Thank you so much for your help!

Welcome to all our family and friends. Patients, families, caregivers, therapists, nurses, doctors, anyone with a concern for and interest in lymphedema is most welcome!!!

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Thank you so much for your help!

Postby Teddi » Thu Aug 03, 2006 8:14 pm

I just got back from the therapist - not an easy trip to Mason and back but we managed - and several things have become crystal clear. First, the so called genius's in Iowa City do not know squat about Lymphedema! I have been told by the therapist that the lymph nodes in my groin have backed up causing the fluid to look for another outlet - thus the enormous growth on my leg. She also told me that since it is part of my leg, it should not be removed surgically but we have to work on draining the fluid out of it through therapy and hopefully reducing it down in time. She said she could not guarantee that she could help me but she was certainly going to try.

Now comes the rub...first I need to spend at least a half hour three times per day lying flat on a good mattress that will conform to my body and not be too hard or too soft so that I can breath. My legs have to be elevated to some degree and I need to have a sling around my stomach to free the groin to drain. My problem is that I do not have such a bed - and you all know that we are poor. Actually, we have a frame from the supply house but not a good mattress.

Next, I have to go for therapy up to Mason three times per week and the trip in the van is a bugger. Michael has an idea for a swivel seat where I could go up the ramp and turn around and sit down and then he could swivel me into the van ... but he would have to get a good seat and then have some parts made.... again, expensive.

But at least I have hope - and i will work as hard as I can within my limited means.

And if it had not been for you folks here at le people, I would never even have known there was such a thing as a lymphedema therapist even existed!

Thank you, thank you, thank you!

Teddi
Teddi
 
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Joined: Thu Jul 27, 2006 8:11 pm
Location: Marble Rock, Iowa

Postby patoco » Thu Aug 03, 2006 9:55 pm

Hi ya Teddi :wink:

Just want ya to know how glad I am to have you part of our family and that you found us. :!: :!:

Thanks for letting know how everything went.

I wish there was more we could do, for you and for all our lymph family.

Very special hug to ya.

Pat
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patoco
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Support is so important.

Postby Teddi » Fri Aug 04, 2006 1:14 am

I don't know what I would have done if it hadn't been for you guys and my baby, Vinnie! Every time I was feeling so down, he would fly over and give me a wing hug - which is fine but I swear I was hugging the stuffing out of this poor birdie. But he just snuggles under my chin and says, "I love you, mama." It gives me strength.

Teddi
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Joined: Thu Jul 27, 2006 8:11 pm
Location: Marble Rock, Iowa

Postby silkie » Fri Aug 04, 2006 2:30 am

Hi Teddi

Give Vinni a hug from me Best medicine there is

Your hubby sounds like he's worth his weight in gold

has he thought about patenting some of these ideas he has for you

there are so many people that are house bound and have difficulty

with transport. Maybe the bill Gates foundation or some other could help

with this. I remember one lady in oregon had to have special transport

which was very difficult for her to use

Might be worth getting hold of some manufacturers be helping both you and many other people in similar situations


would it be possible to get help from insurance people as its medical
nessessity? im in the uk so im not sure of the procedure but worth a try
medical equiptment would it come under for beds /matresses?


Keep smiling Teddi you have come so far not given up

my respect to you and yours

I am glad you found us

Hugsssssssssssssss

Silks xxxxxxxxxxxxxxxxxxxx
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emotional support

Postby Teddi » Fri Aug 04, 2006 8:52 am

Thanks, Silks! I will defiitely give Vinnie a hug from you and tell him that he has a new aunt/uncle (?) in the uk. Amazing how much he understands but I think it's just that he's so sensitive to my moods and feelings.

My husband, Michael is terrific on some levels - if he puts his mind to it, there is nothing he cannot figure out or solve or build. But it is also too true that he is incapable of lending emotional support. He could never just put his arms around me and tell me it will be alright - He just wasn't raised that way. I'm not surprised as my mother in law is the same way.

As for developing aids for people who need them, I think its a great idea but it might just be too big a project for him to tackle.

This is kind of another subject but I want to say how amazing it was for me to go into the therapist's office and actually be offered a chair that was big enough for me to sit comfortably. It made me feel so much more accepted and less of a freak because of my size. She told me that there are lots of lymphedema patients who get very big very fast and not to feel guilty about it - how nice.

Teddi
Teddi
 
Posts: 39
Joined: Thu Jul 27, 2006 8:11 pm
Location: Marble Rock, Iowa

Postby silkie » Fri Aug 04, 2006 10:09 am

Hi Teddi

Yup weight can be a problem for many lymphers
its not for ALL so there is light at the end of the tunnel

I think if you go for many years undiagnosed it tends to be

you dont realise it but each day some lymph fluid is not getting out of tyour body this goes on for any length of time (me it was 40 years)

and you dont see your slowing down until you realise you cannot do something you have done for years

Also there are the "diets" so long trying to lose weight and they dont work

all these things add to weight problems.

And then your so swollen with lymph fluid wow it would be great to put
a syphone in and just drain it i wonder how much that fluid weighs

Teddi i lost 8 inches off my ankles in 2 weeks with theropy at the beginning it gave me self belief and the insentive to keep at it

but it takes a long time and you do have set back and have to sometimes even go back to sqaure one with infections etc But thats ok because by this time you KNOW YOU CAN DO IT Nothing is easy hun this is harder than most things to keep at it but it can be done

I think maybe your hubby shows you im many other ways he cares
Oh and i be Aunty Silks

huggggggggggggggg

Silks xxxxxxxxxxxxxxxxxxx
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