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Thread: aloha to all of you with lupus

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    Default aloha to all of you with lupus

    Hi, my name is cindy and I am new to this sight, infact this is the first time I have even join a support group, I thought I could just handle everything myself (right!).

    For 3 years I have had SLE,FM, RA but finding the lupus is the root to my troubles and reading different entries I am understaning I am not alone. I am a mother of 2 teenagers and am still able to work fulltime. I am lucky I work 3-12hr shifts a week and I am able to split my days, so far so good.

    Lately I have noticed changes in how I have been able to use my brain. I will be talking and forget what I am saying, was making dinner the other night and had to stop to remember how to finish making my lazona. Has this happen to anyone? Do I need to talk to my rheum about it. I also get real bad itches on my legs and if I scratch them, it gets more intence and spreads, but there is no rash or anything, it is wierd.

    I hate going to my rheum, it's had to talk to him about things, I usually just go in and tell him everything is fine and get the refills on my meds and get out. Any suggestions ???

    well thanks for just letting my ramble on and thanks to all my new friends

    cindy
    aloha 2 u

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    Hi Plamtree cindy;
    It is well known that lupus patients often experience accelerated declines in thinking and memory, especially as we age, despite the absence of the usual neurological culprits, such as neurovascular inflammation or stroke.
    There is a big push attempting correlate memory loss in lupus to the consumption of Apspartame. That is a big debate and I suggest that you research it before you add to its validity in your personal case.
    There is also a study which correlates memory loss in lupus to an immune system antibody that lingers in especially high concentrations in lupus patients which appears to attack and kill brain cells.
    The fact is that memory problems are not uncommon for us..neither are mood swings, depression, sometimes blurred vision, etc. etc.
    I forget to finish my sentences...forget how to add when balancing my accounts and other such scary occurences. So, I truly feel your pain in that area. ops:
    So..You are not alone!!!
    Saysusie

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    Hi Cindy. Welcome!!! It was hard for me too, to admit I needed to talk to someone, anyone and this site has been awesome.
    Memory? What's that? My dh and I have had soooo many fights because I'll say I'm gonna do something or he'll ask me to do something, or even if we've just had a conversation, I will forget it ever took place. He's started writing stuff down so I'll remember, which at first made me sooooo mad because I felt like I was losing my mind. But the lists do help. Yesterday I was talking to a co-worker and we were talking about my mom (who has RA and MS) and for the life of me I could NOT remember my mom's last name. Actually didn't remember it til this morning and now that co-worker is out sick and I can't tell her LOL Her last name is James. How the heck do you forget that? Um, better yet, how do you forget your mom's name? :shock: Like you I'll be in the middle of talking and completely forget what I was saying and the person I'm talking to will be looking at me like, are you all right? LOL The worst one was forgetting the stove was on. Thankfully I hadn't left the house, I just smelled it on about 2 hours later. UGH
    So yeah, I think memory issues are just par for the course. They are for me anyway.
    And the itching? I've scratched so much I end up with bruises cause of this one. But never actually have a rash or anything visible. It's like it's underneath the skin and I can't get to it or something. VERY irritating.
    So sorry you have these issues too.
    Welcome to the family. There are some pretty awesome people here.

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    Hi Palmtree Cindy,

    I'm fairly new to the site too. This is only my 2nd posting. Just wanted to tell you like the others your problems are just a part of the battle. I have not experienced the memory loss (I don't think) but the itching yes. Actually before I was diagnosed I would itch uncontrollably, break out in big huge hives, and my face would swell. Did anyone else experience those symptoms? Anyway doctors would just tell me it was an allergic reaction until an herbalist and then rheumy confirmed I had Lupus. I find heat always makes it worst so I sometimes put ice packs on the area if I'm about to tear off my skin. Well I hope thinks get better.
    "Be Encouraged No Matter What's Going In
    He'll (GOD) Make It All Right"

    Everyone, If you remember my first post was "Depressed Beyond BeliefĒ Iím doing a lot better my cousin came and spent a week with me and really reminded how far I have come and how thankful I should be for the Lord healing me thus far (I was fighting for my life for a year and half, it is a miracle I'm still alive). I'm keeping my spirits high and looking forward to starting my new job in August!
    lil_magic99
    "Remember God never gives you more than you can bare"

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    Default thanks for the response

    thank you all for your encouragment, at least I know I'm not going out of my mind :lol: I am going to try ice packs the next time I have an itch attack.

    lil magic99, congratulations on the new job, way to go! It is a great feeling to be able to move forward after falling.

    I have been waiting for the weather to warm up, we keep getting these storms and I get so stiff. Is everyone having a good week? If not lets talk about it.

    cindy
    aloha 2 u

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