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Hello Everyone

PostPosted: Mon May 10, 2010 1:28 pm
by gottalovesj
Can I just say what a BLESSING this site is. I'm so glad I found it. I'm 24 years old and I had a stage IV Melanoma on my left ankle when I was 19. I have been dealing with horribly aggressive lymphedema in my left leg, mainly below my knee espeically in my ankle for the last five years. I live in Ojai, CA and its HOT all year so its extremely difficult to manage. I have been trying swimming--but truthfully have not been super dilligent with anything other than my stocking because I just get frustrated. It's so refreshing to find a community of people going through this as you know lymphedema is practically unknown among my peers--who would think about lymphedema in their 20's? Any information I can get I'm happy to recieve--specifically if anyone had any advice about health insurance?? I have been able to be on my parents insurance through my fathers job its a Blue Cross COBRA and it expires this Novemeber. Choosing insurance is a scary and frustrating thing and if any one has any input. Also if anyone has developed an excerise routine or knows of any low impact workout I can get on and start making some progress!!! Thank you so much, again for this site
<3 Amanda

Re: Hello Everyone

PostPosted: Sun May 23, 2010 1:34 pm
by ma1290
Hey there,

The heat can definitely be difficult to deal with! Swimming is a great way to try to manage the LE.

Welcome to the site!

Re: Hello Everyone

PostPosted: Mon May 24, 2010 12:27 am
by bayoulady
Glad you are here. I don't post much on boards, but that is because I have learned so much, that so questions. ( But just wanted to say hello, and welcome!

Re: Hello Everyone

PostPosted: Mon May 24, 2010 8:54 am
by patoco
Hey Amanda

Wow...I'm really really sorry that I didn't see your earlier post on May 10th. :( :( :cry:

Super welcome to our family here and we do look forward to getting to know you. You would be amazed at just how many melanoma patients get lymphedema. It seems like we have quite a number both here and in my online support groups.

Health Insurance - this is going to be a toughy for the next couple months.

Your first option of course would be group health insurance, if you are able to work. I was able to work from age 17 until just last year (age 56) when my lymphedema/cancer situation really became horrible. I was never denied coverage from any group plan I ever had.

Now, I did have problems with getting LE covered - but even that eased up in the last few years.

According to the new law that was just passed:

Starting on June adults with pre-existing conditions will be eligible to join a temporary high-risk pool, which will be superseded by the health care exchange in 2014.

Then on September 23, 2010 insurers are prohibited from discriminating against any individuals under the age of 19 based on pre-existing medical conditions.

So at that point, you would be able to secure even private coverage. Knowing the insurance companies though, whether anyone will be able to afford it is another question.

BTW. California does have it's own high risk medical program for pre-existing conditions. What will happen to it now under the Federal law is anyone's guess at this point. I found info on it at this site:

Health Insurance Finders ... -pool.html

For learning more about LE, I would really start with this pgae: ... lymphedema

There are links too at the bottom of the page with further info.

Then, you might just want to scan through our Wiki pages:

Index ... id=Welcome

and go from there. We have probably close to a thousand pages of info on both Wiki and the old HTML format - plus the forums.

Don't hesitate either to jump in and post any question or concern. We're all here for each other.

My very best!


Re: Hello Everyone

PostPosted: Sun May 30, 2010 6:03 pm
by PeggyE
Hi , I just joined and I really have no idea what I am doing, I have have had lymphedema for 9 years, I wear a sleeve and a glove, I hope to find others with my problems, right now I seem to have hurt my arm . PeggyE

Re: Hello Everyone

PostPosted: Mon May 31, 2010 7:44 am
by patoco
Hi Ya Peggy

Super welcome to our family here :!: :) did good for not knowing what you were doing. If you have any questions, thoughts or concerns, just pop in a post like you did. If you want to respond to another post, just look for the "reply" box, click on that and go from there. it won't tal long before it's like second nature to you.

How did you hurt your arm? Is it in the LE arm? If so, you may want to contact your doc and/or LE therapist as it may effect the LE. I have LE in both arms and legs and am always dinging myself somehow, no matter how careful I try to be. Ugh....very frustrating too.

Very much look forward to getting to know you and in hearing back from you too!!!!


Re: Hello Everyone

PostPosted: Tue Aug 10, 2010 8:36 am
by joyous
Hello everyone – :) I use to be on here a lot – but I have a new disease – I got Shingles in Late January and I am still suffering with Post shingles that is what I call it – for the last 8-1/2 months – and while I am taking care of my Shingles -

My legs in this heat are awful - I just can not take them - yes I been wearing the stockings but sometimes they are just too hot to wear in this heat

I do elevate my legs as much as I can I have my right leg which has been the bad one for over 15 years now

I have been falling alot on my legs also - but lately every thing been good

Hello :lol: Pat and how are you doing :D – haven’t heard anything from you lately

just wanted to come on and said hi to everyone

hugs to everyone - joy

Re: Hello Everyone

PostPosted: Tue Aug 10, 2010 2:40 pm
by blubrdfrend
Hello Joy, I am glad that things are better now. You might want to use a walker until you stop falling. I know that it will probably hurt your pride. Pretend it is a lawn mower or baby stroller.

