GRRRRRRRRR I HATE LE..........
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You know, if you get chocolate in England there is no soy in it
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GmaFoley - Good to know!
I have to look long and hard to find some in the States without soy but I HAVE found some and I keep quite a supply. 
Purple - Thinking about you! Any word yet?
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Hi all
Sorry for not popping in soooner. I SO appreciate the well wishes!
Took a second zyrtec and it knocked me out. I was asleep on the couch for hrs.
PCP *thinks* it may be allergy to (???) Nada. Not buying it. He said it could start fading within the hour. That was 930 AM. Nope. He asked if I wanted to go to Baystate ' experts" ...thats where they knew nothing at all on LE and would not do MLD for me. Then he asked MERCY? Thats where they said I had no LE. Boston ????! ( WTH? That would be weeks and weeks from now ) Thats where I called monthhly for 4 mos and expert dr said " No. You cannot have LE." he said :" So you think nobody can help you ?" I looked like a complete headcase when the tears began to fall. I'll be damned , but I do NOT think anyone around here can tell me a thing on this . Nope.I just want to put a stupid frigging sleeve and glove on and go complain about having to do MLD and exercise and not being able to lift my granddaughter, eat salt and yadyadydyadyda and go on my ' happy lymphedema way". This crap is complicated.
My LEist is away teaching MLD.
IF (IF IF IF) this really is an allergic reaction (pool ???) it uire is new. Since the LE I am getting LOTS of redness and reactions but none this long and strong ( usually gone in 2 hrs/ small spot very localized )
This stinks.Keep me in your pockets. I need you. Youre the ONLY ones who understand. Just dont know what to do.
Have both amoxicillin and keflex here , but ...?
Have appt with a dermatologitst MON but I have NO FAITH at all he will know any more.Dont really feel sick. <except to my stomach :>)
PCP said this ' could potentially ' become infection. ugh ugh ugh.,Is this my new life/ my new normal ? Wearing my glove but not sure if I am supposed to. Not wearing sleeve. Wont do MLD.Nonbdoy here knows anything.
Gave DR. SUSO paperwork. Claimed he would have it scanned into my records.
Who knows ? Who cares ?
Hace an internationally acclaimed artist coming into work tomorrow (and all next week) . Dont know what I will look/ feel like.
I detest pity parties. sorry
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Purple, oh man....what a royal drag. I hate it when we are so compliant and then we get stumpified with something strange. Sheesh you got me thrown for a loop. I know my skin can do weird things from pools. tiny bumpy rashes, itchy skin.....Just got a thought ......phone the pool and ask if anyone had a similar reaction or if they have heard of this type of a breakout on skin. I am thinking about you girl. Hugz4u deary.
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Purple, oh man....what a royal drag. I hate it when we are so compliant and then we get stumpified with something strange. Sheesh you got me thrown for a loop. I know my skin can do weird things from pools. tiny bumpy rashes, itchy skin.....Just got a thought ......phone the pool and ask if anyone had a similar reaction or if they have heard of this type of a breakout on skin. I am thinking about you girl. Hugz4u deary.
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Purple you mention you put lotion on it...have you thought that maybe the sunscreen or lotion is what is causing your reaction? Just putting that out there because I had a reaction to lotion and it only effected my LE areas. Took more than a week to improve on steroids. It is possible that you are having a combination reaction that the pool chemicals or making it worse. Good Luck figuring it out.
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Purple how discouraging. This rash, am I correct in thinking you had it before the pool? Hugz and KittyDog both bring up good points and maybe in combination the pool and lotion (or one or the other) have made it worse. Could you get a steroid cream from the Dr. to try?
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Don't give up on the idea of the Dermatologist being able to figure this out. Mine even knows something about LE.
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This rash, am I correct in thinking you had it before the pool?
I had what seemed to be a a (real?) little LIGHT sunburn few days before pool. Was using EUCERIN calming cream. I use that daily with no impact , but have now stopped. Skin is already looking dry.(ughhh) Dr said not to use any cream at all there so I stopped yesterday.
