PDA

View Full Version : Can't think clearly when i flare



lucky7
02-03-2009, 03:22 PM
Hi! I just had a few questions on my mind about when i flare up. Its ao nice being able to talk to people who understand because there are days when i feel alone because no one around me understands the feelings of a flare.

I was wondering if anyone has the feeling of being disoriented and they cant think straight when the flare. I have trouble catching my breath just walking from the couch to the kitchen. Ive been saying the wrong words when talking to my family,even sluring at times. I'm even having a little trouble typing right now because i'm having somewhat of a dizzy spell trying to kick in.

I have to have my 18yr old daughter drive me to run errands most of the time because i usually flare when im out getting things done and its bad for me to drive.

Sorry this is long, its just i havent been here long and i have so many things to ask since my doctors sick of listening to me. Is there a specific list of blood tests i should TELL her i want? I know shes going to hate that but she really hasnt done much.

I did have some tests done the other day from a specialist but no results for a wk or 2.

I was told by one specialist he didnt want to hear about any other symptoms other than what he is there for. He said "thats for your family doctor to put together". WOW, sorry i waisted your time!

Thanks for being here everyone :)

iseedeadmonkeys
02-03-2009, 03:39 PM
Hey there Lucky7-thts also mine alongside 13 too 8)

What you are experiencing is what we call a brain fog :)
fuzziness, feeling like your in a dream, or sometimes which i love is the feelin of numbness like nothing can hurt you as if your in a bubble, people are talking to you and you can hear them but its not making any sence.
you are deffo not alone i have them so often my peeps are used to it now and they just say *janes world?* :lol:

keep it real
ISDM
xx

sits_inthe_corner
02-03-2009, 05:06 PM
hey lucky7

You most definately are NOT alone on this one. Brain fog is quite common. I have that just woke up feeling all day. I have trouble putting complete thoughts or sentences together.

I feel like all my energy is going into making my body move that there's not much left over for thought process.

I can't answer your question about the needed blood work. Oluwa or saysusie should be able to help with that one.

lucky7
02-04-2009, 01:43 PM
I just love you guys!

You make me feel better when i read your replys and comments.

I dont feel alone anymore and i dont feel like a "BOTHER". Youre very supportive and i appreciate that :lol:

rob
02-04-2009, 02:22 PM
Hi Lucky7,

What you are experiencing is not uncommon. Cognitive Dysfunction, or as we call it, "brain fog", is a symptom many, if not most of us have at one point or another. My brain fog is directly related to my flares. When I'm in the middle of a bad flare, I forget how to spell simple words I've always known, I can get lost driving in a town I grew up in, and I can expend so much effort walking from room to room in my house, wondering why I'm going to this room, and what am I doing, that I am exhausted and can do no more.

It can be funny, like when I brushed my teeth with Preparation H instead of toothpaste once, and it can be frustrating and embarrassing as well. The good news is, it seems to not be a permanent thing. When my flares die down to a reasonable level, my memory and mental abilities come back, and I feel almost normal again. It can be hard sometimes though. Losing ones train of thought in mid conversation, forgetting the names of family members, and suddenly drawing a total blank in front of people, is embarrassing beyond belief.

You are not alone with this. What is happening to you is hard to deal with, but know that there are other people like you who are struggling with the same problem. For whatever reason, knowing that you are not alone with a problem can really help a person to cope. I'm glad you chose to join our group. Welcome.

Rob

cynda rae
02-04-2009, 09:45 PM
Hi! I just had a few questions on my mind about when i flare up. Its ao nice being able to talk to people who understand because there are days when i feel alone because no one around me understands the feelings of a flare.

I was wondering if anyone has the feeling of being disoriented and they cant think straight when the flare. I have trouble catching my breath just walking from the couch to the kitchen. Ive been saying the wrong words when talking to my family,even sluring at times. I'm even having a little trouble typing right now because i'm having somewhat of a dizzy spell trying to kick in.

I have to have my 18yr old daughter drive me to run errands most of the time because i usually flare when im out getting things done and its bad for me to drive.

Sorry this is long, its just i havent been here long and i have so many things to ask since my doctors sick of listening to me. Is there a specific list of blood tests i should TELL her i want? I know shes going to hate that but she really hasnt done much.

