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Thread: So glad to have found you!

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    Default So glad to have found you!

    Hello everyone, my name is Cherie Jorgensen. I was just diagnosed with lupus almost two weeks ago, but have been living with the symptoms for much longer. I can't tell you how relieved I was to find a "support group" to help me through day to day. While I'm so sorry that anyone else has to deal with this pain, it is comforting at the same time to know that I'm not alone. It's hard to explain to others how I feel, and it's even harder to get through the day trying to pretend like nothing is wrong. Everytime I smile and say that I'm fine my eyes well up with tears. I'm really not fine, I'm in pain, exhausted, and having a hard time dealing mentally with the fact that despite "healthy living" practices, I'm not in control of this. Anyway, it's nice to hear other people rant for a change, as funny as that may sound.

    I hope to pull away from this forum how some of you have coped with this disease. I have two kids under 2 that I care for everyday, and a husband who is helpful, but scared he's going to lose me to this... so I try not to discuss how I'm feeling with him because I don't want him to get sad. I intially went to the doctor because of extreme fatigue and a constant headache that was there when I first got up, and would keep me from falling asleep every night. I was (and unfortunately still am), on the verge of tears just doing everyday things, and felt like at any moment I would burst into tears even when I was doing nothing. I did that for a couple months, then the doctor thought I had a sinus infection, so great! Take some pills and get back to my old self! no such luck there, sadly. Then as he was prescribing me sleeping pills in the hopes that a couple nights of good rest would pay off, he mentioned there was a slight chance that it could be an auto-immune issue. I then reminded him that I had rheumatoid arthritis since my son was born (or so I thought it was at the time), and said "isn't that auto-immune." Sure enough, there was more to it. I saw him once after that, then took a bunch of tests for my heart/lungs, and have had to call the office to get the results... some of which I don't even know because I'm too stubborn to call at this point. He wanted me to take the tests and then we'd monitor my symptoms because I'm not too sure that I want to take immuno-suppressors. However, I haven't heard from them again and thus have know idea how I'm supposed to go about anything. I'm just frustrated, and trying to stay positive, but my body is caught in the middle and getting more tired and sick.

    Has anyone had any luck treating symptoms naturally? I'm not a big medication fan, and most I can't take while I'm nursing my daughter anyway. Please, if anyone can help I'd love to hear from you. I feel like such a horrible mother most of the time, and I want to have more kids someday but can't imagine adding any more fatigue to what I'm feeling already.... plus, I fear that the aftermath of the next pregnancy will make me worse. Has anyone with lupus had more children without getting a repercussion later?

    Sorry to be long winded. There's so much swirling around in my mind.

    I love all of you and pray for you. I'm grateful for your willingness to talk about what we have in common, and hope that I can help others the way I know that these posts have given me some insight. Thank you for your support.

    Cherie

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    Hi Cherie!

    Welcome to the Forum! I'm so glad that you found us!

    Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

    I'm really sorry that you are going through such a hard time. :cry: I know how you feel. When people ask you how you are, you have to say "I'm fine, thank you", even when you're not because you don't want to complain all the time, especially when one never really feels one hundred percent. Plus, one doesn't want to have to explain to everyone and go into whole long stories, but I think that the worst thing is when you feel extremely ill and someone says to you: "You're looking so well!" I used to really appreciate comments like that, but I don't anymore because I usually don't feel well, so hearing a comment like that is just so annoying and frustrating! Other people just don't understand how you can look so well and yet be so ill...

    Keep well and God bless!

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    Cherie, I'm glad you found your way to this forum. You'll find good information and lots of support here. Cherie, I'm new to this myself (10 months) but I've learned a few things. I think you need to find a doctor who has a good understanding of autoimmune diseases. Maybe a rheumatologist. Autoimmune diseases are so hard to pin down. You don't say how you were disagnoised with lupus. The symptoms of lupus are the same as a lot of other diseases, so diagnosis is really tricky and it's best to have a doctor who has experience with those things. You'll find others on this forum who have used some natural things to help with symptoms, but if it's lupus, it's likely that you'll need some medications to manage your illness. Without those meds, you could be putting yourself at risk for long term damage. A good doctor will help you find the right combination of medications, and will be sensitive to your needs as a nursing mother. We're here to provide you support - but we won't try to substitute for the advice of your doctor. Heaing what other's have experienced is useful, though, and can even help you come up with good questions for your doctor. I wish you the best, Cherie. I know others with more experience than me will weigh in here with some good advice for you. Check in often, and welcome to the 'family.'

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    Hello Cherie :lol:
    Welcome to our family where, as you've already seen, everyone is supportive, informative, caring and comforting. You have already been given some good advice, so I just want to reiterate what has already been said. Lupus is a very difficult disease to diagnose because it's symptoms can be the same as other auto-immune disorders. Also, the symptoms of lupus change and they develop over time. So, it is important that you follow through with the lab tests, blood tests, etc. in order to help you doctor to determine if you do, indeed, have Lupus. I truly understand your frustration, but one of the best defenses that you can have is a good understanding of the disease, its symptoms, medications and treatments. The other thing that makes Lupus difficult to diagnose is that no two persons will have the same symptoms. You must pay very close attention to YOUR symptoms, what and how things affect you and how your symptoms develop. The more you know, the better you are able to assist your doctors in determining the best treatment plan.
    One of the most important things that you can to is to begin your treatment as early as possible. It is not a very good idea to avoid medications as your symptoms may only worsen and/or it will become more difficult to get them under control. With treatment, appropriate lifestyle changes and knowledge, you can get yourself to a point where you can manage this disease and live a relatively normal lifestyle.
    As Mnjodette suggested, it is advisable that you find a good rheumatologist and that you work closely with him/her (and your primary physician) to find an appropriate treatment plan for you, especially as you are a nursing mother, so that YOU can start to manage your Lupus and, subsequently, manage your life!
    We are here to help you in any way and at any time that we can. Please come to us often and whenever you feel you need to ask questions, vent your frustrations or to share your knowledge and experience. I wish you the very best!

    Peace and Blessings
    Saysusie

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    Hi, Cherie

    I just wanted to take a moment to welcome you. I can understand your concern about taking meds while you are breastfeeding - but a good doctor can work with you to find treatments which will be safe for you as a nursing mom. As far as natural treatments go, I am very interested in holistic and alternative treatments myself, but it's really important to remember that "natural" doesn't always mean safe, especially for a nursing mom. Herbal medications will pass into your milk just like conventional meds will - and we actually have less information about the nursing safety of most of the alternative remedies, because they aren't required to get FDA approval before being marketed. There are many herbal remedies, vitamins and supplements on the market which can actually be very toxic to young children, so please check with your doctor or pharmacist before taking anything over the counter. There are non-medication therapies like massage, accupuncture, aromatherapy, and chiropractic that might help you feel better without affecting your ability to nurse. Please don't feel guilty that your healthy lifestyle didn't prevent you from getting lupus - this is not a disease you can prevent. This is nothing you did, or didn't do, that caused it. I know it's hard to get past the "why" this happened, but for the sake of your family, it's important to move on to the "how" of learning to manage the disease. It can be done. You may not be able to control the fact that you got lupus, but you can control whether or not it takes over your life. Start by making an appointment with your doctor to get all your test results and discuss treatment options, then go from there. YOU CAN DO THIS! And there are people here to listen and support you anytime you need it. I know this is a long and scary process, but please don't feel you have to go through it alone.

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