Just called covering doc. He said possibly PREDNISONE(pills) . I dont want it. Ge said they dont like to RX antiBs ( I have some here !) in case of SEs like diahreea! ( compared to possible cellulitis ?) I am extremely tired but am really thinking ZYRTEC . MUST go to work today.Hugz ...good idea but my skin seems hyper sensitive lately so even if NOBODY got a reaction from the pool it wouldnt ease my mind really. They said the pool was both chlorine and salt. Salt w/ LE ????
I dunno'.
Thanks for all your good thoughts. MUST RUN.
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Purple if you feel you must apply lotion, go get some Vanicream. My local Walgreens carries it. It is free of most things that cause reactions. I have been using it for almost 3 years now. Hate it but whatcha going to do with all these new reactions to things. It is also expensive.
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Purple? How are you doing this morning?
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Hi Ladies
Thanks so much for your concern- most appreciated.
I have been in a panic mode that I do not like at all! Dr Finally agreed to bactrum but when I went to CVS I was talking to druggist and she said " Prep. for the yeast infection ...ect .." She said :" If I were you I would tryOTC cortisone cream and benadryl". Looking back, she stepped out on quite a light limb if you will- and knew no hx. Still, I wanted to believe this more ' benign ' thing would do the trick so I left the bactrum there!
The cream actually HAS faded it a bit which I am taking as a good sign, tho' I was so hoping it would be gone this AM. Still there but pink- not red.I am just SOOO tired but I am trying to keep this in perspective. These benadryls etc ... always knocked me for a loop with my low low BP so I am not coiunting this as a symptom. No fever etc ..
I dont feel I am in the clear yet/ not even quite sure I have turned a corner but grateful things are not worse.
I think I will pick that bactrum up today...just in case.
It is all very scary because there is really no DR knowing any more than any of us and I miss my sleeve and MLD! Well, I do NOT actually but I do miss the feeling of protection and compliance it afforded me. I have NO idea when I should begin it all again or when I can safely do so and I keep waiting for my arm to pool just too much fluid and react.
So...I guess I am still in panic mode. I have been through several serious diseases without ever shedding a tear. I didnt blink an eye when they told me I had BC. My husband has pics of me pre surgery and post surgery, smiling, but all of this has me very emotional because I am afraid and feel there are no drs ' out there ' to help.
I think I am doing a tad better- just relaying how it all has been feeeling and how much the support has meant to me..
Thanks Ladies !!!!
PS keep up with your MLD sleeves and exercise w/out excuses- I am jealous :>)
*QUESTION: I have just been looking over my food diary of the past 2 weeks where I often jot little notes down. Seems I had achey arm ( on the ' good side ") and other aches etc ... amd not yet 100% convinced this is not cellulitis . I also seemed to be upping the exericise a lot so was very tired ... Went for MLD on May 10th and had ' slight sunburn" (this ??) Now wondering of the " good professional MLD" stirred things up and it was not really a light sunburn at all. REALLY just dont know. Anyway- As I said , I will p/up bactrim today. However, I had an ONC.DR. Rx me keflex a while back for emergency. IF you had to use one OR the other for cellulitis, which pill would you pop ?
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Purple, this is getting murkier, not clearer for you. I have no clue on the difference between the two antibiotics, so I hope some of our pharm experts will explain, although I don't think anyone but your doctor can give you specific guidance on which to use. I'm so sorry you're not getting clear direction on how to fix this!
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Thanks, Carol. My DR is less helpful than you ladies are , unfortunately. Furthermore, he RX'd thise only to copver himself after nuch insiustence.
Yes, this is why having pre existing conditions make things so hard - murky. I get chills a LOT, I am tired a lot from my low BP get dizzy from the low BP etc etc .. but I do know I reported arm achiness to the LEist May 10th and she said :" No such thing with LE" :>( Of course, I knew different.
Jury still out, I guess.
