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Old 04-20-2012, 11:52 PM   #1
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advice for a kid with lupus

hi im alana. i am 14 and was told i had lupus when i was 4 years old. im scared sometimes about my futur and what my life is going to be like. i guess im not looking for replies, but a way to get this out without worrying people around me. right now my lupus isnt that bad. i have the condtant pain in my nees, back, and wrist. then the random ones every were else. its not bad enoug h that i need to take medication or anything other than motren for the headaches. but theres is always that haunting what if question. what if it gets to the point were i cant walk from the pain again. or what if i cant have kids because im to sick. or what if i never meet a man because of my lupus. or worse what if i xo meet a person thst i fall in love with? i will feel guilty that i am always dick and wont be able to do the things we may want to do. npt yo mentikn the fact that his kids and grandkids could have lupus. And i have started exersising again but its taking its toll and is making me hurt and i cant stop. not only that beu it seems that i am always dehidrated! it seems e erytime one thing gets better another gets worse. i use singing and drawing as a way to relive stresd, but the artheritis hurts my wrist and the low amune system makes it so i constantly am dick with a sore throught and i cant sing. it sound like im complaining sorry but it really scares me and i just need some advice that doesnt involve me taking medication. sometimed i wish i could pray to god but after reading other lupus stories and looking at myself and the millions of desieses all over the world i cant seem to bring myself to do it. it scares me that one day i may not be able to run or sing or have kids. sorry for the complaining

 
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Old 04-21-2012, 07:19 AM   #2
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Re: advice for a kid with lupus

YaYa, I'm sorry for your problems & understand your concerns. My problems also began very young; while mainly subacute, I had some very serious episodes mixed in. I'd give an AWFUL LOT to have those years of my life back, as my problems did affect my relationships, schooling & career, marriage, basically everything. I'll probably always be mad at myself, because I saw so many drs. yet didn't get answers & help until middle age.

In contrast, you found out when you were young! So I'm wondering why you haven't been prescribed a lighter lupus med, maybe Plaquenil? (You DO NOT have to answer that.) My point is, Plaquenil helps pain, fatigue, photosensitivity, etc. And maybe best of all, it can reduce your odds of more serious damage to major organs.

When you say you're dehydrated, do you mean you're excessively thirsty? Or you sweat a lot? (Pardon, I don't mean that rudely.) People with lupus may be more likely to have ADDITIONAL autoimmune conditions, like diabetes, thyroid problems, etc. Do you have regular medical checkups?

YaYa, I hope you keep posting---and when you do, you could just write as little or as much as you want. What I hope for you is that you can feel better! Sending you big hugs, Vee

 
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Old 04-21-2012, 02:17 PM   #3
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Re: advice for a kid with lupus

[ im not on any medication for two reasons acctualy...the first one is that i swich from being in remishion to not that no doctpr will perscribe me anything much less get me a rumatolagest. the second reason is me and my mom talked aboit it snd o dont thonk i need to take snything at the moment and i dont wsnt to constanly be shoving pills down my throte like my aunt hsd to when she was in highschool. what i mean by dehidrated is i guess o dont drink enough water and i get dizzy and my vidion blurs and i cant see for a few seconds. it gets really bad in the summer and i have to caddy around 3 water bottles and drink them during school. the worstpart is is that even though i have had lupus since i was a baby the whole thing is new to me. my mom hid ot from me until i was 8 and i just went on living likenothing ever happend. but the pain gets worse and doctors are still arguing over the fact if i have lupus or not and i start looking things up.the whole thing scares me more than i let on and it scares me. thanks fpr replieing though it helps.
QUOTE=VeeJ;4965407]YaYa, I'm sorry for your problems & understand your concerns. My problems also began very young; while mainly subacute, I had some very serious episodes mixed in. I'd give an AWFUL LOT to have those years of my life back, as my problems did affect my relationships, schooling & career, marriage, basically everything. I'll probably always be mad at myself, because I saw so many drs. yet didn't get answers & help until middle age.

