IM HERE!!!

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

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IM HERE!!!

Postby lindylou » Sat Sep 26, 2009 2:34 pm

Hi Ya'll !!! My name is Lindy I am 38 years old and live in Omaha, NE! I have leg Lymphedema, I have had this condition for 3 years. Went to doctors and got the ol well its edama and you need to loose weight and it will go away. One doctor when I asked why me leg was swelling simply said, its the way you are sitting!
To make a long story short, I went to Kholl's pharmacy here in Omaha to get compression stockings, I thought those would help at least a little. A wonderful lady came out and simply said, "Oh no dear that wont help, you need to see a lymphedema specialist first, you have lymphedema." UM, WHAT!!!??? Was my reply, I said oh well I am supposed to get the lap band in a couple of months and its my weight yada yada. She simply smiled and said, No dear its not your weight, its your lymphatic system. Give me your phone number and I will call you on where you need to go.

I am two weeks in going to my wonderful PT at Creighton,I get to have those good ol compression stockings in a week and am trying to have my insurance pay for night garments. Or I Will continue to wrap!

For me, this is the first light at a very long tunnel. I know what I have! Good Bless all of you and if anyone has any suggestions on anything I would love to hear them! As I am new to all of This.I am just happy to be here!
Lindy
lindylou
 
Posts: 1
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Re: IM HERE!!!

Postby patoco » Sat Sep 26, 2009 7:03 pm

Hi Ya Lindy :)

Welcome to our family :!: :!: :!:

Wow...what you said has been said by sooooooo many lymphers. Doctors just don't seem to understand that it just doesn't go away, it has to be treated promptly and correctly. At least now your on the path.

Our Leg Lymphedema page is packed full of ideas and info:

http://www.lymphedemapeople.com/wiki/do ... lymphedema

My lymphedema started in the left leg, then right and now is also in the arms and ab. My family has had lymphedema in it for well over 130 years now....so lots of history here :wink:

Let me know if you have any questions.

Again welcome and my very best to you :!:

Pat
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Re: IM HERE!!!

Postby joanne johnson » Sun Sep 27, 2009 11:14 pm

Hi Lindy,

I say a loud BOO!!!! to the doctors :( and 3 cheers for the pharmacy lady who was well informed :D . Doctors just don't get it when it comes to lymphedema.

I wish you the best of luck in what lies ahead for you.

Joanne
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Re: IM HERE!!!

Postby cjhurt92 » Wed Sep 30, 2009 7:39 pm

Yes a Big BOO They Are Pretty clueless...The Cleaning Lady At The Hospital Actually Knew More About It Than The Doctor....Crazy :shock:
...Lol ANyways Welcome..Hope You Learn Allot From This Site, I :D did
cjhurt92
 
Posts: 20
Joined: Mon Sep 21, 2009 3:27 am

Re: IM HERE!!!

Postby CatsMeow » Fri Oct 02, 2009 10:40 am

Hey Lindy,

I'm sorry the doctors did not help to diagnose you and you went through the same frustrating replies that it's something you are possibly doing wrong or weight derived and loosing weight would solve the issue when it's not true.

I have had lymphedema for roughly 11 years and was told to loose weight or eat healthier and I tried everything to loose weight and finally had gastric bypass several years ago. It was successful in helping me loose weight but it did reverse my lymphedema and finally doctors realized I do have a serious medical condition and I finally went through physical therapy and various other treatments to help control the swelling.

I'm glad to hear you are taking the steps now and even after you have your lap band you will see some significant changes but just make sure you do continue to keep compression on your limbs and watch out for any infections because it still happens even after significant weight-loss. For some reason the past two years I have had several infections requiring me to stay at the hospital and each time I have learned new things that possibly contributed to why I have this condition while it helps answer my questions to why I have this and finally answered the question was there anything I could have done differently and it's helped ease that me having lymphedema is not my fault.
CatsMeow
 
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Joined: Thu Sep 24, 2009 8:59 am

Re: IM HERE!!!

Postby whiterose_7 » Fri Oct 02, 2009 3:38 pm

Hi there! I just joined a couple days ago, and I was very happy to read all these stories that are just like mine! I have lymphedema in both my lower legs and my neck. I am 23 now, and have had it since i was about 5 years old. Going back to the doctors, I was also told that it would go away eventually. My doctor said it was "baby fat" and I need not worry. When I was in the hospital with cellulitis a couple years later, I was finally told that I have lymphedema! I have been in the hospital countless times due to foot/leg infections, due to things as small as a misquito bite!! Living with this condition has been such a burden, but it is getting better. I pretty much LIVE in skater shoes (they are the only ones that fit), and almost drool when I see nice, fancy heels! :cry: (but i'm slowly getting used to the fact that I will probably never wear them), haha.
I did not know about this site, and I am glad to know that there is many people that I can share my experiences with! :D Speaking of, I had a question! How many people have used leg pumps? I have been using them since I was about 12 years old, and was just recently told that they do more harm than good! ( I am now doing Holistic lymph drainage therapy and it is working much better). Has anyone else used pumps? Have you had success? Please share your experiences with me! Thanks for reading, and have a great day everyone!!
~Nikki~
whiterose_7
 
Posts: 2
Joined: Wed Sep 30, 2009 2:56 pm
Location: Saskatoon, SK

Re: IM HERE!!!

Postby patoco » Sat Oct 03, 2009 10:07 am

Hi Nikki

Super welcome to our family here. Your story sounded so very familiar to many of us. My lymphedema started at birth and I was finally "officially" diagnosed in 1959 at age 6. My first life threatening cellulitis attack was in 1960 and I have always had a horrible time with it.

A few years ago, I was put on a daily dose of antibiotics and it seems to have really helped. At least I haven't been in the hospital for that in years (LOL...lots of others things though).

I did write an article:

Why Compression Pumps Cause Damage

viewtopic.php?t=58#p69

that can give you the background.

Recently a couple companies have brought out new products that seem to be both safe and effective.

One is the Flexitouch Device:

The Flexitouch Device - Initial Observations

viewtopic.php?t=155

Flexitouch Device for Arm Lymphedema

viewtopic.php?t=273

and the other is a compression sleeve insert that has been clinically shown to be safe in terms of further danage to the lymphatics.

You can get more info on our compression pump page:

Compression Pumps for Lymphedema Treatment

http://www.lymphedemapeople.com/wiki/do ... _treatment

Hope this helps and don't hesitate to post any questions you have after reading the pages.

best to you :!:

Pat
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Re: IM HERE!!!

Postby joanne johnson » Sun Oct 04, 2009 12:26 am

Hi Nikki,

I also have had lymph in my lower legs for many years. I have had 2 different type of pumps and found they were a waste of time and money. They really didn't accomplish much and it was very frustrating. However, Pat seems to be impressed with the newer versions that are on the market now. Personally, I am finished with pumps.

I'm glad that you found this site. You will really learn so much and share with a wonderful group of people that can relate to all of your situations. You are among caring friends and we
extend a warm welcome. :D
joanne johnson
 
Posts: 165
Joined: Sat Jun 10, 2006 12:23 am

Re: IM HERE!!!

Postby whiterose_7 » Mon Oct 05, 2009 1:10 pm

Hi There!
Thanks for the replies! I looked at those sites, and it looks like I shouldn't be using pumps, at all! I'm so thankful for the new info, and I look foreward to many interesting discussions! :)
Nicole
whiterose_7
 
Posts: 2
Joined: Wed Sep 30, 2009 2:56 pm
Location: Saskatoon, SK


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