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Old 09-28-2012, 12:18 AM   #1
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Question Anyone with lupus

Just wondering if any one on here has lupus and how they deal with it, also the kind of problems its caused them.

About me....I was diagnosed with SLE lupus 4 years ago and its caused many many problems that have really set me back in life.
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Old 10-02-2012, 11:24 AM   #2
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Bump no bump?
Well I guess I'm the only lucky one with lupus on TW
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Old 10-02-2012, 03:18 PM   #3
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damn,.,sorry

what symptoms do you get?
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Old 10-02-2012, 03:21 PM   #4
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I have a good friend with lupus... I know some of her symptoms and what she is going through, but I cannot speak for her other than what I have seen.
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Old 10-02-2012, 04:09 PM   #5
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seems similar to many other auto immune disorders...
I have MS if it makes ya makes ya feel less alone.

Was diagnosed back in '01

Now life has more challenges

Try not to feel sorry for yourself...
and do what you can... while you can.

In other words... put up a good fight

sorry life has dealt you a shitty hand
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Old 10-02-2012, 04:17 PM   #6
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hey man, make the best of what you got and take the bad with the good. You've got thousands of brothers (ans sisters lol) here on TW wishing you the best, and your one of the chosen few lucky enough to have a taco! You'll work it out, stay positive and have fun.
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Old 10-02-2012, 04:35 PM   #7
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Well my lupus has lead to arthritis in all my joints, the medication lead to steroid induced hyperglycemia (diabetes) which became type 1, it was actually diagnosed by a endocrinologist, my pancreas wasnt producing insulin any more. Somehow with diet and natural stuff (exercise was not an option for me because I was making ketones and loosing alot of weight)my pancreas went from not producing insulin to now I'm hypoglycemic (which is easier to live with).
My lupus flares are caused by the sun, medicine allergies, and ra flares. What sucks is my lupus causes menegitus (non contagious type) and specifically affects my brain and spine. Its brought on many other problems (even a bit of brain damage-memory loss) last year I had 9 flares all lead to menegitus which lead me to be put on a chemo treatment (which was the worst point in my life).
I posted on here thinking maybe someone knows how to deal with it better or how to actually make a life with it. Im kinda stuck and am not sure how to go with it
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Old 10-02-2012, 04:37 PM   #8
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This might seem superficial but I don't mean it to be, but do you have a Bible? That's helped me through my darkest times, sounds like you're in yours now. I'd be happy to get you a good one.
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Old 10-02-2012, 04:46 PM   #9
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Quote:
Originally Posted by benbacher View Post
This might seem superficial but I don't mean it to be, but do you have a Bible? That's helped me through my darkest times, sounds like you're in yours now. I'd be happy to get you a good one.
^^ This was a really nice post
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Old 10-02-2012, 04:46 PM   #10
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Thanks everyone. Im just stuck, I cant find a job and dont really want to just get a job that will cause a flare. The biggest problem I have is I'm a hands on person but my ra doesnt allow me to work with them, they literally swell and get fat they also cramp. I've never had a sit down job and my bones dont like to sit for too long either. And thats why I feel stuck.
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Old 10-02-2012, 04:52 PM   #11
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Quote:
Originally Posted by benbacher View Post
This might seem superficial but I don't mean it to be, but do you have a Bible? That's helped me through my darkest times, sounds like you're in yours now. I'd be happy to get you a good one.
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Originally Posted by jivewalker View Post
^^ This was a really nice post
yea it is.
Trust me through all of this I've gained alot of faith, life gives and takes I'm just waiting for it to start giving a little back


Doctors once told me there was a chance I wouldnt walk again because my spine had been affected so much, they also told me my pancreas wasn't working and that I should get use to being a diabetic, being on a diet and injecting myself with insulin everytime I ate. I've proved them wrong everytime so far so I know my life could be alot worse.
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Old 10-02-2012, 05:41 PM   #12
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I hear ya bro, I don't know what your faith is like, but I work at a church up here and have never been charismatic before, but we have seen some CRAZY stuff. God's not done doing miracles that much is for sure. I think it was a month ago that a 2 week old baby was diagnosed with brain cancer and they were going to operate to remove a large tumor from her brain. She was prayed for on sunday following a week of MRI's to prep for surgery. On Tuesday the family went in to get the final MRI to do the locate for surgery that day.....no tumor, and no trace that cancer was ever in her body to begin with. All that to say, you aren't out of luck yet man. Keep praying. We'll do the same up here. Can't imagine being 23 and in your shoes. Props for keeping your head above water.
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Old 10-02-2012, 11:40 PM   #13
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Quote:
Originally Posted by benbacher View Post
I hear ya bro, I don't know what your faith is like, but I work at a church up here and have never been charismatic before, but we have seen some CRAZY stuff. God's not done doing miracles that much is for sure. I think it was a month ago that a 2 week old baby was diagnosed with brain cancer and they were going to operate to remove a large tumor from her brain. She was prayed for on sunday following a week of MRI's to prep for surgery. On Tuesday the family went in to get the final MRI to do the locate for surgery that day.....no tumor, and no trace that cancer was ever in her body to begin with. All that to say, you aren't out of luck yet man. Keep praying. We'll do the same up here. Can't imagine being 23 and in your shoes. Props for keeping your head above water.
I believe you man, Ive had things happen that probably only a miracle could explain. I really was diagnosed as a diabetic took insulin, check my sugars, was on a diet, had test to prove my pancreas was giving up, my a1c was 11 I think. I hated my life and then like a miracle my body began producing insulin I stopped injecting myself and even went on a cruise were I ate ice cream all day, I just looked at my diabetes supplies and never used it. All that happened in about two weeks, it really was a miracle.
There is a saying in spanish I believe in- it says "Dios aprieta pero no aorca" which kinda translates to "God chokes but doesn't suffocate". It may sound a little odd but its true I've lived it. Through all this though I did have someones support she made a big difference in it all. I just keep hoping it gets better but until it does I'll feel stuck .
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Old 10-03-2012, 11:14 AM   #14
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"God chokes but doesn't suffocate"

