Living with Lupus

[Guest guest]

Living with Lupus

The many physical and emotional problems

associated with Chronic Pain are not psychological in origin. This is not an

" all in your head " disorder.

Lupus strikes life-long athletes as viciously as it does

couch potatoes. The symptoms can be disabling and depressing, interfering with

even the simplest activities of daily life.

Please think of Lupus survivors as books and remember the

old saying, " Never judge a book by its cover. "

Lupus survivors may look fine and healthy on the outside,

but our insides are pain ridden because our vital organs are being destroyed by

this disease and our minds are fogged with pain and memory problems.

We are like books .. the dust cover may be wrinkle free, brightly covered,

looking new and fresh; but inside, our pages are dog eared, worn, and some

pages may even be missing. But if you take the time to read us and get to know

us, you will find we still have much to offer in the way of wisdom and how to

deal with life!

© 2000 " Rion " Sewell

A letter to be shared with

friends and family

by Theresa Stoops in Florida

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,

I have shared these thoughts with many

" Lupies " , as we call our self, and they agree with me. So when you

see someone at the store who gets out of the Handi-cap

space and they look fine -- Do not judge them as you may Not

know their Inner pain.

==== And

always remember I LOVE YOU! ====

Hugs,

Deanna