GRRRRRRRRR I HATE LE..........
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Thank you for letting me know... I went for a walk with my friend today... thought that would make me feel better... It wasn't that hot and I had everything covered.. I feel real crappy right now.. drink, drink, drink... I am, I am, I am. LOL. I'm glad this won't last..Love you ladies and we just met last week.!!!
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GMA: wow that is so sad! I know that it must really hurt!..I think I might just give her a call and tell her you feel bad that you weren't invited. See what she has to say
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GMA: no one likes to think that they would intentionally hurt someone--it doesn't fit with our internal sense of what's right--if you are up for it, and only if you are up for it, you could let her know how hurt you are. But, be prepared for defensiveness and nonsense, because anyone who would do this to you, is a piece of work.
Bottom line, protect yourself first. You're never going to get this woman to "get" or own up to her bad behavior, and an apology is doubtful, so don't put yourself at risk for any further emotional wounds from her.
Just my opinion.
Anyone who would do this, is best not in your life. But that doesn't stop the pain.
Kira
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Thank you for giving your suggestions with my "friend".. I put something on her facebook like, "Congrats, but I wish you would have told me before posting!!!" then she posted a big defensive rant - like "this marriage is between them and God and just wanted a little family ceremony..I don't have to tell everyone my business." I messaged her on facebook and spoke my mind. I noticed she took her defensive ranting off her page. But I have come to terms that she needed our help when she did and then threw me out like an old dishrag....It is what it is and I don't have the energy, Kira, to let her know in person/phone... I am just really hurt. I will get over it and heal..
Oh btw - I did a little self MLD last night and got nauseous again.. so I think it is moving all that toxic fluid that has been in my breast for a year that is making me sick... I feel better after lots of water... Please just be my friends and stay with me... having another teary-eyed moment this morning. Working at 4 am on the computer - it is so quiet - I sometimes have too much time to think..(I check here on my breaks - which is what I'm doing now).. Got to make DH his coffee and get back to my job..(I do press releases for franchise companies)... Love you all
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I have a question vaguely related to the nauseau/MLD connction...
does anyone get congested when they are having professional MLD? I saw a great private LMT who does VERY thorough long MLD sessions, but about half way through each session, I got so congested I couldn't breathe through my nose. I figured I was allergic to something in the room, and so I stopped seeing her. Then, one time with another LE therapist during a long MLD session, the same thing happened. I don't think it is just lying flat because it doesn't happen when I do MLD or when the second LE therapist uses other modalities (laser, myofascial release) that involve me lying down. Maybe congestion is a sign MLD is working? KS1
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KS1 I've been having stuffy nose issues but I'm sure mine is from everything blooming outside and the wind we have been having.
Binney, Kira or others: If I'm just starting the MLD therapy, can I be more susceptible to getting the LE down my arm if I'm not careful? (its only in my breast at this time) Of course the LE therapist says anytime your lymph system is compromised all it takes is a bump, bite, heat to cause it to get bad.. just wondering if it is time for me to even be extra-cautious until I get myself straightened out..
Good news: I think fluid must be moving - I have lost 5 lbs this past week since I first saw my LE therapist!
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Gma, isn't it astounding how that gentle, non-invasive MLD actually moves the fluid out?!
I was so skeptical at first, I was just lying there thinking, "Yeah, sure!
" Your post just reminded me how grateful I am that this process works so well and hurts so little. YES! on the extra caution until everything is cleared up. But not necessarily because your arm's at any special risk. The problem with any stagnant lymph fluid anywhere is that it's so infection prone. So do be extra careful, keep your skin wall moisturized, and protect yourself from nicks and insect bites and sunburn.
I'm sorry about the tears. The MLD and therapy we do is only half of the issue of dealing with this. The other half is about grieving our losses and the fact that this is a chronic condition. Grieving takes time and doesn't give the quick results that MLD does.
But with time and giving yourself room, it does get better. Hang in there--we're all here with you. Tell us how we can help!
Hugs,
Binney0 -
I'm just so overwhelmed with precautionary sleeves for air flights, paperwork for financial aid because my insurance maxs out a $1000 and compression bras... night compression (Ii swell if I don't) and having to drive 1.5 miles to the nearest store for my sports bra that seems to work..I don't have money to put up front to buy them on the net and then send them back... DH won't help me with the self MLD - he says its not his thing
We do have some Credit on our REI card... We might take that drive to the big city to get compression shirts for night time.. anything else I should be looking for when I go? and should I get a sleeve now or just before I fly in August/Sept.? Edit: One more thing.. My pain management doc has been giving me triggerpoint injections to help the muscles in my neck because of degeneration...Are those BIG no no's right now?
