Off Topic!! A personal experince

[Guest guest]

This past week a member left our group because she felt I posted too many "personal emails". Well. I'm sorry she felt that way, but I intend to continue posting my personal ideas as long as I feel it will help to "move the space forward" as they say in the est training I took over 20 yrs. ago.Having EN has taught me many things. One of them is not to judge people. When I was a girl of maybe 11 or 12 I remember accompanying my mother to the "fruit and vegetable store" as we called it in Brooklyn. I remember that the store was crowded and I waited outside for my mom to do the buying.I saw a woman who was carrying a small grocery bag. She shuffled along wearing slippers. Her housecoat looked like she slept in it. Her legs were covered with red sores. I made a judgment that she must live in filth to have such awful bug bites on he body. A mere 10 years later a misinformed doctor was telling me my painful EN legs were covered in fleabites. I felt ashamed to think that I misjudged that poor woman who was probably feeling pain with every step she took. At times I have been that women. I have walked in her slippers. I try to never judge anyone now. EN has taught me to look beyond physical appearances to the very soul of everyone I have the honor to meet. I know this is "personal" and not very medical, but I'll bet there are members who have felt the same as me. Anyone who has a personal story to tell about how EN has affected his or her life, feel free to share. We are all traveling the same road, for better or worse. Let's make it for better.Love,Idio. EN since `68

[Guest guest]

Oh , the very nature of each of our specific diseases is personal. You offer support, comfort, attention and a real feel of heart to this site. I have met a few doctors in the process of getting treated and hopefully one day I'll find someone who wants to take my rare case on, but this site has offered me the hope to keep trying and the comfort that I am not alone. Because I have felt very alone after struggling with unanswered pain and unanswered medical support.

, keep moving ahead with that wonderful heart of yours. That heart of yours has brought awareness, comfort and a place to find support for all of us.

My whole family and I all use goodsearch.com. It's so easy.

Blessing,

jonni ~atlanta

alpha one antitrypsin deficiency with sever panniculitis

since march 07

<><~~~~~Life is not measured by the number of breaths we take, but by the moments that take our breath awayGet a sneak peek of the all-new AOL.com.

[Guest guest]

Hi , Jan from Australia here. I do not come on and speak often as mainly listen in to get my dose of support from afar, but your letter has prompted me to speak. The pain that those of us suffer when in a chronic stage is just that..CHRONIC... Yes we shuffle and find it hard to walk at all at times the pain is so intense. You would swear that your legs have been stabbed though and have massive infections oozing out of the massive holes down to the bone, but to look down , no our legs are red swollen hard engorged lumpy pieces of what feels like wood from below the knees down. It is excruciating. I have had this bout for what seems like forever and even when one section eases another or multiples of anothers are already swelling up . I too have had my days where I cannot find the energy or the will to shower, where simply to shuffle to the toilet is all you can do. I had always prided myself on being well dressed and groomed before having this but now I too have slept

in the same clothes as worn the day before to get up and plod through to find in the blur and agony of trying to put meals on the table for the family it is easier to just go to bed like that again. You are right, one learns not to judge and one must not judge others as you never know what they may put up with themselves, a lot of times when I am really feeling miserable I will often look through the emails here, to remind myself I am not alone in this. Thankyou for being there, regards Jan Strecker wrote: This past week a member left our group because she felt I posted too many "personal emails". Well. I'm sorry she felt that way, but I intend to continue posting my personal ideas as long as I feel it will help to "move the space forward" as they say in the est training I took over 20 yrs. ago.Having EN has taught me many things. One of them is not to judge people. When I was a girl of maybe 11 or 12 I remember accompanying my mother to the "fruit and vegetable store" as we called it in Brooklyn. I remember that the store was crowded and I waited outside for my mom to do the buying.I saw a woman who was carrying a small grocery bag. She shuffled along wearing slippers. Her housecoat looked like she slept in it. Her legs were covered with red sores. I made a judgment that she must live in filth to have such awful bug bites on he body. A mere 10 years later a misinformed doctor was telling me my

painful EN legs were covered in fleabites. I felt ashamed to think that I misjudged that poor woman who was probably feeling pain with every step she took. At times I have been that women. I have walked in her slippers. I try to never judge anyone now. EN has taught me to look beyond physical appearances to the very soul of everyone I have the honor to meet. I know this is "personal" and not very medical, but I'll bet there are members who have felt the same as me. Anyone who has a personal story to tell about how EN has affected his or her life, feel free to share. We are all traveling the same road, for better or worse. Let's make it for better.Love,Idio. EN since `68

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[Guest guest]

huh? dang!

i can't immagine what it was that she thought she was missing. this

is the very thing that keeps this group alive and i think helps so

many people here. gosh, i remember joining when there was, like, 200

people...or less. now there is over 1,600? whew!

well, you are right rebecca about judging people. i learned that

lesson too....several times over (slow learner here).

i guess the thing that my pg really taught me is what pain REALLY

is. i thought i had experienced pain, then i got pg. eh, no, i

never really did, not even close. you know when in your life you

realize something (normally with people younger than us...lol) and

your thought processes reach a new level? well the pg pain, in

respect to my level of known pain and then after, i had elevated

several...quite a few levels. what an experience!

jeff

- In erythema_nodosum_Group , " Strecker "

wrote:

>

> This past week a member left our group because she felt I posted too

> many " personal emails " .

>

> Well. I'm sorry she felt that way, but I intend to continue posting

> my personal ideas as long as I feel it will help to " move the space

> forward " as they say in the est training I took over 20 yrs. ago.

>

> Having EN has taught me many things. One of them is not to judge

people.

> When I was a girl of maybe 11 or 12 I remember accompanying my

mother to

> the " fruit and vegetable store " as we called it in Brooklyn. I

> remember that the store was crowded and I waited outside for my mom

to

> do the buying.

>

> I saw a woman who was carrying a small grocery bag. She shuffled

along

> wearing slippers. Her housecoat looked like she slept in it. Her

legs

> were covered with red sores. I made a judgment that she must live in

> filth to have such awful bug bites on he body.

>

> A mere 10 years later a misinformed doctor was telling me my

painful EN

> legs were covered in fleabites.

>

> I felt ashamed to think that I misjudged that poor woman who was

> probably feeling pain with every step she took. At times I have been

> that women. I have walked in her slippers.

>

> I try to never judge anyone now. EN has taught me to look beyond

> physical appearances to the very soul of everyone I have the honor

to

> meet.

>

> I know this is " personal " and not very medical, but I'll bet

> there are members who have felt the same as me.

>

> Anyone who has a personal story to tell about how EN has affected

his or

> her life, feel free to share. We are all traveling the same road,

for

> better or worse. Let's make it for better.

>

> Love,

>

> Idio. EN since `68

>

[Guest guest]

Hello Rebbecca and group,

I personally like to read off topic subjects too. I like the fact that this group and my sarcoid group is opened to personal things happening in our life. Example I just posted a request for prayer for my family concerning a divorce going on in my family on my sarcoid group. I love the fact that these two groups are here to uplift us with our medical needs as well as our emotional and personal life beyond computer land. One more thing I cherish the medical research you give us . Sometimes researching something online takes a lot of time, so know I for one appreciate your time and effort and love you give us.

Shelia

en/sarcoid aug 2005Get a sneak peek of the all-new AOL.com.