Here we go

Anonymous

Getting my arm wrapped on Tues and therapist will remove on Thurs to take measurements for custom sleeve. She is hopeful I will not have to wear sleeve daily once swelling is down. I am on cusp of needing wrapping, and last measurements showed arm was slowly creeping upward. Not happy at all. Definitely can feel throughout upper arm, forearm and part of palm. This has been slowly brewing all while I have been fighting Blue Cross for vest and ran out of therapy sessions before end of last year.

Also, my new LE doc is, um, not working out. Met her once, and she and her staff have been difficult to deal with. I won't go into it, but recently (after my winning appeal), there were a couple of communication mix ups between staff and/or doc and me. I thought I might be insulting doc by writing baby-step instructions on what she needs to do to complete process for vest, according to appeal approval letter from Blue Cross. Apparently, that wasn't enough. I had phone call with her and almost lost it several times - her stupidity is unbelievable. She is a LE physiatrist, but I have no idea if she can read, listen or has any attention span. She has set a new low for any experience I have had with a doc. My LE therapist said to definitely bail.




Given my location, I think I need to travel to Kathleen Francis, which is a two hour drive. My old LE doc at Penn still has not been replaced. Problem now is I will be needing scripts for custom sleeve and glove and Solaris night sleeve I can velcro to vest. Hopefully, I will only need to use these during flares and travel. Therapist said I should know how to wrap. Okay, I have script for current round of therapy, and nutty doc has written new script for vest, and that should be fine if she can ever can figure out how to make a simple phone call so Blue Cross can complete preauthorization process and create new start date. What has me concerned is new scripts I will need for arm and hand garments. If I have any problem with approval and need to appeal, I do not want to be stuck with nutty doc. However, I'm sure it won't be easy to get appt with Dr. Francis, and I will need these arm garment scripts very soon. Other possible doc I could resort to would be primary, but she is not up to speed on LE. However, she is sympathetic and probably willing to go to bat. Better choice than breast surgeon in denial about LE. I don't think my onc is quite there either. I will be seeing Dr. Massey at her conference in DC on March 17th, but I don't think I could get an appt with her. It stinks, because she is totally up to speed about LE and she actually knows my history since she did my deconstruction surgery last April. Any suggestions here?




Couple of basic questions about the wrapping experience. Are there driving limitations? Mobility limitations for tasks at home? Can I take walks for light exercise? Anything else I should know? Other than the whole LE experience sucks!

Outfield

Tina, I played a softball game with my left arm and hand (but not fingers) wrapped.  The biggest mobility problem is simply how bulky it is.  Makes anything requiring fine-motor skills very difficult. I had to unlace the back of my softball glove, but I could still squeeze my fingers enough to catch with it.  

The other part is keeping it clean.  Those bandages get disgusting.  I bought some huge disposable and not-disposable gloves for all the things that happen in a house with 2 preschoolers and a very old dog.  I had no problem driving.  

BeckySharp

Tina--I too had no problems dealing with wrapping.  I could drive.  You feel bulky but can push through to get things done.  I also bought some huge disposable gloves to put over hand when needed.  I did do exercises--usually to a point where I was ready to sweat then stopped.  Then did more later to the point of sweat.  I did have two sets of wraps and washed daily.  Sometimes I did more exercise and changed wraps after.  It is doable.  My dominant arm is the affected one so did learn to do a lot more with my left hand.  The more you use your arm in wraps the more it squeezes the arm and helps decrease swelling.

kira66715

Tina, I get all my scripts from my primary, who just does what I ask her to do, with infinite kindness.

You don't need a special LE doctor to write the scripts--although it would help.

I wrap every night, and yeah, it's bulky, but it gives me hand mobility, and it actually feels comfortable. My LE therapist does not like tight wraps (and there's literature to support that) and she has me layer more bandages with minimal stretch to create more bulk. I do a 5 bandage wrap, but that's because I use a 4 cm on my hand--unusual--most people do a 3-4 bandage wrap.

