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Thread: Looking for some much needed support

  1. #1
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    Default Looking for some much needed support

    Hi! I was dx with lupus about 7 years ago and had little to no symptoms until becoming pregnant with twins two years ago. Since giving birth to my two miracles I have been in huge flare up and the joint pain and fatigue (not to mention depression) has been severe. The doctors can't seem to help me without high dose steroids and I find myself isolated as many people think I am just lazy or whiney.

    Any words of wisdom or encouragement would be appreciated! I would love to meet some friends with similar frustrations. I have so much I want to do and can't due to my bodies limitations. I am so excited to find this web site! Thanks!

    Maggie

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    Default Hi, Maggie

    Welcome to the forum - it's a warm and welcoming place for people to share their experiences and frustrations in living with the ups and downs of lupus. My oldest sons are also twins, so I well remember the stress of chasing two toddlers at the same time. Twins are so much fun, but they can also be a challenge - I just hope I can survive the stress when they are old enough to drive. Luckily I grew up with seven older brothers, so I'm completely unfazed by bugs, snakes and everything else four boys can get into.

    Are you under the care of a rheumatologist or someone who specializes in lupus? I ask because you mention high-dose prednisone, which most rheumatologists prefer to avoid if at all possible. Unless you have significant organ involvement or something like pleurisy that requires a short course of steroids, steroids are not a first-line treatment for lupus anymore. Because of the risk of significant side effects, most doctors recommend steroid-sparing medications, including plaqunil, imuran and cellcept. Are you on other medications other than prednisone?

    I know there will be other people along to welcome you - I just wanted to say a special hello as another mother of twins.

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    It was so nice to hear from another mother of twins! I have girls who aren't into bugs and snakes but sure have plenty of female attitude I am switching rhuemetologists this week since my current one doesn't seem to be helping me. I've been on Plaquenil for a while and it had always done the job until I had the girls and all the sleep deprivation started. Everyone expects me to rise to the occassion but they don't understand the toll it's taking on my body. Sometimes I am so depressed that I don't have the energy to particpate more in my kids active play or my temper is short because of pain and fatigue. Did you go through that when your twins were young? Thank you for your reply. It helps to know that someone with lupus survived the toddler stage.

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    Hi, Maggie. I was actually diagnosed with lupus until my youngest son was born so at the time the twins were toddlers, the doctors didn't know what was wrong. but yes, I found myself getting short tempered and soooo! tired - the boys were never on the same sleep cycle so as soon as one got to sleep the other would wake up crying - they both had colic as babies so I would be rocking for hours. Michael was an only child who knew nothing about babies, and he was so nervous about handling and feeding them that it made me a nervous wreck. It's hard to "rise to the occasion" when you can hardly get out of bed - I took aspirin like they were candy, drank coffee 24/7, and still felt like I'd been run over by a Mack truck most of the time. My mother in law was hypercritical and thought I should be able to keep the house immaculate, cook dinner every evening, take care of the twins and still work full time - I'm not sure what fantasy world she was living in, but there were a few times I thought about doing her serious bodily harm! (LOL)

    The best advice I can give you is don't feel like abad mother for needing help! Twins can be difficult when you don't have lupus. Reach out to your family and friends and try to find some parental support groups like Mothers of Twins. A lot of churches have Mothers Day Out programs, and some day care centers will allow you to enroll your kids 2-3 days per week. Even if you don't work, you still need some time to rest and re-group.

    It's important to to remember that you can be a great mom without being supermom. Store-bought cookies taste just as good as homemade to kids, and they don't care about a few dust bunnies. It's actually healthier for kids not to live in a sterile, superclean environment, so don't feel like you have to chase after them with the antibacterial soap and sterilize everything that goes in their mouths - it really does more harm than good. Once you realize that it doesn't matter what people think, and you don't have to be a perfect mother, it takes a lot of the stress off of you.

    As the boys got older, I designated one room of the house to be their playroom and put up a toddler gate - I kept all their toys and riding trucks and things in there - they could play to their heart's content without destroying the rest of the house, and the playroom I just didn't worry about. The trick is keeping it manageable - they don't need tons of toys and playthings to be contented - in fact, my kids usually ignored the toys and played with the boxes! And that way you don't have to run through the house picking up toys every time someone comes over.

    Most kids are a lot more resilient than parents realize - as long as they are loved, they will feel secure. So relax and stop trying to do it all and just enjoy them - they grow up so fast!

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    welcome :lol:
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

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    Hi Magztwins
    Great to read your post. I don't have twins but I had two boys 19 months apart. The lupus was dx after the second one was born. We have actually had a full time nanny these past 3 years. I initially felt alot of guilt and shame about not being able to do it all - not to mention the costs and burden all put on my husband's shoulders. But there really wasn't alot of choice. You know how ill lupus makes a person. I really couldn't get out of bed most of the time for a couple of years. Its been 3 1/2 years now and maybe better treatments (rituxan) and time - sometimes I hear lupus burns itself out - has helped.
    About the depression - I too was depressed for a couple of years - I took an anti depressant (can't even remeber the name now) which I initially resisted because of being on so many meds. But it helped and I went off of it close to a year ago. The depression is better and yours will be too. You have alot on your plate with the young twins and lupus. Be easy on yourself and hopeful. Kids are resilient! One thing I like to do with them is keep lots of crayons and craft supplies on hand. That way I can "set them up" to create things themselves if I am not feeling well or energetic enough to do physical play. My husband calls me "wolf mother" double entendre but I think that its okay to teach kids to be a little bit more independent - it sure will help when they get older and out in the world.....
    Also should share with you that it is my husband's "dream" to have twins. He is always envious when we meet people with twins. Congrats and hang in there, things will come around. All the best thoughts are going out to you.
    Karen

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