Have I done the wrong thing?

geebung -((((((hugs)))))))



It's always wise to wear at least a gauntlet with a sleeve. The new therapist gave you bad advice.



Are you home now?



Do mld if you know how.

Drink lots of water

Elevate your arm



It's beyond frustrating and infuriating to try to do everything right, do what people you trust tell you to do and it turns out all wrong.



Hugs to you, dear one. Prayers swelling goes down quickly.

Oh dear, I am sorry that you are having to deal with this, Sounds like you are having a flare. The reason you have hand swelling is because your therapist did not send you with a gauntlet or glove and the fluid pushed into the non compressed areas which was your hand. You need to see a qualified therapist asap to get things under control so you can reverse this as much as possible.

Your post doesn't say if you have had LE before and were being treated or you just visited therapists to get fitted for a preventative sleeve for  flying so I will just try to guide you on how I interpret your post.

Not sure if your therapist is certified or not but you really need an experienced person with LE, They are usually physio or massage therapist with extra special training for LE.  Visit stepup-speakout.org  for all your Lymphedema needs.Some girls here on the threads wrote the site and it is the best out there. It answers many questions such as how to find a qualified therapist in your area and how to feel better until you meet up with the therapist.

Not sure if you are landed home or at the hotel but in any case get that arm elevated on a pillow as you rest or sleep, Take deep belly breathes every so often to get your biggest lymph area moving which helps the whole lymph system and raise your arm straight up in the air and pump your fist 25 or so times real slowly every few hours. Drink tons of water to help the fluid move.

Do not lift your luggage at all with that arm if you are travelling still. No weight such as a grocery bags or heavy weight exercise right now. Ask someone to help with bags.  Many people are good about helping.

This is not going to resolve overnight and you may be dealing with a problem in the future but the good news is if you treat it asap then maybe it can regress back to near normal or reverse it if it not too bad. Yes, this is Lymphedema and you may have to wear garments now which is a must to keep more swelling at bay. Your therapist will judge. She should measure you too and teach you MLD and wrapping too. These are all good tools to have in case of an emergency which today was. Stay out of sun because you don't want to burn because you will just end up with more lymph fluid in the area. Watch the bug bites too. Good to carry antibiotics also.

I know this is a steep learning curve but we are here to help and we feel for you. We are great gals and answer all that we can. Our experts will come on and help even more.

Don't beat yourself up, we all have had things happen. Silly me sunburnt my arm and swelled, It was preventable and I blew it. Also burnt my whole hand in a campfire. Don't ask how!  But I know I just have to deal with and life goes on. The LE beast is such a stupid thing but with proper care you can get a handle on it. 

Others will come on and give you help but it is late and many are in bed. Please do keep us posted and give us more details on your background such as if you ever had a swell before or have been seeing therapists regularly. 

Oh... I am going to give you one of my kisses that I reserve just for ones that are having real trouble. I don't hand them out often but here goes! Hope that helps.

Dawne,Binney: thanks for the post, You posted while I was typing!

Jane, you can buy a gauntlet for the flight back, and they are relatively inexpensive, you can either order one on line with express delivery from a place like Brightlifedirect: http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS-Gloves-and-Gauntlets.asp

The average price for gauntlets on line is around $20.

I initially bought a Jobst sleeve and gauntlet from a full service pharmacy and some surgical supply stores will sell them as well, if you want to try that.

Here's a link to why it's important to protect the hand: http://www.lymphedivas.com/handprotection.asp

You may find that there are well trained therapists who are massage therapists who may have more accessibility and are far less expensive:

http://www.mylymphedema.com/therapist.htm

Here is what came up from the Vodder School in TN:

http://www.vodderschool.com/find_a_therapist/search?province=228|TN&submit_btn1=Run+Location+Search

Also, BeckySharp is located in TN and runs a support group and she might know: http://community.breastcancer.org/member/120255/profile

Good luck! And I'd suggest ditching or strongly re-educating the therapist who sent you off with just a sleeve, just my opinion

Kira

Hugz is right that I do some belly breathing on airplanes, and I do try to be unobtrusive about it, but really I do not care what people think.



Geebung, when is the long trek home? I hope that tomorrow when I am back home, I will be able to post some thoughts for you for your long travel home. At the moment I am waiting to board a plane and no time to dig out my laptop and type.