Hang in there, and if you have to spell it out to the doctor with one syllable words, or I've faxed over a "sample" script when I need it, and ask them to sign it, do what you need to do to get her to write for the scripts, then maybe check in with your primary or onc or whatever doctor is most receptive.

Kira

Anonymous

Thank you for the info about mobility and wrapping. Also, Kira, I appreciate your opinion on scripts.




I just did a search to see if there is a lymphedema doc closer to me, and I think my old LE doc's position may have been filled! I will call on Monday and see. Would be much better since all of my records are there. This may have been very recent, as I don't think my LE therapist was aware. Still would take time to get appt, but I might have better luck because of my history with former LE doc.

Binney4

Tina, glad to hear there's a handy replacement doctor! If new doc doesn't work out, the fact is most of us manage just fine with our regular medical team -- you just have to find the one who's sympathetic and either willing to learn about LE, or willing to write whatever you ask her for.

My onc's office couldn't write a passable LE script to save their lives (much less mine!), so I offered them an patient-led in-service, which they graciously accepted. I wrote to every garment company I could find (day and night garments both) and told them what I was doing and asked for samples, fabric swatches, and brochures. Got loads of "show and tell" materials and made up packets for all the staff. I took in my own garments as well, so they finally had a realistic idea of what I deal with. They honestly had never seen a night garment (when you think about it, why would they?), had no clue there were so many options, got excited about the various fabrics, and (probably predictably) fell in love with the LympheDivas.

Magically, I can now get a script written flawlessly, and when anyone has to fight their insurance for LE supplies, the staff there already know why they need a certain item. It is A LOT OF WORK, and we shouldn't have to do this, but I learned a lot and it's saved me a world of hassle. It was scary to suggest it to them, but the garment companies are very helpful (it's to their advantage, obviously!), so it worked out really well

As far as wrapping goes, if your fingers are wrapped it can be frustrating to use door knobs or handle things like jelly jars, because your hand slips. When the wrap first goes on it's dismaying, but as you work at bending and using your arm it does loosen up enough so you can function nearly normally (given some adjustments like rubber gloves around water). Here's the StepUp-SpeakOut section on coping while wrapped:
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#Wrapped_Arm

Keep us posted!
Binney

cookiegal

This time of year it is easier to get an appointment with Dr. Francis...I only had to wait about a month...she is more booked up in the summer.

She is smart about garments, and has been more flexible than I expected.

Her fees are very low for the NY area, but they don't take much insurance.

dunesleeper

Thanks for sharing your experiences.

Anonymous

Thanks, Binney. The training idea is great. Samples of fabric, my own garments and literature would provide a clear picture of what LE is and what is required with self care. You are so smart!




Last night I almost posted a dreary, depressing rant about how overwhelmed I am. This morning I feel much better. I have had many things to be stressed over, and worrying about my arm just adds to the pile. I have been doing MLD before I get out of bed in the morning, and that seems to help me start my day on a good foot. It is calming, requires my thinking about what I am doing and prevents my mind from immediately going into endless thoughts about the day. I think the actual process of MLD and the clearing it provides also helps me feel better emotionally. We've all talked about how flares seem to have an emotional effect on us as well as physical, and I really think this is true for me. I am a novice about arm MLD, and it isn't second nature to me yet. I am unsure at times where I am on my arm, what is actually front and back. Does that sound stupid or what?! I have also been doing some of the exercises described on SUSO, such as the cat scratching, the queen's wave, and the usual arm above head opening and closing fist. I also tried seated bouncing on my large exercise ball with both arms above my head. That actually felt great!




Cookie, thanks for the info on Kathleen Francis. Until I learn more about the replacement for my LE doc at Penn, she is still in the mix. I appreciate the heads up about insurance and will have to inquire about that. So good to know she is smart about garments.




I appreciate the feedback and support, as I feel like I often come here and don't always give very personal support, but rather discuss issues that get me all hot under the collar. But I learn so much from all of you and feel such a strong connection to this group.

