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steve.b
08-06-2013, 08:19 PM
there is an excellent article in the "lupus now" magazine. http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazineback.aspx?articleid=3011&zoneid=67&utm_source=Newsletter+8-6-13&utm_campaign=Newsletter+8-6&utm_medium=email

ruziska
08-07-2013, 07:12 AM
Reading that article was like reading my life story. I've dealt with every single one of those issues and I too, have my "bag of tricks". My smartphone and iPad are lifesavers. Everything I never wanted to know about how to get through my day is on my electronics (ironic considering I used to be anti electronic). At work, I write down EVERYTHING: when the boss gives me a file to put in a particular place, I immediately put a sticky note on it stating where it goes just in case I get distracted before I can put the file away. I have several instances of the phone ringing or someone coming to my desk before I've had a chance to put the file away and by the time, no matter how brief I can get to it, I've forgotten where it goes unless I have that sticky note! When I get a call, I immediately write down the person's name otherwise by the end of the conversation I've forgotten who I was speaking with. Going on any trip; day, weekend or longer requires lists. Usually duplicate lists. One in my purse, one on my phone, one on my iPad. Way to often I will look at an object and I know darn well I know what it is, say for example, the garbage can but there's been times I totally blank out what the name of that object is. I tell my husband to look where I'm pointing!! I used to forget my kids' name all the time. It got to the point I'd tell them: "you know who you are, you know what you did so KNOCK IT OFF!" I've called my kids by the dog's name and vice versa. I tell people that I'm great at keeping secrets because in 5 minutes I'll forget what they said. Seriously. I used to be a master of multitasking. Yeah, those days are soooo over. Slow and steady now. It may take longer to get the task done, but going slow gets it done right the FIRST time...or 2...

Changes in cognitive function: yeah another facet of having an "invisible" disease. Don't worry about it, just wait 5 minutes and we'll forget we have it.

Mica
08-07-2013, 03:34 PM
I am to the point when I meet people and my friends to tell them that don't get offended when I don't remember your name because I won't. I have everything written down too but that still doesn't always work, I have lists every where and written on my phone and I still forget! I get confused when reading instructions or questions on paperwork I am filling out. They are really simple but for some reason it just wont register in my brain so I end up asking people and when I talk about the question i'm like "ooooh never mind I understand now" and then I tell whoever I ask that just talking about the question to someone else usually does the trick for me. To keep myself from getting lost when driving I talk out loud the directions to myself even though I have been there a bunch of times before, my sister still gets so mad at me when I do it. It helps though because I get to my location with out any detours. I love Ruziska's last sentence that made me laugh.

Creekbank
08-25-2013, 04:22 PM
Thank you for posting this article. For a while you think your losing your mind. I can't remember some things from one day to the next. I did go out and buy a lot of paper to keep notes for myself. It's embarrassing when your trying to talk to someone and you forget the words your about to say. I find it difficult to start conversations with my husband at times. It's a sad reality of Lupus. Sometimes, I just want to cry. I try to cartel the crying for times of isolation. I don't want my children to see me cry about what is happening to me. My oldest is already worried about the toll it has taken and continues to take. I also find it hard to put sentences together. I was a great writer in school and beyond. Now, I can barely get a few things typed that makes sense. This article definitely shed some light on things for me. My next Rheumatology appointment is in October. I will be mentioning this to them.

Oluwa
08-25-2013, 10:39 PM
I am one of the 20-60%. I say he instead of she. I say red when I mean black. I say the verb before the subject. I've been in my SUV, in my driveway and wondered was I coming home or leaving. And isn't like forgetting your keys..I've done that and you can always find them. It is losing a word, and it is not at the tip of your tongue, but you're trying to find the word in your brain file.

It is like you have to remember your conversation as you talk, always...you try to remember the last word you said while simultaneously saying the next word. Quite a feat without coming across as a ditz.

People say I am well written but it is because it easier to write more often than it is to convey myself in conversation. I can see what I write not what I am saying. Times I sound like I am ditzy drunk, then sober, then a ditz again. Like a weekly forecast of weather but felt in one day, even during one hour. Clear, cloudy, Clear, rain, Clear, foggy, Clear. It comes unexpected to the listener, but I anticipate it because it is my norm...

Creekbank
08-26-2013, 04:14 AM
Oluwa,

Thank you for sharing that because I feel the same way about feeling ditzy in conversation. That happens to me all the time now. I almost want to tell people before hand, "I am not drunk or anything, it's a Lupus day for me!" I am finding these changes within me to become hard to handle emotionally. I guess I am still trying to get used to my new normal. I try to be positive about the change.

Creekbank

steve.b
08-26-2013, 06:48 AM
...... People say I am well written but it is because it easier to write more often than it is to convey myself in conversation. I can see what I write not what I am saying. ......

this is exactly the same for me. I can write something.... because it is thought about before it is written. when I speak ...... it is spoken as soon as I think. so I make mistakes when I speak.

ruziska
08-26-2013, 09:45 AM
For me personally, the cognitive disfunction aspect of lupus is the hardest to deal with. Not that the rest of the issues are such joy but "of all the things I've lost, I miss my mind the most" - Mark Twain. Knowing darn well you know that you know how to do something but at that moment you've totally lost how to do it is frustrating beyond words. To look at an ordinary object and not remember the name of it. I've just begun my journey of training my service dog and I'm worried, not that I can actually train him but that I can remember the commands at the moment I need them. When my husband and I have a conversation, thankfully he knows me well enough to be able to figure out what I mean, not what I can't say. For coworkers and anyone else it can be a struggle. Maybe its a good thing Lupus is a short word: we'd have an even harder time remembering what we have it it had a really long name. At least I would.

lucky7
08-26-2013, 11:20 AM
Oh my goodness.......YOU are ALL so RIGHT on the mark with THIS one......I feel like a child so often...I even get TREATED like a child or like I am mentally hadicapped when I am out BY ADULTS..I get frustrated sometimes by it....Ive NEVER experienced "THAT" until I got Lupus/Sjogrens/MS etc... My brain in under attack almost all the time!!! BOOOOOOO......

