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Thread: New to the forum, old to lupus, probably borderline insane!

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    Default New to the forum, old to lupus, probably borderline insane!

    Hey everyone,
    I just joined the forum because I am having trouble dealing with the news I received yesterday and need help with it.
    I was diagnosed with SLE in 1992 at the age of 12. I was treated with Plaquenil and Prednisone for the next 5 years and went into remission at the age of 17, and have been that way ever since. I hadn't seen a rheumatologist since 1997, SLE had become a vague memory and part of my past. When I got pregnant 2 years ago I filled out the medical questionnaire and answered yes to SLE, I always have. Of course the OB/GYN made me see a rheumatologist, I wasn't sick, it couldn't hurt, it was just another office visit, added to the several other office visits.
    As I expected it went well, I had no symptoms, my blood work was excellent, ANA titers were so low I could have even be just a healthy women with false positives.
    I was excited, I had avoided the rheumatologist for all these years for no reason, had I just gone they would of surely confirmed what I was now thinking was the case, I didn't have Lupus, I had never had Lupus, and it had just been teenage hormones and a wrong diagnosis. I was on cloud nine.

    I guess its never easy to be told you have SLE but in my head for a 12 year old, it was even harder, teachers don't understand that your sick, even when its a struggle to get out of bed in the morning or right your name on a test paper, because you look healthy, except for some weird rash on your face. Other 12 year olds understand it even less, they just know that you get to come to school when you want and take your test at your own leisure. Your track coach can only be so supportive of you not being able to make practice before its unfair to the other girls to keep you on the team, your friends don't understand why you stay at home so much, and make fun of your baby sunblock when you go outside.
    I hated being sick, to the point I was on several antidepressants most of the time and even attempted suicide, lupus was the bane of my existence and I wanted to keep it wear it belonged, in my past, so when I got those results back, my C4 was normal , inflammation markers normal, and ANA titers so low that I convinced myself for a second that it had all been a bad dream and I was free & clear.

    I continued to see the rheumatologist throughout the pregnancy for precautionary measures and every time the blood work looked good. My son was born 12 days late 8lbs 4oz and fit as a fiddle. One month after he was born, I was tired and achy but also a new mom so that was normal, I went back to the rheumatologist for what I thought would be my final check up.
    He was concerned, the blood test weren't looking that good but not too concerned b/c it happens sometimes postpartum. He wanted to see me back in 3 months as a follow up. Same thing then I still had no symptoms but the blood work looked even worse, wanted to see me again 3 months later... repeat. About a week or two after my last visit, I started getting achy and tired, I thought it was a virus, I've noticed my vision worsening but read that can happen sometimes after giving birth and I'm not getting any younger so I just figured I needed glasses, I also started getting scatterbrained, forgetting conversations, leaving milk out of the fridge, silly stuff, but also blamed that on motherhood and stress, that was all until yesterday when the rheumatologist said what I dreaded hearing. Your blood work is steadily declining, this is a lupus flare, you are no longer in remission and you have to go on medication.
    I know it isn't a death sentence and that I will go back into a remission again, but all those emotions that I had buried for over a decade came rushing back and now I don't know what to do with them. I'm angry, I'm sad, I feel like I am being a baby, I feel like I am a kid again, I'm scared, I am all over the place. I feel like I can't tell anyone. My mom will freak out, my husband has never seen me sick and won't really understand. I don't know what to do.

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    Hi Musick! Welcome to WHL. We are so glad that you found us! I am sorry that you are flaring again but the good news is that you are now part of our WHL family and you are no longer alone with this. You can come here any time you want to be sad, angry, cry, be scared or just talk. We all understand the range of emotions that go along with this nasty disease and those like it. There are fabulous people here who will be more than happy to help support you on this leg of your journey and to help you get a handle on all the things that you are going through.

    You might want to show "The Spoon Theory" to your husband and it can be found atwww.butyoudontlooksick.com. I used to to help a few close to me understand what it feels like to feel as I do. I know many of other use it for the same reason.

    Please make yourself at home. Look through all of the old posts or start new ones if you wish. Once again we are glad to have you and I look forward to getting to know you in spite of these difficult circumstances

    PS If you are only borderline insane you might have to excuse those of us that crossed the line long ago!
    Last edited by tgal; 01-06-2011 at 12:15 PM.
    Mari

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

    ~Winston Churchill~







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    Hi Musick,
    Welcome to our lovely large family the WHL as Mari [tgal] said, there's so many understanding people here to support you and know what your going through besides myself and yes it does get you down but we all need someone to turn to but although you have it, i congratulate you on a lovely healthy baby which was a great weight, even though you was ill and now are again.

