GRRRRRRRRR I HATE LE..........

The brain MRI came back clear.

Yoohoo!  Time to exhale.

Thank goodness, togetherness

Soooooo happy for you! 

 Take Care,

Laurie

I had my consultation with the lymphodema specialist.  She is certified and has been doing PT for lymphodema for 10 plus years.  She was very informative.  She has me going twice a week for the next eight weeks..... Ugh. She measured me all over and there is a big difference from my left side arm and hand which is swelled compared to the right side.  She said I would need to order a sleeve as well as a hand thing.  Cant remember what she called it.  Does anyone know of a good website that I might be able to order these items  once I get my measurements? She maybe able to send me to a medical supply store in my area with a perscription.  She said in the mean time get a few golf gloves and use them. She said to make sure they are snug and have the Velcro on top.  Has anyone heard of this? I am going to check and see if my insurance covers the sleeves and the hand thing.  She does not treat bells palsy so will need to find someone else for that.  I feel like I did about a year ago running to all these different drs oncologist, surgeon, plastic surgeon, infectious disease dr. The only difference is I am trying to work also.  Trying not to stress and just take one day at a time and hope to feel better.  Thanks for all the support.

Togetherness - Its nice to know everything was clear!

I have been pretty quiet for a while but now, I can't stand it anymore and need to ask a question.  I have been diligent using the sleeves for almost 3 years now. I find that if I take a break from the sleeves - my arms instantly ache.  My torso and upper arms are the only swell spot and getting major ingrown hairs on my forearms.  I want to not wear them for a day or two but as I said, I ache .. Am I addicted to wearing the sleeves?  What an awful thought.. 

Grrrrr about the poison ivy.  I have no experience with it but hopefully someone will be by soon with some good solutions. 

well my old boss used to swear by really hot water on the ivy poison and he used to get it really bad almost every year!  I saw him before and after his hot water thing and it did the job....but he was weird at times and refused to use stuff to prevent it!

Be careful of hot water on LE side Carol.

Weird and interesting about the hot water working.  I wonder how.

Paula, I sometimes wonder if one of the therapeutic values of wrapping is to make us grateful for our wretched compression garments.  ;-)

Hoping you'll soon be bandage-free! Just be sure you know how to do it yourself (and practice it from time to time. I wrap once a month just to keep my skills up--nothing more frustrating than needing to wrap for a flare or a trip and having to fuss with the details you've forgotten…)

Keep us posted, please!
Binney

Went to a new LE therapist today. My arm measurements were up 2-3cm all around. She asked if my other therapists ever wrapped my arms. I said no with a "Deer in the headlights"  look. Gave me choices and I asked to give it a bit and I would be more diligent about wearing my sleeves and MLD. She said we might have to wrap.   

Just wondering - When did this all get to that point? Just mild a bit of swell with exercise or heat - and now 2.5 years later - we are talking wrapping? I guess I've been in denial.. 

Togetherness - I get constant ache with swell.

BLOOD PRESSURE on  ' good side "

Do ppl allow this frequently, and IF SO, any kind of follow up you can do ( cold compress or ???)  to  reduce any risks?

I NEVER let them take my BP.  It has been app 90/60  my whole life, and I see no reason ...nope, not even on the 'good arm'!

Went to DR today , and she insisisted so I said okay.

92/60.  I just feel vulnerable.

Anything ???
THX

I had a left mast and do allow bp on my right arm.  Purple, I think it's understandable you'd be a little gun shy in light of your other issue namely, the rash.  I think if I'd had a bilat mast I'd not be allowing bp to be taken on either arm. 

Good luck to DH on Monday.

TY Binney

Bad news here yesterday.  

Husband who was the ' walking miracle' ( as many had called  him since his strage 4 colon cancer in 2009)
finally got hip pain dx.

No miracles here.

Not even sure if he'll be walking much longer.

TWELVE mos of severe  pain working every single day -  7 days a week!  Finally he was dragging his leg when we realized Spfld drs just could not help.

Went to MGH 3 weeks ago.  Then my INS  CO refused  a PET scan.  MGH drs got him into  a  trial ...no cost.

Inoperable tumor on hip.  They assume it is a mets and not  a new primary.  They want him on ' strong' chemo ( three cocktails ) " for the long haul as they put it.... just in the hopes of shrinking and relieving some pain.

ugh.