well, dang

Options
Leah_S
Leah_S Member Posts: 8,458
edited June 2014 in Lymphedema

...or other, more profane words.

My arm is swollen. I'm having trouble even saying the words "I have LE". It's my upper arm. I was suspecting something was going on lately, was at the onc yesterday and said "I think my upper arm might be a little swollen". What I wanted was for him to say, "No, it's not" or something along those line so I could continue on my cruise on DeNile. What he said was, "I can see that it's swollen". Um, thanks. I think. Anyway, went to my pcp today & she referred me to an LE therapist.

I read the Step Up Speak Out section on what to do before your first LE appt. So now, a few questions.

It says to elevate the arm on pillows while sleeping. How exactly do I do that if I'm not sleeping on my back? I usually sleep on my side and have trouble sleeping on my back. I can't sleep on my stomach at all.

I have a sleeve & glove that I used last year for flying. Should a wear it now? Part time/all the time?

Anything else I should be doing?

This is as difficult to accept as the mets dx.

Thanks for any help.

Leah

 

· Share on FacebookShare on Twitter

Comments

  • lisa-e
    lisa-e Member Posts: 819
    edited November 2010

    Aw Leah, I am sorry.  

    It is good you have a referral - how long before you see the le therapist. 

    Re your questions, you can elevate your arm if you sleep on the side that is not having problems.  Put a pillow between your body and your arm.  Another alternative is to use a body pillow - drape your arm over it. 

    I don't know about wearing the sleeve at this point - is it still the right size, etc?   If I were in your situation, waiting to see a le therapist, I think I wouldn't wear it but would monitor my arm carefully in case I was developing a case of cellulitis.  If you are, that is an emergency. 

    · Share on FacebookShare on Twitter
  • Binney4
    Binney4 Member Posts: 8,609
    edited November 2010

    Leah, I'm so sorry.Frown And I can just taste your disappointment with the doctor's confirmation of the swelling.Tongue out

    But there's good news here -- you've caught it very early, and that will be a huge help to gaining control of it and keeping that way. Also, you're already so aware. This is all good. And, hey! You've got us right here with you, too!Kiss

    Here are some pictures of sleeping positions for back and side both:
    http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#sleeping%20positions

    And I agree with Lisa about not using the compression garments now -- with new swelling they won't fit correctly and can cause more swelling.  Instead, just use some of the suggestions you were reading from the website. Once you start the gentle MLD massage you'll see good progress on the swelling.Smile

    I hear you on how difficult this is to accept. It probably won't help to tell you that it gets easier, but I'll tell you anyway: Leah, hang in there, it gets easier, honest!

    Please do tell us how we can help. Hugs, prayers,
    Binney

    · Share on FacebookShare on Twitter
  • kira66715
    kira66715 Member Posts: 4,681
    edited November 2010

    Leah, just wanted to say that it stinks, but you'll get it under control quickly.

    We are here for you.

    Sorry you seem to be joining the club.

    Kira

    · Share on FacebookShare on Twitter
  • sushanna1
    sushanna1 Member Posts: 764
    edited November 2010

    Leah,

    No advice except to say that once you learn how to manage it, you will feel much better about things.  Hang in there.

    Sue

    · Share on FacebookShare on Twitter
  • apple
    apple Member Posts: 7,799
    edited November 2010

    aw Leah, I'm sorry.. hope it get under control soon.

    · Share on FacebookShare on Twitter
  • kcshreve
    kcshreve Member Posts: 1,148
    edited November 2010

    One of the hardest things for me initially was understanding how LE works, so I could get a degree of control over it, so I could feel like I could manage.  The learning curve is a bit different, since the lymph system does not work like bones, muscles or joints.  With the help of a good LE therapist and the experienced voices here, it is possible to get your condition within a range of workability and to feel that you do have some control.  That said, there are many times we flare for unknown reasons and there are some very frustrating days.  But moving forward on the learning curve can be helpful.  Having to wrap your brain around "chronic" is another thing.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2010

    Leah, just wanted to say I'm sorry and that you've come to a great place to get a lot of excellent info. 