I did have some tests done the other day from a specialist but no results for a wk or 2.

I was told by one specialist he didnt want to hear about any other symptoms other than what he is there for. He said "thats for your family doctor to put together". WOW, sorry i waisted your time!

Thanks for being here everyone :)your not alone, when i have a falre i know wy ahead its coming, get really tired even after a full nights rest, get a rash , joints ache, its all part of the disease....... taking plaquenil, for 4 months now feel better already, i try not to let this disease get me down, i try to stay in the positive. good luck reply if you want to talk, :BIG: cynda

lucky7
02-06-2009, 04:42 PM
Thank you guys!
I do feel llike a stumbling idiot alot. My eyes get so heavy its hard to keep them open!

I had to have my daughter count my cash the other day cuz i just couldnt get it done!

Hey, another question. Has anybody heard of Candida? Theres a test to do at home and they say it can determine if you have it or not. If you do they say you most likely have an autoimmune disease?

Thanks again! :)

rob
02-06-2009, 04:59 PM
Hi Lucky7,

I'm sorry I was not able to welcome you properly when you first joined. We are a having a flood of new members (a great thing) and sometimes I don't catch everyone the first time around. Anyway, you already know that I'm Rob. I was diagnosed with SLE in 2004, and I'm 41. What you are experiencing, is called Cognitive Dysfunction. We call it brain fog. I have it on a daily basis, some days are better than others.

It can be frustrating, and scary, not to mention embarassing. I used to be the sort of person who others asked to proofread assignments, articles, whatever. I had a good memory for all sorts of things, words being one of them. Now, this very post I'm writing, I will have to look at 3 or 4 times to make sure the spelling and grammar are OK.

I get lost on the way home, and I grew up in this town. I draw a blank when talking to people both in person, and on the phone. Not fun. The good news is, for most of us, this is not permanent. When my flares subside, my ability to spell mostly comes back, and I don't get very disoriented at all. I don't have any way of dealing with it other than just realizing when it's happening, and letting those around me know what's going on. Of course, when you post here, nobody is going to be surprised if your words are a bit garbled. We know here that sometimes others may not make perfect sense, so it's no big deal. Anyway, don't let the fog get you down, it's not permanent, and when it happens, we understand.

Rob

sits_inthe_corner
02-06-2009, 05:12 PM
Candida is a genus of yeasts. Many species of this genus are endosymbionts of animal hosts including humans. While usually living as commensals, some Candida species have the potential to cause disease. Clinically, the most significant member of the genus is Candida albicans, which can cause infections (called candidiasis or thrush) in humans and other animals, especially in immunocompromised patients.[1] Many Candida species are members of gut flora in animals, including C. albicans in mammalian hosts, whereas others live as endosymbionts in insect hosts.[2][3]

The last decade has seen the sustained medical importance of opportunistic infections due to different Candida species mainly due to the worldwide increase in the number of immunocompromised patients, who are highly susceptible to opportunistic infections.[4] Meanwhile, the genome sequence of several Candida species has been completed, enabling the detailed investigation of some aspects of their biology with the aid of post-genomic approaches. The basic knowledge gained from these investigations of pathogenic Candida, and related yeasts, can translate into innovations in the development of novel antifungal therapies, original approaches for targeted immuno-interventions, or highly sensitive diagnosis of fungal infections.[4]

Practitioners of alternative medicine claim that Candida overgrowth can cause various health problems, from fatigue to weight gain, but this is rejected by most doctors and there is no evidence to support the theory.[5][6]

Candida antarctica is a source of industrially relevant lipases.

Contents [hide]
1 Laboratory characteristics
2 Clinical characteristics
3 Species
4 Other
5 References



[edit] Laboratory characteristics
Grown in the laboratory, Candida appears as large, round, white or cream (albicans is from Latin meaning 'whitish') colonies on agar plates.[7]

Got this from http://en.wikipedia.org/wiki/Candida_(genus)

I knew I had heard of it but I couldn't remember what, so I googled it :lol:

lucky7
02-06-2009, 05:13 PM
OMG You knew exactly what i was thinking! I do get worried about the way my words look cuz i think ive checked it enough and next thing i know i see alot of mistakes! UGH!