I had shingles several years ago. They were really bad. For those who don't know, when shingles first break out they look like tiny pimples. They feel like little cactus stickers on your skin. They move really fast. A person should get to the doctor as quickly as possible for an injection. Even if you already have them the injection will help. After the shingles were gone I was so relieved. I discovered months later that they reappear periodically. (Post Shingles)
A nice long shower will aggravate shingles almost immediately. Patients in nursing home frequently break out with shingles. The nurses will not put the patient in a tub or shower. They only bathe the body and leave the shingle area completely dry. I hope that they are gone by the time you read this.

Re: Hello Everyone

PostPosted: Tue Aug 10, 2010 3:02 pm
by joanne johnson
Hello! I had shingles about 5 years ago during the summer.They were along the path of the sciatic nerve. Blisters went down by leg and under my foot. I spent 6 days in the hospital in isolation. The only good thing was that I had a private room. Most friends were afraid to come see me that they would catch it! People don't understand about shingles. I remember the night before the blisters broke out I had very strong, painful tingling in my leg. Bad surprise in the morning! I was fortunate as once they were gone that was the of discomfort. Good luck!

Re: Hello Everyone

PostPosted: Tue Aug 10, 2010 3:09 pm
by joyous
Thank you blubrdfrend for the information :D

I use a cane where ever I go - but the falling is in my house like I must trip over my own feet - :? did anyone ever heard of the braclet call Renew - I would love to know if that works - cause I think I should get one

joanne johnson - yes I do agree not one really understand Shingles - I still have the tingling feeling, the itch is out of this world - I would like to deal with the pain then the itch - which of course it up in my scalp now - and the itch - just let me said it - (OMG) HELP :cry: :cry: - I had it on my right side of my face - my right eyebrow has been swollen for the last past 8-1/2 months - I look at it and if it is down and I get a pain in my temple my eyebrow gets very swollen; the pain is something else also.

thanks for sharing


Re: Hello Everyone

PostPosted: Wed Aug 11, 2010 8:26 am
by patoco
Hey Joy or should I say Hi Ya Smiler :wink: :)

It's been too too long since we heard from you...welcome back :!: :!: :!:

My health continues to be kinda iffy. The latest venture was spending a week in the intermediate care of one of the local hospitals. I had three procedures done. A calcified tumor was right next to my gall bladder, so it became totally calcified as well and had to be removed. As a result of the size of the tumor, it actually pushed the gall bladder into the liver. The drainage tube in my right lung had slipped into my abdomen. Since it has been really helpdful, we left it there and just installed a third line for the lung. LOL....really looks weird having three tubes coming out of your body. The doc also removed about 10 growths
from both legs. I am forever getting these fibrous tumors on my leg and we seem to be unable to prevent them, and can just removed them when they get a certain size.

Shingles is really a miserable experience. I had it back in 1986. When I got up in the morning, I had this tiny little spot that itched like mad. Stupid mosquito right? was no mosquito bite. Within an hour of getting to work my entire right side was covered with it. Over time the post shingle problems should subside, but it does take a certain amount of time. I also do hope your doctor gave you something to help with the pain.

The last few years I also seem to be falling all the time. it all happens so fast that I am never able to stop it and have gotten more then a few minor wounds from them. I do use a cane when I leave the house and have a walker for those really tough days. I was totally surprised too as my health insurance actually paid for it - not even an argument from them.

BTW, every few years someone comes out with some type of "miracle" bracelet that promises to make you healthy, wealthy and wise. There actually have been studies on them and thus far there just isn't any evidence to support the creators claims. They have as much effect as wearing a bracelet made out of bread wrapper ties. The only people that are helped are the people who make it as they take the money people send them to the bank.

Don't be such a stranger, ya hear :!: :?: :!: :?: As you an see we have a lot of new members too. I know they would appreciate getting to know one of our original members - can you believe this December will our our seventh anniversay of being online.

Super duper cybers hugs to ya too :!:


Re: Hello Everyone

PostPosted: Wed Aug 11, 2010 8:41 am
by joyous
Pat (PAPA BEAR), :D :D 8) sorry about all your hospital visit - at least that I don't get there - I was there once this year -
I got a rash on my right forehead (I through it was from the cream I was putting on my face) and I said I would wait until Monday to go to the doctors for it I did not know it was Shingles, that was Saturday, Sunday I got these headack and didn't know where that was comming from and then I call the doctor office and the doctor on call said to me if you get a pain in your eye - call me back - so I went to get something to eat - and the pain that went through my eye - fell like someone was sticking a knife through my eye- was something else - so I call my boss and said I wouldn't be in on monday - he though I was having a stroke - I then call the doctor office to tell her I was comming to the hospital - I have no else to call any more - My mother died - and she would be the person I called and he said to go to the hospital - so I call my girl friend one with a car and told her I needed a ride so her and her mom came and got me and the rest is history

I through so with that bracklet - that is probably why I haven't brough it as of yet

seven years boy you must be having fun

do you still sit outside at night and weekend - with you little garden or is it too hot for you - I go to work and come home and I don't leave my house I can not be in the sun and with all this heat we are having - it is just too much for me and my post shingles to handle

what would this new members want to hear from an old timer like my self?

joy :lol: :lol: :lol: