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Thread: New to Lups, new to this site!

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    Default New to Lups, new to this site!

    Hello,

    My name is Brenda and I was just diagnosed with Lupus and Sjogrens the beginning of April. Not sure which is worse yet, if there is such a thing. I am so glad to find a site where I can learn more and have a voice. Sometimes people just don't understand because you don't look sick. At least here it's a community of everyone that understands. Anyway, thank you for this site and I look forward to learning all I can and meeting new people.

    Brenda

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    Hi Brenda and welcome to WHL. This is a wonderful and caring group of people who really have alot of information to share. I myself have only been diagnosed since Feb and really have learned alot here and i'm sure it will be helpful to you also.

    Hugs
    Sheila

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    Hi Brenda! Although I am sorry for your diagnosis I am really glad that you have joined the WHL Family! Many of us have what is called "overlapping diseases" meaning that once the immune system starts going crazy often times we will get more than 1 illness. I understand what you mean about not knowing which is worse. Sometimes you can't tell where one ends and the next one begins!

    I look forward to getting to know you! Feel free to post on any thread or start new ones if you wish!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Hi Brenda, And welcome to WHL! So glad to have you here. And yes I also know about people and family that just dont understand just becuse we dont look sick. There are a lot of wonderfull
    and careing people here, and load's of information.
    Hope you have a good day! ~Diane~
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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    Hi Brenda and welcome. I think that you will find this site very informative. Here you are never alone, everyone understands what you are going through. Isn't it great not to look sick...makes me wonder, "what does Sick look like".
    Sue

    'Friends are like stars.....You don't always see them, but you know they are there.'

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    Welcome Brenda - I am fairly new to my diagnosis SLE and to this site too. It is a very welcoming site with lots of good info. Are you on any meds yet? I was diagnosed Feb1st and started Plaquenil then...I am just starting to feel a difference from it now and I can see just how far my fatigue had taken me before it. Welcome and take care... In my perspective; it is hard to hear a diagnosis in some ways and a relief to know in others...at least we have a community to talk to now who truly understands. Again, take care!

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    Hello and Welcome Brenda;
    I am so glad that you found us and that you decided to join our family here. You are right, this is the place to be if you want to learn as much as you can about Lupus and how it affects you (as well as one of its overlapping diseases - Sjogren's). You will find that there are many members here who suffer from both, just as you do. As such, you will find lots of information about each illness, their treatments, and how our members manage them both.
    The people here are very kind, comforting, understanding, informative, and supportive. You will find that there is always someone here when you are in need. Again...welcome!!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Quote Originally Posted by bkm0117 View Post
    Hello,

    My name is Brenda and I was just diagnosed with Lupus and Sjogrens the beginning of April. Not sure which is worse yet, if there is such a thing. I am so glad to find a site where I can learn more and have a voice. Sometimes people just don't understand because you don't look sick. At least here it's a community of everyone that understands. Anyway, thank you for this site and I look forward to learning all I can and meeting new people.

    Brenda
    Hello Brenda,
    Welcome to our lovely family of the WHL and i hope you learn alot from us besides the threads helping and you've hit the nail on the head refering ignorant people who have'nt got it (we're the walking healthy) it gets my temper up.

    I have Lupus like yourself and many more listed under my name and also the sjogren's disease, refering the lupus it's all according what you may have connected with it, if they have to run furthur blood tests and having Lupus it makes the bloods fluctuate bad so half the time it never gives proper readings.
    Refering the sjogren's that starts interfering with the muscle in your face first, you make wake up or feel through the day no sensation on one side of the face and it feels like a stroke usually but it's not it makes the muscles's give off a paralysed feeling and according to how it progresses it starts from the face and goes down the body. It causes your main gullet to actually dry out, so drink loads of fluids to help, it gives me the bile bad also and watch eating meat and hard foods, if i eat meat off a sunday dinner it pains me going down but if it's been cooked in sauce well then it slides down.

    There's many member's on here with the sjogren's and if marla gets intouch she'll attach a link, i'm with a medical service where i find my info besides doctor's that do want to help.