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'no such thing as aches with LE' --oh my gosh!
Let's ask for a show of hands: How many of us reading this thread experience an achy feeling with their LE?
I do!!!
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Truthfully you are right on.
As far as the LE it sucks I do a little bit of lifting or work and I feel it.
Also behind the back of my right shoulder where the nodes were removed I sometimes get a numbness. What's that all about?
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I know, Carol.
It made me sad since I think SO highly of my LEist. She has made a few other 'remarks' recently that made me realize she may not be quite the guru I have her pegged as ...though she beats anyone I have seen by a mile, and I believe in her MLD. So, that's a lot more than I get with my INS!
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NOT HURT...well there wrong.
As far as meds. Both have their evil side effects...but I would choose Keflex anyday over batrium. If you start it I agree be prepared for yeast.
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Thx kitty.
I asked pharma today and he said keflex is much preferred . At this point, the red has faded a LOT and is a light light pink. I spoke to a local gal who has primary LE and is on prophylactic antiBs after many yrs of cellulitis. She has told me I had lots of symptoms. Still, they could be coincedence ( due to pre existing conditions, lopw BP etc ) At any rate, I asked her if she thought it was a good sign with the redness being all but gone and she said she wouldnt know since she has never ever had cellulitis w/out keflex and therefore, she does not know if it might be possible to still have the systemic 'stuff' going on.
If all that is not stressful enough, my dog JUST leapt up to kiss me (ironically) and grazed my cheek with a tooth (ggggrrrr!) Alcohol, anti B ointment, prayers, fingers crossed and feeling like I must now live in a bubble !0 -
Purple, try the Activa yogurt to head off the yeast. May help.
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Here's a ? I haven't seen. For those that have LE in left hand, what have you done with your wedding rings?
I haven't had them on since they were cut off because of the severe allergic reaction to Taxotere last year. Prior LEist said not to wear them yet. Looking like never maybe.
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Purple, glad to hear the red is subsiding. May this trend continue.
Spookie, some wear them on a chain around their neck. (with bilat. mast.) I had mine resized and wear them on my other hand.
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Hi Ladies, I have been away for a while and am catching up on alot of posts. This is still the place I come for encouragement and education. I learn something new and useful every time I log on.
I 'm having a test called a Lymphoscintigraphy in June before Dr Massey does a breast and lymphatic reconstruction at NOLA. Has anyone here ever had one? The test is supposed to show the whole lymphatic system in detail so Dr. M can see where the blockages and damage is, which sounds great. But the more I read about it, the more painful it sounds. I want to be prepared by knowing what to expect.
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I have not worn my wedding ring. I am considering a re-size and move to the right hand as well.
Thanks, spookie. I have not taken the antiBs. Neck/chest still ' just pink' now.
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Purple, cellulitis doesn't respond to that treatment, so very clear this is something else--maybe allergic reaction, maybe inflammatory. If you're still not doing MLD you might want to start with once a day. Remembering to be very slow and keep a very light touch is hard when you're tense and worried, so make a clear time to do it, play some soothing slow music, turn down the lights and RELAX!
Lookin' good!
Binney0 -
Maxine, welcome back!
I hope someone will be along soon who has had this done to share the details with you. I can tell you how it's done, but no personal experience. The painful part is the injection (between the fingers) of the tracer, which is picked up by the lymphatics and moved toward the nodes. Then scans are done at intervals to follow the progress of the tracer. Dark areas on the films indicate that the flow was blocked, and that gives an approximate picture of the workings of the lymph system. Most of us never have lymphoscintigraphy done because the cause of our LE is known. MLD is easily routed around the obvious places where blockage would occur (scars and the axilla where nodes were removed). But when the cause of someone's swelling is a mystery, lymphoscintigraphy can help determine what's going on with the lymph system and how to design therapy to address it.