    · Share on FacebookShare on Twitter
  • molly52
    molly52 Member Posts: 389
    edited November 2010

    Hi Leah,  sorry to hear that.  It sucks.

    I saw a lymphodema specialist a while back and her treatment was so gentle and relaxing, I could have stayed for the rest of the day.

    · Share on FacebookShare on Twitter
  • ravdeb
    ravdeb Member Posts: 3,116
    edited November 2010

    Leah..hang in there. Sorry to hear...

    · Share on FacebookShare on Twitter
  • cookiegal
    cookiegal Member Posts: 3,296
    edited November 2010

    Oh Leah...it sucks. It just does.

    As absurd as it sounds, my cheesehead elevates my arm really well on the sofa. 

     Be checked for an infection...I seem to be one of the infection champs of BCO....it can really drive the swelling.

    · Share on FacebookShare on Twitter
  • Suzybelle
    Suzybelle Member Posts: 920
    edited November 2010

    Leah, I'm sorry.  LE sucks so bad, and there's such a learning curve associated with it...I wound up going into a severe funk because of it.  Don't do like I did and whine and eat brownies non-stop and stay pissed off for months...but hey - it worked for me.  Laughing

    Hang in there - you are not alone and there are some awesome, smart women on this board who will help you with whatever situation comes up.

    Suzanne

    · Share on FacebookShare on Twitter
  • inspiewriter
    inspiewriter Member Posts: 876
    edited November 2010

    Nothing to add, but sorry you're joining us!

    · Share on FacebookShare on Twitter
  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited November 2010

    Geez, Leah - that so sucks...hope it gets under control - the LE girls are awesome - and you may get invited to hide under suzybells bed with the dust bunnies and eat brownies...Hugs...LowRider

    · Share on FacebookShare on Twitter
  • hymil
    hymil Member Posts: 826
    edited December 2010

    Dang indeed Leah. You know, eating those brownies nonstop under the bed kept me safely in DeNile for a full two days, but it set back my hard-earned weight-loss by at least two months. Not really clever. You have  been such a support to many of us here and already handling the chronic thing, it really does suck that you have to deal with this now.

    · Share on FacebookShare on Twitter
  • otter
    otter Member Posts: 6,099
    edited December 2010

    Aw, Leah ... that is sucky news. I'm sure you're thinking, "What ELSE???".

    I alternate between sleeping on my back and on my side(s).  Now that my LE is under control (mine never really was more than "Stage 0"), I sleep on my LE side, but I stayed off that side when my wrist and forearm were acting up.  Anyway ... I use a soft pillow, which I hold up against my body when I'm lying on my side.  I drape my LE arm over the pillow so it's pretty much horizontal.  The key I think is to keep it at the level of your heart, or higher if possible.

    You probably ought to have your old sleeve checked out by your therapist before you start wearing it, unless you are pretty sure the fit hasn't changed.  Once your arm swells up, the sleeve will probably be too tight. You would probably be better off wrapping at this active stage, anyway.  Best to get the details at your therapy appointment.

    Big, gentle hugs, Leah.  You sure didn't need this piled on top of everything else.

    otter

    · Share on FacebookShare on Twitter
  • Leah_S
    Leah_S Member Posts: 8,458
    edited December 2010

    Thank you to everyone for your good wishes and help. I've been sleeping with my arm elevated, drinking a lot, etc.

    But I hope Jumping Through Bureaucratic Hoops is an approved LE exercise because I've sure been doing that. We have socialized medicine here, run through "Health Funds" which are similar to HMOs. So... after the onc confirmed the swelling I wanted to deny, I did what I thought I was supposed to do - went to my pcp for a referral. Any PT, including for LE, has to be approved through the regional office, so her referral was sent to them. It took about 1 1/2 weeks for them to answer - they said they needed a letter from the onc. Well, thinks I, that's easy. My onc is very accessable, and he's given me not only his office number but his email and his home number, so unless he's out of the country I can get to him within a day.