It can be very embarassing! People have looked at me like im crazy when ive been out and i get that "fog" state going. I have trouble driving too. As a matter of fact i flared bad today right before i was leaving the house for the grcery store, so i had to have my daughter go with me to drive. My husband got upset cuz he said thats when i should have taken a nap instead of worrying about catching the sales taht would end tomorrow.

I still find it hard to balance things. I do need to rest more. Im so used to being the caretaker for so many people in my life,this is new to me. Not being able to go go go.

Thank you Rob, this forum was the best thing i could have done for myself :) :)

rob
02-06-2009, 05:21 PM
Well,

Look at me, if this isn't a perfect example of brain fog, then I don't know what is. Check out what I just did a little ways up the page.^

Should I leave it and be embarassed, and take my own advice and know that you guys understand? Seriously, I feel pretty dumb right now! Anyway Lucky7, welcome, twice.

Rob (shaking his head)

P.S. I need help. :lol:

lucky7
02-06-2009, 05:32 PM
LOL ROb!

I noticed it but i didnt want to say anything cuz i do things like that all the time!

Im not happy you did it but it helps me to not feel so alone in just another are of this illness

Thanks!

lucky7
02-06-2009, 05:35 PM
Wow sitsinthecorner!

You have me very impressed! I didnt know all that! LOL

I did the saliva test this morn and my saliva did what they said it would do if you have an autoimmune disease.

Im not sure how to take it,do you think its legitimate?

sits_inthe_corner
02-06-2009, 05:41 PM
Yep lucky7,

Candida is quite real, a good friend of mine's mother has it. But my brain would not let me pull out much information, so I went and googled it :lol:

sits_inthe_corner
02-06-2009, 05:42 PM
OOPS I forgot to ask what the doctor said with the positive test. Are they going to test further or look at treatments?

lucky7
02-06-2009, 05:54 PM
I did the test on my own! I do alot on my own with this illness cuz she takes offense of any input i have on my own body! UGH

She still is trying to tell me im too high strung! My neurologist tells me he doesnt like what hes seeing so far,i wish he was my family dr. Went to him monday and the ulcers in my nose are getting worse he said. He said youre going to have anosebleed any minute from your right nostril and what do ya know, the minute i got home it poured out! Crazy!

I dony know what t o do about my positive results. Do i find a new dr? She hates hearing what i have to say. She wants to be the one to talk,not me.

rob
02-06-2009, 05:54 PM
LOL ROb!

I noticed it but i didnt want to say anything cuz i do things like that all the time!

Im not happy you did it but it helps me to not feel so alone in just another are of this illness

Thanks!

And so it will stay, for all to see! Man, I feel goofy, but what the heck. If you can't laugh at yourself, then who can you laugh at, right? :oops:

lucky7
02-06-2009, 05:56 PM
DITTO Rob! :lol:

sits_inthe_corner
02-06-2009, 06:27 PM
:oops: Okay rob, don't feel alone...I read and reread your post and I dont see anything in it :D

ZooOOoom right over my head.

rob
02-06-2009, 06:38 PM
:oops: Okay rob, don't feel alone...I read and reread your post and I dont see anything in it :D

ZooOOoom right over my head.

What post?

sits_inthe_corner
02-06-2009, 07:03 PM
:D

Danica01
02-09-2009, 03:35 AM
I have told some of you before but when I am really dealing with the brain fog I will trip, run into walls and fall up the stairs and yes, I said UP the stairs :D Tim will watch and just wait for it and then we both have a good laugh :!: When I am really bad I will have a hard time with glass......yes, I run into glass doors :!: Oh,last week it was really bad and we were at the movies and I got up to go to the bathroom.......I ended up in the men's room!!!!!! That was an experience :lol: I don't know who was more humiliated......me or the men using the urinals :oops: You are not alone :wink:

Saysusie
02-10-2009, 11:53 AM
I love the urinal story! I, too, trip "Up" the stairs, walk into doors and forget what I am doing just seconds after I've decided to do it.
But, my hubby and I had to laugh because he's done the urinal thing himself and he has no diseases. We were at a play and he walked into the ladies room while my sister was in there. He looked at her and asked her what she was doing in the men's room and she told him that he was in the ladies room. He had to go back and look at the door before he was convinced that HE was in the wrong restroom.
So, when he likes to tease me about my forgetfulness and my klutziness, I remind him of the ladies room and that, even healthy people make mistakes! :lol:

So, don't feel bad. I bet each of those men in the restroom had a similar story that they could tell.

