lived with it for awhile

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

Moderators: Birdwatcher, jenjay, Cassie, patoco, Senior Moderators

lived with it for awhile

Postby betty » Sat Oct 28, 2006 11:57 pm

I'VE LIVED WITH LYMPHEDEMA FOR ABOUT 33 TEARS NOW. MOST OF THE TIME THINGS ARE OK. I JUST LIVE ONE DAY AT A TIME. BECAUSE WITH LYMPHEDEMA YOU DON'T KNOW WHAT WILL HAPPEN NEXT. I WAS DIAGNOSED WHEN I WAS 15. IT DEVELOPED WHEN I WAS 13. I HAVE HAD MY UPS AND DOWNS. BUT I REFUSE TO GIVE UP. I DO HAVE SOME ADVICE TO GIVE TO PEOPLE NEVER,EVER GO TO AN ER SINCE THEY USUALLY DON'T KNOW HOW TO HELP ANYWAY.
betty
 
Posts: 1
Joined: Wed Oct 25, 2006 11:51 pm

Postby patoco » Sun Oct 29, 2006 12:51 am

Hi Betty

Welcome to our group.

Must say though that the answer is not in not going to the ER room. I understand that most do nto know what to do.

But, that is all the more reason we need to be educated properly about lymphedema and hwo to handle any and all complications that amy arise.

There may be times that it is absolutely necessary to go to the ER and we should be prepared to give input and instruction.

Been there done that many many times.

BTW, I've had lymphedema for over 53 years.

Pat O'Connor
User avatar
patoco
Site Admin
 
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

Postby silkie » Sun Oct 29, 2006 2:25 am

Hiya Betty

Huge Welcome

I think i was about the same time as you starting with the lymph and lip
took them 40 years to figure it out

So i had a few visits to doctors ER without any knowledge at all
of the condition just told it was my shape and overweight

I since being diagnosed and finding support from my family of fellow lymphers have however printed a file off about lymph etc
that is there for uneducated docotrs in ER rooms etc at clinics to

it was good advice and hes helped so much

I weas in the ER a week or so back had a fall

the Doctor and 2 of the nurses were throwing all sorts of questions at me about living and treating the lymphedema

All three of them were under the impression i had had cancer
because i had lymphedema
Even the Doctor

I gave this web site and my own

on our sister website there are cards and posters you can print off
I take a handful of cards with me and drop them in clinics and give to people in hospitals or leave in pharmacies

it helps in a small way spread awareness also it might help someone find a little help and support

Hugssssssssssssss

Try down loading info relevant to you and taking it with you it does save a lot of hassal explaining to ER staff that are unaware of the condition


Silksxxxxxxxxxxxxx
User avatar
silkie
 
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England


Return to Lymphedema Personal stories

Who is online

Users browsing this forum: No registered users and 3 guests


cron