View Full Version : Just diagnoised and scared to death!

06-10-2004, 06:03 PM
My name is Reva. I'm 41, the "mamaw" of one beautiful little boy, 2 great kids, a great husband and I'm scared to death.

I hadn't been feeling well, my legs and feet were swelling, I was getting headaches and fatigue. My whole body was in pain, an I had no idea what was happening to me. My body felt like it just had a mind of its own. I went to see my doctor, who ran test after test. They called me today at my place of employment and asked that I come to his office as soon as I got off work. I did so, not sure about what he would tell me. He told me I have Lupus, and as much as he tried to explain the disease and effects on my body, I think I just tuned him out in shock. After having a nice little breakdown about 3 hours ago today, I decided to take charge and investigate this disease further. Needless to say, I am terrified and confused at the information I am finding.

The medications I am reading about seem to have terrible side effects that scare me.

I am so confused as to WHY I got this disease, what caused it and is it life threatening? I'm so sorry for rambling on, I just need some help here to understand what I will be going through with this. Any imput will be greatly appreciated.

Thanks so much.


06-11-2004, 09:45 AM
Just a quick response to let you know that it's going to be okay. I remember feeling so much like you when I was first diagnosed (it's been almost 5 years now). Anyway, there's a great book by Dr. Wallace about lupus that I found extremely helpful and lots of times you can order one used on Amazon.com for less - just make sure you get the updated revision. As many point out here in this forum, the best thing you can do is educate yourself. You're doing the right thing by finding some support here. I'm 41 with 2 kids too - but not lucky enough to have the grandkids just yet! Anyway, there's a wide range of emotions that you will experience as you travel on this journey ... so it helps to know that you're not crazy ... that you're NOT the only one going through these kinds of things ... and that you're not alone!

Don't be afraid to try different meds as well as herbs/vitamins that your doc suggests. There are side effects with everything - but the bottom line is that you want to find what works best for your body with the least amount of side effects. It's not rocket science yet - what works for some lupus patients, doesn't work for all. You just have to keep communicating with your doctor and they will find what works best for you. For me, the biggest side effect I've had was some weight gain. I've always been short and petite and I thought that it was going to be the end of the world. I've gained some - (around 15 pounds total) but my body and joints are not hurting nearly as bad. So, I could hurt and still be a sexy mama or I could feel better and be a more voluptuous sexy mama! HEE HEE! Just find people who will keep you laughing and hand in there! Feel free to ask lots of questions here! We'll be here!

In His Love,

06-21-2004, 11:35 PM
Welcome to the site - you'll find a supportive group here.

Isn't it great the way doctors can scare you? It should be better when you see a Rheumatologist. My experience has been that family docs just aren't used to dealing with these issues, so they sort of freak out - at least mine did. My husband had moved out of state (doesn't everything always happen when you're moving) and so I'm home alone and the doctor calls at night to make sure I'm ok because the bloodwork I had insisted they do early said I was so anemic that I might need a blood transfusion. Talk about a way to freak a young girl out! I made my sister come over and stay the night with me I was so worried! Of course, then I start wondering why I'm so anemic, since I'm already taking iron supplements, and added meat back into my diet 6 months earlier. I was worried I had Leukemia or something! So I guess Lupus was a relief! My sister has it, and although I have kidney involvement, we both lead happy, and for the most part, healthy-as-we-can lives. She's finishing her Master's degree in 2 months! And we are both in our mid-20s.

We're all different and are affected differently. The loving support of my friends and family has made the most difference. Make sure ti include them. When my sis was diagnosed, she isolated herself and had a lot of problems with depression. We just didn;t know what was going on with her! So, now I'm sure to let everyone in on what's going on with me - good and bad.

I wish you luck and hope to hear some good news from you soon! Oh, and when I was first diagnosed, I did some research, but took it slowly, because it can be overwhelmig to take in all at once.