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Toxic Treatments are not a Cure!!
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Top 15 Visited Pages (October 24, 2008) 13. Lupus Headaches 15. What is Lupus?
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Well, let me begin with saying, I don’t know how much more I could be blessed despite the fact that I suffer from a chronic disease and multiple illness and health conditions.
My name is Evelyn, I am from San Jose, Ca, I am 24 years of age, single mother with a miraculous and fantastic, most beautiful baby boy who will soon be 2 years old, the trouble two’s. I live with the most kind, wise, loving, caring parents and brother. Without them, I don’t know what I would do on my own. They are my biggest support system.
In February of 2003, I was diagnosed with SLE and with time came to find other complications like fibromyalgia, extreme fatigue, arthritis in just about every joint you can think of, anxiety/depression…..and the list goes on. I’ve gone through extremely short hair cuts because of the many times I would lose hair in large quantities and have some stretch marks on my face from blowing up like a blimp from high doses of prednisone. To this day I have not been able to get off of that nasty medicine. I also have a million and one stretch marks on my body because I had gained 100 lbs in one year. I have lost 70 lbs and am aiming for maybe another 10 to 20lbs to feel back to my usual self.
My wonderful parents in the hospital with me when I was diagnosed with SLE March 2003, weighing 150 lbs
Before being diagnosed, as a teenager, I would find myself very with fatigue and taking several naps, my parents thought it was laziness. I complained of head aches and migraines, and I was always having aches and pains. It wasn’t until in December of 2002 that I began having stiff hands and difficulty getting out of bed. Within a month I progressed to fevers, hair loss, malar rash, extreme weight loss, and most painfully, stiffness and pain in practically every single joint. I remember driving a good distance and by the time I got home, my hands were still stuck to the wheel and I would find myself stuck thinking, ‘how am I going to get out of the car?’ I felt like I couldn’t move a bit and if I did it was going to be dreadful. I couldn’t move on my own or do anything on my own. But thank God for my parents. They were there the entire time to help me. It took several visits to the doctors, second opinions, lab test after lab test, misdiagnoses, until finally our suspicions were correct. I have Lupus. System Lupus. What to do next? Counseling, support groups, educational classes, distractions. I did it all. I wanted to know as much as I could about this silent nasty disease.
And to think……I wanted to be those young professional girls that move out and do it on their own. Now I can’t imagine life without them near me. I did it once already when I decided to marry fast with military and live over seas in Japan. I kept getting more and more ill. I would swell with stiffness and begin losing hair again. I had to increase my prednisone on my own. There weren’t proper attentions I needed for my disease. It was an extremely tough situation, especially when your partner doesn’t know very much about your chronic illness and worked day in and out. I was on my own suffering it out in depression wishing I was with the two people that understood me best and would do everything and anything for me.
3rd place in raising money for the Bay Area Lupus Foundation 5k walk/run May 2003 Weighing 130 lbs
November 2003 at 125 lbs
I haven’t reached a complete successful remission but have had my share of stable moments. Before my former husband and I separated, I found out I was 2 months pregnant. Having a baby meant the world to me! My pregnancy was a high risk pregnancy and had premature labor. My son is a miracle baby, he was born unresponsive and now here he is running around being so silly and cute. My biggest fear is not being able to have another baby, although it has not been confirmed in my situation yet, I know that within given time, my ovaries won’t be able to produce and or I’ll experience miscarriages and eventually reach menopause before my mom does. And if it does happen, God has blessed me tremendously with one baby boy. He is my everything and my reason to keep fighting and looking forward to another day.
My first and only pregnancy April 2005 weighing 200 lbs….yikes!! Killer moon face
At 228 lbs May 27, 2008. Hospitalized, complete bed rest, doctors were contemplating about inducing me at 36 weeks. We only made it to 33 ½ weeks. I had a spontaneous 2 ½ hour premature labor.
Josiah Daniel Born May 28, 2005 at 2:43 a.m 4 lbs 2 oz, 17 inches.
January 2006 Big time Moon Face! Weighing at 185 lbs
Isn’t he just simply adorable! My most recent picture at 165 lbs. Jan. 2007 Isn’t it amazing how my face changes just by going down on prednisone!
Recently, I was diagnosed with osteonecrosis in both hips. Again, I went from test after test after one too many misdiagnosis, until finally, it was confirmed. Only my left hip was ready to collapse. I had a total left hip replacement and with time, my right hip will react too and will need that one replaced too. It’s challenging, but I can live with it. My symptoms: sudden loss in control of my left hip, limping, and yes PAIN!
The criminal behind this crime: a combination of my lupus with ongoing use of prednisone. Prednisone does a good deal to the bones and joints. Causes a good deal of water retention/ weight gain, and the one I have disliked with a passion, giving the round moon like shape to my face. I was always pretty round shaped big cheeks before prednisone, these past few years prednisone added it on. It’s funny, although I had this complication and had a limp going on, I didn’t prevent it from letting me go out dancing, socializing, having fun. Family and friends were stunned that I was still going out, I thought, well if the hips are dead, and I’m getting new ones, what more harm could I do by going out???? All I asked for at the least was a good shot of tequila and the pain was numb for a while. I couldn’t help it, I’m too young to not be going out and enjoying myself.
In the hospital for 4 days.  Left Hip
Replacement February 2007
 5 inches
and staples.
Luckily, I am now only on 5 mg’s of prednisone. I am working on getting myself off of it completely and my rheumatologist recently added Immuran as a way to decrease my prednisone with time. I read a lot about the medicine and it scares me that I may become infertile. But again, everything happens for a reason, I have the one thing God knows I always wanted in life, a child.
I know that with a good diet and getting off prednisone and most of my other medications, I will be able to be my normal self one day again. What I dislike though is that people think that this whole time that I had gained 100 lbs, it was because I didn’t take care of myself and ate all I wanted. All of a sudden I dropped 70 lbs and went from 60 mg’s of prednisone to 5 mg’s of prednisone. People thought I was really putting extreme effort at dieting, when in reality it was the prednisone.
My biggest desires in life are to find myself in a complete remission one day and to find a cure for Lupus. It is an unfair, sneaky, and complicated disease. I have strong faith that there will be one day. Science and medicine keep getting so advanced with time that even if I don’t get the opportunity to see the day of a cure, I know that there will be for others one day. I just put it all in God’s hands, because he is the only one that knows why this is placed in my body. Also, when I had my son, I read into collecting his cord blood for stem cells. My reason in collecting it: US!! I know that one day having his stem cells banked will pay off. Science and Medicine and God’s will most importantly, that I know stem cell research will be so advanced for treatments or cures for my son and I.
I hope that through my brief story about my experience with Lupus in these past few years and through my pictures, you will find hope, faith, and that you may keep your chin up. That is the only way we can all get ahead. If we all kept so negative about our situations, we would be worse off. Also, distraction, distraction, distraction! Keep yourself occupied in something always! Depression can cause a flare, so always be distracted, whether it’s a hobby, a class, a job, or even your own children. You’ll feel more motivated and prevent yourself from getting sick. I know I can’t go a day without distraction or I cry and my hands begin to swell. I am always finding something new to do and you should too! If you have any questions and or you want to be a lupus pen-pal, feel free to e-mail me: angelevy83@yahoo.com
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