Fw: A l-o-n-g reply =)

[Guest guest]

A recently made friend with discoid Lupus sent me this:

A l-o-n-g reply =)

> A letter to be shared with friends and family

> by Theresa Stoops in Florida

> (Lupus Support and Survival)

>

> WHAT YOU SHOULD KNOW ABOUT ME

>

> My pain - My pain is not your pain. Taking your arthritis medication

> will not help me. I cannot work my pain out or shake it off. It is not

> even a pain that stays put. Today it is in my shoulder, but tomorrow it

> may be in my foot or gone. My pain is not well understood, but it is

> real.

>

> My fatigue - I am not merely tired. I am often in a severe state of

> exhaustion. I may want to participate in physical activities, but I

> can't. Please do not take this personally. If you saw me shopping in

> the mall yesterday, but I can't help you with yard work today, it isn't

> because I don't want to. I am, most likely, paying the price for

> stressing my muscles beyond their capability.

>

> My forgetfulness - Those of us who suffer from it call it brain fog. I

> may not remember your name, but I do remember you. I may not remember

> what I promised to do for you, even though you told me just seconds

> ago. My problem has nothing to do with my age, but may be related to

> sleep deprivation caused by chronic pain. I do not have a selective

> memory. On some days, I just don't have any short-term memory at all.

>

> My clumsiness - If I step on your toes or run into you five times in a

> crowd, I am not purposely targeting you. I do not have the muscle

> control for that. If you are behind me on the stairs, please be

> patient. These days, I take life and stairwells one step at a time.

>

> My depression - Yes, there are days when I would rather stay in bed or

> in the house or die. I have lost count of how many of Dr. Kevorkian's

> patients suffered from Chronic Pain as well as other related illnesses.

> Severe, unrelenting pain can cause depression. Your sincere concern and

> understanding can pull me back from the brink. Your snide remarks can

> tip me over the edge.

>

> My stress - My body does not handle stress well. If I have to give up

> my job, work part time, or handle my responsibilities from home, I'm

> not lazy. Everyday stresses make my symptoms worse and can incapacitate

> me completely.

>

> My weight - I may be fat or I may be skinny. Either way, it is not by

> choice. My body is not your body. My ability to control my appetite is

> broken, and nobody can tell me how to fix it.

>

> My need for therapy - If I get a massage every week, don't envy me. My

> massage is not your massage. Consider how a massage would feel if that

> charley horse you had in your leg last week was all over your body.

> Massaging it out was very painful, but it had to be done. My body is

> knot- filled. If I can stand the pain, regular massage can help, at

> least temporarily.

>

> My good days - If you see me smiling and functioning normally, don't

> assume I am well. I suffer from a chronic pain and fatigue illness with

> no cure. I can have my good days, weeks, or even months. In fact, the

> good days are what keep me going.

>

> My uniqueness - Even those who suffer from chronic pain are not alike.

> That means I may not have all of the problems mentioned above. I do

> have pain above, below the waist, and on both sides of my body that has

> lasted for a very long time. I may have migraines, hip pain or shoulder

> pain, or knee pain, but I do not have exactly the same pain as anyone

> else. I hope that this helps you understand me.

>

[Guest guest]

Very well written. Thanks for sharing.

[Guest guest]

Kayly...That is excellent, thank your friend for me!

I'm really sick of having to explain why I can't do things. Up in our area people tend to think that the reason I'm not working is that I "latched onto" someone who can afford for me not to work.

Even when I went into the PA for my UTI, as I was listing my meds I told her I was on disability (lest she just think I'm a dope fiend, LOL) and she asked why. When I explained to her she didn't say anything but the look said I must be exploiting the system because I look OK.

Thanks again,

Love,

Mom

A l-o-n-g reply =)> A letter to be shared with friends and family> by Theresa Stoops in Florida> (Lupus Support and Survival)>> WHAT YOU SHOULD KNOW ABOUT ME>> My pain - My pain is not your pain. Taking your arthritis medication> will not help me. I cannot work my pain out or shake it off. It is not> even a pain that stays put. Today it is in my shoulder, but tomorrow it> may be in my foot or gone. My pain is not well understood, but it is> real.>> My fatigue - I am not merely tired. I am often in a severe state of> exhaustion. I may want to participate in physical activities, but I> can't. Please do not take this personally. If you saw me shopping in> the mall yesterday, but I can't help you with yard work today, it isn't> because I don't want to. I am, most likely, paying the price for> stressing my muscles beyond their capability.>> My forgetfulness - Those of us who suffer from it call it brain fog. I> may not remember your name, but I do remember you. I may not remember> what I promised to do for you, even though you told me just seconds> ago. My problem has nothing to do with my age, but may be related to> sleep deprivation caused by chronic pain. I do not have a selective> memory. On some days, I just don't have any short-term memory at all.>> My clumsiness - If I step on your toes or run into you five times in a> crowd, I am not purposely targeting you. I do not have the muscle> control for that. If you are behind me on the stairs, please be> patient. These days, I take life and stairwells one step at a time.>> My depression - Yes, there are days when I would rather stay in bed or> in the house or die. I have lost count of how many of Dr. Kevorkian's> patients suffered from Chronic Pain as well as other related illnesses.> Severe, unrelenting pain can cause depression. Your sincere concern and> understanding can pull me back from the brink. Your snide remarks can> tip me over the edge.>> My stress - My body does not handle stress well. If I have to give up> my job, work part time, or handle my responsibilities from home, I'm> not lazy. Everyday stresses make my symptoms worse and can incapacitate> me completely.>> My weight - I may be fat or I may be skinny. Either way, it is not by> choice. My body is not your body. My ability to control my appetite is> broken, and nobody can tell me how to fix it.>> My need for therapy - If I get a massage every week, don't envy me. My> massage is not your massage. Consider how a massage would feel if that> charley horse you had in your leg last week was all over your body.> Massaging it out was very painful, but it had to be done. My body is> knot- filled. If I can stand the pain, regular massage can help, at> least temporarily.>> My good days - If you see me smiling and functioning normally, don't> assume I am well. I suffer from a chronic pain and fatigue illness with> no cure. I can have my good days, weeks, or even months. In fact, the> good days are what keep me going.>> My uniqueness - Even those who suffer from chronic pain are not alike.> That means I may not have all of the problems mentioned above. I do> have pain above, below the waist, and on both sides of my body that has> lasted for a very long time. I may have migraines, hip pain or shoulder> pain, or knee pain, but I do not have exactly the same pain as anyone> else. I hope that this helps you understand me.>Please visit our website at:http://ACES_Autoimmune.tripod.com