Hello

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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Hello

Postby Lisa » Fri Dec 01, 2006 8:24 pm

Hi! My name is Lisa, and I am 19 yrs old, about to be 20 at the end of this month. I was just recently diagnosed with having primary idiopathic lymphedema in my left foot. I had swelling in this foot 2 years prior, and I went to many specialists and podiatrists and no one could figure out what was wrong. I had just changed my primary doctor and on one of my visits with him, he looked at my foot and told me it looked like lymphedema. He sent me to Amy, my physical therapist, and she said that was it and described everything to me. She then sent me to Shana my fitter, and I just got my compression sock yesterday! It has been a month since I was diagnosed, and I am on the second day of wearing this sock, so I am extremely new to all this lol. I am so glad to have found this site! There were many times while I was doing my massages that I broke down crying. I went into a bit of a depression for a couple weeks, and I was crying myself to sleep every other day. It was such a hard and scary thing for me to realize, and I am so comforted to have you all to talk to about this!!!
Lisa
 
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Postby patoco » Fri Dec 01, 2006 10:43 pm

Hi Ya Lisa :)

Wanted to give you a super welcome to our family here :!: :!: :wink:

Did you have the decongestive therapy on your foot before you started to wear the stocking?? How has the stocking been for you?

Do take time to check out the info here, and if you have any questions at all, please don't hesitate to ask.....we're all here for you and each other.

special hug tp you :!:

Pat O
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Postby silkie » Sat Dec 02, 2006 1:50 am

Hiya Lisa

Huge welcome to the Family

It is so good to find people you can relate to and they to you

Do check out the info here it will help you so much

and Pat is the best there is (my opinion and loads more) for help and guidance

I would have thought you might have had a little treatment as Pat mentioned before the sexy leg gear.


The depression and tears they come with most conditions hun

we all have off days but there is if you lookafter your limb a certain ammount of control we can have

Check out especially. MLD skin and nail care they are ultra important

big factor in reduction of swelling and infections

As pat said the littlest thing if it worrying you just come here and
ask

We also Vent a lot here mad sad dissapointed angry come talk about it
helps the depression, so does laughter and we have the most wonderful crazy family here they support encourage and help immensly

Huggggggggggg

Silksxxxxxxxxxxxx
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Postby Lisa » Sat Dec 02, 2006 3:51 am

Hi guys, thanks so much for the welcome, you don't know how much it means to me! :D I'm so happy that I have a great family like you to come to, because you all understand exactly, more than my own family and friends sometimes do. My physical therapist Amy set me up on this special massage that I'm to do nightly. I had to do it much more before I got my sock because I had to get the swelling down so that my sock would fit when it came in. Amy told me that my lymphedema is considered idiopathic because they're not exactly sure what area it's stemming from. I was born missing lymphnodes in either my groin or knee area, so the massage I do concentrates on those areas. That's about all the therapy Amy gave me to do, lol. I have been in close contact with her and my fitter Shana and they have been so wonderful with me! They told me that I am a "model patient" because I have been so compliant and have followed every direction they have given me. Amy's actually given me full freedom to do what I need to my discretion with controlling my swelling. She said that I have shown that I can handle whatever my foot does whenever without any problem. :) The stocking's been fine, this is actually my second day of having it, lol. So far its been okay, I have felt some pain in my middle toe and at the back of my leg a bit. How are you all? What kind of lymphedema do you have and how'd you get it? Thanks again for all the support!!! You guys rock! Today is a good day. I haven't been able to wear regular lace shoes in two years and today I was able to get a pair(both shoes the same size!!!!!!!!! :D ) that actually fit without any discomfort!!!!!!!! I could not be happier!?! lol
Lisa
 
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Location: Vallejo, CA

Postby joanne johnson » Sun Dec 03, 2006 1:12 am

Hi Lisa,
This truly is a wonderful family and I am glad that you are doing so well and have joined us too. I have had lymph in both legs for almost 25 years ( no known reason) and never knew another person with this condition. I accidently came upon this site and consider it a wealth of info. and a wonderful group of people who are supportive and understanding of the unique problems we all share. It really helps alot to be able to share our ups and downs with people that totally understand! :lol:
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Postby Lisa » Sun Dec 03, 2006 3:24 am

Hi Joanne! Nice to meet you. Yea I had never heard of lymphedema until I had been diagnosed with it, and I didn't know of anyone who had it either. I just found out though that my uncle has it in his full leg, and he actually got fitted for his compression sock the same time, same day I did. Now that I've learned about this condition, I'm starting to learn and meet so many more people who have it and I no longer feel so alone like I did a month ago when I found out I had lymphedema. That must be hard having it in both legs Joanne! So you have no idea how it happened? My fitter was telling me that some of her patients had gotten it from car accidents, twisting their ankles, getting bit by bugs. When I first had this swelling 2 yrs ago, I went to see a podiatrist and he seriously thought that I had been bitten by a bug and had an allergic reaction!
Lisa
 
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Location: Vallejo, CA

Postby joanne johnson » Sun Dec 03, 2006 11:59 am

Hi Lisa,
I saw many doctors before I got a diagnosis from a vascular surgeon. I always had poor veins ( maybe from having 4 kids in 5 years!) My own fault but it was my choice. Anyway, I had several blood clots in my legs and I was told that may have caused the lymphedema. It started when I was in my late 30's.

