After two years of chemotherapy and all of the medication that the doctor had me on, my health finally started getting better. This was around 2007. I felt so happy to hear this and so was my mom.
The progress was slow but at least I wasn’t getting worse.
The weight that I gained from the large amounts of Prednisone finally started coming off. This is when I actually started looking healthier.
My doctor then began to slowly reduce the dosage of my medication over time. When I was around the age of 14, he stopped reducing my medicine. This is when my disease went into remission!
When the doctor told me and my mom this news, I could see the happiness and relief in my mom’s eyes. Tears started rolling down her face. After all that she had been through with the doctors and watching me suffer, I was finally “better”.
My mom sacrificed so much for me, and it was all worth it in the end. She told me that she prayed to God continuously to please take away my illness and stop my suffering. She prayed to take it away from me and give it to her.
And He seemed to listen to her.
From the condition I was in, to magically going into remission, was unbelievable and a true miracle. My doctor could not explain it and for the first time since I’d started seeing him, he had no words.
People may be skeptical that God really did answer my Mom’s prayer but the more I improved, the sicker she got.
Eventually, she was diagnosed with Fibromyalgia and then Multiple Sclerosis.
God took away my sickness and gave it to my Mom. Crazy or coincidence?
As you can imagine, going through all of this definitely had an effect on my school and social life. My friends at school always asked me why I wasn’t at school or why I was always sick. I never knew how to answer them because I thought they would ask too many questions or they would judge me or just not understand.
My answer was always, “I don’t really want to talk about it.” Every year I had to let the school and all of my teachers know about my disease. Some of them definitely treated me a little different after this. I also had to go to a different room of the school to take exams since I needed more time (I have lesions in my brain and thought processes occurred at a slower pace than normal).
My close friends and the people that I felt comfortable around were the only ones who know about my illness. Since I was always sick or in pain, I could never go out and do the same things as my friends. I felt left out. I didn’t want to accept the fact that I was a little different.
Between the ages of 8 and 12, I had the hardest times of my life.
If anyone were to look at me then, they couldn’t tell just how sick I was.
You could never tell that I went through all that I did (Refer to Part 1 if you missed it).
The friends I have told about my illness, don’t believe me at first and wonder how I’m so happy all of the time. I simply tell them, “Why wouldn’t I be happy? Life is short and I don’t want to spend it depressed at home.”
I still get sick very easily all of the time, I always will. My disease has destroyed my immune system to where I pretty much don’t have one. Knowing in the back of my head, that if I don’t take care of myself or take my medicine daily that I could die or go back to the way I was, it really changed the way I think about life.
I now want to live every day to the fullest and not worry about the small things.
In the end, my journey with lupus has made me a stronger person. I have really learned to value my life and live every day like it’s my last.
What I went through, I would never wish on anyone. After going through life-threatening experiences, your perspective on life really changes. You learn to appreciate everything you have in life.
This is my life journey, living with lupus. There is still a lot that I left out, but this covers most of it. To this day, my Lupus has been well controlled, only having flares 1-3 times a year at most. I am so thankful and happy that my health is in the condition that it is right now. I know some people have it way worse.
Remember, do not spend your life unhappy! No matter what you are going through, there is so much in life to smile about! You just have to be positive and have faith. Miracles do happen! God doesn’t give you anything in life that you can’t handle! You are much stronger than you might think!
However as you can see from my story, it is true; moms know best, especially when it comes to their kids! Doctors think they know just because they have a degree and we are coming to them, but no, that’s not the case.
More doctors need to LISTEN and UNDERSTAND what they are being told by their patients and go from there, instead of making immediate decisions from what they see. Test every possibility! It could cost someone their life!
Parents, if you know something is truly wrong with your child’s health and you hear a doctor say that they are fine, go to someone else for a second opinion just in case! I cannot thank mom enough for all she has done for me. I really would not be here today telling you my story otherwise. I love you, mom!
If you don’t know much about Lupus or want to learn more, read below!
Systemic Lupus is a chronic life-long and life-altering autoimmune disease that affects the skin, joints, kidneys, brain, and all other organs. It also causes damage and inflammation of these areas as well. It is often characterized by the overactive production of autoantibodies.
Some of the symptoms are fatigue, rashes (butterfly rashes are the most common), bleeding disorders, kidney failure, and many other serious health problems including death. Lupus has also been called “The Silent Killer” because you have no idea what it is doing or going to do to the inside of your body until it gets too severe and has already done its damage.
The symbol and color for Lupus is a purple butterfly- a beautiful symbol for a horrible disease!
Depending on the areas affected and the severity of the symptoms, lupus can be mild or even life-threatening. Since it is an autoimmune disease, your body cannot tell the difference between the invaders (viruses, bacteria, germs, etc.) and the healthy tissues. So it basically makes your body attack itself. This is why almost every part of your body is affected in some way during this disease.
This is also why I get sick so easily; because my immune system is unable to fight off the viruses, germs, and bacteria.
People with Lupus will also have flares, which are where the symptoms of your Lupus worsen and you feel very ill. I absolutely hate when I have these, they are the worst thing ever in my opinion! Thankfully, I don’t have flares that often.
By avoiding high amounts of sun exposure and taking prescribed medication regularly, you can prevent the risk of having flares (Yes I already know how my mom is going to respond to this lol). I love the beach and the sun and I am always forgetting to take my medicine daily, which of course is not good! Sun exposure can actually trigger disease activity (the way I described it when I was younger was that I was allergic to the sun). On the other hand, people with Lupus can also go into remission, which is what I mentioned earlier. During remission, your body feels better and the symptoms of your Lupus improve and are usually stable. This can happen after being treated by a doctor and taking prescribed medication regularly (which I’m terrible at remembering to do, not a good thing!).
This disease is NOT contagious, at all. Most individuals diagnosed with this disease are women. The average age of people who develop Lupus are between 20-45 years old, so as you can see, I was very young to get it (9 years old!).
No one knows exactly what causes Lupus and there isn’t a cure (hopefully one day soon!). I wish more people knew about this terrible disease and I hope my story spreads to raise awareness! A lot of people have never even heard of Lupus before and don’t know how devastating it can be till they meet someone who has it; this is also why I never wanted to tell people what I had when I was younger, I don’t want people treating me differently.
Through everything, I am a survivor! Spread the word for Lupus awareness. Tell your story. Let’s find a cure!
Visit these websites below to learn more information and details about Lupus!