hope you find the Flexi as helpful as I do.
At the grocery store, I had someone ask about my sleeve. I was in a aggravated mood and responded 'it's the gift of breast cancer'. The young girl was speechless and I felt like an orge. Now I just say - my arms swells.
I don't know that LE gets 'better' but I get better at dealing with it. You will always find kindred souls on this board. It's not that we have been there - we are there with you.
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TNNurse...so sorry you have to join us Swellies...great group of knowledgable gals her.
My PS is also a NLN certified lymphedema therapist and also does Vascularized lymph node transfers. She only does natural recon with Diep (she also does gap flap) showing some good results for ladies with mild to moderate LE. She said it sometimes helps as the tummy has lots of lymph nodes that the body amazingly can activate when they settle into their new home on the chest. The scar tissue that comes out can also help clear a better pathway thru the tissues. I had bilat diep last Nov and after 6 days leftie failed but during those 6 days she was with me my arm was noticeably better. I have since had the lymph transfer as my arm became so much worse after leftie came back off and the replacement gap did nothing to help the situation. My arm is now smaller than the non affected one.
My response to people I do not wish to give my life story to is in a very nice but firm tone "I have swelling issues" and then walk on my way. When bandaged is the worst...everyone want to know what I did to my arm and some have even eyed my husband like he is resposible. Seriously as you said none of their business.
I totally understand your frustration with LE. It just plain SUX. Big Hugs to you. Venting helps some so vent anytime you need to here...we get it
Maggie
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I am posting tonight for my mother, single right mast 2001, bug bite 2008 or 09 that started her LE. Saturday morning she fell at her house and fractured her knee cap and sprained her right shoulder. When she went to hospital, (my sister took her) she forgot her pink bracelet to warn about LE in right arm but she did tell everyone. After her surgery on the knee Saturday night, I was in the room with my dad when they brought her up, they did have the IV in her left hand and BP cuff on her right leg (surgery was on left leg), I made sure the nurses on the floor knew about her restrictions and they put a notice above her bed with the restricted limb. Yesterday morning, I made sure that dad took her pink band to the hospital and put it on her. She said they are working with her restrictions and not using that arm. I was glad that they listened to us. The cancer nurse has done some informational training with the other nurses to be aware of BC patients.
Please keep her in your thoughts for swift healing.
Sheila
Edit to say I bumped up the 'I was attacked by a shark' thread for quick comebacks when people ask what happened to your arm and you want to stop the conversation.
ss
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Thank you all for your kind words. They did give me my first tears of the day. I am a little less worried about my surgery appointment now. A little less worried.
In response to stranger's questions, I have been thinking. We did not have children, as people began to ask if we were going to, I tried to teach myself to cry on command and make them feel bad. I never did it, but I am considering something similar. Either that or overwhelm them with gory details......I have a wicked streak.
Again, I am most grateful for your words of support.
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Good grief, I'm getting tired of questions! It's partly my fault as I wear decorated sleeves from Lymphedivas, but c'mon! I was at my brain-injured brother's brain-injured facility when one of the residents---who had her eyes taped open!!!--asked me why I had to wear my leopard print sleeves!!
I usually just say it's to keep my arms from swelling but sometimes I throw bc in there. I don't like the pitiful look I get but, hey, women should know what sometimes comes with bc.0 -
I should clarify that a lot of times people think I have tattoos and when they see they're not, they feel free to ask about it. Just don't.
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TNnurse--I am so sorry you have to join us due to LE but hang in there. It helps to vent and have others respond. I am now in a place after 2 1/2 yrs that I do not think about my LE 24/7. At first I did--especially when I was wrapped 24/7 for three months! It is a pain to do all of the work to keep it at bay (Lebed, MLD, day garments, night graments, compression, etc.) but it has become a routine that I do without thinking. I do hope you find the reconstruction surgery that suits you and even helps with the LE. I use the questions about what I have (many ask if it is carpal tunnel!) to educate people about LE. Many have never heard of it or really know about it--doctors and nurses included! Keep us posted. Becky
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Thanks Jeannie and Becky. I watched an interview with Diana Nyad who is my age and swam from from Cuba to Key West this week....her mantra for finally accomplishing her goal...."Find a way". I guess I will have to do that. I am a pretty private person. When I got my diagnosis, my MD made a comment about how public a face I wanted to show the world about breast cancer and I answered that I did not want a public face at all. My wig was very close to my hair and wearing clothes can hide the fluctuating changes in your body, but this sleeve is visible...esp in July and August....nothing is over it. I guess I was not ready to be "public" with my illness. I would not have had any problem with the brain-damaged woman, I would expect that, like with a child. The guy putting up produce in Kroger took me by surprise.
The women on here are a big help and I am comforted by your words.
Alice Beth
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TNNurse, when we were asked about having children I said, "oh we can't, DH is impotent".
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Marple - When we get asked about not having children, our response is, 'We forgot'.
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Hehehe.
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Oh my gosh! Your posts are making me cry and laugh. The responses to TNNurse warm my heart! This place is such a Godsend. I'm still trying to find my happy with all of this LE but am so thankful for all of the advice and support here. (I'm still waiting for someone to ask me why my boob is lumpy (from my swell spot). At least it evens out my boobs!) I'll have to think about a comeback to that question!
TNNURSE , so glad you posted here. (((Gentle Hugs))). It never ceases to amaze me the comments some people make. Especially a nurse and BC survivor! I'm saying my prayers that you find some respite soon and at least some comfort from your sisters here on BCO. Good luck with your recon appt. keep us posted!
I'm getting anxious for my first mammogram tomorrow on my LE breast. (It almost seems pointless to me, between scar tissue, radiation damage and LE swelling-I don't know what they'll be able to see!) I do have an appointment afterward with a nurse practitioner, so that will be nice to touch base.
Hugs to all! 💗Sheila0 -
I don't know how many times Ive socked myself one, but Ive just given myself a bleeding and fat lip from getting my sleeve on this a.m. and I need hubby to help me cuz its probably about the hardest material jobst have made. I love the feel of the extra support but I can do without beating myself up. Grrrr. Thanks LE for your lovely reminders.
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I am angry today about LE. My sleeve fitting was July 12. I missed my appointment in August thanks to the power going out and we over slept. So the next appointment was today. GRRRR The fitter decided to add this elbow thing with out asking me. It did not work at all. If we got the elbow part where it belonged then it was too short on the wrist. For the little bit of time I had it on pulled up in the correct place my wrist puffed up. Oh and all my measurements are bigger than they were in July. puffed up...and passing the brownies. New sleeve is being ordered. I guess I should be thankful that this is the first time in three years that one didn't work. Not likeing the new fitter that insurance approves...did I mention she forgot to order the gaunlet and even lost the notes on the measurements.
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((((KittyDog)))), I hear you! Often they just don't get it.
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Regarding the questioning about having children, reckon an answer that "takes them nowhere and gives them nothing"... is great for nosy people who should learn to mind their own business. I said this back in the day...
Relative:-
"When are you going to have children?"
Me:-
"Thats for me to know and you to wonder about"0