I think you have a very positive attitude, which helps. You learn to accept, adjust and go on with your life and continue to enjoy everyday. Actually, I think it is easier to have lymph in both legs as I have a matching pair and don't have to consider each leg separately. We all learn to deal with what has been given to us.

Nice to meet you too Lisa! :D
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Postby Lisa » Sun Dec 03, 2006 4:07 pm

Your right Joanne! lol sometimes I feel that my right leg gets jealous of the left one getting all the attention hehe. I have learned to accept it and move on, though it still gets me sometimes, ya know? At first I was crying every night praying to the Lord asking Him to show me some light on this situation, and please show me some type of reasoning. I use to feel so bad about feeling bad about my situation when my best friend has no kidneys and is in dialysis every Monday, Wednesday, Friday of each week with no exception. I used to tell her that I was sorry I was crying about me when I should be crying about her, and many times I have. She has been my rock though, she kept track of all of my appointments procedures and asked everyday how it was going, while my other friends phased out at the first week of my diagnosis. We share the same birthday 4 days after the Lord's birthday (we joke saying this is some type of a sign, lol) and both of our wishes is that she can get a kidney transplant before her birthday this year. It's funny we have lost each other in life a few times, but we always find each other. And she just came back in my life a few months ago, right before all this started, and all her major problems started (we also joke that this is a sign) and we are both sure we won't lose each other again. She has always been able to make me smile no matter what is going on, and I hope you have someone like her in your life, as with all of you out there that have lymphedema too. Hope you and your family is well Joanne!! God Bless you
Lisa
 
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Location: Vallejo, CA

Postby joanne johnson » Sun Dec 03, 2006 5:07 pm

Hi Lisa,

I'm glad that you have such a great friend. I also have a close group of friends that just accept me for who I am.This condition only changes us on the outside, not the inside. It's okay to feel bad about it sometimes as I'm sure we all do. It is not easy to deal with 24/7. Lymphedema is a real test to show us how strong we really are. If you have any questions about clothing or shoes just ask away. I kind of have it figured out for myself after so many years. I love my life and the people in it. God is good. I became a grandmother for the first time this past Halloween. I feel blessed to have a beautiful new grandaughter in my life. It doesn't
get much better than that! :D

Hang in there Lisa and keep up the good work!
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Postby Lisa » Sun Dec 03, 2006 10:30 pm

Congratulations Joanne on becoming a grandmother! That is so great, I'm so very happy for you. Thanks for offering to help, you are so sweet! But since you did lol, I am having a hard time finding shoes that fit. I normally have wide feet as it is, and this sock makes it a little wider and spreads my toes to where they're rubbing against the sides of my shoes, and it's not comfortable at all! I usually go to Payless because they have wide shoes, but I just got some elastic ones that still don't fit well, and my poor baby toe is very angry! Any suggestions?
Lisa
 
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Location: Vallejo, CA

Postby silkie » Mon Dec 04, 2006 5:50 am

Hi Lisa

Shoes there are Crocs that a lot of members have success with
Fly Flots to i love them

Birkenstock to. All have web sites check out if they retail near you

Hope this will help

Hugssssssss

Silksxxxxxxx
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Postby joanne johnson » Tue Dec 05, 2006 12:57 am

Hi Lisa,
I really had to search to find shoes to fit comfortably but I finally did find some. They are quite expensive but do last a very long time. Look in the yellow pages of your local phonebook under shoe stores for hard to fit sizes. You should find something. My feet are very swollen both wide and thick. The shoes I wear are not the height of fashion but they do the job! Good luck! The very popular crocs that Silkie mentions do not fit me.
joanne johnson
 
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Postby silkie » Tue Dec 05, 2006 4:54 am

Hi Joanne

I cant wear crocs either i have a high instep as well ad big feet

so the top of my footplus swelling comes high so i have to have low fronted shoes as well .

I wear fly flots not really shoes more sandals and backless
but the back of my heel normal shoes dig into the rings i have round them

I know many that can manage crocs tho and they have new range of designs out

Would be fantastic to wear "real Shoes" again

ah well it is good to wear anything after the velco bootees i used to have to wear lol Oh i looked really sexy in them.
Felt like a bag lady lolllllllllllll

huggggggggggg
Silksxxxxxxxxxxxxxx
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