Binney You asked... There it is in a nutshell.
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Gma, the REI trip for a compression shirt sounds like a plan.
Lots of the gals here prefer the men's shirts as they have more room in the axilla and don't irritate that area. And inside-out is good because you don't want the seams rubbing on you. Some women here use sport shirts from Target, which are cheaper, but I don't know the brand. Hopefully someone will come along who knows about that. If you have no LE in your arm, and the sleeve is just for prevention, then it's fine to get it now. That way you can also be using it for exercise and any strenuous activities (vacuuming, hefting groceries, whatever else). Be sure it fits well (get your therapist in on this) and be sure you have hand protection to wear with it (glove or gauntlet).
As for the injections, are these in your neck? Forgive me for not remembering, but have you had cellulitis? (Seems like EVERYBODY has lately!
) If you've had cellulitis before, then you want to be real careful about injections, and maybe talk to an ID doc about that (he might want to prescribe a short run of prophylactic antibiotics). Otherwise, as long as they're not in your affected quadrant you should be okay with it. JMHO, of course--check with the doc. Let us know how you do with finding affordable breast compression. None of this is easy, but with perseverence (and a scandalous amount of money!
) we eventually find something that works for us. And THAT is a huge relief! You'll get there!Hugs!
Binney0 -
Binney - no I haven't had cellulitis and the injections are in my neck and back shoulder areas. He only gives them when I am so knotted up the muscles won't release.
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Well headed for the LE therapist tomorrow........first time back in a real long time, and I mean "real long'..I know the measurements are much bigger, and mine were small...........I just hope they go back, but I doubt it very much.......oh well my fault for being a baby, and saying screw it...............it doesn't pay to get pissed off at yourself and everything about LE...........now I'm gonna pay the price........tomrorow will tell.........wish me luck
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I'm in your pocket Ducky - I will bring cinnamon rolls - home made! Granny can we use your broom!!!!
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Ducky, it is not your fault, never your fault. We all get sick of the chronicness of LE, and we do the best we can.
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the broom is ready for anyone who wants to use it!!!!
now here is my story.I went on monday for 2 doplers one for each arm.the swelling is right opposite the elbow.the veins are fine.had a US on the breast along with a mammo which came back fine...Now im waiting for the script from the Dr.to go to PT.yes a LANA one.
what the hell do i have???????and what should i be doing until i get to therapy?.If i touch the spot it does not hurt but its there.the breast swelling went down as i wore the compression bra for a few days 24/7.even the pain is gone..What is wrong with me?????
i didnt lift anything heavy,didnt even do any housework.help!!!!
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You are so in my prayers Granny.. I don't know what to do but I'm sure Binney or Kira will let you know what to do... I know #1 - stay calm... You can smack me now.... If I had a dollar for every time someone said that to me - I would beable to pay for my therapy LOL... Love you Granny!!!
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thanks for the support ladies...............GMA those cinammon rolls sound delish..................thanks for the treat.................will let you all know what my LE specialist says
Granny............At least your taking care of it.........trust me LANA will tell you what they think.......hugs, and good luck
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Granny, you're doing everything right--and you'll soon have good answers.
Until then, take it easy with the arm, drink plenty of water, stop from time to time and take a few deep abdominal breaths, and elevate that arm whenever you get a chance (on pillows at night). Try not to get overheated (a real hot shower or hanging out outside if it's hot out), watch the salt intake, and get good sleep. I know how alarming this is--we've all been there, for sure
. But they've already ruled out the really scary stuff with the dopplers, US, and mammo. When you see that LANA therapist just remember we'll all be right there looking over her shoulder!Ducky, brava for you!
Can't wait for your report tomorrow! It'll be good,
Binney0 -
Ducky--Can't wait to hear your report. Good luck! I am sure your report will have us rolling in laughter. I still laugh many times at your story of unwrapping at the dinner table.
GMA--Hang in there. I am thinking about you and hope things get better soon.
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Just heard from my surgeon...he just gave my LE therapist ok to work on the fibrosis/scar tissue too
Should I take some pain meds before I go??? And lots of water after? OH My - Ok I'm NOT stressing - it will be good for me in the long run - just has been so painful for so long.. Ducky I'm with you all the way!!!!
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Gma, yes, something beforehand if you can would be nice, but if you do that have somebody else drive.