In contrast, you found out when you were young! So I'm wondering why you haven't been prescribed a lighter lupus med, maybe Plaquenil? (You DO NOT have to answer that.) My point is, Plaquenil helps pain, fatigue, photosensitivity, etc. And maybe best of all, it can reduce your odds of more serious damage to major organs.

When you say you're dehydrated, do you mean you're excessively thirsty? Or you sweat a lot? (Pardon, I don't mean that rudely.) People with lupus may be more likely to have ADDITIONAL autoimmune conditions, like diabetes, thyroid problems, etc. Do you have regular medical checkups?

YaYa, I hope you keep posting---and when you do, you could just write as little or as much as you want. What I hope for you is that you can

 
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Old 04-21-2012, 03:29 PM   #4
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Re: advice for a kid with lupus

YaYa, it's typical of lupus to flare & recede, that's one of its hallmarks.

As far as pills go, I'm subacute (no major organ involvement), so luckily I started with two Plaquenil daily, then later reduced to one. Upside: I lost some problems completely, my other problems lessened. Downside: none!

Lupus varies widely. Many people take only light meds, is my point. Maybe your mom and you could borrow library books on the subject, to see what the modern specialists have to say, then re-evaluate what makes the most sense to do? I'd like to you to enjoy your life more, and suffer and worry less. Hugs, Vee

 
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Old 04-21-2012, 04:24 PM   #5
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Re: advice for a kid with lupus

thanks you do not knowhow much it helps me to tslk about this.... i dont like worrying my mom about it so i is nice talking to someone. my mom doesnt even knoe i poted any of this.. :/ but taking has helped i dont suffer from any major organ problems.... just mostly the artherites which verys in pain all the time

 
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Old 04-21-2012, 05:01 PM   #6
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Re: advice for a kid with lupus

You're right that pain isn't as bad as major organ problems, but inflammatory pain still isn't good for your body. For example, inflammation can deplete the white blood cells that fight infection; also other necessary things needed by your immune system; also vitamin, iron, etc. levels. Result: you can get sick more often & feel fatigued.

Plus inflammation is hard on your circulatory system (arteries, veins, capillaries, heart). And pain can disrupt sleep; and it's during sleep that the immune system recharges & your body builds new cells.

So that's just a little food for thought... I hope you scan books & articles. You don't have to read every word, just scan parts that might apply to you.

It's thoughtful of you to not want to worry your mom. (I was like that, too.) But on the other hand, I think if I'd spoken up more, I might have spared myself some problems that just made my mom worry anyway! So keep thinking on things, OK? And post anytime, someone will always be here for you. Hugs, Vee

 
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Old 04-21-2012, 07:07 PM   #7
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Re: advice for a kid with lupus

ya i think i will look at some books. its just scary knowing about it sometimesits . its just scares me sometimes learning about it. do you have anything you think would be good to read? also i have pretty bad back and ned pain what would you do to help it? like yoga or something like that. im not a big fan of medication.

 
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Old 04-22-2012, 04:03 AM   #8
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Re: advice for a kid with lupus

YaYa, you could start with the sticky posts (permanent info posts) at the top of the thread list. You'll find that lupus has diagnostic criteria, where you usually must meet at least 4 of 11 to be dx'ed with the "systemic" form of lupus. But the reality is, I think, that any new dr. would start from scratch: it wouldn't be "good medicine" to accept a dx made by another dr. 10+ years ago. You'll also find some reading suggestions there.

I don't think neck & back are the most common areas affected by lupus, but I'm no expert. (Joint pain would be more common, I bet.) As for whether yoga might help, I think you'd want a doctor to say. A friend of mine took up power-lifting, not a good thing because his problem turned out to be bad spinal discs. (Not to worry! He's older, at an age where that's seen.)

Another thing to consider: maybe something OTHER than lupus is going on. I say that because many of its symptoms are common in other conditions. Forr example, I think there are more than 100 types of arthritis alone, some of which can start young. To me, main point is, with episodic pain & fatigue, it makes sense to start SOMEWHERE, read some, make a quick list of your lifetime medical history, talk with your mom, then TRY a dr. We'd love to know how you're doing, so stay in touch, OK? Hugs, Vee

 
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