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I was diagnosed with Lupus today. . .

post #1 of 37
Thread Starter 
Well, last week I went to the doctors for bloodwork, and a check up because it had been so long since my last. In the past week I have developed a rash across my face. I went in to the doctors today, and lowe and behold, I have tested positive for Lupus in two different tests. A preliminary test and a secondary more thorough test. I have an appointment with the Rheumatologist on tuesday of next week (the 18th). I am kind of scared, and kind of upset. Not quite sure what this means for me now, or for my future. Anyone here with the disease, or know anyone with. Any words of encouragement?
post #2 of 37
Aww sweetie!

My dad's step mother has been diagnosed with lupus since as far back as I can remember (and I'm 22) and has always led a pretty normal life regardless. She is just now getting really sick, but its unrelated to the lupus.

Try not to worry too much, talk with your doctors and get second opinions if you don't feel satisfied.

Mindset has a lot to do with it. She was never phased by having lupus and refused to let it bring her down. Keep your chin up!

post #3 of 37
Awww, that would be scary Hang in there. I have no idea about the disease..hopefully it doesn't affect your life too much.
post #4 of 37
I just wanted to give you some words of encouragement as well. Even if you do have lupus, that doesn't mean you can't still try to live your life normally. Things do get better... I firmly believe that everything happens for a reason. I don't know much about Lupus.. but I am sure you are going through some confusing, tough times right now. Good luck!
post #5 of 37
Rachel, I'm sorry to hear that. One of my good friends has lupus, and the good news is that she is still doing well many years after the diagnosis. She's had to change many aspects of her life - she can't be out in the sun at all without extensive protection, she can't exert herself. It's been a tough road, but she stays positive and reminds herself of what she does have and what she can do.
post #6 of 37
The fact that you know what is going on is a step in the right direction! My advice is to find out about your condition as much as possible so you are well-informed to work with your doctors.

Here's a great site:

Maybe I'll see you in the autoimmune forum.
post #7 of 37
I wasn't quite sure myself what Lupus was, so I did a search on the internet. I just wanted to pass this link along to everyone so you can also research this.

post #8 of 37
I have a very good friend that has it, and it can be managed successfully for a very, very long time. Follow doctor's orders, make sure you take aspirin daily if they recommend it. Other than that, it really doesn't change your life much, other than being a big inconvenience at times.
post #9 of 37
Thread Starter 
Thank you for the support guys. I really appreciate it. It is my understanding that you can still have a family and everything. I am only 20 so I have alot of life that i still want to live! Than you again for the support!
post #10 of 37
Awww best of luck sweety. I dont have any experience to share with you but Im hoping you feel better soon and find some way to manage your condition. Im glad they were at least able to figure out the issue, even though its not a simple answer.
post #11 of 37
Originally Posted by NoRachelHere View Post
Thank you for the support guys. I really appreciate it. It is my understanding that you can still have a family and everything. I am only 20 so I have alot of life that i still want to live! Than you again for the support!
No problem. Keep us updated as you find out more info! If you ever need to talk... you know that we are here.
post #12 of 37
I don't know anyone with lupus nor have I looked after anyone with it.

I did a google search for you and came up with this link to the Mayo Clinic. The information is extensive, but it also speaks in layman's English instead of medical speak.


post #13 of 37
I don't know much about it, but I wanted to offer you my support.
post #14 of 37
I'm sorry to hear about this! I have no idea about Lupus either, but I'm sure your a very strong woman who can get through this!
post #15 of 37
Originally Posted by NoRachelHere View Post
I have an appointment with the Rheumatologist on tuesday of next week (the 18th). I am kind of scared, and kind of upset.
Just a little heads up, your first appointment with a Rheumatologist will likely be very long. Don't be surprised if you spend hours waiting. Take all and any medical information that you have, especially copies of your recent blood work. He or she may very well want to do a full panel of blood tests as well.

Read up on lupus and any medication you may end up on. It's good to know possible side effects, prednisolone/prednisone being a big one for flare ups.

Good luck with your visit. Hopefully your Rheumatologist will help you get a treatment plan set up soon so you can get to feeling better.
post #16 of 37
Aww sweetie!!

I am sorry to hear this. I dont really know what to say. I know you are young and finding it early is probly a good thing. I really dont know much about Lupus though.

and many many to you!!!
post #17 of 37
The tenant who lives in my dad's basement has lupus and pretty much leads a normal life. Thats the good news that you can live a normal life, just a few things to listen to the doctor about, and I believe there might be different strengths of the disease, the other people gave you some good web sites to visit. Keeping positive and happy is a major step.

post #18 of 37
Thread Starter 
You guys are great! i appreciate it so much. I have heard that the first appointment will be quite intensive. . . And I am not looking forward to the bloodwork, but anything to get better. . . Thanks again guys!
post #19 of 37
The good thing is that Lupus can be managed I hope all goes well at your doctor appointment & you feel well soon
post #20 of 37
Yes, there are different "strengths" of lupus -- many people barely know they've got it, and I'm sending big-time vibes that you'll be one of those people. Stand tall and don't let it intimidate you!
post #21 of 37
Any disease is not a good thing. But you are young and it was diagnosed early on. There is no reason to believe that you can't live a good long life and have a family if that's what you want.