Kicks

What I found that worked great for when wrapped or have sleeve and glove on and need to get busy in a hurry do 'veternary' care, (or doing anything that is wet or dirty) is the shoulder length exam gloves. They are just like the disposable gloves that just go up to your wrist but up to shoulder. They can be gotten at pharmacies usually but are cheaper at feed/farm/ranch stores. It's been a while since I bought any but the last were about $6 for 10 of the ones I like (sterile/surgical ones are expensive) and they come in sm, med, large, X large - small fits me great without a wrap but X large fits over a wrap fine - well actually large would probably work but I've kept small for me and X large for Hubby for years so just used what I had on hand. They can be used more than once in most cases if just using for household or yard stuff (I never use them more than once when dealing with animal care/injuries) but are not as thick and clumbsy as dish washing gloves and do cover all the hand and arm.



Just something to think about.

Anonymous

Such creative ideas for keeping bandages dry! We do have a feed place not far from us, so I will give them a call. Still farms in the area, and I think my vet's partner had worked with horses and other large animals, so he might be a good resource about where to find.

kira66715

From SUSO, where to buy vet gloves

http://marketplace.dvm360.com/Community/DisplayAd.asp?id=1157

 Here's another site with prices

http://www.valleyvet.com/ct_detail.html?pgguid=30e07905-7b6a-11d5-a192-00b0d0204ae5

Kira

Anonymous

Thanks, Kira. Did you guys use the regular size shoulder glove or the women's smaller pink version? I'm guessing the regular/mens size to be safe? I do have a small arm.



Just realized I might be wrapped for Dr. Massey's LE conference in DC on the 17th. Hmm, hopefully it will be warm enough that I can wear my down vest. I don't have any jacket with a large sleeve. Guess a men's sweat shirt from Target. So fashionable!

shadylady1

Hi Tina!  I am going to attend the conference in DC as well on the 17th!  I live in Richmond.  Are you staying at the Four Seasons?  I am heading up on Friday after work and staying at the Westin in Georgetown.  I had a lumpectomy and I understand the first half is about breast reconstruction.  I am really looking forward to the lymphedema section which is the second half!  Hope to meet you!

Anonymous

Shadylady - Glad to hear another BCO gal is attending Dr. Massey's conference. We are staying across the bridge in Rosslyn. If it's nice, I can walk to conference, little over a mile. We wanted to be close to Metro for other sightseeing. Arriving early Fri afternoon and leaving Sun, so we will have some time to explore. Always love DC this time of year.




Shady, I will also have my BCO name on name tag, although if my arm is wrapped, I might be relatively easy to spot! Did you have reconstruction with Dr. Massey?

BeckySharp

Tina--How are you tolerating the wrapping?

Anonymous

Becky, I'm not wrapped yet. Right now I'm trying to prepare so I will have useful things I need, but I don't know her plan as far as length of time for wrapping. Immediate goal is to measure me Tues morning, then wrap, return Thurs and she will remove and take measurements again so we can order custom sleeve. I am not sure whether she will rewrap, showing me how to do so I can redo myself over w/e until next appt? Thanks for asking! I will let you know how it goes!

Anonymous

Well, Dr. Francis had a couple of cancellations, and I could have had an appt this week if it were not for my appts with my LE therapist for wrapping. Instead, I got an appt for the 12th, which is still pretty amazing. It is late enough in the day to give me time for the two hour drive there and perhaps return home before traffic gets insane. We'll see. Cookie, you are right about the insurance - I can submit for out-of-network reimb but they want the fee up front, check or cash. Preliminary eval is kind of pricey, but I consider this an investment in my health. Oh, and I learned that my old LE doc's position is not/will not be filled. There is someone there but no experience in LE. I thought I saw another person's name mentioned who had LE experience, but when I called, I was told no LE doc. I think they must be referring out to another hospital that has some kind of connection. I will research, but in the meantime, seeing Dr. Francis will help tremendously with peace of mind and new scripts for arm and hand.




