View Full Version : new to site..but not to lupus

03-10-2013, 08:20 PM
hi everyone!! my name is cecee and im 21. i was diagnosed with lupus when i was 13. i had a normal childhood and was a very active child. out of the blue i just started feeling tired everyday, had fevers of 103 constantly, loss of appetite, the butterfly rash, joint pain, the works!! i would come home at lunch or earlier than that because i was just too sick to continue. my grandma suspected i had lupus,because my mom had lupus when she was 16. she took me to the doctors, but they wouldnt listen. i was being misdiagnosed as having the measels, mono, making myself ill, and from even having an STD!! let alone i was only 13 and NOT sexual at all!!! my grandma got fed up as everyday i became sicker and sicker. Finally my neighbor suggested i see her family doctor. I am still blessed today that she was my neighbor at that time. So we head to her doctor and right away he knows that i am severly sick. he agrees with my gma that it was a possibility that i could have lupus on account of my mom. He sends me up to Pitt Memorial that same day. I was there for two weeks until they told us that i indeed had lupus. I was happy and sad at the same time. Happy because i was finally diagnosed and sad because i would have this illness for the rest of my life. I was started right away on prednisone and went home after being supplied with other meds. I was too sick to go to school, i only went to school to take my end of grade tests and would head straight home. i passed to go to high school but did not attend my graduation because i was still too weak. As years went on i became increasingly sicker. I was resiliant to many drugs. I suffered from severe constipation, nephritis, arthritis, etc. Because i was on steriods for a long time, my hip bones began to break down. I ended up having hip surgery in 2005 at age 15. Although i was cconstantly sick, i always made sure i passed all my classes and worked hard. Now i am 21 years old!! i was in school to become a nurse, but unfortunately lupus decided to change my course of work. I suffered from nerve damage in both legs and had to get my right toes amputated because of poor circulation in my legs and feet. I had to drop out of college so i could recover. Im still out of school because i recently found out that my lower spine was breaking down also. I am still determined to get my degree in the medical field though. if i cannot go back to school i will study online classes for when i do return to school. Over the years i have lost many friends because they were too uncomfortable to try and understand what i was going through. Some people have gone as far as saying that i wasnt even ill and just wanted attention!! i just simply inform them of my illness and walk away. I am lucky that i have a few friends who still love me for me and my sister and family to support me :)

03-11-2013, 05:57 AM
Welcome to WHL cma cecee. I'm really sorry you've had to deal with the tough row you've been given in life. It's good that you're still plugging away at it, determined to finish your schooling. Keep at it. I've found over the years that a true friend is the one that stays through it all with you. It might be a neighbor, school mate, or a relative. Just be who you are. It's difficult all the way around for a person with a chronic illness when dealing with other folks. I find that I often do not have enough patience with people who don't understand my situation. It's difficult to explain things in a concise manner without boring a person to tears (or scaring them that you might be "contagious"... lol), so I'll tend to push people away, so I don't have to deal with them and explainin things. That's not a good way to deal with folks though, either... Then there's the person who just doesn't want to hear it. Lately, I've been trying to give people the benefit of the doubt, and just smiling at them... Treasure your friends.

03-11-2013, 07:10 AM
Hi and welcome to the WHL family! I am sorry about the Changes that Lupus has made to your life however I believe your life will be better than you ever dreamed.

I look forward to getting to know and once again, welcome to the family

03-11-2013, 09:57 AM
yes jmail, i have to agree that some people just dont care...sometimes its like they are saying "your illness isn't as important than others like terminal illnesses or cancer"