Why I picked up a wheelchair today.....

leg pain, leg bleeding, Farrow Wraps, Compression Stockings, cold feet, Reid Sleeve, Restless Leg Syndrome, Leg Cramps, Compression Pumps, Shoes, lower limb lymphedema, secondary leg lymphedema, leg wrapping, Cold Feet, Compression socks, nerve pain, self leg massage, right leg lymphedema

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Why I picked up a wheelchair today.....

Postby gottahavesun » Thu Dec 14, 2006 1:00 am

If you are not familiar with my story, I have all over LE. I was diagnosised about 2 1/2 years ago and have added tools to my LE management tool kit as needed. I already have a rolling walker that I use when I go out and need to walk for any distance, besides going straight in and out. My biggest goal in my LE management is to stay healthy for my family and to stay as mobile as possible. So why did I go get the wheelchair today? Well, I realized that there were places I wasn't going anymore. You know what I mean places that you use to go too but when you think about going it is just too much to even think of going again. Well LE is not going to stop me from going any place I want to go, so I got the wheelchair so I can go back outlet shopping, back to going anywhere in the mall I want, not being held back because with the walker I could only go to 1 or 2 stores, back to theme parks, zoos, etc. Yes, I already had my big cry today because of having to add a wheelchair to keep my mobility and yes I'll have a good cry the first time I use it, but then I'll get over it and use it as needed. I plan to keep on walking every where I can and as much as I can, but I will use this for the places that I want to go and my body can no longer carry me. I have LE but LE still DOES NOT have me! Everyone have a good night!
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Postby silkie » Thu Dec 14, 2006 10:12 pm

Hi Lisa

WTG my friend. I really do think you are doing the right thing

I know my day will come to to walk eound the supermarket is getting worse. they do have these carts each time i go they look more and more inviting but for the fact they have a tiny basket i think i would have given
in before now. The staff are getting used to me now lol many is the time im sent to sit down and they do the emptying packing and even pay for me.

I am on my own i can call at one shop and do it all in there
i thought of a shopping trolley on wheels but the arm and shoulders will not let me even push the cart round i use most times my tummy to do the pushing How will you control the chair lisa?

i cannot hold my arms out and hold onto the carts without bad pain
how would i guide a sit on or chair?

When i am here on the pc i have the keyboard pushed up to the middle of the desk so i can rest my forearms on the desk this seems to help with the typing. i am down to two fingers on each hand the others go numb very quickly

ut hey I am still doing it all be it a little inventivness is needed to help now and then

This year we are using sheets of pastry for the pies i never used them didnt seem like baking before and a machine to do the blending

Charley comes this weekend so we have the real thing shes a good little baker I think thats what i have really missed this Christmas
the baking, the Christmas cake home made puddings with the silver sixpences in somehow doesnt seem like Christmas

But never fear I have the smells around the spices and cinnamon oranges cloves

As you say we have lymph and we have to adapt and do things differently
but it doesnt rule not yet not by a long chore

and would you belive i am knitting yup a hat like the young guys wear
might take me forever but im doing a little and it bl--dy painful but i promised someone and im damned if i am getting a shop bought one

Stubborn to the end lollllllllll HEY PAT YOU TAUGHT ME WELL

Hugsssssssssss

Silksxxxxxxxxxxxxxxx
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Postby gottahavesun » Thu Dec 14, 2006 11:39 pm

I too have the problems with my hands and arms, so I got a transport wheelchair, which Mitch or Thomas will have push. With my arms and hands I couldn't even think of getting one that I would have to manuever and I don't have a car that would fit an electric one that just has buttons to push. I count my blessings every day for those 2 and realize I'm lucky to have them to help me out.
I too am having problems with the baking this year, so I'll once again use my brain and Thomas' hands and together we will do the baking, just like you and Charley. Can't wait to hear how the baking goes with you two--enjoy!
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Postby Kim » Fri Dec 15, 2006 2:24 pm

Silkie,
Are you wearing compression yet on your arms and hands?

My arms/shoulders are getting worse. I've been holding off on compression and will for as long as I can, but I have a feeling it's not to far around the corner.

MLD and exercise helps some, but not so much anymore.

What is your status?