    You guessed it - he was out of the country.

    So I spoke to the secretary at the oncology clinic and asked if one of the other oncs could write the letter. She said she'd try, but none of them was willing to sign without examining me and it wasn't the kind of emergency where she could get me in quickly. So I had to wait for my onc to get back. When he did, I got the letter from him and brought it to the  Health Fund clinic. They sent it in and I then got approval the same day. (Go figure). I got a list of LE therapists in our "region", only one of whom is really within easy commuting distance. Yeah, you guessed right - she's full up, suggested I call elsewhere since she has no open appointments for about 3 months. I said to heck with the "regional list" and called a place outside the "region" but a fairly simple commute and have an appt for Jan 21.

    So unless there's some bureaucratic fuss about going outside my "region" I should be OK.

    It's a good thing it's only mild swelling, no redness or infection.

    I've been alternating between grumbling about the bureaucracy and remembering that, when I was first diagnosed, things went really quickly and this isn't an emergency. I'm trying to keep this in perspective but it's hard when I feel like I'm constantly carrying a pillow under my arm.

    Leah

    · Share on FacebookShare on Twitter
  • Leah_S
    Leah_S Member Posts: 8,458
    edited December 2010

    P.S. Just checked - since the "out of region" LE therapist is at one of the Health Fund's clinics it's not a problem to go there. So now I just have to wait 3 weeks.

    Leah

    · Share on FacebookShare on Twitter
  • Marple
    Marple Member Posts: 19,143
    edited December 2010

    Leah, you've certainly been busy jumping through hoops to get help.  Keep doing what you have been (elevation, fluids), be kind to your arm. 

    Gentle hugs.

    · Share on FacebookShare on Twitter
  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2010

    Leah, what an ordeal, and the last thing you need.

    Personally, I FEEL like any swelling is an emergency--I know it's not considered one, but it throws me into a panic--even after having LE for 2 plus years.

    I lived in Israel for 6 months in the 1970's and remember the bureacracy back then--there was some word--"protectcia" (no idea how to spell it)--that meant it's not what you know, but who you know.

    Three weeks and counting.

    Kira

    · Share on FacebookShare on Twitter
  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2010

    Leah, brava!Kiss LE takes persistance, both in the self care and (sadly!) in getting good treatment in the first place. SO glad you finally have the appointment! Keep us posted.

    Hugs,
    Binney

    · Share on FacebookShare on Twitter
  • Leah_S
    Leah_S Member Posts: 8,458
    edited January 2011

    I'm going to the LE therapist in 2 days. So naturally I'm starting to get nervous about what will happen. So.....what will happen? In other words, what can I expect on the first visit?

    Thanks.

    Leah

    · Share on FacebookShare on Twitter
  • alex56
    alex56 Member Posts: 136
    edited January 2011

    Hi Leah!  I was really apprehensive for my first visit to the LE therapist too.  I think he must have blocked off about 2 hours for my appointment.  First I filled out a questionaire with general health history, and then a lot of questions about your ability with everyday tasks, range of motion, pain, etc.  Then we went into the treatment room and he gave a review of the lymphatic system using the Klose posters.  He gave me some privacy to get undressed and settled onto the table.  He started the MLD massage explaining the whole process while he worked.  Then he let me get dressed and started the bandaging.  Be sure to wear a really large shirt because working that bandaged arm through a sleeve is a bummer!  All in all, it was a very pleasant experience; the massage felt GREAT, and I learned a lot.  Most important, I started to feel empowered and on the road to managing LE on my own.  The days you are bandaged 24/7 get hard, so when you're finally fit with a daytime sleeve you'll just want to sing!  Take notes though, you'll need them.  TONS of info to remember.