    I do hope you have a good Rheumo and keep we updated please.

    ~Hugs Terri~ xxx
    Last edited by Peridot20_Gem; 04-19-2011 at 02:00 AM.

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    Thank you all for making me feel so welcome. It is an awesome thing to know there is such a support system. I forgot I also have psoriasis because I had that way before Lupus and Sjogrens. I keep forgetting they all have something to do with one another. I am taking prednisone and methotrexate. Not sure if the stuff is working but I know for a couple of days after the methotrexate I feel like doo doo. I have been having indigestion a lot lately even when I don't eat. Not sure if that is associated to all this. Also, last night I had this horrible pain under my right ribs. I have been tested a couple of times for gall bladder problems but it always comes back negative. I am still not sure about my Rhuemie Dr though. Unfortunately, it doesn't seem that there are many of these specialists to choose from out there.

    I am not sure what "sick" is supposed to look like I just know that people say "Wow you don't look sick" I think I should respond what exactly does it look like? I think it's just because these diseases are not discussed as much as others or people are not as aware. I know I had never heard of Sjogrens until diagnosed.

    Again, thank you all so very much for your welcoming me and your kind spirit. It does make a person feel better emotionally!!!

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    I am not sure what "sick" is supposed to look like I just know that people say "Wow you don't look sick" I think I should respond what exactly does it look like? I think it's just because these diseases are not discussed as much as others or people are not as aware. I know I had never heard of Sjogrens until diagnosed.


    Hi BKM0117:
    That statement is like the bane of our existence. I cannot tell you how many of us have had to hear it and how many times we are confronted with it. So, as you mentioned, if we don't look sick, then we must not be sick. How sick is that? There has been a lot of discussion here about how to respond to that statement and they range from curt replies to a downright slap in the face There is an entire website devoted to that statement - www.butyoudontlooksick.com In this website, you will find "The Spoon Theory". Many of us have used this spoon theory to help our friends and loved-ones understand how this disease affects us, even though we don't look sick! Perhaps you can browse the website and see if the spoon theory might be helpful to you also.
    Methotrexate is a drug originally used for cancer patients. Although the dosage for Lupus is much lower than that for cancer patients, the drug still can make you feel sick for a day or two after taking it. Many people schedule their weekly doses on a day when they have nothing else to do or nowhere to go so that they can rest afterwards. Many find that, after the nausea subsides, the Methotrexate does make them feel better. Prednisone is usually a pretty fast working drug and you can generally feel a bit better within days. If you've just began taking both drugs, you may have to give them a bit of time before you look for truly noticeable improvement. For most, the combination of Prednisone and Methotrexate works well.
    Are you not taking anything for the pain, such as NSAIDs (Non-Steroidal Anti-Inflammatory Drugs)? If so, what are you taking?
    The pain under your ribs could be a part of your digestion issues. These issues are, unfortunately, quite common for many of us who suffer with Lupus. We tend to suffer from problems in any area of the GI system, including the surrounding organs such as the liver, the pancreas, the bile ducts, and the gallbladder. Not all of these problems will be directly related to lupus; some may be traced to side effects of medication you take or other diseases that may be present/overlapping with Lupus.Some of the symptoms you may experience include nausea, vomiting, diarrhea, or constipation. Often these symptoms can be caused by the drugs you take for lupus, such as non-steroidal anti-inflammatory drugs (NSAIDs) and corti-costeroids (Prednisone). Sometimes, though, these symptoms occur because your muscles are not properly moving waste through your intestines. This group of symptoms is known as irritable bowel syndrome (IBS), and may be caused by irregularities in your nervous system (many of us suffer with IBS).
    Your doctor should be willing to test for all of these possibilities in order to determine exactly what is causing your pain so that appropriate treatment can be started. Since Lupus is a Systemic disease, this means that it can affect every part of your body, including your organs, tissues, skin, muscles, nerves, vessels, and your brain. Therefore, no pain or discomfort, or symptom should be dismissed or ignored!
    I hope that this has been helpful and I wish you the very best. Please let us know if you are able to get your doctor to address your issues and what is decided.


    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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