    Like yourself i've gone through the depression stages and still have it badly and i've been diagnosed with symtoms and diseases but today had it confirmed which i've been waiting for that i do have Lupus.

    If at times i feel i can't chat to my husband the fantastic family on here are always ready to listen and that helps me in such a great deal it's unbelieveable and half the time typing and chatting on here, i've been crying with depression and we all go through it.

    Just remember you have full support with us all and full understanding.

    Do takecare Terri xxx

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    Hello Musick-
    You will find nothing but pure understanding here at WHL. The people here are like a life support system. I have had sle for 8 years and been diagnosed about 5. I have never had a remission. Congratualations on your new baby. The depression comes with the disease i'm learning, although for a long time I thought it was just me feeling sorry for myself. There is kind of a silver lining for you though, your baby. Most people with active lupus can not carry a child full term, and your extensive remission may have been fates way of giving you the gift of the child. I wish you the best and hope you enjoy the site as much as I do.
    Hugs-Heather

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    Hello and welcome Musik;
    As you can see, you are in good hands here with us and we embrace you with understanding and supportive arms.
    Everyone, so far, has given you excellent advice and you are blessed to have given birth to a healthy child. Now, it is time for you to take control of your health to ensure that you will be the best that you can for your child.
    One thing that you need not worry about is a repeat of the ostracism that your received when you were a child with this disease. I am not saying that there are not going to be occasions when you will run into ignorant, judgmental or even cruel adults. However, what we want to do for you here is to give you the support, information, and education to help you know that the problem is with those people...not with you!
    There are many of us who have lived with this disease for many, many years; who have dealt with periods of remission followed by periods of flare-ups. So, we can offer you advice, help, support, and understanding while you are learning how to make the best choices for yourself and your child while dealing with the news of this current flare.
    You should know that you are not alone...it is very common for pregnancy and child birth to initiate a flare up of the disease. In fact, for many women, each menstrual period brings on a flare up. So, while this is unwanted news for you, please know that you are not alone and many of us here have personal experience that we can share with you.
    As Tgal noted, this is the place where you can come to vent your frustrations, express your feelings safely, and always know that you are accepted, understood, and important!
    I wish you the very best!

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

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    Thank you all so much for your support. It really is a comfort. The memory of the feelings I had as a child being sick are probably what had me the most upset last week. I am going to try to have a more positive attitude this week. I am hoping, with the Plaquenil and Steroids I will go back into remission. It does sadden me to know that in almost 14 years they haven't even found a better medication.
    I've talked to my husband, he is trying to be as understanding as he can, but I don't think he gets it. I read the spoon theory and I don't know if that will help him so I am going to see if I can find a way to get him to grasp it. We talked about it and I think I am going to wait and see before I tell our family, especially mine, that its back. We have had a lot of stress in our life in the past year and I don't want to add any on, my mom will blame my husband and that isn't going to help anyone, especially not me. I am hoping that I can come here to vent, to ask questions, to break down, and for a support system of people that do understand what I am going through and don't just think I am being lazy and making it up.
    Last edited by musick2myears; 01-10-2011 at 09:04 AM.

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    Quote Originally Posted by musick2myears View Post
    Thank you all so much for your support. It really is a comfort. The memory of the feelings I had as a child being sick are probably what had me the most upset last week. I am going to try to have a more positive attitude this week. I am hoping, with the Plaquenil and Steroids I will go back into remission. It does sadden me to know that in almost 14 years they haven't even found a better medication.
    I've talked to my husband, he is trying to be as understanding as he can, but I don't think he gets it. I read the spoon theory and I don't know if that will help him so I am going to see if I can find a way to get him to grasp it. We talked about it and I think I am going to wait and see before I tell our family, especially mine, that its back. We have had a lot of stress in our life in the past year and I don't want to add any on, my mom will blame my husband and that isn't going to help anyone, especially not me. I am hoping that I can come here to vent, to ask questions, to break down, and for a support system of people that do understand what I am going through and don't just think I am being lazy and making it up.
    Come here any time for any reason! We will be your support whenever you need us. Take care of yourself and remember to get some rest
    Mari

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

    ~Winston Churchill~







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