Peace and Blessings
Saysusie

lucky7
02-10-2009, 03:48 PM
LOL

I love the stories and now i dont feel so alone! My daughter gets a few laughs from the things i do or say almost daily! My husband and son just feel sorry for me and hug me! LOL

I also have to say that my big toe has been stubbed MORE than once and my face has met up with the next step a lttle too often gong UP the stairs!! LOL :lol:

Angel Oliver
02-10-2009, 05:13 PM
Yesterday i had a cig in one hand, i was on the laptop and the phone rang. I put the cig to my ear and tried to smoke the phone lol :) Luckily i didnt burn myself but thought for a few seconds.....erm.....how do i answer the phone again....then i remembered lol :)

Angel.xxx

Rastagirl
02-10-2009, 05:57 PM
I've got one to share that embarrased me while on vacation last summer.

My husband and I were at a resort in Jamaica and I was having a brain fog day, mostly just little things. I was off by myself shopping in the gift shop and headed back to my room. When I got there, the maid's cart was outside and the door was open so I walked right in.

I stood and had a brief conversation with the maid and she left and closed the door. When I went to the closet door, to put my hat away, nothing in the closet looked familiar. That's because they weren't my clothes! I was in someone else's room. :shock: I quickly ran out of the room, worrying the whole time that the people were going to 'catch' me. I wasn't sure how I was going to explain. :oops:

When I got out of there, I stood for like 5 minutes trying to remember my room number. We had been there for 6 days already, so I knew the room number, but it just would not come to me. The building I was standing in didn't even look familiar. I felt like an idiot. Finally, I went to the front desk and asked them if they would call my husband in our room and ask him to meet me at the poolside bar. And that's how I found my way back to my room......I followed my husband.

We both had a good laugh over that one. :lol: My husband was afraid he was going to have to put a bell on me so he could track me down when my fog hit.

Thanks, everyone, I enjoyed your stories!

Lori :P

Angel Oliver
02-10-2009, 06:02 PM
Lol Lori....so funny. And the bell thing too lol :)

Angel.xx

lucky7
02-10-2009, 06:21 PM
Angel, Im glad you didnt set yourself on fire!!!! Too funny!!!

Lori, i LOVE the BELL idea! How cute he even thought it! The thought is funny!

Gosh, icant tell all of you how i dont have that alone feeling when im on here or even when im off the site i just think of your stories and comments!

My husband is so understanding but he really cant "get it" cuz he doesnt live in my body.

Like Rob told me before, if i mess up my typing no biggy cuz you all know WHY.

I like it here

Rastagirl
02-10-2009, 06:31 PM
Yah, I'm glad he didn't 'make' me wear it. :lol:

That would have been even more embarassing...the only one at the resort that had to wear a bell.

People would be going, "Did you see that lady that has to wear a bell?" "Oh yah, we 'heard' her wandering around last night in the dark, someone should tie her up before she forgets where she is and wanders into the Caribbean."

:lol: Lori

lucky7
02-10-2009, 06:41 PM
OMG Lori! I just told my husband how much I Love You! You crack me up when i need it but you also make me feel better with gentle word when i need that!!!

Youre too dang CUTE!!!!!!!!

Just had to tell you that!!!!!!

mountaindreamer
02-11-2009, 06:54 AM
hi lucky7,

Rob did such a good job of explaining what happens to us. I have experienced all of it (except brushing teath with preparation h....at least not yet). I sometimes get lost and can't find my way home, I can't think of words that I have used all of my life, and I sometimes stare into space when people are talking to me.

and Rob.....oh what a perfect example of our fog. I even thought it was me, and that I just thought that I had already read your post.

thanks for my first smile of the day,
phyllis

kukukajoo
02-11-2009, 07:16 AM
Wow Rob, you really described a day in the life of me!