I see what they're trying to say, but the doctrine is a little off. God isn't the one choking you, we live in a fallen world and as a result, we are susceptible to these things. The exciting thing here is, when God DOES redeem your body, and I believe He will, you're going to be so flippin full of faith you won't know what to do with it all. He never leaves us alone. Praying specifically that He returns your body to the way it was deigned to be. That everything be put in it's proper order the way He designed it to operate. Hahaha who better to fix you than the one with the blueprints?
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Old 10-03-2012, 11:47 AM   #15
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I just read this whole post and I feel for you brother.I know it has to be extremely hard and alot to go through but like everyone said fight it!! beat it!! and destroy it!!. I cant say anything from experience because thankfully Im healthy but when I hear peoples stories like this and how it affects them......... Thats my soft spot. I couldnt imagine what you are going through and how it changes your life, the only thing I can do is uplift you and give you my condolences. Like you said it could always be worse and there is worse out there so be thankful for the good and hold your head high, You have thousands of TW brothers and sisters here that Im sure would do anything for you as myself would. If you ever need anyhting you ask. Keep it real and hang loose brother and always fight never give up. If your feeling low talk to somebody. Take care
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Old 10-03-2012, 12:58 PM   #16
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Quote:
Originally Posted by benbacher View Post
"God chokes but doesn't suffocate"

I see what they're trying to say, but the doctrine is a little off. God isn't the one choking you, we live in a fallen world and as a result, we are susceptible to these things. The exciting thing here is, when God DOES redeem your body, and I believe He will, you're going to be so flippin full of faith you won't know what to do with it all. He never leaves us alone. Praying specifically that He returns your body to the way it was deigned to be. That everything be put in it's proper order the way He designed it to operate. Hahaha who better to fix you than the one with the blueprints?
You seem to have alot of faith man. I hope life will turns around soon and get me back on track to a future.

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I just read this whole post and I feel for you brother.I know it has to be extremely hard and alot to go through but like everyone said fight it!! beat it!! and destroy it!!. I cant say anything from experience because thankfully Im healthy but when I hear peoples stories like this and how it affects them......... Thats my soft spot. I couldnt imagine what you are going through and how it changes your life, the only thing I can do is uplift you and give you my condolences. Like you said it could always be worse and there is worse out there so be thankful for the good and hold your head high, You have thousands of TW brothers and sisters here that Im sure would do anything for you as myself would. If you ever need anyhting you ask. Keep it real and hang loose brother and always fight never give up. If your feeling low talk to somebody. Take care
Thanks man
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Old 10-03-2012, 04:43 PM   #17
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I got faith cause it been proven to me over and over again. That and I'm a pastor comes with the job.
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Old 10-03-2012, 06:08 PM   #18
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I got faith cause it been proven to me over and over again. That and I'm a pastor comes with the job.
Aw man now that explains alot, kool
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Old 10-03-2012, 06:37 PM   #19
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Originally Posted by Dcpsychobilly View Post
I believe you man, Ive had things happen that probably only a miracle could explain. I really was diagnosed as a diabetic took insulin, check my sugars, was on a diet, had test to prove my pancreas was giving up, my a1c was 11 I think. I hated my life and then like a miracle my body began producing insulin I stopped injecting myself and even went on a cruise were I ate ice cream all day, I just looked at my diabetes supplies and never used it. All that happened in about two weeks, it really was a miracle.
There is a saying in spanish I believe in- it says "Dios aprieta pero no aorca" which kinda translates to "God chokes but doesn't suffocate". It may sound a little odd but its true I've lived it. Through all this though I did have someones support she made a big difference in it all. I just keep hoping it gets better but until it does I'll feel stuck .
Oddly enough, I was diagnosed with MS back in 98'. My wife bailed and broke up my family and ruined my entire life. I am disabled now and cannot work anymore. can't even walk ten feet. Five years ago I met my new wife and the last five years have been the best of my entire 47 years on this planet. Sometimes when doors close, new ones open. Stay positive my friend, we all get thru somehow.
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Old 10-03-2012, 06:45 PM   #20
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Good friend of mine has lupus . You have to really take care of your self and watch your diet . He didn't and for awhile was unable to walk without assistance and has had other health issues . He moved away from all the partying for the last year and is taking care of himself and is doing much better .
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