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Thread: Hello Everyone

  1. #11
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    Neisha, you are not at all weak or crazy....you are a young person who has had to deal with a WHOLE LOT of life waaaay earlier than anybody should. You sound enormously strong to me, and you carry heavy burdens.

    Anybody carrying that much needs help - I am so happy you have your husband! Most of us can relate to not wanting to burden those close to us with our complaints and worries - that is part of why this forum is such a blessing, so get online and complain away to us - we understand! But also, even wne you don't complain to your husband, there's no way he doesn't see the toll all this stuff is taking on you...your actions will show it. So also don't be afraid to tell him what is going on for you, and ask for his help in getting you the assistance you need - reminding you to take your Plaquenil, helping you find some healthcare that you can afford (I know this is not easy, but please keep trying - with Lupus it is very important that you see a doctor regularly!), and helping you watch out for new symptoms.

    I know you don't want to make your life about this disease - and it won't be - but you have to go through a period of adjusting to it and learning the things you can do to manage it so it takes up as little time and energy as possible.

    But I cannot stress to you enough how important it is to take that plaquenil EVERY SINGLE DAY, and to stay on top of your medical care. Lupus can do really rough things to our bodies if we don't keep it in check. if the Plaquenil is bothering your stomach, there are things you can do to help that - always take it after a meal, split the dose so you take one of them after breakfast and one after dinner, etc....

    Some people truly cannot tolerate it, but that is rare...for most of us, the side effects go away after a couple of months of taking it regularly - but if you only take it every now and then, it won't work.

    Don't give up....if you have to, please find a good local hospital (teaching hospitals are often a good choice) and ask to speak to the hospital social worker...he or she may be able to help you find affordable care as well as direct you to resources for treating depression. ANYBODY in your position would be depressed right now - please don't neglect your emotions OR your body. They both need special care right now from people who are trained to take care of them. My mom was a hospital social worker for several years and she helped a lot of people in positions like the one you are in right now. They really are great, loving people.

    I hope you will come here for advice and support....this is a great place. And my goodness....also know that we're sending you lots of hugs and healing from afar....
    Last edited by SleepyInSeattle; 09-10-2012 at 08:00 AM.

  2. #12
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    I'm sorry your going through all this. I'm 21 too but was diagnosed when I was 14, luckily I had my mom and still have my mom to help me through this. I had to drop out of college too and am too sick to work. Sometimes I feel useless and lazy sitting around all day but then I realize what more can I do without making myself sicker and that feeling goes away. Feel free to vent on here, we all understand what your going through and these people on here are so nice and caring. Thats the reason why I love this site so much. If you ever just want to talk one-on-one please feel free to message me.

  3. #13
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    Once again THANK YOU ALL. For the past few months I truly been feeling like my life was flushed down the drain. It's only been a few days since I joined the site and I feel a lot better knowing there are people out there that actually know what I'm goin thru instead of jus trying to imagine like most people.

    I don't like the medication but I am going to start taking it regularly.. Is there a medication that doesn't take so long to take affect? And taste better?

    I don't know if it's depression or something else but there's times where I get extremely sad (Crying,Fighting and Cant sleep)and I feel like I'll do ANYTHING to jus feel better which has gotten me in trouble a few times. Does anyone get this way too? How do you find positive things to do? I'm kinda limited to the house and all the hobbies I used to enjoy I'm not interested in anymore. I don't know why they jus remind me of the old me that wasn't sick.

  4. #14
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    Quote Originally Posted by Mica View Post
    I'm sorry your going through all this. I'm 21 too but was diagnosed when I was 14, luckily I had my mom and still have my mom to help me through this. I had to drop out of college too and am too sick to work. Sometimes I feel useless and lazy sitting around all day but then I realize what more can I do without making myself sicker and that feeling goes away. Feel free to vent on here, we all understand what your going through and these people on here are so nice and caring. Thats the reason why I love this site so much. If you ever just want to talk one-on-one please feel free to message me.
    I feel exactly like this. I am only alittle over 6 months in and I feel overwhelm. How have you been adjusting for the 6 years?

  5. #15
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    Quote Originally Posted by Neisha21 View Post
    I feel exactly like this. I am only a little over 6 months in and I feel overwhelm. How have you been adjusting for the 6 years?
    Really I think for me the first few years were the hardest because it feels like your life just ended. Especially when I had a healthy twin sisters and friends going skiing, to the lake, swimming, working, and stuff like that when I was stuck at home. It made me feel horrible about myself and about everything around me. My mom helped a lot and I know you don't have yours but you have your husband and siblings and all of us. When I first got sick I had just gotten a kitten and he helped me so much with the loneliness and just getting up everyday. Trust me I understand the hate for the medication and being upset about losing all the things you used to do. I went through a phase where I hated taking my meds and constantly "forgot". It ending me in the hospital for a month so I learned my lesson after that.
    When you start feeling better your going to find activities you used to enjoy that you can still do enjoyable again, your just feeling bad right now but it does come back. I actually got into jewelry making, starting with small kits and worked my way from there. It's something I enjoy doing and it makes me feel better about myself when someone likes them. Now I sell the ones I make or I give them for gifts, after 6 years I got pretty good at it.

  6. #16
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    Hi Neisha,
    Welcome to the community and I'm sending you a big HUG! Thanks for sharing your story. It is encouraging for me to hear about people who are going through similar life issues - it makes me feel not so alone, and I look forward to getting to know you better.
    I also have had to quit jobs because I was too tired and couldn't think straight enough to work, and I know how frustrating it is to not know what the future will hold. I'm right there now for the past few weeks - in bed wondering when I'll be interested in pursuing my hobbies and new experiences again. I also struggle with my partner being my primary support group. My world has gotten so small these last few years that I lean on him so much, and I understand how you feel when you want to not burden him, because there are days I cry all day then take a shower and try to reset my mood before he comes home so he doesn't have to deal with my illness for a night.

    Since I've been home so much that past two years I have started one new hobby that's easy - birdwatching. I had my partner put up a feeder where I can sit in the kitchen and look out the window at it. I can do that even if I don't feel very good. It makes me happy to see all the activity of the cute little birds jumping around, and I feel like I'm doing something nice for the birds.
    ~ Morrison
    SLE and Sjogrens
    It's hard to take over the world when you sleep 20 hours a day (Get Fuzzy)

  7. #17
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    Quote Originally Posted by Neisha21 View Post
    ... I don't like the medication but I am going to start taking it regularly.. Is there a medication that doesn't take so long to take affect? And taste better?...
    "Just a spoonfull of sugar helps the medicine go down, the medicine go down, the medicine go down"...


    but seriously, get it as far back on your tongue as possible (less taste buds back there), and get it down fast with plenty of water.

    As for the weepies, I think we all have done that, at least for a little while, even us manly men folk. Ask the doc(s) about a low-dose anti-depressant. I have to get my pill bottle everytime, since I can't remember the name of mine, but it's the lowest dose, yet helps immensely. I don't know what or how it does it, but I sleep a bit better, which helps break that cycle. Be sure and pay attention to your reaction to any and all meds, and "talk" with the doctors. Even a doctor doesn't seem to listen, or can't be bothered, find another if you can.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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