Never had the Perperation H experience and I think this is just due to the fact that a few years ago a friends mom brushed her teeth with Clearasil one day when we were all rushing to go somewhere! I have been really cautious since then!

I forget names. A LOT. Even people I have grown up with, my uncles, etc. I have taught my kids long ago that when meeting someone if I don't introduce right away it is because I have no clue what their name is and they can help me avoid embarassement and awkardness by jumping in and beginning the intro! This was long before I ever know about APS or possible lupus.

I get the days I can't drive and thankfully all my girls can now and I have a HS senior who just wants to drive everywhere,but thinking she is getting sick of it lately as it has been more common.

I hate when I go to do something and forget in like a second. Happens all the time. And the talking to someone and mid sentence totally losing your thoughts! Friends are getting used to this.

And the clumsiness! I live in NH near some great ski areas and want to learn, but friends refuse to take me! One says MAYBE if I am full gear like a motorcycle racer with a really good helmet!! It is a genuine fear I will be quite injured as I am just that clutzy.... Oh well least they think this is "cute" and still love me!

lucky7
02-11-2009, 10:54 AM
LOL

I havent done the preparation h thing either! Hope i dont! But ya never know!!!

gina
02-11-2009, 12:32 PM
how do you accept the brain fog. i can't remeber the days and my spelling is awful now double check everything. it has affect my work i do accounting and you can't forget to put invoice numbers or put in the wrong accounts in qb. i have talking and forget what i want to say. i was always a in charge person some would say anal. everything in abc order if raised first child like my mother in law said an army seargent. now with my last kid i don't care when he eats or sleeps don't have the time or energy to argue. this ruin my first marriage, he said there was nothing wrong with me, to get out of bed i was with him 20 years. i could tell you everyone birthday age birthstone everything about the people in my life and just the other day i forgot how old my son was.

kukukajoo
02-11-2009, 01:08 PM
I think back a couple years ago and I remember running into a friend I hadn't seen in a long time. I was telling her how my twin girls were now in college and loving it. She asked what year they graduated and I said it wrong 3 times and for the life of me, could not even remember, I was so stunned and embarassed!

Looking back, it all makes sense now!

mountaindreamer
02-11-2009, 02:51 PM
hi gina, thanks for posting again.

I don't have the answers for managing "brain fog", but I can tell you the few adjustments that I have made. I too was a multi-tasking mother, wife, student, employee, coach...etc..... then all of a sudden, I could not do it anymore. I can't change that fact, but I can figure a way to include into my life, because I know it will beat me if possible.

I have become a single-task person and don't mind telling people.
When asked to do something, I tell them to remind me because I am sure to forget it.
When overloaded, I go back to single-tasking, and I admit it to those involved.
I also strategically use sticky notes for small lists.
I use my dining room table to place things that I need to remember, but will probably forget if not in my face.

I have had to become honest with people. My daughters went with me to a few dr. appts, plus they explored around on this forum. Both were overwhelmed and both were educated. They now understand when I back out of doing things, and when I just don't feel like talking with anyone for a few days. These two things have really helped. I also understand that there is a forum for lupus families...my girls did not explore. As compassionate as they are, I know that they still don't really understand. The only way to really understand is to experience this stuff, and I would not wish that on anyone.

I give safety training presentations for several warehouses. I have had to tell the members of the groups about my situation, and we now make it a joke to see who can come up with the word or name that I am trying to say. Sad, but reality, and better yet, we laugh at it.

Find what works for you so that you can continue to live with this mess.

A word of experience from a mom of 2 daughters.....early teen years are absolutely a war period, so suit up and demand respect...you deserve it.

share a smile today,
phyllis

gina
02-12-2009, 05:17 AM
thanks for your advice my oldest is 24 middle is 17 and youngest is 11 so i know what you mean. none of them get whats going on and my marriage was ruin over it i needed support he wouldn't give it so i found someone who did. now husband getting remarried i guess it wasn't met to be. anyway its great to have people to talk to that understand what your going thru. my boss is great and the middle child is starting to understand it now she working as med. asst. so now its better. i think i going to try meds. again, my digestion system wasn't working right for about a year because of this and pills made me sick. but someone said to me to try them and they take a long to time to work so going to call the dr.