I did send an email to a friend in TN who may have some resources for you (find a way to get you some professional MLD), and she is a member here, but I think she is at the moment not able to spend much time in the forum. If she can help, I think she will PM you, and I am truly hoping that she does have some resources.



The so-called LE therapist who put you in a sleeve without hand protection for a marathon flight day...words cannot describe what I think of her irresponsible advice.



I will post some flying suggestions tomorrow when I am back home.



Carol

Geebung: one more thought--gauntlet vs. glove. The gauntlet will not prevent you from getting swelling in the fingers, but gloves are difficult to fit, and are much more expensive.

Juzo offers a relatively inexpensive glove: http://www.brightlifedirect.com/juzo-1101acfs-glove-wfingers-20-30mmhg.asp

Still almost $80

And I personally like medi-95 as they have full compression in the fingers and half at the wrist:

http://www.brightlifedirect.com/medi-95-glove-20-30mmhg-wcompressive-fingers.asp

If you can get some finger bandages, a hand wrap is inexpensive and "custom"

Jane,  I am the person in TN several referred to.  I just sent you a PM.

Jane,  Here are some possible resources for you:

Siskin Hospital Lymphedema Clinic in Chattanooga

John Jordi, PTA, CLT-LANA  Phone: 423-634-1246

Avalon Therapy Services in Chattanooga

Margaret Secrest, PT, CLT-LANA  Phone 423-553-8175

Maybe you could at least see them for wrapping for trip home.

Becky

Another inexpensive glove to consider is the Farrow glove:

http://www.brightlifedirect.com/farrow-microfine-compression-glove-20-30mmhg.asp

Brightlife has free shipping and gets things out really fast even with free regular delivery. Two things to be aware about with respect to the Farrow glove.  First, people say that the black glove runs small.  Farrow has a reputation of being bad about returns.  Consistent with this, Brightlife -- which is  amazing about returns -- says on their website that the Farrow glove is non-returnable

If you decide to do a fingerwrap, Brightlife also sells gauze, though not the brand I usually get.  The 2 inch is about $4 for 12 rolls:

http://www.brightlifedirect.com/elastosoft-gauze-bandage.asp

With respect to gauze, Lymphedemaproducts.com ships out of NJ.  They are very quick at shipping but they do charge.  Just went to their website and it seems like if you order by 8 pm EST tonight (Wed6/19), they will ship tonight.  Cost to TN is about $4

http://www.lymphedemaproducts.com/products/transelast-classic.html 

In fact, when lymphedemaproducts.com inadvertently shipped me 6 cm gauze instead of 4 cm gauze, they got the 4 cm to me within a day.   Rather than having me send the 6 cm back, they told me to just keep it or donate to someone/place.  So, long story short, I have 300 rolls of 6 cm x 4 cm transelast classic to give away.  

Obviously, you don't need that much gauze, and parcel post mail would be too slow anyways, but I could stick a bunch in a flat envelope envelope and mail them to you via first class mail.  When do you leave the US?

KS1

****************************

snipped from another thread:  

PM me if you want:

=>>  15 BOXES of Transelast Classic 6 cm x 4 m (300 rolls)  <<= 

It probably makes more sense for someone living in the US because the box is big (23" x 15" x 11 and 10 lbs) so it's kind of pricey to ship. I just calculated it and, for UPS ground, it's about $23.50 to California, $18.50 to Chicago and $15.50 to NYC.  (For comparison, the gauze cost $175 +S/H for Lymphedemaproducts.com)

KS1

Geebung, what I like about brightlifedirect is their return policy--so often the gloves just aren't right. I also found that I felt better in the larger medi95.

You could order 2 sizes and return one.

In our fantasies, there is a shop with all the products and we could try them on and compare... That only happens at conferences.

Binney and were talking about our closets/drawers full of stuff that didn't quite work out, but we don't toss it....What's up with that???

I was looking at Becky's post and  I know Margaret Seacrest from LANA-- she's a regional rep: I'd recommend her highly

http://www.clt-lana.org/lana-regional-reps.html

Hear that on garments that didn't work out. Have both gloves and sleeves.

geebung - Yay!  What kind did you get?  I'm always looking for gloves.

So, so happy that you've found someone to help you and you found some gloves.  Great news!