View Full Version : Introduction of myself

12-27-2005, 03:52 PM
For a few months I was very sick. My temp had gone to 104.3 which put me in the ER for spinal taps, x-rays, countless blood tests and all of which showed nothing. They sent me home where I finally got my fever to break, but not go away. Then my hands starting to swell and they hurt so badly. My joints in my fingers were so stiff. I was so overwhelming tired and couldn't accomplish the smallest task. My work was suffering, my children were starting to feel it.. so I went back to my doctor in tears telling him simply... I am sick and something needs to be done. So back up to the hospital for more blood work. They were looking for Mono plus Epstien Barr. I go home only to have my knee joints in pain, my feet, and my elbows. The next thing I knew is that when I touched something cold or hot my hands turned white and went numb. So I go back to my doctor who sent me for blood work for Lupus. They called me back 4 days later to tell me I had Lupus and are sending me to a Rhuematologist in January. Since that phone call, 2 weeks before Christmas I have been in so much fear. I am in pain everyday. My hair is thinning. My period has stopped. My hair hurts too. My joints are all swollen and it hurts somedays to get out of bed. I run a fever a lot and am so tired it makes living hard soemdays. I have very dry eyes and small ulcers in my mouth. 3 1/2 months ago I was healthy. I didn't hurt. My arm hurt a bit and I thought I might have some tendonitis issues from work. Now what? I had to leave work since I was in a position where it was all or nothing and I had to cut down to two hours a day and even then I couldnt' amke that all the time.

I did a ton of reading online and finally came across this group. I have now spent so many hours reading about everyone and am so thankful to have found people who are like me. I thought at first I would die within a few years and somedays when I think of how fast this all eating me.. I wonder how progressive Lupus can be. I have done so much crying and wondering where and why, but now I am looking for some support from others who understand how this effects ones life.

Thank you to whoever developed this site. I for one am very much in appreciation.

About me. I am now 38. I have three children. 20, 16, and 6. I left my job three weeks ago and am looking for something I can do part time with some flexibility. I am really looking forward to getting to know you all and learning from you.

Thank you

12-27-2005, 08:37 PM
Billie- first let me say welcome to the group. There is alot of useful information on this page that should make you feel not so alone. I was diagnosed with lupus in October, and don't share the symptoms you have but thats not too uncommon with this disease. What I have learned is lupus is not a death sentence and things will eventually get better. Right now you need to take care of number one which is yourself. Avoid stress, eat right and I would push for a earlier appointment with a Rheumy is yours is late next month. You need to be a strong advocate in your care, and take charge if you don't feel you are getting the care you need. I hope you continue to let us know your progress. - Maryann :wink:

12-29-2005, 07:47 PM
Hi Billie;
Welcome to our forum/family. No, you are not alone! As you can see, many of us have gone through what you are describing and all of us understand how you fee. Lupus affects each of us so differently, for some, it comes on us slowly and progresses slowly. Like you, Lupus came on me suddenly, progressed very fast and, within months, I was deathly ill and told that I might not live to the end of the year! The good part was, my doctors and my treatments were also aggressive. So, here I am in my 14th year of remission!!!
So, do not lose hope and do not think that all is over because you are so sick now. It is possible for you to regain relative good health...it IS possible!!
We are here for you and want you to remember that you are not alone!

Peace and Blessings

12-30-2005, 01:18 PM
Welcome Billie:

I hope the holiday found you well and in good spirits.

I know it might sound a little silly, but it has been so much help to me. I'm sure we all can attest to how the doctors always tell us we do not drink enough water. I have found if I drink about 100 oz. of ICE cold water that it helps to control my fevers, and overall makes my joints feel better. It may all be in my head, but my doctors said it is the smartest thing I've ever done...the key is the ice cold though...it isn't so much that it put's your body in shock, but if you drink it through out the day it will help maintain your temp, and help with a small amout of fatigue!!!

Hope you are feeling better real soon!!!