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fed -up

PostPosted: Wed Aug 23, 2006 10:14 am
by butterfly
hello just checking in to say that i'm feelong a litle frustarted right now. I know I have been moaning alot lately but sometimes I feel like my life is even more limited than it was before due to my specific leaining disabilities. i know that alot of you are suffering alot more than me and I only ahve stage one but sometimes this feel like one more thing to add to my frustration. I'm only 27 but sometimes life feels like one big struggle after another.
rant over!

PostPosted: Wed Aug 23, 2006 11:08 am
by joanne johnson
Hi Butterfly, We are always ready to hear what you have to say. Ranting is good, makes you feel like someone is listening, and we are. We all have the same feelings and concern and can relate to how you are feeling. Wishing you a good day!

PostPosted: Thu Aug 24, 2006 9:44 am
by butterfly
thankyou joanne.

PostPosted: Thu Aug 24, 2006 9:53 am
by PamelaS
Hi Butterfly,

We all need to vent/rant once in awhile and get things out of our systems. I am glad that we have the opportunity to do it here - so feel free.

I also have stage 1 lymphedema but there are times when it is limiting and frustrating and that is normal.

Hoping you have a better day!

Pamela :)

PostPosted: Thu Aug 24, 2006 11:23 pm
by gottahavesun
hey butterfly-i hear ya about feeling alone and frustrated-i have le all over but last year i noticed problems with memory and cognitive funtioning as well and to me it is worse than le. i'll admit that sometimes i feel flat out stupid if i compare myself to how i was before. i now allow myself to feel that way and then start thinking of what i can do and also find it challenging(in a good way) to find another way to do the things i love. life is full of challenges even if we weren't ill and we just have more lemons to make lemonade with.....realize also that it is perfectly normal to vent and cry if you need too--we all do it just thank goodness not on the same days.


PostPosted: Fri Aug 25, 2006 3:47 am
by silkie
Good Morning Ladies and Gentlmen


Hi Lisa nice to see you hugggg

Ok a Silkie Story

My Hubby used to do the lottery He bought too many tickets each week
We finally talked and he hlaved the ammount.

Now he checks his tickets every week and
he checks the numbers we don't do any more MAD i think so
what is the point to be able to say one day I could have won on that one?

Life changes lymph or not what we used to do changes if we only ever did What we used to do we would never move on keep on learning

What i did at 16 wow was great then how boring to be doing the same thing year after year im 55 now I have lovely crazy memories of what has passed I want lovely happy memories of today and tomorrow

If im to busy looking back im missing the future

Life alters we move forward things we used to do are past and new things in the future

Lisa i know how hard a time you had for so long when lymph started
Do you realise just how marvelously you got thru all that and are living NOW today The challenge you faced and now look at you

Dont look back on what is past it is wasting today

Life to all of us is a new challenge each day it always has been

and will be What we used to do is memories What we do today to will become a memory and a step towards the future

You have new challenges lymph being a huge part of that

I personally think all the things i used to do were great but this living with lymph is what i am becoming sure is the best thing i have ever done

because I am Living im not remembering what i used to do but
Doing things today that when my lymph became a big problem
If i had sat back and longed for what i used to do I would never have got round to living today

Don't look back live today I think it makes our tomorrows a lot better to look forward to



PostPosted: Fri Aug 25, 2006 9:41 pm
by Kim
You make it sound so easy, Silkie!

I felt like i had just started really living when i got sick and got LE. After losing 70 lbs, I was finally free of the "fat" trappings that were holding me back from enjoying life. That lasted for 3 short months! Not that being heavy has to prevent a person from that, but I let it totally dictate my life and make me miserable. I am back to hating my life again, and the last several days have been really bad. I've been trying to get myself out of this slump, but so far it's not working. I totally resent what has happened to me. I had been working so hard at developing a life so that when my last child left home, I would have a life. I am now right where I didn't want to be...but worse because LE. So i'm having a very hard time letting go of the past and what to me...should have been. It just makes me so angry, at times I feel that i'm going to lose it.

I know i've got to get past this and find a way to enjoy life, but i'm finding it impossible. I started volunteering at a children's hospital this past week, and I am hoping that this will be a good outlet for me...helping someone else and getting outside of myself.

