INSOMNIACS place to talk in the wee hours
Comments
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Thanks. I keep saying to my husband.."I have to learn to live with this pain for the rest of my life?" No matter WHAT it is from.....it is NEW PAIN....gesh...my neighbor said once you hit 50, things start falling apart!
http://www.youtube.com/watch?v=sSOR7gGk11c&feature=related 18 rules of living a Happy LifeI told him I met this lady on this board who has mets and many others that are seemingly do so well for years! In some ways it makes you sad to know that others have to endure suffering but then I know it goes make to choices we all make in DEALING with the results.
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Here is another article (My husband always has this need to read the paper to me HAHA) Like I never read it myself! .....should Health Insurers pay less for those who are obese, smoke?
Ok...off to get the ol bike down after this TERRIBLE HOT FLASH LEAVES ME! UGHHH
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Nancy, perfectly understandable rant!
And unfortunately not at all an unusual experience. Here's the National Lymphedema Network's Position Paper on treatment, which you can take with you to your next appointment as a talking point:
http://www.lymphnet.org/pdfDocs/nlntreatment.pdfThe Manual Lymph Drainage (massage) ALWAYS includes the trunk (neck, breast, chest, side, back) as well as the arm, so if she is not doing that she is NOT treating the lymphedema properly. If you can't get her to spend the time to do this properly, you might want to look elsewhere. Here's how to find well-qualified lymphedema therapist near you (warning: good training is a start, but if they're not using their training they're still a hazard):
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmLymphedema is breast cancer treatment's "dirty little secret," and it's only when we work together to bring awareness to it that we'll begin to receive the treatment we need. The National Lymphedema Network also has a Position Paper on breast cancer-related lymphedema prevention and treatment protocols for our doctors. It's here:
http://www.lymphnet.org/pdfDocs/nlnBCLE.pdf
And here's a page you can copy off for all your doctors. It was written for doctors by a doctor who has lymphedema:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
And you thought YOU were ranting!
Okay, stepping down off the soapbox! Be well,
Binney0 -
This is such good information. I went to my tennis group and couldn't believe one gal who I hadn't seen in over a year! She supposedly had "shoulder surgery" and I had the bi mx. Her arm was now HUGE! She is a retired PT. Afterwards she pulled me aside and told me secretly she had a history of BC and radiation to that side and after her tennis injury the arm swelled not from the surgery but the HISTORY of the BC. Now she IS a PT and has the knowledge but got this complication anyway... years later!
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Nancy: I am flying this week for the first time since surgery. I ordered a sleeve (was fitted) but I don't know if it will be here in time . . have you had problems with flying without a sleeve? Thanks, Binney, I will read these links . . .
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Lynn, you really should consider spending a couple of days getting used to compression garments gradually before you fly -- say, an hour the first day, then two hours the next, then four and so on until you're sure the fit is good and you're comfortable with it. A poorly fitting compression garment can cause problems instead of preventing them.
Also, if you wear a sleeve you need hand protection -- either a glove or a gauntlet (fingerless glove). Here's why:
http://lymphedivas.com/lymphedema/gauntletandsleeve/If you can't get your garments in time, there are other precautions you can take to protect your arm while you're traveling. Even when you're packing at home, don't heft your suitcase around with your affected arm. Use the unaffected one, or use both together, and be gentle.
Get someone to help you heft luggage into overhead bins or off carousels. Just ask somebody -- there are a surprising number of very nice people in airports
, but they won't help unless you ask them to. Stay VERY well hydrated before and during your trip -- that dilutes the lymph fluid and keeps it moving. (I always tell the flight attendant as I'm boarding that I have a medical condition that requires me to drink a lot of water all the time, and they keep me supplied.)
Stop from time to time throughout your flight and take several deep abdominal breaths (it stimulates the largest lymph vessel in our bodies).
From time to time move your arms and do some gentle exercises. Reach up and make a cat-clawing motion with your fingers and hands; stretch your arm out in front of you and touch your nose with a finger; "pump" your arm up and down while clenching and unclenching your fist. (Nevermind the guy in the seat next to you who thinks you're nuts -- you'll never see him again!
)Be careful at your destination. Use sunscreen and insect repellent. If you're doing any unusual activities (beach volleyball, rock climbing, whatever) be mindful of your arm so you don't strain it.
Have a great time and enjoy every minute!
Binney0 -
Binney: Thank you, I'll call tomorrow to see if my sleeve is ready so I can try it out. I had asked about the glove when I was fitted but they said I didn't need one. I will look at your link. You have given me some helpful information that my PT didn't mention, like drinking water. I am going to Florida, so I will need the sunscreen and insect repellent. Thanks again!
Nancy: I hope your trip goes well. It sounds like you now have a good PT. Mine dismissed me from care, but I may need to go back.
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PTs see many BC patients and need to be proactive to help us. My neice had me as a guinea pig, but I am active post surgery any way. She started my exercises same day post op and I gradually increased them. She sees BC patients only when LE and they have range of motion become problems. It would help if we had a preop consultation so we can take care of ourselves, what to do and prevention of complications. I have LE of only my elbow, but it is manageable. I have chest wall nerve damage so I still cannot do a real bra so I use sports bras...surgeon said it would get better n it is still there!
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Hadley---------- love it that you remember-------I'll relate the story------somebody was really rude to Hadley about BC---------I said then edited it with the following "May I touch you"---That covers the legal thing of assualt and battery. " Tag". That's for those people that think BC can be transmitted by touch. The fact that you received permission to touch resolves the A/B problem and anyone trying for "Mental Duress" created by the tag is going to be laughed out of court.
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mrdrn----------missed your question---- he wants me to take Remeron 15 mg. I'd rather try melatonin first. Remeron i too much associate with real serious wacko's. -------------OH wait a minute, may be I'm a serious wacko...... hadn't thought of that ..........and I love butter on toast. Well I freely disassociate when i can,
Binney---------great info on sleeves.
Nancy------sorry you have been so screwed around with care.
LE the dirty dark secret of breast care . My company that is an all encompassing conglomerate---that owns the doc',s, three hospitals, the rehab in patient facility, 2 wellness, facilities, a wound care facility, DME, homecare and hospice,private duty, insurance comercial and medicare HMO, employes 5000 people has 2-------- again 2 LE certified people. AND the one person that I went to said they will pay for no more people to be certified b/c they don't get a return on the investment. WELL.( with Jack Benny's voice) apparently in my neck of the woods, we don't have a problem. So, there(jack benny again))))))) Well Rochester -Rochester how do we hide this?
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Okay first attempt at sleep---------------L&H's sheila
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I'm from Bradford, PA.
I'm also confused. Need some stage iv friends. Is it a month to month existence?
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meme: I am not stage IV, but I don't think it is month to month. Have you visited at the stage IV forum? There are a lot of neat people there that would answer your questions. I used to live in Bethlehem, PA, is that near you?
sas, I have been putting off getting the sleeve and stuff for LE, but now I see, sadly, there is not a lot of support. Binney was very helpful to me.
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Hi Meme, I'm stage IV.
Love n hugs. Chrissy
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Greetings insomniacs and natural night owls!
Judith
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Hi Judith! You're early to night!
Chrissy
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Good morning, lady nightowls! I have a question. Did any of you have fever and a deep cough during the last stages of rads? I've been hacking all weekend and now have a fever of 100.9
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Hi Rohanna I didn't do Rads to the chest but I think I would get it checked out as any deep cough with a fever is not a good thing!
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Thanks, chrissyb. I'll ask when I get to rads tomorrow. But I only have 3 boosts left and I don't want them to put them off. I just want to be DONE!
What was for tea tonight?
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I made beef and mushroom in the slow cooker for last night and there is enough for tonight as well so I will just be warming tonight......an easy night....lol. I also make chocolate cupcakes with a chocolate cream topping for dessert so tea is done and dusted....we just need to eat!
Sure hope the chest thing is nothing nasty.....good luck tomorrow!
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Hi chrissy--------attempt at sleep went no where----- UGH-----exhausted -----no sleep
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thanks, chrissy. tea sounds delicious. I cuddled up on the couch with cheese and potato soup and settled in for Masterpiece Mysteries. Ahhhhh...hack,hack! The actor in the Zen series is HOT!
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Hey Judith wish you a slow night.
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sas, have you tried benedryl?
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Rohanna----did a search very early on and decided it was not a benign drug that I wanted to be involved with..................why-----I can't remember.
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Also, have to admit still grieving and I have to be beyond sleep need to go to sleep
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Shiela.....get the Melatonin!!!!
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Have you girls ever tried slime soup?
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Chrissy will likely tomorrow, have doc visit in the direction of healthfood/ drug store
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Okayyyyyyyyyyyyy What is slime soup?
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