Kim
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Postby silkie » Fri Dec 15, 2006 11:30 pm

Hi Kim

no no compression yet like you i am holding off

The kinsio was brilliant for me unfortunately i developed a reaction to the adhesive and i get this angry redness ans thusands of tiny pin prick size lunps under the skin

i am doing little skin test every so often but i'm still gettin a reaction to it


i don't want to have compression till im sure there is no alternative

I feel for Lisa ad other members in the same position

I just have this feeling that my body makes the same ammount of fluid
every day and compression helps one area

Am i going to put extra pressure on the Good areas by diverting this fluid


Where did my arm lymph come from?

i had lower lymph both legs from puberty never in my arms
even though i had repetative strain in both

is this just a natural progression of the lymph or is it because in a sense diverting the fluid away from my lower body i created a pressure on another week spot????????

i dont know but im for ever looking for answers

Hugsssssssssssss

Silksxxxxxxxxxxxxxxxxx
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all over LE

Postby suzeeq » Sat Dec 16, 2006 11:09 am

Hi everyone, I'm responding to Silks mention of the LE spreading. It started out only in her legs and now she, and others have it in their arms and other places. That's interesting, because I was told by my therapist that your body is divided into 4 quadrants ( when it involves the lymph system) and that the edema should not spread. So mine, which started in my foot, then progressed to full leg, should not go past my waist in the left side. So far this has been true.It has spread to my left buttocks and abdomen but minimally. But I have read here in the forum about others will full body LE, so I'm a little skeptical about the information that I had received. My therapist did say that the compression pumps can cause lymph to move to other places, and that makes sense. I just found out that my cousin has bilateral leg lymphedema. His started out with frequent bouts of cellulitis with hospitalizations, and he is now wearing compression hose. So mine is genetic after all, which is good to know for sure. But bad news for my kids. I just wish I knew where the problematic lymph vessels or nodes were, because my lymphscintigraphy (spelling?), which I had in Sept. showed normal vessels in both of my legs. My doctor that I saw in Arizona thinks that the obstruction is in my pelvic area or abdomen. I'm doing MLD every day and bandaging every night. No improvement, but no worsening either. But unlike alot of you, I can still work and am fairly active, so I'm grateful for that. Who knows what the future will bring. All of you are in my thoughts and prayers and Merry Christmas, or Happy Holidays( depending on your religious views - don't want to offend anyone). Susan
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Postby silkie » Sat Dec 16, 2006 1:00 pm

Hi Susan

lymph is still something we are learning about
I magine its not so long ago we didnt have ab's imagine a lot of people became gangarus a lot of people were lost to it but the doctrors were unaware.

So i think of lymph as a condition only recently discovered and we still learning so much so we get wrong diagnosis and many doctors thing it is only something we get from cancer

It is like the pumps i will not consider them with leg lymph
my choice but i would hate to have to deal with genital lymph

if i have to becaue of the natural course of lymph then i will have to handle it but to actually accelerate towards if because these machines are still in there infancy no i'll stick to MLD

I was a workaholic only since elephantitus that major damage was done
so yes i think many with correct care and self disapline can go many years managing ok But lymph is a cronic dibilitating condition
eventually our body ages and starts to have problems so must our condition i was 52 before it gave me major physical problems i was lucky

I still believe if i had had the opportunity to care for the condition all those years before i would be physically better off now

I think that is why we must keep pushing awareness as much as possible
in our own way

Have a Great Christmas Susan

Hugssssssssssss

Silksxxxxxxxx
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Postby gary1955 » Mon Dec 18, 2006 4:13 am

Hey Lisa.... you have to do what makes it easier for you to be mobile. I am thinking seriously about getting a mobilty chair. I miss going to the zoos and theme parks too. At least Medicare will pay 80% of the cost. I wanted to wish everyone a very Merry Christmas also. Here's a nice Christmas greeting I received.

http://ecard.ashland.edu/2004admission/index.html
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Postby mama » Tue Jan 09, 2007 3:07 pm

Pride goeth before the fall, right? How many times does one need to fall before giving it up though?? My hubby is only willing to use a wheelchair in the hospital. Even that is painful though. Where do you put your legs in those things? During his recent week-long stay, the nurses took a bariatric sized chair and taped pillows along the foot rests to prevent the metal parts from piercing his calves. Just yesterday however he would not go to the doctor because he didn't think he could make the walk. My heart was breaking for him, but I wish he had the type of attitude that some of you have. I don't want this to ruin his life so early! He's only 29 and had LE for 4 years. He'll be house-bound if he doesn't choose to fight it no matter what! (I know you're all saying "it's easy for you to say!") Your posts are an inspiration and I show them to Josh all the time. Keep up your positive thinking.
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Postby silkie » Tue Jan 09, 2007 4:55 pm

Hi Josh
(this is for you)

I'm stubborn and totally refuse to use a wheelchair one of those mickey
mouse electric carts

The last time i went our was the day before Christmas eve
I couldnt do a propper christmas shop I was miserable
and Christmas just didnt seem the same

My friend comes to see me and so patiently stops and starts and takes an hour for what would take her five minutes to walk in the town

I thought long and hard over this period. The love my friend gives me never complaining and always encouraging me when i could simply get a cart to go round the malls
Being house bound unless a family member comes to go to the supermaket. The girls in there that have had several heart stopping frightening moments when i stubbornly have refused to use a cart and try and get round the store by leg power.finishing up in a near heap in the ailes.

