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ruziska
06-20-2011, 08:16 PM
Lupus means:
taking longer to get ready for a trip than the actual trip because of all the "supplies" one needs
carrying a notebook or other device in which to keep track of important things because of brain fog
staring longingly at strappy high heel shoes and buying orthopedic wonders.
buying sunscreen by the case
having a stash of "lupus flare meals" and the local delivery restaurants on speed dial
installing rails in the shower or bathtub, a stool in the shower, a raised toilet seat, easy grip handles on the faucets and no slip mats everywhere in the bathroom
having the smoke alarm remind you that you HAD a perfectly good cake in the oven but now is a charred disaster (see brain fog)
patronizing only establishments that have nice restrooms. Also know the location of the restroom in every establishment in town.
becoming a member of the "but you don't look sick" set and hearing that phrase way too many times
needing more naps than a toddler
having someone 30 years older than you speedwalk past you and leave you in their dust
using your spice cupboard for meds because you have more meds than spices
wearing long sleeves, long pants, gloves, etc no matter what the season
watch you wear on a given day determined by how you feel, not necessarily what you want to wear
watching "House" and keeping track of how many times he diagnoses Lupus
having a good excuse NOT to go swimsuit shopping (that one I like!)
having to explain to your daughter when describing a garment that "spf" means sun protection factor, not an abbreviation for "spiffy" ( I sent her a phone picture of a blouse today and asked her if she'd like it- it was a 30 spf shirt)
along the lines of dressing, coordinating your outfit color with your rash (everything I have now looks good with red)
knowing what day of the week it is by the day on your meds container ( I put mine in days of the week containers to better keep track)
you are on a first name basis with your pharmacist and the entire staff at your doctor(s) office(s), including the janitorial staff

I'm sure there are more but brain fog is attacking

Gizmo
06-20-2011, 08:57 PM
Ruziska, that is a pretty complete list, in my opinion (I'm not feeling humble tonight LOL). I like the spf "spiffy" story. I have to add that not only do I know my pharmacist so well that we are on a first name basis, but I also go to bed with him every night. ;o) He was giving me a flu shot last fall, and I told him that if it didn't hurt I would sleep with him. A little old lady overheard me, and the next week came in to ask him if he "really slept with that lady.":shocked:

lovedbyHim
06-20-2011, 09:04 PM
Oh my word this is right on! What can I say! I will print this and next time someone asks me, 'What is lupus?" I will hand them this. Lol

steve.b
06-21-2011, 12:34 AM
l o v e i t

debbie-b
06-21-2011, 05:49 AM
This is awesome.

Debbie

SandyR
06-21-2011, 06:41 AM
To me -

A Lupus Diagnosis means:
-an answer to end the search for a diagnosis
-a confirmation by my doctors of what my body is experiencing
-a mental relief from not having to constantly feel like a hypochondriac/criminal every time I do see a doctor
-a step in the right direction of TREATMENT
-a point of light in the darkness
-hope for my future

rob
06-21-2011, 08:07 AM
Oh, I like this thread already. OK, here goes-

Lupus means-

Finding a new understanding of, and empathy for others in life who are disabled or live with chronic illness.

And on a lighter note, Lupus means coming up with new and verbally creative ways to tell your latest Rheumotologist to Frak Off.

Rob

ritzbit
06-21-2011, 08:41 AM
I love this.

Peridot20_Gem
06-21-2011, 11:13 AM
Oh, I like this thread already. OK, here goes-

Lupus means-

Finding a new understanding of, and empathy for others in life who are disabled or live with chronic illness.

And on a lighter note, Lupus means coming up with new and verbally creative ways to tell your latest Rheumotologist to Frak Off.

