GRRRRRRRRR I HATE LE..........
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hello everyone, I am so glad I found this thread where you all get how awful LE is. My turn to vent now I HATE IT AND WHAT IT HAS TAKEN FROM ME. I feel like the bc and now this horrible LE is defining me as a person and I was so optimistic about the future before LE and now I just don't care. i hate hate hate feeling and looking like a freak and it has totally taken over my life such as it is now. Luckily? for me I still have full range of movement and not much pain more like discomfort but it's so time consuming managing it leaving me no time for doing my favourite thing..knitting tiny little beanies and booties for the preemies. I am seriously considering giving up my job which I like and am good at so that I can have time for me as between travelling to and from work and work itself and all the OT and PT and self management I HAVE NO TIME FOR ME. everything about this disease is terrible..do I feel better for venting, not really but thanks for giving me a place to do so.
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I am recovering from the flu. I shouldn't have gotten it , spouse was supposed to get the flu shot, ( I'm allergic to eggs) he didn't. After 4 days of fever, constant coughing, very possible broken ribs and an inability to breath......everything I accomplished to reduce my edema and improve range of motion in my shoulder is just gone, I have to start over. I really thought I was getting a handle on this. There's no break for illness, somehow in my stupor I should have still done all the exercises and MLD? Feels like no matter how hard I work at this Ill be one mistake away from LE controlling me instead of me controlling LE.
THIS SUCKS!
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sorry Susan, I get it! me, worked out at the gym with a trainer last week and she had me doing new stuff which messed up my back! told her, so she gave me a new session, no charge and did different stuff to supposedly help with balance. yeah, one week later and the back still hurts so going back to my old routine!
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I am so sorry Susan. I am dreadfully afraid of breaking my ribs. I have a lot of mets there, so I'm terrified of vomiting or coughing. So I am really really sorry you went through this. Flu and virus is very bad this year. Even if hubby had gotten the flu shot, it could have happened. They are saying the strain that is out there is not in the vaccine. I hope you don't have any broken ribs.
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hugz and sharon....oh yes. Lots and lots and lots has gone on. This blood clot is mammoth. Truly massive. It goes all the way from my husband's foot right to the groin. Not surprisingly, some did go to his lung and he ended up with pulmonary embolism and they put a filter in. Hunting went off the chemotherapy after eight rounds. It was wiping him in an unbelievable way. Has many complications now including our lovely friend lymphedema. Thanks for keeping me in mind and still thinking of me. I'm hanging in.
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oh purple,, I'm so sorry to hear this. That is a HUGE clot.
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purple, prayers for you and hope your DH comes through this all well
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Has anyone heard anything about GmaFoley since her surgery? I know she wrote about having less pain already, and I hope that continues.
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Gma did post on another thread. I hope she won't mind me forwarding. Path report was clean - hooray. She has very little energy at this point.
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Thank you Minus, you can update anytime for me
Sorry for not updating sooner - I have had alot of pain since surgery. I ended up with an open wound on the left breast and have to treat it everyday. The right radiated breast is healing fine (that so confused the doc. he was sure that is where my complications would arise) I am starting to feel better. Just really tight across the torso and the breasts are starting to wake up. Arms have not had any swell, but my torso is a mess. Until the open wound is healed, I'm at a standstill with treating the LE, I think. A month post op this thursday and barely moving, doing my home computer job and sleeping the rest of the time. I am not able to pull on sleeves without pulling on incisions. So not wearing my sleeves. Not sure what to do at this point except rest and keep arms as elevated as possible. Now for the good news - my neck, clavicle and shoulder pain are basically gone. Still waiting judgement on the horrible nerve pain I've had in the breast for 3 years. I think the other incision pain might be overpowering it, but atm, I don't feel the nerve pain anymore.
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Gma,, it's been a rough road. Glad some of the pain is gone,, and hope the rest gets better as you get longer from surgery. UGH on the open wound!0 -
I'm hoping the pain continues to recede--all over. It definitely sounds like you've had quite a struggle. Rest and get well soon.
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Well, I tried to sleep but couldn't. I'm cold and I hurt. I'm in Berkeley Springs, WV and staying at a B&B. It's an old Victorian. It was warm enough during the day but brrrrrr now. It's supposed to snow tonight and be in single digits. Brrrrrr. I had a massage today. I told the girl about the cancer in the ribs and the LE. I thought she was touching too hard but kept quiet. Well, now I know. People with LE should not get massages from non-LE specialists. Live and learn. The arm, the trunk, and the foob. Ouch ouch brrrr brrrrr. I will feel better tomorrow. I will feel better tomorrow. I will feel better tomorrow.
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Dune, my massage and LE therapist says as long as you end the session with MLD, the massage is ok. But you definitely have to end with opening the lymph zones at the end.