What am i proving? who a i impressing? and who am i hurting with this stubborness.
So i made the desision that i rather have my freedom and still be independant than be restricted by movement

I will excercise and i WILL STILL WALK but those bad days when a yard seems like a marathon and my family have that look on there faces
you know the one Josh the one that says i would walk for you if i could

those days im going to use the chair not just for them but for my freedom to

Don't cut off your nose to spite your face hun

Don't let lymph make your home a prison if you can get a chair get one for the bad days and still have the freedom to get out and smell the earth and flowers and feel the heat of the sun

Do it for you mobility is a terrible thing to lose,
but even more is your freedom dont lose it

Bless Josh Hugsssssssssss

Silksxxxxxxxxxxxxxx
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Postby eve alvirIII » Wed Jan 10, 2007 2:23 pm

:)To Gottahavesun: yes, yes, yes - mobility is good and precious so use that chair and move!!!!

To Lisa, Silkie, Suzeeq, Gary and Mama: my hat off to you! Good words and great advice - we need them all.

But why does everyone seem to have a aversion to compression stockings? I've been measured and looking forward to it - no more daily thick foam and severe bandaging. Presently, my therapist ordered me an over-the-counter. I bandage around it and my leg gets a little puffy - but the forthcoming custom compression garment should help me better. I will still bandage around it and continue to see my therapist every so often to monitor my progress. I'm also using my sequential pump and hoping not to spread the lymphedema to other areas. I measure my tummy and report if there's obvious spread of fluid in the genital area and the stomach.

All the best and you're always and ever included in my prayers!

Eve
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Postby silkie » Wed Jan 10, 2007 3:53 pm

Hiya Eve

I love my Nora's (compression stockings)
I often lift my skirt and flash me sexy ankles to staring passers by with a cheeky wink and a smile


I have had a lot more freedom with them over the last 4 years
and if i take them off within 30 mins my ankles are sagging like a balloon being filled with water.

Best thing since sliced bread My Noras's


for those who dont know NoraBatty is a lady that has wrinkly thick stockings on tv cant be sure if its her ankles or the stockings that wrinkle but the stockings are her admirers fantasy
so i have Noras xxx just a silly sense of humour im not sure what has creases me or the stickings either

Hugggggggg
Silksxxxxxxxxxx
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Re: Why I picked up a wheelchair today.....

Postby Caerwyn » Wed Nov 24, 2010 10:56 pm

Your condition is really difficult because you can't walk longer. Before going anywhere, you must check the place if it is accessible for the wheelchair to prevent from any accident. But you can use walker if the place is near.

My wheelchair van
Last edited by Caerwyn on Sun Nov 28, 2010 11:13 pm, edited 2 times in total.
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Re: Why I picked up a wheelchair today.....

Postby evelyn » Fri Nov 26, 2010 12:02 am

:roll:

Hey all,

Okay time for us lymphers to inspire each other. Here's all about Nick (the man without limbs, doing practically everything in life):

http://www.youtube.com/watch?v=Gc4HGQHg ... re=related

I've managed to pick myself up, dust mself off and go places. I limp to the zoo or botanical garden gate, get a motorized wheelchair and feast my eyes on natural wonders. I'm also gearing up to go to the Far East and see other places, with this dread of a ballooning limb in spite of compression stockings and bandages while on very, very long flights. So JOSH please, you're so young and have so much to see and do. Dear child go and not only cheer yourself up but your family too. I'm 70 and facing breast cancer treatments before I leave for far-away places.

Evelyn
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Re: Why I picked up a wheelchair today.....

Postby blubrdfrend » Mon Nov 29, 2010 8:23 pm

I went shopping last week. Did I use a cart? Certainly not. My grandchildren say that it hurts Granny's pride to use a cart. I have been sitting here in pain for three days. What a train wreck. My ankle feels as if it has a rubber band around it. Well I have a wheel chair now. I am not giving up church, museums, quilt shows, kids school activities, zoos or anything else. I will use a manual wheel chair for as long as I can. I will get over my hurt pride by attaching a horn to my chair. :wink:
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