I have rheumatoid arthritis and was not given a real diagnosis until two years ago. Thinking back I can remember things from twenty years ago that probably were symptoms.

Now I know and am working to keep it from getting the best of me. I have a really good rheumatologist.

My advice is to find a good one and keep on top of things.
post #22 of 37
I dont know very much about it, but I'm sure catching it early on is a good thing! In medical billing I had seen the word "Lupus" here and there as a diagnosis but wasn't too sure what it was. Good luck with your appointment!
post #23 of 37
Two of my aunts(different sides of the family) have lupus and lead pretty normal lives. My one aunt has had it a very long time and has 3 very healthy children-her last one being born when she was 40-her 2 oldest were already 16 and 18!

Good luck with your first appt, hun! You will be fine
post #24 of 37
follow the doctors orders, stay out of the direct sun, and you should be fine for a very long time HUG
post #25 of 37
I was recently diagnosed with lupus and rheumatoid arthritis, and it answers a lot things as to why I have felt so tired sometimes, and gotten strange rashes over the past couple of years. I am in the midst of my first of round of prednisone, and while it is not doing very well for me, I understand it does well for most people. I am allergic to most meds, though. My life has actually been pretty normal, even with the occasional symptoms. I though I was just getting old. Many people tht have it live perfectly normal lives. You are lucky to have been diagnosed young, it gives you a better chance to fight it and live normally. My aunt had it, and she lived to a ripe old age and had 2 healthy kids.
post #26 of 37
I was diagnosed with lupus when I was 45 years old. I haven't done a lot of research since then, but it not only comes in "strengths" but also different kinds. My understanding at the time was that the kind that makes a mask on the face is not the most serious kind usually.

Lupus can occur in "flares" that last different lengths of time. In my case I had the one flare when I was 45 that lasted about a year and a half. For me it was like having a flu -- joint and muscle pain, a mild fever, and fatigue that just wouldn't go away. It also affected my mind -- I got stupid. Eventually, it began to lift and has never recurred and that was 20 years ago!

Since you don't seem to be having any symptoms, it probably will not be bad for you at this time. I know other women who have lupus and, like me, they have flare-ups, but feel fine in-between. Your doctor will probably have advice on how to avoid flares. As I said, I haven't done any research lately, so I'm sure a lot more is known now and that there are more effective treatments.

I almost forgot -- many women experience a remission of symptoms when pregnant!
post #27 of 37
Wow! You have blown my mind! Bless your heart! but just like Marvin would have said "Ain't no step, for a stepper!" That means you are going to have
to buckle down, take care of yourself, and never let it get to ya! Stay
positive, no matter what, seriously, and pray, God will bless you if you can do those things, and don't bobble. Positive will come your way! I will keep you in my prayers. These are called trials, tests, if you will! So keep your head up, and when your feeling low, just ..... look up! PM me anytime! I'm here for ya!
post #28 of 37
I'm so sorry to hear that! I'll be keeping you in my thoughts.

post #29 of 37
I have a good friend that was diagnosed in her teens. She leads a pretty normal life. There are good therapies out there and you are so young, the treatments will only get better. BTW, my friend's mom has lupus too, and she is still doing well in her 50s.

Some things I learned from her:
Be your own advocate! learn everything you can and keep copies of your own medical records whenever possible. She actually has a large file with her medical history that travels with her.

Ask questions! Doctors move so quickly between patients, it's important to make the most of the time you have with them. Don't be afraid to ask, you're not the one with the medical degree.

Don't ignore any symptoms! She doesn't run to the doctor every day, but she does keep a journal and notes her general health. That way, if something becomes a problem later she can track back quickly.

Good luck get in touch with others that have your condition. You will see that many are living pretty normal lives.
post #30 of 37
Thread Starter 
As mother Theresa siad : "i know god wont give me anything I can not handle, I just wish he did not trust me so much!"

As for symptoms, for the past few weeks, I guess we could say I have been having a flare. My hands and feet hurt so bad in the morning I could cry. Sometimes I cant even squeeze the shampoo bottle, or tear open the cats package of food. That and I get horrible horrible headaches, and I am exhausted all the time. I know I will get better with time. And I know I have to be strong. As my supervisor at work said, I have a new life now. . . Time to make the most of it!

Thank you all again for the support. . . . I appreciate it more than words can say!
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