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Nonna
01-01-2010, 01:57 PM
From what I've read here, it looks like Lupus effect each person differently. I've had all sorts of "flares", they seem to happen every 5-10 years. Being told I had Lupus was actually a relief. Isn't that crazy? It answered the question of "why are all these medical conditions happening to me. The list of destruction is long. Adding the lupus meds to my long list is disheartening. My main problem is taking all these meds 3 times a day and trying to remember what I took. Actually reading about the brain fogs, I think someone called it that, was very helpful. Short term memory loss can be chalked up to every single thing that's now wrong with me.

I want to thank the ones behind the scenes here for being here.

Nonna

Angel Oliver
01-01-2010, 02:53 PM
Welcome to the forum and im sorry you have had the Lupus diagnosis but yes the foggy days are frustrating.I set my phone so it goes off telling me what to take when my fog is there.Sometimes i'll take my meds go and sit down then come back to take them again :)But i know i took them as they are in a weekly box with the days n times on the box.Yes sometimes i think,now did i fill the box up,but the answer is always yes,so we all understand you.Hope today is a good day for you.Catch up with you soon.

Love Amanda.xxxx

BonusMom
01-01-2010, 05:00 PM
Welcome to WHL Nonna! It's a fab group of great people who will support you, laugh with you and help you navigate the waters of SLE.

It is not crazy to feel relief when you finally receive the diagnosis. If that were the case, we'd all be certifiable. Lupie-yes; crazy-no.

mountaindreamer
01-01-2010, 06:21 PM
hi nonna,

welcome to a wonderful group of people who truly care about each other. This is a place where you can get the answers to any questions, and where you can find a shoulder to lean on if need be.....welcome, and enjoy your time with us.

kim,l
01-02-2010, 04:11 AM
hi nonna and welcome i understand your relief we al feel the same way it was hard for a lot of us to pinpoint what was wrong with us and get doctors to believe us just having a name for our illness was a relief to most of us and just know we are here for you to chat when ever you need hugs kim l

Nonna
01-02-2010, 05:09 AM
Thank you all, it's been really hard to know whether a symptom is the result of a condition or the lupus/SLE. But knowing that you are all out there and I can get opinions is going to be a great help.

Life is great, enjoy it to the best of your ability.
Nonna

rob
01-02-2010, 07:28 AM
Thank you all, it's been really hard to know whether a symptom is the result of a condition or the lupus/SLE. But knowing that you are all out there and I can get opinions is going to be a great help.

Life is great, enjoy it to the best of your ability.
Nonna

"Life is great, enjoy it to the best of your ability"...

I like that, I like that alot! Anyway, Hi Nonna. I'm Rob, and I was diagnosed with SLE in 2004. Being told you have Lupus, and feeling a profound sense of relief, may be crazy in other people's worlds and lives, but here, for us, it's normal. I smiled when I read that because I felt the same way when I got my diagnosis. To be relieved when you finally have an answer to what is causing mysterious, and alarming symptoms, means you can then pursue a treatment and start keeping those symtoms under some control. That's a good thing.

Like you, one thing that haunts, challenges, and frustrates me most days, is cognitive dysfunction, AKA brain fog. Often I cannot write well, or spell simple words. I lose my train of thought easily in conversations with people, I find things like Windex in my freezer and bread in the medicine cabinet. It can sometimes be pretty funny, but mostly it makes me feel as though I'm losing my mind. Not much fun, so I slug through it and endure the bad days, while embracing the good ones and enjoying them for everything they are worth, much like your saying that like so much.

Anyway, looks like you've already met some of the gang. I thought I'd say hello, and welcome to our group. We are a laid back bunch, so please make yourself at home, and feel free to join the conversation wherever, and whenever you please.

Rob
Moderator

kim,l
01-02-2010, 05:02 PM
dear nonna i know the brain fog is bad i am also like rob misplace things and put them in the wrong place my spelling has become bad because my mind wanders while in hospital last year i forgot my kids names i have found a cork board or white board are good things to use if you need to remember things and have become a vital part of my life now for memory purposes hugs kim l

Nonna
01-03-2010, 03:46 AM
Hi Rob, I like your tag line also - leave lupus, take cannoli. Although I'd rather have my Nonna's Christmas cookies.
Thanks,
Nonna

Nonna
01-03-2010, 03:53 AM
Thanks Kim, I'm getting to that point, haven't reach it yet; but close to it. as for misplacing things - it's where did I leave? It's also hard in that it's also a symptom of hypothyroid, and parkinson's. both of which I'm dealing with. I've so many Doc's at this point that I'm going to have my GP co-ordinate for me.

Nonna

Remember Enjoy Life to the best of your ability

Angel Oliver
01-03-2010, 04:15 AM
Thinking of you and hope today is a good one for you.Lots of love.xx

kim,l
01-03-2010, 05:51 PM
dear nonna i also have thyroid problems so i know what you mean and i also watched my grandmother who had parkinsons and what it did to her i am so sorry you are dealing with so much please know i am thinking of you and if you need someone to chat to you can message me at anytime hugs and lots of love kim l

SandyR
01-13-2010, 09:36 PM
hi Nonna - welcome! I like your user name. Reminds me of a little italian grandma. :D I get you about the fogs. I am only 31 and have one of those biiiiiggggg pill boxes for the week to remember to take my pills daily. I use my phone as an alarm all the time. Must right things immediatly (in the same place each time) or I forget. People at work think I am just very organized, but they don't get it that I am not at all, I am just so scatterbrained that I need to know where to find what I was looking for or working on and can do it fastest with simple systems to help me. The most common thing I misplace is my cell phone. Almost always when the volume is off too. That and my keys that I usually leave in the key hole to the door once or twice a week on average. *sigh* if you go back and search the threads you will find one from a few months ago about all the funny and not so funny things we have done when foggy headed. There's a really funny one on there from Rob, but I am going to let you find that and laugh for yourself.
PS Rob - Windex in the freezer is pretty funny but that other story has it beat! ;)

Nonna
01-15-2010, 11:50 AM
hi Nonna - welcome! I like your user name. Reminds me of a little italian grandma. :D I get you about the fogs. I am only 31 and have one of those biiiiiggggg pill boxes for the week to remember to take my pills daily. I use my phone as an alarm all the time. Must right things immediatly (in the same place each time) or I forget. People at work think I am just very organized, but they don't get it that I am not at all, I am just so scatterbrained that I need to know where to find what I was looking for or working on and can do it fastest with simple systems to help me. The most common thing I misplace is my cell phone. Almost always when the volume is off too. That and my keys that I usually leave in the key hole to the door once or twice a week on average. *sigh* if you go back and search the threads you will find one from a few months ago about all the funny and not so funny things we have done when foggy headed. There's a really funny one on there from Rob, but I am going to let you find that and laugh for yourself.
PS Rob - Windex in the freezer is pretty funny but that other story has it beat! ;)

Takes probably because I am a little Italian American grandma
As for Robs Windex in the freezer, for the past 40 years I come home from the grocery store with the wrong can of vegetables. I want green beans and I always pick up corn if I'm not careful.

Thanks for the welcome.
Nonna

Remember to enjoy Life to the fullest and the best of your ability. It's all you get.