If it's too much you can always tell her to stop for now and work on it more the next time, y'know? This shouldn't be an endurance contest.And on the other hand, what a relief to have that cleared and all in your past!
Looking forward to that with you!
Binney0 -
Gma, I would think that the therapist would work very gently with you. Personally, I would ave the pain meds for when I definitely need them, but there are also good reasons to "stay ahead of the pain." Still, I would take it as an opportunity to be taught how to relax my body. I think you can tell the therapist if it is painful. I seriously doubt that pain is a desirable effect of the therapy. Later in the day you may have pain or stiffness or other sensations that you might want to pain pill away.
It'll be OK.
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Binney and Dunesleeper- today I can't but will take some tylenol - I do have a pain cream the doc gave me for my breast - I will bring it with and put it on after I guess.. The LE therapist (He) is very nice, I'm sure if I swear (which I only do when it is too much) he will give me a break LOL... I just know it will hurt, it has been that way for a year now, so this will take awhile I'm sure, but will be well worth it. And thank you very much for answering me - I like to know what is ahead of me and be prepared... 0
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Thank you each and everyone of you for all the support.
I did call for an appt.for a LANA therapist and the first appt.is July 9th.
and thank you Binney for all the advice.
GMA---I told you they are the best here.....prayin for you sista!!!
Someone gave me another number of a place closer to my home.I just called and left a message.
Just want to know what the hell it is!!!!!!
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Well I went to my appt...............bright and early..........9am.........If the therapist would have measured me 1 more time I was going to wrap the measureing tape around her throat, and then call 911, and say she was showing me how you measure a "swollen neck".............................Talk about waste and bullshit..............
She told me my arm had not gotten that much larger (the LE side),but the other arm had gotten a little bit bigger......(no Le)...... ........she then took all the measurements to the computer, and entered them........showed me a chart, and figures which I had "no clue" what the hell I was reading..............then she said..........."actually your arm has gotten bigger, but because your other arm has also gotten bigger, the LE arm has not really gotten that much bigger........but if your other arm was not larger, the LE arm would have been considerably larger..............................OK, NOW YOU TELL ME WHAT THE HELL SHE WAS SAYING....what I got was because my good arm got bigger, my bad arm from appearances did not get "much" bigger, but if my good arm had not gotten bigger, then my LE arm got a lot bigger under those conditions..............
Have I confused you enough......................I took my bandages, and the 1/2 ass sleeve I have,and she said to go back to the bandages.............I told her when I wrap my arm, I get this huge hump at the top near my shoulder...............and last time I wrapped, someone asked me if I was a "fill in" for "quasimoto"..........she didn't think that was funny........(no sense of humor)........(actually I thought it was hilarious)...............well anyway.............she said to come back on Monday............I told her I watch my grandchildren now that they are out of school, and she said .........well then come Thursday......(only there 2 days a week)..............I went out to the desk when I was leaving, asked for a Thursday appt, and the receptionist said "she's booked solid for Thursday"..................then said "how about Monday"..................then I said "what about the following Thursday...........she said ..........that is the day after the 4th.......she isn't here...................I said...........Ok, then how about we "forget it altogether"......................walked out and said to myself..................WTF DID I JUST PAY 40.00 CO-PAY FOR........................I DON'T KNOW ABOUT YOU, BUT I'M STILL CONFUSED..
Calling another LE center tomorrow.......................end of story;........................God I hate LE.
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Ducky, the therapists obsess over measurements--despite the fact that there is NO scientific evidence that any measurement is diagnostic of either LE or tells someone when they should get treatment or resume treatment. It is literally a disease without a diagnostic criteria.
So, some therapists literally made up the 2 cm rule--if part of the limb is 2 cm bigger than the unaffected side it's meaningful--yet as Jane Armer showed, 91% of women a at least one spot where there's a 2 cm difference.
And when they calculate arm volumes, if part of your arm--like above the elbow--is really swollen, but the lower half isn't, the volume won't reflect that as it averages the entire arm.
Again, there's this artificial belief that a 10% volume increase is significant, yet studies show 5% is more sensitive.
And for some women, and men, it's the "loss of anatomical architecture"--the smoothing of the elbow, the loss of the veins on the inside of the wrist, the tendons on the hand.
Seriously, there is no way, other than clinical exam and symptoms, to diagnose LE, yet to satisfy insurance, the LE therapists get all hung up on limb volumes.
