26 F, California

[erinfisher]

Hello everyone. I have Primary Lymphedema in my entire Left leg. I was diagnosed about 6 years ago. I do not wear bandaging because it seems to make life more difficult and I get more depressed. I try to continue life as if it is not there and then elevate at night. I was in a bad car accident about 3 years ago and I had a few months of Lymphedema Physical Therapy and massage. I did not feel like it did anything for me. I have a one leg stocking that velcroes at the waist, it falls when I walk and bunches behind my knee causing it to rub it raw so I do not wear it either.
I do not currently have Health Insurance and I am having trouble getting it, however I know I need it. They say I am too high risk to qualify! Grr... Anyway, i am rambling, it is my first time on here. Happy New Year!
Erin

[Jami]

I just wanted to say that anything you do for your leg is better than nothing. Elevating it as much as you can and doing the foot pump exersize while it is up or swimming- that is my personal favorite. You might also want to check online to purchase bandages, ect. Sometimes it is cheaper anyway. Here is a link to a website I just found. Anyways I hope this helps. Take care~

http://www.lymphedemaproducts.com/

[suzeeq]

Hi Erin, I hope you don't mind me responding as I am old enough to be your mother. I actually have a 26 year old daughter, another one who is 21, and a son 28. Sometimes they listen to me and sometimes not. Lol! Anyway, I don't mean to preach, but you need to wear your hose. I have lymphedema in my left leg and I wear a one legged pantyhose, which works great. Just picture regular pantyhose, but the right leg only goes to mid thigh. It doesn't slide at all. If you don't do as much as you can now to help your leg, you will get complications. Untreated, this conditiion only gets worse.And if you are having trouble getting insurance now, just think if you start getting cellulitis frequently and need hospitalizations! I know you are only 26, it is unfair for you to have to deal with this. But YOU have to take care of YOU, and do anything that you can to prevent further complications. It is not going away. Do you have parents or any other family members who can help you purchase stockings, since you don't have insurance? I know it's expensive. I think my hose were $140. Do you know how to do the manual lymph drainage on yourself? This site has instructions how to do this. Read all that you can about this condition, then do what you need to do. Doing nothing is not an option. PLEASE, take care of yourself.
Susan, another mom who cares

[patoco]

Hey Erin

Like Susan...I'm an oldie too , my daughter is your age. But, Susan is soooooo correct in what she was saying. Untreated this condition just gets worse....and very likely the cellulitis and other complications will set in.

Please do what you can....do everything you can to help manage the lymphedema. Trust Susan and I when we say we understand what a hassle it is.

I was born with lymphedema....every single day of my 54 years I've experienced what it is like having it.

Growing up, we didn't have the decongestive therapy or compression garments that are available today....they were not even heard of back then.

As a consequence, I am dealing with so many of the complications and struggling just to survive. I have spent half of the last two months in the hospital...and in November it was a question whether or not I would pull out of things.

So please, do what you can. Very glad you found us and joined.

If you have any questions just ask. Someone will always drop by and even though I don't keep up as quickly as I used too, I check in too.

My very best to you.

Pat O'Connor

[erinfisher]

Dear friends

Especially to you parents that wrote me.. I appreciate your response. I have a huge lump at the end of my bed to elevate, that is all I do really. I have a JOBST stocking for one leg that velcros around my waist (insurance helped me with that but the place said it was $600). The reason I do not wear it is because the stocking slides down constantly causing the material to rub and gather on the back of my knee and make it raw. I was more afraid of infection and the fact that it became so sore I stopped wearing it. I am not so good at the personal lymph drainage. This whole thing is quite frustrating. Thank you for your support. Best of luck to you. Pat, I hope you are feeling better.

erin

[Daisy]

Erin, I still pretend I'm young I'm 41 and developed my LE just about 20 years ago. What a pain to be in my prime and having to wear granny socks! I wish that I had found an LE specialist (or even had a diagnosis) back then because I didn't know what I had or how to care for it. I could have avoided a lot of unnecessary pain and a whole lot of cellulitis.

I had those goofy one-legged hose w/ the waistband. The velcro on that waist would dig into my side and rub me raw, and the whole thing would slide down and chafe the back of my knee. When they got old, they would slide down even faster and cause more pain.

Now I wear thigh-highs w/ the sticky band. It wasn't too hard to get used to. Make sure they're laundered on schedule or the band loses its stickiness. And replace them every six months or they work less and hurt more.

Check into buying your stockings on line. Mine are only $79/pair or so. I buy toe-less in the summer (and wear cute slides with a wide band to cover the edge of the stocking) but I buy them w/ toes for winter. Yes, I paint my toenails in the summer - but I've learned the hard way to be really careful w/ "pedicures". (The toes/no toes also tells me which ones are old).

My Tribute garments were expensive (they're custom-made - but I had sooo wanted a night garment that would remove the swelling at night so I could get up in the morning w/o pain.) I don't use them every night - just when I haven't been good w/ my stockings, or have been on my feet all day. They so relieve the ache!

Try to think of your leg care as a "pampering", like painting your toenails or giving yourself a facial. Do it every night, even if just a little, for a couple of weeks, to get into the routine. And come back here for support from those of us who have BTDT.

[Daisy]

Erin,
I gave some thought to your insurance issue. Obviously it's best if you can find a job with group health insurance, but those are getting harder to find. Many of the larger companies offer great benefits - you might need to take a job that isn't your dream to get the benefits.

If that's not an option, look into groups that you could join - alumni, professional organizations, various groups work with insurance companies to get better rates. Notice I didn't say great rates, just better.

Some insurance companies might exclude your stockings and other care but still provide major medical, or catastophic care. This is better than none at all. Additionally, some insurance companies will "manage" your medical bills for you - but you will be self-insured. This means that for a fee, they'll pass on their negotiated rate to you. This can be significant! But you need to have the cash to pay in a timely manner.

Check with your state for a high-risk pool. Illinois has a limited amount of coverage available for people who cannot get insurance any other way.

When you need care, don't be afraid to negotiate with the doctor and hospital - if you can pay quickly, they'd be willing to take less money in exchange for getting it fast.

And finally, being without insurance is even more incentive to take care of your legs. You do NOT want to be dealing with an infection or something because you neglected basic care. This is one time when an ounce of prevention really is worth more than a pound of cure. (See, now I have granny adages to go w/ my granny socks )