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@dunesleeper, Do not keep quiet! Just because our repressed mothers tried to teach us to be quiet and hope for the best doesn't mean we should have learned that lesson. Sorry that's really a message for self, just thought you could use that message too. I hope you got some sleep and feel better today,
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Thanks for that tip Gma and that advice Susan. I'm feeling much much much better today. Part of that may have been the pain meds . LOL. Whatever. I had a great day today. I wore my new sleeve today and the compression was a good bit tighter than my old ones. Boy they really do lose their compression! It felt great.
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Proud and glennie
Many thanks for your messages. I appreciate it.
Thanks too to those who sent PM's and as always, to our resident expert ...BINNEY!
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Purple, so glad to hear from you, I often think of you. GMA and the rest of you gals do treat yourself to some chocolate
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Haven't updated you all for a while. Still dealing with open wounds since my surgery and can't do the motions to put on my sleeves. My torso is swollen and upper arms are starting to be affected. PS says I can do MLD, but most the motions take reaching across my body and that stretches the incisions. My nipple incision opened 2 weeks ago so now I'm kinda afraid to reach in any form.. I do my belly breathing and open my inguinals. I see PS again today to look at my wounds. So much for a smooth quick recovery - I'm 5 weeks PO on thursday.
.. Still not driving and just doing my computer work then resting. I did start watching my protein intake a bit more thinking I wasn't getting enough protein to promote healing. As of yesterday, the large wound looks like it is healing better. I was substituting chocolate for protein... Thought I might have to stop the comfort food for now and eat what I'm supposed to. LOL0 -
GMA, sorry your healing is slower than you had hoped. More protein sounds good, maybe you could get (or have someone buy you) some of those protein drinks? doubt you feel like cooking but the shakes might be better for you than the chocolate but the do have flavors?
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For me, using diet and exercise to help heal myself makes me feel like I have control. I like that feeling. Living with my mother I have lost nearly all control over my diet, and after the stage iv diagnosis I stopped exercising, but I'm starting to get back to it and after I put her on a plane to FL the end of the month I will have 2 weeks to eat what I want, how I want, when I want, and where I want. Yes!
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PS said that even though the wound looks gross, its healing nicely. He would rather let it heal naturally than to intervene (another surgery and skin graft). He took a staple out of my side (where drain was) and more stitches out of the nipple and said that one of the stitches is probably the reason for the hole. He removed it and said to keep up with the wound care and it will be healed soon. I see him in a month. No limitations, just "let pain be my guide".
Proudtospin, I have to watch the protein drinks, but I have found a few without soy protein isolate. I would just like to EAT the protein than drink it LOL.
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Gma: I use Naturade Vegan Smart all-in-one nutritional shake. No soy, no dairy. Non-GMO. 20 gm of protein per shake. But I do understand about wanting to EAT the protein!!0 -
GMA, I get it on eating the protein rather than drinking it, have never gotten into the shake stuff but, dang but I eat too much!
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Gma, what a struggle!
I'm sorry it's been so hard, but glad to hear the PS is seeing good healing.I just wanted to suggest that there are a few kinds of garment donners that might help you get those danged sleeves back on. The Easy-Slide Arm is a good one. I use the EZY-As and love it--takes all the struggle out of getting dressed, plus I never slug myself in the face anymore. ;-)
http://www.lymphedemaproducts.com/products/donning...
Get well quick! Gentle hugs,
Binney
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Last week I walked about 5 miles and when I got home my right hand was swollen and was painful to touch, same side as ALND. As I cooled down it went back to size. When I do the 2 mile walk it doesn't happen. I have a sleeve but when I got it I was about 10 pounds lighter. When I put it on today it was pretty tight. I can get it on and off fine. I just don't want that to be too tight and have a negative effect. I'm very unfamiliar with lymphedema so I'm unsure if I should wear it or not when i go for my walk today. Thoughts?
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jenjeni, do you have a gauntlet to give compression to your hand? If not, the sleeve can push fluid down to your hand, and especially if it's too snug I'd worry about that. If you do wear a gauntlet, then an alternate strategy is to try using walking poles, so your hand and arm are supported. Another tactic that we've discussed in the past is to put your arm in a sling -- use a scarf or something, or maybe even just rest your hand in a jacket pocket. I know myself that I'd bristle at these last two suggestions, because when I'm walking, I want to pump my arms so I get a better cardio benefit from the walk. But you sure don't want to get fluid in your hand, where if it takes root, it can be hard to remove.
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jenjen
Carol is right ! ( I have LE in the hand) Check out gauntlet or glove...very important!
You may want to "Build up' in your walking or chunk your exercise in shorter bouts as it seems (for your body and LE etc ) you just might be doing too much at once right now.Good Luck to you.
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Just letting all know that I haven't changed my mind. I STILL HATE LE more than a thousand procupine needles stuck in my eyeball.
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Hugz4u.....I also HATE it....especially wearing the Garment then Night compression.....it all SUCKS!! big time...Liz0
