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ruziska
10-26-2012, 08:39 PM
I'm not stupid, I have lupus. I have to write down each and every instruction my boss gives me or I forget what he says right after he say as it. It isn't because I'm not paying attention or I'm stupid, it's lupus brain. I've tied several times explaining that to the boss but he just doesn't understand so he treats me like I am an idiot. Makes me sooooo mad! Mad at the boss for being rude , mad at the lupus for putting me in that position.

Manderson
10-27-2012, 10:28 AM
Yeh, I get that too Ruz. Doc I work for rambles off paragraphs and paragraphs of verbal instructions and when I begin to write key points down, he says "you don't need to write it down." Well, yes I do and here's why, doc: the patients depend on me to know what I'm talking about. Heck, they depend on me to know what YOU'RE talking about.

Mica
10-27-2012, 10:33 AM
I talk to myself when I drive, like I talk out loud my driving istructions. My sister gets so mad, I just laugh and tell her "shut-up unless you don't ever want to get there?"
Manderson, I make my doctor write down instructions for me at first she was irritated my it but now I think she has gotten used to it.

Angel Oliver
10-28-2012, 10:16 AM
hahahaha yeh i just do that stare....i see their mouths moving and just stare hahahahaaha.xx

BonusMom
10-28-2012, 08:46 PM
I've got three strikes against me 1) I've got Lupus 2) I take Dopomax, er, Topomax 3) I'm blonde

I write EVERYTHING down. If I don't, I'm guaranteed to forget!

magistramarla
10-28-2012, 09:01 PM
Hi BonusMom,
As long as you don't forget us here at WHL, it's all good!
Hugs,
Marla

BonusMom
10-28-2012, 10:22 PM
Hi BonusMom,
As long as you don't forget us here at WHL, it's all good!
Hugs,
Marla

Fortunately, I checked the box that remembers my login info, otherwise I'd be in trouble ;-). But, I'll never forget the people of WHL.

Saysusie
10-29-2012, 02:03 PM
I think that we can all relate and that we are, for the most part, in the same boat as you. I write everything down on my desk calendar, on my wall eraser board, I put reminders on my phone and I put reminders on my tablet. Now, even with reminders in four separate places, I STILL forget things! So, don't stress about this at all..we completely understand (lol)

Peace and Blessings
Namaste
Saysusie

jmail
10-30-2012, 05:08 AM
Hi BonusMom,
As long as you don't forget us here at WHL, it's all good!
Hugs,
Marla

Fortunately, I checked the box that remembers my login info, otherwise I'd be in trouble ;-). But, I'll never forget the people of WHL.

... and thank goodness for bookmarks... and if my wife didn't have her smart phone and went with me to appointments, I'd be sunk. Even if she *didn't* have a smart phone, I'd be sunk without her... |;^)

You ought to hear my boss at work ruziska: "What are you doing with all those notes on your desk?!?!?" "Just doin' my job, boss..."

ruziska
10-31-2012, 08:19 AM
The irony in all of this is that I work for a company that deals with people disabilities. He, of all people, should be the most understanding. Oh yeah, and let's add the fact that EVERYONE that works in this office has some sort of illness (cerebral palsy, diabetes, bipolar, asthma, your's lupie truly...) INCLUDING the boss himself.

panda_lupo
11-06-2012, 07:48 PM
I have a binder at work this is my bible of my job! I refer to it everyday and dont let it go more than two inches from me!

I would be a lost puppy if someone took it from.

Keep your head up Ruz!!

The Survivor
11-08-2012, 12:17 PM
Ah, so lupus can even effect your memory too? No wonder when someone first tells me their name I forget it in under a minute. Very sad....Is there any way we can improve our memory?

jmail
11-08-2012, 03:46 PM
Not that I'm aware of, other than to "exercise" it. I've tried to get in the habit of repeating someone's name, such that someone goes "Hi, I'm Bob!", I don't just go "Hi, I'm Rick", I now try to go "Hi Bob, I'm Rick. Nice to meet you Bob." I might try to make a joke of saying the other person's name many times as I talk, with something like "Sorry for saying your name Bob so many times Bob, but I'm afraid I'll forget it, Bob."... Everybody thinks I'm nuts. I am, so I go with it... lol - I also play mind games, including Minesweeper and Freecell on the computer, where you have to really think... then I get frustrated and close them... lol

Lupus does my memory bad, especially short-term. Then there's the "fog" with the flares... The wife will claim that she told me on Monday that we had to be at the school at 6:30 on Wednesay, so where are I?... She never told me. Then she showed me the video on her smart phone... YIKES!!! So now I'm learning how to use the voice record thingie on my cell phone, and trying to remember to write notes about everything, and then trying to remember where I left those notes...