Why does it seem to be all or nothing when it comes to quality of care? In a way, it is good, because bad care is a lot easier to spot, red flags all over the place. So, you waste less time and move on. Conversely, you can tell immediately when you're in the hands of an excellent doc, it makes a difference physically and emotionally. I have heard wonderful things about Dr. Francis, so I am feeling optimistic.




By the way, my back has been hurting me terribly this week - don't think LE is causing it. I was a little leery about going for myofascial while I am having such a flare, but by the time I got off the table this afternoon, my trunk felt so much better. I swore I could feel the difference in puffiness. My arm felt better, too. I don't understand this, but it works for me. He showed me a way I could somewhat replicate the way he stretches and opens up my trunk, armpit and arm. I am thinking that a lack of stretching could really be messing with my LE. I think once my LE is stable that I should try and find some safe yoga exercises. Oh, and back to the Lebed I had been doing for a while. Kira, Nordy and Carol, you need to kick my butt and light a fire under me!

carol57

Tina,  No reason not to re-start Lebed now, even while your LE is giving you fits, no?  And the stretches you learned today? Seems neither would make your LE worse and both might help, and would certainly help your back.  (Now, just dust my footprint off your butt.)

Carol 

BeckySharp

Okay Tina--we need to start a "I did my Lebed today" thread.  I have been faithful but some days it is hard.  I have a nephew with Cystic Fibrosis and his life is on the line if he does not do his treatments twice daily plus a lot of exercise where he is out of breath.  I figure if he does this daily and has been doing so since he was two (he is now 24), I have no right to complain starting at 63.  He is my inspiration especially as I would not let him off the hook when he would complain about it.  He says this is my payback for watching him do exercises when he was little rather than doing them with him.  I always feel so much better after Lebed and other exercise so why do I dread it?

kira66715

Becky, I haven't done it for a long time either. I need some strong foot prints on my butt also, and the dread has something to do with the creepy nature of the class--hard to figure out.

Suzy said it made her feel a million years old.

Kira

Anonymous

Becky, what a great example your nephew is. Really, we are in the same boat, as it does effect our immediate and long-term health. I agree about checking in - a while back I had planned to start a general "I did my exercise today" thread where we could post Lebed and other exercises we had completed, even MLD. Unfortunately, I fell off the wagon, so I didn't do it! :-) FYI, I refused to take my new bike out of the dining room all winter, just so I have a reminder there is some form of exercise I enjoy and can look forward to!




Okay, Carol, I will restart the Lebed. I will do it later today AND post a thread to kick it off (making myself accountable here). I am so with you on the creepiness factor of the DVD, Kira. However, if we do it often enough we will learn the steps and can turn off the sound!

carol57

...and I thought I was the only one who finds that DVD creepy! I don't do Lebed very often, because aside from the creepiness factor, I find I get the same benefit from the stretches I normally do before and after the daily workout. Like Becky, I am doing about an hour of cardio six days a week, and three days a week I am in the gym lifting weights. I do MLD after weightlifting once home, plus on waking and before bed every day. Somehow the thought of turning over yet more of my day to LE--well, just cannot go there, so no Lebed. I did do it last night in a hotel room after getting an achey arm from flying, and sometimes while traveling for work when I don't have access to a fitness facility. I am in awe of all of you who must also find time for wrapping in addition to MLD and exercises.



Nitocris posted some lymph exercises a while back (drawings we can follow). Maybe someone can find that post and put the link here, as an alternative to Lebed.



I have seen people do tai chi in the airport, standing in some corner and seemingly oblivious to onlookers. Not sure I would do that, but maybe, if my arm continues to tingle from flying. (Don't anyone hold your breath on that one!)



Carol

BeckySharp

I have a hard time pacing the exercises so I turn off the sound on Lebed and listen to the news as I do it.  That way I go I the correct speed. 