Right here, on bc.org:
http://www.breastcancer.org/treatment/lymphedema/evaluation/diagnosis.jsp
According to Andrea Cheville, MD, associate professor of physical medicine and rehabilitation at Mayo Clinic, it's important to look at the whole picture: not just size and volume measurements, but the appearance of the limb or other body part. "There is no one value or standard you can use to say, ‘OK, if you meet that you have lymphedema, and if you don't, well then you don't have it,'" says Dr. Cheville. "For example, there may be no size or volume changes in the arm, but you could have subtle hand swelling or pitting on the arm. So it's important not to be too locked into arm measurements alone, as that can create a false sense of security. You also need to be watching the arm and looking for the loss of what we call ‘anatomic architecture' - an inability to see the veins and tendons in the arm as clearly, or less pronounced knuckles, or skin that is less wrinkled and therefore looks younger."
So, where does that leave us as patients? In a place where our therapists and insurance are locked into arm measurements, yet they are just a piece of the puzzle.
And there is NO diagnostic standard. None.
So, often the lack of swelling or the lack of significant swelling is used to deny our reality.
Hey, my left arm is smaller than my right, but I just got cellulitis in my left arm. Guess I do have LE in that arm after all....
Ducky, your frustration is so valid, and it's so easy to get fed up with chasing down therapists who don't seem to meet your/our needs.
Hang in there, and put yourself first, and get the care you need for you.
The confusion is that the therapist got all hung up on measurements and didn't take in the whole picture of you and what you're experiencing, and she denied your reality and spent the appointment assessing you and then isn't flexible or available.
Personally, I adore your spunkiness, and attitude and comebacks--and appreciate the idea of measuring the therapist's neck.
The confusion was her need to quantify something that isn't quantifiable--it is measurable, but that doesn't tell the whole story.
Kira
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Ducky, I've been following your posts and I can understand your frustration for sure. I just hope you don't give up trying to find help. It's NOT easy, nothing about LE is easy. I feel so sad for you tonight. I hope your call tomorrow ends up with you finding your guardian LE angel.
I wish I could deliver a hug to you in person. ((((Ducky))))
Granny, Gma, I just can't understand why we have to fight so hard to find the help we need. It's the same story over and over. Finding a good therapist, getting sleeves that fit properly.........GRRRRRRR I HATE LE.
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Ducky---friend sista...you can crack me up before you post but seriously this damn LANA PT are far and few between....and yes they hardly work.1/2 days here and there and are booked solid.Damn dont they realize we need help now!!!!I sure hope the next one takes you soon.The earliest appt.i got so far is july 9th....please get off your high horse and start screaming like you usually do.i did with the first PT when i first had the edema...well i had a flareup and called her...you guessed it she was booked for the next 2 weeks.she said put on the compression bra.I told her where to go her and the entire place....
I would like to know what they call an actual emergency with either the edema or LE?probably nothing...
And yes Marple...i never realized how much ya gotta fight with this ugly,shitty disease.
CAN YOU TELL IM PISSED?
Come on over Ducky...i got red solo cups waitin for ya!!!!!
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I am so glad I'm not the only one having to deal with this kind of stuff with a pt. Some days I leave the pt place and want to bang my head against a wall. I have problems with the knuckle of my thumb and the pad swelling....my pt wanted to discharge me....uh....no.....not until we come up with a solution to this problem, thank you! I'm sorry, it's just not acceptable to get "most" of the swelling controlled. Grrrrrrrrrrr.....
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Yes, Ducky, we hear and feel your frustration with LE. Stick with us and don't give up and succumb to the LE beast. You will conquer not be conquered! This is the place you need to be, right here for understanding support. Forget all the jerks out there!
A wee something to cheer you up...... Here is a big sloppy kiss for you!
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Looks like many of us are in the same boat...............I decided to call a hospital associated with the hospital I go to all the time for the "cancer"..........I found that their physical therapy and occupational therapy dept. is there 5 days a week, and the hours are 7:30am to 7pm................can't ask for more then that...............I set up an appt. but was sure to ask first..................How good are your LE therapists.........of course she said , we work them hard, but what was she going to say "they stink"..........duh, double duh, Duck.....................
So I have an appt at 8am on June 28th, and will call tomorrow to get my referral, my note from my MO, and all my records from my present LE person.......I will have them all faxed over............so I got the ball rolling from my end, but then again...............It always ends up being me, myself, and I, who take the bull by the horns.......................like I always say, my body, my LE, so I'm in charge...........................Now we will see how it goes...............
Granny, I will be right there with my Red Solo Cup.....................
So glad to see I'm not alone in all this bullshit............but I hate that we have to get together this way
.....hugs0
