finding it difficult to cope with le

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finding it difficult to cope with le

Postby butterfly » Wed Sep 27, 2006 11:46 am

Hello, posting again to moan i'm afraid.
I'm feeling very frustrated just now. Some people might know me from my many postings in the personal stories thread. I'M 27 and I feel i'm not getting anywhere with this disease. I niavely thought when I was diagnosed last year that somehow the mld would shift and get rid of my fluid completely. I know now that mld helps to manage the le and stops fibrosis etc but does not cure. I'm tired of being young and having to just get on with it, battling along. Iknow I only ahve stage one, and some of you guys are suffering much worse but I suppose I feel alot worse just now due to having a boil on my groin and I seem to ahve excess swelling becuase of it-on antibiotics and off work from my aprt-time job. I would hate to give up my jobs , but sometimes I wonder how I can struggle on in this le state. I had le in my face, knees, went to arm, then hip, then top of thigh and now it 's back to face and arm causing me much discomfort esp on my face which is swollena nd puffy on my right le side. Going to seeprof.mortimer hopefully soon,but just fed-up with the whole thing-cosmetically as well as health wise. How does everyone else cope?
butterfly
 

Postby joanne johnson » Wed Sep 27, 2006 5:24 pm

Hi Butterfly,
Sorry to hear that you are having so many problems. You certainly do have extensive areas of lymph fluid. Although we all have our problems with this condition, it is probably more difficult for you to cope due to your age and the extent of your lymphedema. I hope Dr. Mortimer can be of some substantial assistance. Is it possible for you to take a leave of abscence for a period of time from your job? It may be less streeful for you.

Let us know how you continue to do. We want you to feel better and we are all here for you. Take care of yourself!
joanne johnson
 
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Postby butterfly » Thu Sep 28, 2006 6:53 am

thankyou Joanne. As I said I'm off work this week. I have been off alot this sick year and ar on my works sickness mangement programme. So I have that worry when I'm off work that I will be eventually medically retired. I don't know what to do. Really love my job, but a t the moment life is a struggle. Luckily I live at home but it is catch twenty -two-If I get medically retired I will ahve no job and be even more isolated than I aleady am, but i am not well alot of the time to be at work due to le. Ionly work 18 hours a week anyway. Thanks for your kind thoughts.
butterfly
 

Postby patoco » Thu Sep 28, 2006 9:30 pm

Hi Ya Butterfly :wink:

Just wanted to say hang in there and send a special hug to you.
:!: :!:

I took a few days off this week too...got hooked back up on the IV antibiotics this afternoon.

Can't wait for you to see Dr. Mortimer and find out what his thoughts are. It may be that you will need to take a brief leave from work as Joanne mentioned, get this under control and then you'll be able to start doing more.

Things will work out for you. LOL....I can remember being your age (many decades ago :lol: ) , you know when Adam and Eve walked around on the earth :P and know how you feel and the emotions you are going through.

Special hug to ya and lots o' encouraging thoughts

Pat
patoco
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Postby butterfly » Fri Sep 29, 2006 9:07 am

thanks so much Pat-taking next week off as well.
butterfly
 

Postby butterfly » Mon Oct 02, 2006 6:55 am

now been signed off with my le for this week. Going to le nurse on friday.
butterfly
 

DONT GIVE UPSO TAKE CARE

Postby davef » Fri Oct 06, 2006 6:27 pm

SORRY TO HEAR THAT YOU ARE IN BAD SHAPE I HAVE LYPH IN BOTH LEGS ARMS AND STOMACH THANKS TO A SURGEON THAT CUT THROUGH THE MAIN LYMPH TRUNK MY DR. IS STANLEY ROCKSON AT STANFORD AND HE TOLD ME THAT ABOUT THE BEST THING I CAN DO IS WALK AND DO LIGHT SWIMING AND IT SEEMS TO WORK TRY SWIMMING IT FEELS GREAT HAVEING ALL THAT EXTRA LBS FLOATING AND FEELING LIGHT MY NORMAL LBS IS ABOUT 185 AND WHEN I SWELL I WILL REACH CLOSE TO 300LBS BUT HEY JUST KEEP YOUR CHIN UP AND FIGHT IT DONOT LET IT BEAT YOU JUST LIKE ME I WILL NOT LET IT WIN AND YOU CAN DO THE SAME
davef
 
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