Anonymous

Dammit, Carol, I should be shouting hurray for you and Becky, but all I can think of right now is what a stupid slug I have been. I have wondered if my arm issue is due to my less than ideal compliance with exercise and MLD. I am much better with MLD and wearing compression than exercise. I guess this is my freakin' wake up call about being diligent with self care. I'm not making excuses (I guess I really am though), but I am having a hard time being diligent with any area of my life. I feel worn out and tired of everything being difficult and having to fight for stuff for several years. And my responsibilities extend beyond my own care, and I have financial, legal, and health issues surrounding my mother who is many miles away from me. Okay, I am verging back onto that dreary kind of rambling I almost posted the other evening. I hear Nordy's story, and who am I to go on and feel sorry for myself. And then when I'm not feeling sorry for myself, I am on my soapbox about the irresponsibility of PS's and implants, or doctor's ignorance about LE. I have such anger and sadness still. I gues I am having a meltdown right now after having been wrapped for several hours. Outfield played softball with a glove on her bandaged hand and arm? I can't imagine this right now. However, I will do the Lebed later and start the exercise thread. Oh, man, right now I want the old me back so much.

Binney4

Aw, Tina, I hear you. Grieving is hard work. Hang in there! "Excuses" are fine; rants are fine; soapboxes are fine; rambling is fine.

Beating yourself up is NOT. Please take good care of you -- you really are worth it to us!
Gentle hugs,
Binney

kira66715

Tina, I wake up with a wrapped arm, and I am TICKED. I can't just jump out of bed. And the Solaris doesn't do great things for my hand, and the jovipak leaves me with a pod hand--so strong impetus to wrap, but yuck, yuck, yuck.

I am sick and tired of being defined by LE. 

I think we get discouraged because a chronic disease is discouraging and it's chronic!

I wish I was exercising like Carol and Nordy. I am riding the exercise bike every day, because I've slowly gained weight on tamoxifen/being in my 50's and it's uncomfortable. 

Tina, Binney quoted a woman once who said she was "sick and tired of being sick and tired" 

I think that's where we're at. 

Taught at the medical school today: all about medical errors and doctors saying sorry, and it's a tough topic for me, and I try not to get too wound up about it. One student totally cracked me up though: he talked about taking a course in middle school about "adolescent behavior" to prepare him for high school and it was all platitudes and no preparation at all, and the students were fascinated with the topic, but felt the presenter didn't delve into the reality of the situation.

I kind of had to sit on my hands (Is that good for LE) so I wouldn't turn all Linda Blair and spin my head around and spit pea soup, because this topic of medical error and doctors saying sorry sure does push my buttons.

Kira

BeckySharp

Tina--I remember the first day of wrapping wondering if I could do this.  It does get a little easier.  Complain away.  We understand.  I remember how hard the Lebeds were with wrapping.  Plus we have real life going on outside of us and not always the way we want.  I feel for those like Kira and Binney who have to continue wrapping.  Becky

kira66715

Becky, I do wrap every night, because I haven't found a garment that works well for my hand, but it lets me get away with little or no compression during the day. Still sucks though.

I re-read the Andrea Cheville "Understanding Lymphedema" on LBBC and she said:

There are a variety of nighttime compression
devices. The recommendation is for women to
wrap every night. It's very, very hard to maintain. I
can honestly say, with no exception, I've never had
patients who could keep this up. As a lifetime
activity, it'svery,very tedious. .
.
Fortunately, they've developed what we call
"alternative compression devices,"things like the
ReidSleeve [and] CircAid. Medi is a similar device.
Solaris [is] a company that makes what are called
Tribute Garments. These are alternatives to
nighttime wrapping, much easier to don. They are
bulky. Usually they are bulky. I have found that
[it's best] if my patients can alternate [this
treatment with] bandaging because being able to
bandage well is a really essential skill set in long-
term lymphedema control. Like anything, ifyou
don't do it on a regular basis, you lose your edge.
Do bandaging two, three, four nights a week, and
then alternate that with use of a compression
device that is much, much easier to don, and then
[use] MLD as needed.

