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Lupus: My Story (LONG)

 
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Benni View Drop Down
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    Posted: Apr 12 2014 at 9:30pm
My heart go out to all of you in pain from debilitating illness.

Keep the Faith.

Love and Prayers.



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510QUEEN View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 510QUEEN Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2014 at 12:40pm
To all the ladies.....keep your head and spirits up.  I've never had this but I've had GB (Guliian Barre Syndrome) and my immune system attacked itself so I know first hand how that feels
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bianhuakai Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2013 at 9:01pm
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Post Options Post Options   Thanks (3) Thanks(3)   Quote supermodelsonya Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2013 at 11:53am
Update:

I no longer work due to my disease. I'm in a wheelchair almost all the time. I get rashes, I live on morphine IR and MS Contin. My nervous system has been affected and I almost lost my life May 14 when I went into respiratory arrest. Lupus is no joke but I'm still around. I wrote two books about my disease available on Amazon, Barnes and Noble, and iBooks called Diary of A Sick Chick, year one and two. 

I'm getting married to a great guy but no date set yet and I'm much closer to my family. I take about thirty pills a day but I try to make the most out of life. 
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Post Options Post Options   Thanks (2) Thanks(2)   Quote DolphinLuver61 Quote  Post ReplyReply Direct Link To This Post Posted: May 16 2013 at 5:31pm
I can very well relate to your story. I also have Lupus & Fibromyalgia.  Over 13 yrs ago I was dx with Firbo,  I had no clue what was going on with me, I was experiencing constant pain, fatigue. Finally I went too my Primary Care and was referred to Rheumatology, which I had 14 out of the 18 tender points. I was on numerous pain medications, also I went through aquatic therapy. During all of this I also lost the majority of my hair, which was very disturbing so I made a decision to try hair weaves, and fro there I've also tried lace fronts, so I switch off and do both at the present.
Not many people understand what Autoimmune Disorders can do to one's self esteem, However, once I not only educated myself, and accpted my illnesses, I began to be an Advocate for thoe who suffer from Chronic Pain.
I'm so thankful that there's so many options for hair of various textures and I can wear any style, it's great and it makes me feel so much better within when I can get my hair done.

DolphinLuver61
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Post Options Post Options   Thanks (1) Thanks(1)   Quote NattyDoll Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2013 at 1:12pm
I hope you're doing well dear. Keep fighting!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote supermodelsonya Quote  Post ReplyReply Direct Link To This Post Posted: Sep 19 2012 at 2:49pm
Thank you NattyDoll! A lot of symptoms that you had, I had as a child. There were times in my childhood where I couldnt' walk and would just fall to the ground. My father thought I was exaggerating but I wasn't. I tested negative for the Rheumatoid Factor (RF) at that time and nothing else was done about it. Then it just went away..until twenty three years later...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NattyDoll Quote  Post ReplyReply Direct Link To This Post Posted: Apr 28 2012 at 7:49pm
Good luck to you, you're a trooper.

A few years ago, I started having the worst chest pains. I couldn't explain them. I started looking up that and a few other symptoms I had on Webmd and Lupus came up. I wasn't too sure what it was and looked into it.

The more research I did, the more and more I realized that this sounded just like me. It explained my arthritis pains, random bruising, and the red rash on my face. I've had all these problems my whole life but just attributed it to bad genes.

I haven't ever really been to a doctor other than things like strep and to get my shots. When I was about 4 or 5, my mom took me to the doctor for my constant daily migraines. They were so bad as a child I sometimes couldn't even get out of bed to go to school. But the doctor couldn't give me an answer, and I think that's really the moment I gave up on doctors.

As I got older, though, my migraines became less and less frequent. I didn't care to ask why. And when I started reading more and more about lupus, I read that exposure to sunlight could exacerbate the symptoms. And it hit me. When I was little, I played outside all day, every day. And as I got older, I stayed in more and more. And usually the only times I got a migraine was when I'd go outside all day.

I always thought my random bruising was because I was clumsy, even though I could never remember hitting things (and when I did, it took a heavy hit to actually cause a bruise on me). Puzzling, but I didn't question it too much.

And I always used to get sick. Once a month, sometimes. I never took medicine, and eventually I just got better. I got sick for sure when I went to the beach for vacation or something of the like. Again, I just thought bad genetics were to blame.

I would have never guessed what the culprit was. When I found out, I did almost too much research on the disease, joined a forum and talked to a bunch of people who also had lupus. Just to make sure. Because I don't have health insurance, and there's no way I could afford to see a doctor (or maybe even many doctors) over and over again just to get a diagnosis. And everyone had almost the exact same symptoms as me.

When I told my boyfriend at the time, he made fun of me for thinking I had lupus, and went to his friends joking about it. They'd all laugh at me and I didn't understand why. I don't ever complain about being sick, why would I just come out of nowhere with some random disease to get attention?

So I stopped telling people. I never mentioned it to anyone again. Sometimes when I'm really close to someone, I'll tell them about my symptoms. But I won't ever tell them the name of the disease. I won't tell them too much.

This whole thing has made me realize that I'm strong on my own, and other people don't need to know what I'm sure I have. They don't need to know what I'm going through. I know what it is and I can take care of myself, by myself. Maybe if things ever turn serious, I'll begin to open up. But having a mild case like I do, I don't need people to help me through it. :/

Now, I won't go out in summer without sunscreen, I own a parasol, completely changed my diet, I try to avoid extreme temperatures and for the rest, I just deal with it as it comes. Sometimes it gets hard. Sometimes I'm in a lot of pain. But I won't cry in front of anybody anymore. I won't let people see me limping when I get real bad pains. And I think more than anything, I tell myself that I'm normal, that I don't have anything wrong with me, that I'm just having a bad month. Try to make myself believe it.

When it starts to get bad, I'll consider going to see a doctor. Until then, it's more than bearable. It's emotionally tolling for me more than anything. My case isn't serious, but that could still change at the drop of a hat.

I think Lupus awareness needs to be raised. If I'd known what it was, I think I would have realized I had it a lot sooner. I could have tried seeking help before I turned 18 and lost my parent's health insurance. I would have learned how to take care of myself better.

And for those of you who have strange symptoms, even if you think it could be nothing, don't just keep going about your day. Look into it. If you have the means, see a doctor. You don't know, it could turn out to be something serious.

Thank you for this thread and letting others know what's really out there. A lot of the symptoms are easily missed, even by doctors. I can't even imagine what you must be going through, with your case as bad as it is. I'll keep you in my prayers.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote supermodelsonya Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2011 at 9:10am
I lost a lot of weight and would have fevers that we're unexplained. My doctor tested me for many diseases and my lupus panel came back positive.

I take twenty four medications daily to live basically. I never went up a shoe size but when my feet swell, I wore flip flops in the summer. It stopped happening as my lupus has moved on to attacking my nervous system.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote growlonghair Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2011 at 6:31pm
BUMP! Please tell us how your docs found out you had lupus as in tedts done & meds you are now taking & how they are working...also thye swelling, anyone ever went a shoe size up?
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