It took me a lot of courage, strength, and heart to write this post because this is basically opening my heart and soul about a disease that has changed my life forever. I know I will get a variety of reactions from friends and families after reading this and I pray for nothing but love and understanding during this very difficult time. Initially, I wanted to keep this to myself and to those very close to me because I know they won’t judge nor bash. But what the heck? I don’t care about the negativity in this world anymore and I’d rather talk about this disease as openly as possible because I know that in one way or another, I’d be able to open lines of communication, create awareness, and draw support from people who could understand and relate. I want to be as real, honest, and true as I share my story because I want to inspire others who are also fighting the same battle. If I can overcome this, so can you! Trust me when I say that there’s light at the end of the tunnel and that you’re not alone as you go through it. So, please bear with me. This is quite a lengthy post.
Lupus is a long-term autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissues. This disease is often called ‘the disease of 1,000 faces’ because it’s hard to detect and the symptoms vary from person to person. There are different types of lupus ranging from mild to severe. I got diagnosed with ‘mild’ Systemic Lupus Erythematosus (SLE) in January this year. As what my specialist explained, ‘mild’ lupus is non-life threatening BUT not to be taken for granted. This means that I have to double the efforts in keeping my body healthy.
A lot of you might be thinking, ‘Huh?! How come? You are one of the most health conscious persons I know!’ — the very same question I had after hearing the diagnosis from my doctor. ‘Why me?!?’ — then ugly cry right outside the doctor’s office. So, yeah, why me? My husband and I eat well and healthily, we exercise, we drink our vitamins regularly, and we get as much rest as we can.
When did it all begin? In October 2018. That was when I first started feeling mild joint pains from my arms all the way to my fingers and from my knees all the way to the soles of my feet. Back then, I thought I was just tired because of work. I didn’t pay much attention to it because the pains were bearable, and would be gone after a warm shower in the morning. They’d be back in the evening, I’ll just go to sleep, and they’ll be gone the next day. Repeat – until I got used to it. Not until that one day in October when I had my first flare up (though I think my very first flare up happened back in 2012 when we were vacationing in Mauban). I was in so much pain that I could barely walk. The next day, I went to see our family doctor and explained what I experienced. I was asked a couple of questions about the kind of work that I do and my family’s health history. Our family doctor thought the pains were related to my work and I was prescribed to take some pain killers. I didn’t take them (I am skeptical about pain killers and would rather take natural remedies). I’m stubborn like that and my husband hates it.
So, the pains didn’t really go away and they became even more painful to bear. I took the pains as they come and I would cry myself to sleep most nights because my whole body hurts and my joints were all swollen. I won’t lie but during times when I couldn’t take it anymore, I took some of the pain killers just so that I could sleep. So this went on and then came December, just before the holidays, I experienced my second flare up. My husband and I were doing our grocery shopping at that time and after paying for our groceries, I couldn’t walk nor carry any of our shopping bags. We had to take Uber home because I couldn’t walk anymore. I cried, cried, and cried because I was in so much pain and I have never felt so helpless in my entire life! Imagine, I couldn’t even tie my hair up nor lift a knife because my arms hurt. That’s the kind of pain I had to deal with every.single.day. I am just truly blessed to have a loving, caring, and understanding husband for he has always been by my side. I was in so much pain but I never felt alone and inadequate.
After my second flare up, I went back to our family doctor because I felt that this could be something serious. Our doctor said that he suspects it might be rheumatoid arthritis (RA). I thought, it could be as it runs in our family. I had to do some blood work to find out. Results came out the next day and our doctor ruled out RA. I was then referred to a specialist so that I could do another set of blood tests to determine if I have an autoimmune disease. I did my second blood test after the holidays and only found out on 17th January that I have SLE.
When my doctor broke the news to us, he was very nonchalant that I didn’t feel like I was about to die. He was very reassuring that I will get better plus the fact that mine is a ‘mild’ case. Though I really don’t know how they are able to differentiate between a mild or severe case because to me, the pains are very debilitating. We were also told that this disease is partly genetic so there’s really no escaping it. I was prescribed a medication to suppress my immune system. I have been pain-free for a month now and my lab results are A-Okay. I’d like to think that I’m on way to recovery or remission, rather.
It took me a while to get to this point where I am strong enough (literally and figuratively) to talk about this disease. I had to work extremely hard to get better- physically, mentally, emotionally, psychologically, socially, and most importantly, spiritually. If I were given a chance to re-write my life story, I don’t want this part to be re-written because as much as it feels like a curse, it’s more of a blessing as it has transformed my relationships with the people I love especially my marriage. My husband and I have come out of this stronger and it feels like we can take on anything that life gives us. I’m blessed to have the best team of doctors looking after me and I don’t fear anything for I know the Lord is with me- that this is all part of His plans for me. At this point in my life, I just had to stop guessing what will tomorrow bring and just learn how to appreciate every new day and that God is with me through this entire ordeal. By living with this mindset every day, I realized that faith is that simple. It’s not having faith in our own faith but rather, ‘I have faith that even when I can’t anymore- physically, spiritually, mentally, emotionally- the Lord can still do what He has willed to do.
Lastly, I want to take the time to thank all of you- families and friends- who have been very patient, supportive, sensitive and yet full of faith, who have reached out and constantly check and pray for us. Your love, prayers, and words of encouragement truly make a difference because most days, that’s all we really need to know. That we have friends and families who truly love and remind us that we are not alone in this journey. Please continue to pray for us as we still have a long way to go. We appreciate and love you all.
God is good.