What were we 'talking' about?...

isabel
11-09-2012, 10:39 AM
i was diagnose with lupus 25 years ago, and i didn't know till few years ago that lupus could or can affect memory. Before I didn't believe when my husband told me that I had already tell him something several times or when I blamed him because he didn't do something I thought about telling him to do but I really never did because I forgot ,but in my mind i did it. It was so hard to accept no because I didn't wanted it but because I didn't believe it until my kids start telling me the same my husband been telling me for long time. I start reading and find out that because my lupus i have bad memory, wonder how non of my doctors never told me about. Now I writing everything down, I have POST IT notes all over the walls, I'm learning to live with my memory problems.

rob
11-09-2012, 11:44 AM
There's not a single "stupid" person here in my opinion. Every single person with Lupus who I've ever met in person, or met here on WHL, has been quite intelligent, and incredibly insightful.

Our problem isn't a lack of intelligence. It's an inability at times to be able to access the information we have in our heads. I usually know exactly what I want to say in a conversation, but when the brainfog is acting up, I can't articulate the proper words even though I know what I want to say. There is a disconnect somewhere between my thought process and my voice.

I try to explain this to people in the terms of a debit card-

Let's say you find yourself in a situation where you really need some cash, and you need it right now. So you find an ATM, and you insert your card into the slot, but you get nothing but an error message because the magnetic strip on the card has been damaged. It's a common, and frustrating problem. You have the money you need right now, but you cannot access it until the bank opens the next day, and or/you get a new card issued. Now, imagine that the money you desperately need, but cannot access, is your memory. Some people understand the analogy, and some don't.

In regards to short-term memory loss, all I can say, is that there are plenty of healthy people who cannot remember worth a darn, what's their excuse?

We have a very real, very legitimate reason for why we are the way we are. We didn't ask for this, and it's nothing to be ashamed of. Don't let those who may talk down to you, or think you are stupid, get to you. Many of those kind of people are unable or unwilling to understand other's problems and challenges, and some are unable to feel any empathy towards other people at all.

Given the choice between being a person devoid of empathy for others, or having to live with Lupus and brainfog, I'll take the Lupus, and the brainfog everytime.

Don't let 'em get you down,

Rob

jmail
11-09-2012, 03:58 PM
Amen, brother Rob.

steve.b
11-09-2012, 07:12 PM
.............Our problem isn't a lack of intelligence. It's an inability at times to be able to access the information we have in our heads. I usually know exactly what I want to say in a conversation, but when the brainfog is acting up, I can't articulate the proper words even though I know what I want to say. There is a disconnect somewhere between my thought process and my voice....................We have a very real, very legitimate reason for why we are the way we are. We didn't ask for this, and it's nothing to be ashamed of. Don't let those who may talk down to you, or think you are stupid, get to you.......... Rob


some great words of wisdom.

magistramarla
11-09-2012, 10:58 PM
Rob,
I'll borrow that analogy. I saw a new neurologist last week, and I was trying to describe my memory lapses to him. I've noticed that it's usually a noun that I "lose". I also know just what it is that I want to say, but I just can't say that word. Sometimes I can think of synonyms, so it's like I'm playing a word-guessing game with the person that I'm talking to.
Hugs,
Marla

BonusMom
11-10-2012, 08:12 PM
I used to be a walking thesaurus. With everything going on, I'm lucky to put a complete sentence together. Sadly, my memory lapses have definitely impacted my confidence. Recently, I had a promotional interview and BOMBED it horribly. I'm not beating myself up over it, though. Obviously, I wasn't meant for that particular job.

magistramarla
11-10-2012, 09:27 PM
BonusMom,
Hang in there, girl. We're all here for you.
Love and Hugs,
Marla