    · Share on FacebookShare on Twitter
  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited January 2011

    When I went to a LE therapist, the first visit she just measured. My arms, my fingers, my range of motion, etc.  She didn't do any MLD until the second session.  She was awesome & was very good at explaining what I am suppose to do.  My arm and hand is much better, I get small flairs in my hand when we drive a long distance.  I still have a bit of truncal LE but it is improving. NJ

    · Share on FacebookShare on Twitter
  • Leah_S
    Leah_S Member Posts: 8,458
    edited January 2011

    Thank you, Alex and NJ!

    I'll be bringing the sleeve I got before I travelled last year. I can't think of anything else I need (well, except for the myriad forms and letters the HMO wants me to bring) but if anyone thinks of something please tell me.

    Thanks!

    Leah

    · Share on FacebookShare on Twitter
  • sushanna1
    sushanna1 Member Posts: 764
    edited January 2011

    Leah,

    Good luck.  I second the suggestion to wear a really lose fitting top in case the PT decides to wrap you.  When I had really mild lymphedema, the PT just did MLD (manual lymphatic drainage) but when stage II developed in my hand practically overnight, my normal p.t. was away so I travelled some distance to see a different one.  She calmed me down (There's a reason they are called "therapists.") Also taught me MLD and some other exercises and wrapped my hand and arm.  I was practically in tears.  She calmed me down a second time.   After a summer of intensive wrapping the swelling declined and I have been able to keep it under control with MLD, and only wear a glove and a sleeve in hot, humid weather or when engaging in certain types of risky activities and of course when flying.  Unfortunately packing fits under the "certain types of risky activities."  You can't run away from lymphedema, but you can manage it.

    Sue 

    · Share on FacebookShare on Twitter
  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2011
    Leah, thinking of you today!
    Binney, looking forward to your newsKiss
    · Share on FacebookShare on Twitter
  • sushanna1
    sushanna1 Member Posts: 764
    edited January 2011

    Leah,

    I'm also wondering about your day.

    Sue 

    · Share on FacebookShare on Twitter
  • Leah_S
    Leah_S Member Posts: 8,458
    edited January 2011

    Thank you everyone!

    The session was pretty basic. She took my info and did measurements. That part was hard since I didn't realize I was still on my cruise down deNile. I think I was still hoping it wasn't LE - she measured across my palm and wrist and said nothing. Then she measured around my elbow and said "mm HM", measured my upper arm and said, "Yes, I see what you mean about swelling" and I had the most awful feeling in the pit of my stomach. Sigh. She didn't do MLD but showed me some exercises to help with general lymph flow. I showed her the sleeve I got last year before I travelled. She said I should wear it for now since the size was still good but said she would check if it helped since the amount of compression is not what she would want for controlling LE but for preventing LE. So I'm doing the exercises and wearing the sleeve and wrapping my head around yet ANOTHER "chronic condition". Sunday morning I have to call the other clinic she works in to set up regular sessions since she doesn't have time in the one I was in.

    Not everything about this is negative. My granddaughter (she's almost 3) asked what the gauntlet was. I told her it was to make my hand feel better so she gave me a kiss to help. Definitely preferable to the sleeve.

    Leah

    · Share on FacebookShare on Twitter
  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2011

    Leah, I'm so sorry -- it is a shocker, and it hurts to have it confirmed.Frown But I'm so grateful you're moving forward toward getting back in shape and learning all you need to take back control of your life.

    Sweet, sweet granddaughter! And already in the healing professions at such a tender age! Love it!

    Real gentle hugs,

    Binney 

    · Share on FacebookShare on Twitter
  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    Leah, I know that pit of the stomach feeling--I want to think the swelling is something I imagined.

    Here's my thoughts on LE therapy--have them teach you ALL the tools: wrapping, MLD, exercises--because ultimately, you have to manage this.

    And compression takes getting used to, and sometimes "less is more"

    Your granddaughter is a total sweetheart, and the more healing kisses the better.

    You will get control of this, and it will get easier and better.

    Kira

    · Share on FacebookShare on Twitter

Categories