RobGood one Rob,

The Frak off is more my english as well mate....it needs controlling (Wink) lol

Islablue
06-21-2011, 11:50 AM
Lupus means...
the silence in a conversation when I tell someone why I don't work or have children
giving up the dreams that I thought my life was going to include and coming up with new ones
learning who your true friends are
smelling of IcyHot
the ability to swallow more than 4 or 5 pills at once -- without even missing a beat in a conversation (and pretending not to notice the people around you staring)
giving rainchecks to your signifigant other for sex ---- Baby, three days from now I will ROCK YOUR WORLD!

debbie-b
06-21-2011, 12:20 PM
Lupus means...
the silence in a conversation when I tell someone why I don't work or have children
giving up the dreams that I thought my life was going to include and coming up with new ones
learning who your true friends are
smelling of IcyHot
the ability to swallow more than 4 or 5 pills at once -- without even missing a beat in a conversation (and pretending not to notice the people around you staring)
giving rainchecks to your signifigant other for sex ---- Baby, three days from now I will ROCK YOUR WORLD!

I had to laugh, all these points could have come from me.
That reminds me, I haven't rocked my husbands world in a while. LOL.

Debbie

Islablue
06-21-2011, 01:08 PM
haha. . I know.. you have to laugh about some of it or else you'll cry!

Angel Oliver
06-24-2011, 06:04 PM
Lupus to me means...i have not to think about this illness and stop thinking i have it even though i have many of the symptoms.Lupus to me also means even though a consultant says i have lupus,i have to erase the word from my mind as i have not got it.Lupus means never ask the doctor about it again under no circumstances.Lupus means suffer in silence!!

Angel Oliver
06-24-2011, 06:08 PM
P.s hahahahahaha yes i do that too swallow 15 pills whilst having a conversation with someone and them looking in amazement at what i just did without a blink hahahahaha.And the horrid tasting one always sticks in my throat for ages hahahahaa:)xxxx

luv1only63
06-24-2011, 08:37 PM
Lupus means:
taking longer to get ready for a trip than the actual trip because of all the "supplies" one needs
carrying a notebook or other device in which to keep track of important things because of brain fog
staring longingly at strappy high heel shoes and buying orthopedic wonders.
buying sunscreen by the case
having a stash of "lupus flare meals" and the local delivery restaurants on speed dial
installing rails in the shower or bathtub, a stool in the shower, a raised toilet seat, easy grip handles on the faucets and no slip mats everywhere in the bathroom
having the smoke alarm remind you that you HAD a perfectly good cake in the oven but now is a charred disaster (see brain fog)
patronizing only establishments that have nice restrooms. Also know the location of the restroom in every establishment in town.
becoming a member of the "but you don't look sick" set and hearing that phrase way too many times
needing more naps than a toddler
having someone 30 years older than you speedwalk past you and leave you in their dust
using your spice cupboard for meds because you have more meds than spices
wearing long sleeves, long pants, gloves, etc no matter what the season
watch you wear on a given day determined by how you feel, not necessarily what you want to wear
watching "House" and keeping track of how many times he diagnoses Lupus
having a good excuse NOT to go swimsuit shopping (that one I like!)
having to explain to your daughter when describing a garment that "spf" means sun protection factor, not an abbreviation for "spiffy" ( I sent her a phone picture of a blouse today and asked her if she'd like it- it was a 30 spf shirt)
along the lines of dressing, coordinating your outfit color with your rash (everything I have now looks good with red)
knowing what day of the week it is by the day on your meds container ( I put mine in days of the week containers to better keep track)
you are on a first name basis with your pharmacist and the entire staff at your doctor(s) office(s), including the janitorial staff

I'm sure there are more but brain fog is attacking

Thanks for sharing this, do you mind if I cut and paste it. I need to share this with my family/friends. My sentiments exactly,

missfearless
06-25-2011, 01:22 AM
Haha this is genius!

Having lupus means:
having to endure stares at your rash, swollen feet
having to put on makeup before leaving the house
eating a healthier diet which means giving up your favorite food
having to become a vampire while living in a country that has sun all year round
doing blood tests become a common thing
not looking like yourself (i.e chipmunk face)

lovedbyHim
06-25-2011, 03:05 AM
Lupus means to stop everything that makes you be you, and go to bed for days. Then you feel better so you cram everything you possibly can into the good days only to find yourself in bed again!