In your situation, the test probably has two purposes. First, it shows Dr. Massey where the blockage is more specifically and how your lymphatics are currently working, and possibly how the proposed donor site is operating (assuming they also trace the leg lymphatics with an injection between the toes). And second, since she claims to be doing her own private study of her surgical outcomes, then another post-surgical lymphoscintigraphy scan would show whether or not the transplanted nodes are functional and have improved the lymph flow. Or at least, it would show whether there is an improvement in lymph flow, which could also be the result of some factors other than the viability of the transplanted nodes (clearing of scar tissue, the body's stimulation of VEG factors that encourage new vessel growth, or other reasons we don't even know about--lymphology is still a very young science!)
There's another imaging technique called near infrared spectroscopy that actually shows the flow of lymph in real time--amazing to see! It would be really helpful to have that kind of scan post-surgically to discover exactly what's happening with the transplanted nodes, wouldn't it?! But it's a very expensive technology and not done widely yet. Good things ahead in the future of lymph science!
Do let us know how it goes, please! Be well,
Binney0 -
OK Binney, as you can imagine, I have been DYING to PM you (hourly :>) but striving to leave you alone!
A local gal saw my pics and said the earlier, red(der) ones looked very very much like cellulitis but she too cannot imagine it resolving on its own, though she got me nervous, saying perhaps the skin color is fading, but who knows systemically....She thinks an allergist is another waste and I should seek and infectious disease dr.
In any case, I am anxious for MLD, I will do it EXTRA light this evening. Of course the area is the terminus opening as well.The skin has been compromised/stretched taut and is tender , and I am wondering if there is any cream suggested as safe? With the skin this dry, I would be afraid to go in the chlorine pool TUES> Additionally, I saw a very small ' break ' yesterday in the neck area which I am treating with alcohol and anti B ointment but it does concern me as a (new ) point of entry.
THX so much for all your help!
A POINT OF INTEREST for all:
JUST IN CASE, this proves true, due to the location - I have wondered if my hands are not always scrupulously clean when doing MLD! I eat oranges daily etc etc ... pet the dogs, and on occassion, just do a fast rinse and off to MLD. Never again!0 -
Thanks for the information Binney4. Dr M said we may not need to transplant nodes depending on what the tests show and that pathways can be reconstructed to a degree. So I guess it will be determined on the results. Not looking forward to the tracer injections. Gives me the willie's to think about it but I'll get thru it and hopefully be of help to other women going thru it in the future. The Spectoscopy sounds really interesting. I have a new topic to Google!! Also my PT is coming to NOLA to learn more about new procedures from my case !! That will make post op care so much easier for us both. I'm so blessed to have her and Dr M both on my side
Thanks again!0 -
Purple,
I have been following your thread, and if I understand correctly, it is very likely something other than cellulitis. I certainly hope for you that this will be soon an unpleasant memory from the past. i really feel for you, because the worst is the anxiety and the feeling of helplessness when all those MDs out there just have no idea. (I met one today - head of orthopedics in a well-known hospital who told me straight out my hand LE was NOT caused by constricting the flow in my wrist by ACE bandaging. When I said something that the LE specialists all concur this is the reason, she said they knew nothing. Seeing who I was dealing with - someone who may know orthopedics well but is not only ignorant when it comes to LE but refuses to ackowledge that, I just shut up. No sense in getting agitated when you can't move someone from their point) In any case, it seems that your LET is also not quite knowledgeable. Of course, we get achy arms when overdoing it. I don't have LE in my arm, just in my hand, but I do get achy episodes.That's when I put on a sleeve.
In the meantime, I hope for you your skin is back to normal and that you can go back to "normal routine".
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Dassi, thanks for sharing that discussion with the ortho doc. Absolutely unteachable. I had a frustrating experience like that a few months back with a gyn onc at a famous cancer center who told me they never see LE from gyn surgery (hello?!!), but since the bc patients still sometimes get it they should figure out how to treat it with herbs and spices. I made a couple of stabs at broadening the discussion, but turmeric was her fall-back LE therapy. Have a spoonful on your cereal or sprinkle it on your salad. Hopeless!
Binney0