Sorry for spoiling the upside of this topic, but I needed to get this out.


PostPosted: Sat Aug 26, 2006 1:23 am
by gottahavesun
You are not spoiling the topic Kim. Read back to some of my old posts Kim and posts from others and you will see we have all felt as you do right now. My posts from a year ago infact where I was upset(angry really) about having to go on long term disability instead of working a job I loved and figure out what I was going to do with my life. Well once I grieved about having to make an unplanned life change, I could figure out what I wanted to do at that point. I don't think too much about the future and what I can and can't do but like Silks said I focus on what I can do right now and enjoy now as much as possible. You know the Tim McGraw song Live like you were Dying came out last year and I really do live for the most part for today because in reality none of us sick or not know what we can do tomorrow.

I use to sleep late just because it hurt too much to get up and because what the heck did I have to do or could I do. Once I started realizing that GOD has a purpose for all of us and not to waste the day because I'm not sure what my direction in life was, I was able to enjoy my day. I now get up between 8-8:30am and eat breakfast at the table and read the paper and go on about my day. I did start this month keeping a list of what I've done during the day so if I'm feeling like I didn't do much I can look back and realize how what I did accomplish-even things like taking a shower that others may take for granted. My list also helps when I'm having a bad day/s that there are good days when I can do more.

Gosh I think I'm rambling too much, as it is almost 1:30am my time and way past bedtime, so I'll sign off for not. Hugs to you Kim.

PostPosted: Sat Aug 26, 2006 3:10 am
by silkie
Hi Kim

Nothjing worth doing have i ever found easy

I Only know I have a condition 2 lymph and lipedema

and I want to live today and go forward to tomorrow

I keep saying its not easy hard work

but i happen to think i an worth the effort


PostPosted: Sat Aug 26, 2006 5:51 pm
by Kim
Thanks Lisa,

It really does help knowing that someone else has had the same feelings that I do...and more importantly, what they did to get past it.

I've been staying in bed late....thinking what's the point of getting up? All i do is the LE management crap anyway and it just keeps getting worse regardless of what i do. So why bother!! But I know that if I did nothing it would be so much worse than it already is, so I keep on doing it....not sloughing off there. Going to the hospital to volunteer is something that will get me up and going...a reason to get out of bed and get myself together!

I know there has to be more to the rest of my life than this, but I'm having a hard time finding it. However, just doing things will not make the difference; it has to start with me...inside. I thought I had a pretty good handle on my "new" life, but it's come back and slapped me...HARD! I know God holds the key, but frankly right now i'm more than a little ticked off at Him! He can handle it though and loves me anyway...thankfully!

I like the idea of writing down the things that we are able to do during the day. It's something positive to actually think about and look at. A friend of mine recently gave a journal to me to write down things that I am thankful for...from the past and now....I could add to that with my daily activities.

So here's to being more positive...or at least trying!!
Kim :)


PostPosted: Tue Aug 29, 2006 5:02 am
by gary1955
I hear all of you and I feel like ranting a little myself. I've been putting up with this 3rd stage LE now for 10 years and I haven't made much progress if any. This year has been the worst for me as far as depression goes. I'm starting to feel like a real piece of crap and that I am completely useless. I feel like a burden to my family and society. I think I've hit an all time low... can't seem to get any control over my life. Makes me wonder why i am even here on this planet. I can hardly walk now and my breathing is very bad. Of course my weight is way out of control. I know some of you have learned to cope with LE, but I wonder if there's life after lymphedema?

PostPosted: Tue Aug 29, 2006 9:52 am
by gottahavesun
Hey Gary,
You are useful and your family and society need you--why, well lets look at your family-they love you and want to be with you-maybe you feel like a burden to them but they just want to be with you-why do you feel that you need to be doing something that you aren't already doing--being there to love them and talk to them-you don't have to be able to mobile for that-you just need a good ear, warm heart, and some good stories to share.
Burden to society--nope not that either-you are a wealth of info on LE and obesity and you have that gift of knowledge to help others by giving them knowledge on both, giving them an ear(seen you do that on these boards), being a friend, etc.