Well, Andrea Cheville has met me, and I'm the exception, but I do have a Solaris and a jovipak, and if they only worked as well as bandaging, I'd wear them more often.

Very, very tedious is an understatement....

Kira

carol57

Every one of you is totally inspiring--and by that, I mean it's not about staying faithful to an exercise program, or to a wrapping or MLD routine. Falling down on those jobs simply proves you are human.

What amazes is the tenacious commitment all of you have to pushing for access to treatment, pushing back against being dismissed, and sharing, sharing, sharing: all of you give your time and experiences here; Kira and Binney, you give heart and time to larger advocacy and education work; Becky I'm thinking of your amazing results staring a support group whose attendance is really taking off; and Tina--your dogged persistance in making the insurance company listen!  Yes, you had help from an advocate, Mr. Weiss, but he could not have helped you without the steps you took on your own, the records you kept and just the fact you muscled up the gumption to say no, I'm not giving up, and searched out the help you needed. Kira and Binney put so much time into reaching out to all of us that well, it's astonishing there's time for the mundane daily life tasks-just brushing and flossing for goodness sake--without imagining there might be time left over for a little cardio romp.

As for me, honestly it's easy to stay pretty positive and motivated, because a) I haven't had to deal with LE very long; b) my LE is mild--annoying, but no wrapping required; and c) I got to 'skip' the BC part of this journey, taking the easy route of prophy bmx.  In the realm of how life tries to beat us down, my experience has been a walk in the park compared to virtually every other woman who joins us in the LE forum.  Even LE hasn't had long enough to wear down my batteries. (Yet)

So, wrapping and MLD, yes, push yourselves, and of course, try to work on more exercise. But...I hope that when discouraged, you're not too hard on yourselves. NOBODY manages 100% compliance on what we SHOULD do in life.

Ladies, pat yourselves on the back for all that you do every single day to slap LE in the face. The bonus: back-patting works the triceps and scapulae...

Carol 

Anonymous

Funny how a good night's rest makes one feel better, no? I truly think I get in these emotional fits when I am swollen and miserable. I just lose it. I was also feeling quite claustrophobic by yesterday afternoon. I give you guys who have two or three week intensives that involve wrapping so much credit! If that is what I need to do, I will. If not, then I will consider myself lucky and quickly do an about face and get diligent on all fronts.




I can really see how wrapping at night would be the most effective, Kira. Like having a new custom garment each evening that meets your precise needs. After this experience, I will be eager to learn how to wrap, and even when I get a Solaris sleeve to attach to my vest (whenever I get that), I am definitely going to stay in practice on how to wrap. I do get why it is the gold standard. Waking every morning to it? Can totally understand being ticked, not fun at all. Your teaching certainly does require a certain amount of self control, but I know the info you consciously choose to share about LE is invaluable to your students. Your phrase "turn all Linda Blair" made me laugh! Thank you so much for your understanding and support.




Binney, your encouragement made me cry. You always know the right thing to say, and you definitely can spot when I am beating myself up. You were amazing after my deconstruction surgery when I had worked myself into a dark hole, and your comments helped me refocus and get back on track. I love you for your ability to see through my junk and spot the real me. Thank you.




Becky, thank you for your support, and I hope so much to have the chance to meet you in K-ville and attend a meeting. After I post this message, I am going to do Lebed and come back to start the exercise thread. Just knowing you did it wrapped is encourages me to do it. I didn't do it last night, but I will shortly.




Carol, I'm sure you still had to make a tough decision even though you were able to avoid some of the pitfalls of BC. It was a loss, and I'm sorry that LE even had to touch your life given that kind of choice. While I wish you didn't have to join our "swell" group, I'm sure glad you're here. I love your enthusiasm and motivation - for exercise and bringing proper training to your area, and in your work of collecting stories to help demonstrate to insurance co's what a hardship LE can be. Thank you for your encouragement and the reality check on compliance. Now, excuse me, but I have a date with a creepy DVD! :-)