Oluwa
08-26-2013, 03:35 PM
Maybe it is easier just to say I have Dysphasia, as everyone who hears that term understands the definition and will give us the patience we so deserve for having an invisible disease...perhaps.

Follow the yellolw brick road... http://medical-dictionary.thefreedictionary.com/dysphasia

Be well...neck hugs....O.

Creekbank
08-26-2013, 03:49 PM
Oh my goodness.......YOU are ALL so RIGHT on the mark with THIS one......I feel like a child so often...I even get TREATED like a child or like I am mentally hadicapped when I am out BY ADULTS..I get frustrated sometimes by it....Ive NEVER experienced "THAT" until I got Lupus/Sjogrens/MS etc... My brain in under attack almost all the time!!! BOOOOOOO......

You are so right with this one! I learned about 3 weeks ago, how quickly things can go downhill. I was battling general inflammation in the body,. It built up so quickly my heart and lungs built fluid around them.
I am on my second round of antibiotics and back on daily steroids. I still don't have it under control. I just try to take things slow.

Creekbank

Saysusie
08-27-2013, 10:31 AM
Steve - thank you for the article as we all can identify with it!
Oluwa - thank you for the definition of dysphasia..sounds so much like me!

Like many of you; I, too, sound like a babbling idiot when I try to have conversations. I majored in Literature and started my career teaching English, grammar and linquistics, and Expository writing. I ended my career as a Probation Officer writing court reports about sentencing recommendations. I say all of that to say that - I once was able to have very thoughtful, intelligent, and provoking conversations! Nowadays, I just grunt and shake my head like a neanderthal because my words get twisted, or I can't remember the word I want to use, or I just can't remember how to form a sentence correctly! It is disheartening as well as embarrassing. Writing is so much easier (lol).
So sad that this is the truth about our lives now *deep heavy sigh*

Peace and Blessings
Namaste
Saysusie

lucky7
08-28-2013, 02:46 PM
Oh how I can relate to YOU as well Carlotta! UGH!!! I used to be so well spoken.. and being a personal trainer I had to be ALERT for many reasons...I had to put together special work outs for each and every client I had....Never the same work out and always changing it up for the clients.....Meal plans..Meeting new clients and getting them to WANT me for their trainer..driving all over town for training sessions....HUH! NOT TODAY! I cant even drive now! After almost getting into several accidents for different reasons (brain fog especially cognitive issues from the MS) Carl and I decided i CANt put myself OR others in jeopardy..I cant even carry on a conversation (much) with my own family let alone anyone else! Ill repeat words or say words in a scrambled up mess.. I make my family laugh though!!! GOTTA LAUGH!!!! Whats the alternative, right!

Creekbank
08-28-2013, 06:06 PM
Lucky7,
I can relate to the driving ordeal. I haven't been comfortable with driving for about a year. Brain fog and pain are the main reasons for me. Some days I am ok, but others are not. My pain level gets to the point I can't concentrate and focus. I have noticed my words are becoming more jumbled and mixed up. I feel like a kid trying to have an adult conversation. Some times I just feel like I can't keep up with the conversations. I tend to sit in silence rather then speak and be embarrassed.
Hope you are feeling some what well.
Creekbank

debbie-b
08-29-2013, 03:31 AM
The brain fog is the main reason, I have not looked for a new, less physical job. I am afraid that my brain won't remember, what I have to learn, even more scary is the thought, that I sound like a brainless idiot at the interview.
I can't remember names, my cell phone #, I can't form complete sentences, I can't think of words ( common, every day words), who in the world am I going to get a new job?
That means, I have to stay where I am working now, even though the physical part is killing me.

Debbie

Oluwa
08-29-2013, 01:34 PM
Imagine.. I was an Air Traffic Controller and worked for IRS..Ha! Now I couldn't even read the instructions to control a remote controlled airplane nor use a 10 key, as I have to have the calculations written out in pen so I can see and remember what I had did. I literally write out the + - x signs on my paper.

The other day I could not think of the word juice. I wanted to say tomato juice and all I could think of was "Ya know, that tomato drink, beverage you get in the can.." I got flustered as they had no clue either. They would not be very good at the game Password. Ha! After several minutes I uttered though late..'juice..ha..like V8". A feat I marveled at myself for because I had a moment of clarity and to them I think perhaps I looked like a sausage (Idiot).

I have Lupus...it does not have me. That's all. It has me part of the time but the other times are all mine.

Be well...Love..O.

lucky7
09-07-2013, 12:46 PM
Oh my goodness.....I too sit and I am quiet more often than not in social settings because of how "foggy" I get (EVERY TIME). I cant FOCUS to save my life and if I CAN then I get a headache and/or flare in one way or another. THEN, Im looked at and treated like the CHILD I was talking about in my earlier post...UGH....BOOOOOO to brain fog..