You say you have been putting up with LE for 10 years and haven't made any progress--well you are here to rant and excourage others about LE aren't you??? I know we all need rants every now and again(and boy do they feel good to get out) but now is the time Gary to remember you are someone to your family, friends, and others you meet and we all love you!


PostPosted: Tue Aug 29, 2006 11:55 am
by joanne johnson
Hi Gary,
I am sorry to read that you are feeling so low. Don't be so hard on yourself! None of us asked for this lymph condition but we got it anyway. It makes us stronger to battle the "beast." We all have an inner strength and you have it too. I always enjoy reading your posts because you are a funny, caring, sensitive, charming dude. Yes, life does go on with or without lymph.

Think about all the people and things that make you enjoy life. They are still there, just look a little harder. Rant all you want, we are here for you. I have had lymphedema in my legs for 25 years. Married, raised four children and looking forward to my 1st grandchild in Nov. There is always a rainbow waiting to be discovered. On the downside my husband is losing his job on Sept. 30th! Seize the day! Please let us know how you are doing.

PostPosted: Tue Aug 29, 2006 3:21 pm
by gary1955
Thanks Lisa and Joanne... I know i have many friends here on this forum. And I always have God to turn to. I hope your husband is successful in finding a new job Joanne.

One thing I am thankful for is my Great niece and nephews. They are age 1 to 4 and always bring a smile to my face.

PostPosted: Tue Aug 29, 2006 3:36 pm
by silkie
Hiya Gary

I agree whole heartedly with the postings to you

Id like to add sweetie live your life not your lymph

you have to believe you are worth it Gary and you are

your family much as they love you find it hard to understand what you are living with heck we dont understand it and its happening to us
so they need you to understand they dont want you to feel guilty
they need your understading in there bewelderment as what they can do to help

And society well education education education they see what the advertisers tell them big people mean greedy lazy and big bucks in all kinds of crap they are selling to make you look like "Mr athletic body 2006" Pat Bob Bill the nln als lighthouse etc etc are all doing there utmost to make lymph something that becomes known and recognised as a condition not a self abuse

maybe that is something that can help you adding you experience in lymph to forums (as you do ) a blog out there on the net become active in helping legislation in your area or support groups

I felt totally useless when i had to stop work
the chat group I did to help others find info easier it helped me so much
to feel i was uselfull and i was giving a little something back to people that had helped me

I love seeing you on the forums to you know here so many of us find the understanding help and support that we sometimes see rarely outside the lymph world Not because were unloved or unsupported but because we have the same experiences and its like most things in life

until you have experience you really dont realise what its all about



PostPosted: Wed Aug 30, 2006 2:11 am
by gary1955
Thanks Silkie for caring. :D

PostPosted: Wed Aug 30, 2006 7:13 am
by silkie
Hi Gary

huggggggggggg ya me friend

Silks xxx

PostPosted: Wed Aug 30, 2006 4:19 pm
by joanne johnson
Hi Silkie,

As I read your post to our friend Gary what you said was so true. Our families and friends really don't understand as you have to live with it and experience the wackiness of this condition yourself. True, we don't understand half the time either and the roller coaster we must ride every single day.

I hope we can get Gary to accept himself as we accept him and put a little smile on his face. Cheers! :wink:

PostPosted: Thu Aug 31, 2006 1:01 am
by silkie

Don't you find a :D S M I L E :D is a wonderful gift

most of the time you give a smile you get one back :lol:

a smile can disarm those stares much more that angry words :lol:

a smile can dispell the dullest of days :D

a S M I L E is infectious :D


and it makes the day better

hugggggggggg :D :D :D :D :D :D :D :D :D :D :D :D

Love Silkie


PostPosted: Thu Aug 31, 2006 5:18 am
by gary1955
A good shot of moonshine will do that! Too bad I can't drink libations anymore. It'd probably kill me. :) It's 5:15 am here in Ohio... that's why i'm still up...can't have a nightcap. :twisted:

PostPosted: Thu Aug 31, 2006 7:21 am
by silkie
Hi Gary im a night bird to

Try hot chocolate and a borning tv programme works with the zzzzzzz's


Silks xxxxxxxxxxxxxxxxxxxxxxxxxxx