Living Positively With Lupus

Hello WORLD!!!!

I am so excited today. Okay,” so excited” is an understatement. I am over the moon, ready to burst into a million, bazillion pieces excited today. It is my first blog post and the first step to achieving one of my dreams.

It is an outlet to express my thoughts, emotions, and also my journey of self-enlightenment.

I debated on what I should blog about first. I decided that I would start with my most life-altering moment. A defining moment that changed my life unimaginably.

Life-altering moments

That moment would be about ten years back when my doctor said three words that changed my life. You. Have. Lupus.

I was listening to the words coming from her mouth, but all I could think about at the time was what in God’s name did my illness have to do with a wolf. Yep, a silly thought to have but, that was the first thing to cross my mind.

In my defense, up until that point, I never knew of any illness called Lupus. My knowledge of that word only extended to the Latin word for a wolf.

It was a relief to have a diagnosis after years of suffering.

My husband was asking all the right questions. I, on the other hand, seemed to have developed a selective hearing disorder. All I could hear was systemic Lupus erythematosus ( SLE). Autoimmune disease, organ damage, photosensitivity, inflammation, and the cherry on top, an incurable disease.

All the medical jargon was confusing me. I needed to get a better understanding. So, I did what any self-respecting person would do. I Googled. Going back to the selective hearing part, I only concentrated on researching the terms I heard. It was an oversight on my part. That only served to cause me more anxiety. All I got were horror stories.

The Beginning

I had been sick for years. It started with my first pregnancy. What was supposed to be an exciting time turned out to be a nightmare? I miscarried my baby and two more after that. I spiraled into a very depressive state.

Summing up my downward spiral in seven words seems so trivial compared to what transpired. Being depressed was like living in a very dark corner of my mind, enshrouding myself in a bubble of misery and self-loathing. It is a place I do not want to visit again if I can help myself.

My body was trying to tell me that something was not right but, I ignored it. I just wrote it down to losing my babies. I felt as though my body and mind were fighting against each other.

A couple of years later and, in my fourth pregnancy, I was diagnosed with pre-eclampsia. My baby came early and, my body was still trying to reject him. When he went into distress and, his heart stopped, my whole world came to a screeching halt. By the grace of God and my accomplished doctors, I was able to bring my son into this world. He was revived, but not without consequences, as I would later find out.

I got very sick when he was born. I had a lot of tests done. They could not find out what was wrong with me. I felt crippled with my pain.

My baby became my sole focus. All my efforts went into raising him.

I knew that something was not right, yet I soldiered on putting it down to stress and exhaustion.

I continued this way for another four and a half years until I was pregnant with my youngest son. He also came into this world prematurely, weighing just over one kilogram. While my son was lying in neonatal, I was battling with Hb levels so low they thought I was on my way to having heart failure. I received four blood transfusions.

Days bled into weeks and then months which led to another two years passing by. I started noticing changes in my body. First came the rash on my face, which I would later find out was the butterfly or malar rash as it is known. My motor skills were being affected. My muscles in my arm would spasm and, I would often drop whatever I was holding. I was afraid to carry my baby, fearing that I might drop him down. I could not eat. I would either, have diarrhea or I would be constipated for days.

My stomach would always be bloated. Sometimes it pained so much I would end up throwing up.

I felt so tired and drained all the time. The pain underneath my feet was excruciating. At night I would feel like a thousand ants were crawling up my legs. I did not know what was wrong with me, but I was getting worried. I think my body was reaching its threshold.

Divine Intervention

Some might say that I was lucky with the next turn of events. I like to call it divine intervention. I went in to see my gynecologist for a checkup. She noticed the rash on my face and my inability to walk without flinching. She insisted I see her colleague in Rheumatology. After doing all the tests, I found myself opposite the doctor, hearing those dreadful three words. You have Lupus.

I finally had a name to put to all my suffering. The only problem was, was that I did not know anything about it.

For each of my symptoms experienced, I had to go for further tests.

The late diagnosis came not without its consequences.

By the time all my test results came back, I found out that I had:

• • severe chronic anemia.
  • My kidneys were not functioning at 100% capacity.
  • I had irritable bowel syndrome (IBS) and a spastic colon.
  • I developed mouth ulcers as well as ulcers in the lining of my stomach.
  • Restless leg syndrome (RLS)
  • Arthralgia (inflammation of the joints)
  • Cutaneous manifestations (type of skin disease)
  • Menomettoraghia (heavy and irregular uterine bleeding).

That was a lot to take in. When I first heard all of this, I felt lost. I also felt scared. It was uncharted territory I was
walking in. It took me a long time to adjust to my medications and an even longer time to come to terms with this disease.

When life gives you lemons, make lemonade!!

Years later, and it is still a struggle. I have changed so much; physically. At times it is hard for me to look at myself in the mirror. I hardly recognize the person looking back at me. It is hard for me to go out in the sun. My skin burns, and I get blisters at times. I lost a lot of muscle mass in both my legs and arms. I now have high blood pressure and, from time to time, I suffer from heart palpitations. A lot of my hair fell off because of the anemia. The meds that I take to control my Lupus have damaged my eyes. I have headaches at times where my head feels like it is hemorrhaging.

I get tired from doing little tasks. I have to stop to catch my breath many times during the day. I wake up in the mornings feeling like I spent the nights; being run over by a ten-ton truck.

Apart from all of that, I look completely normal. That is the sad part of this disease. You look healthy on the outside. People find it hard to believe that you are sick. I hate explaining to people what is wrong with me. Not because I am ashamed, but because they always say the same thing, “‘but you look so normal.”

Not many can understand how debilitating it can be. It is a silent, cruel disease. Outwardly, I appear well put together, but on the inside, there is a battle raging. Every day is a fight for me.

On most days, when I wake up in the morning, I wonder if I will have the energy to get through the day. I feel old with my stiff joints.

I will always have a fear of the future. It is an unpredictable disease. It is this realization that changed the way I looked at life. Every day is precious to me. Having an illness like this made me appreciated life. I learned never to take anything for granted. Every day that I wake up to see my children’s faces is truly a gift from God.

I could either let this disease control me or, I fight it and live through it positively. I changed the dynamics of the way I think. I want to live! Live for my family and children. I want to live to see my children grow up and accomplish all of their dreams. I want to live to see and share all their happy moments. I want to live to share all their good and bad times. Most importantly, I want to live for ME.

A Message For My Children

Over the years, I met a lot of people. People that come from all walks of life. Most of them I meet at the Lupus clinic.

People who are like me. When I say like me, I mean those that are suffering from Lupus. We connect because we understand each other and; we can relate.

It is good sometimes to talk. It alleviates some of the stress.

I realized that no matter how difficult circumstances were for me, other people had it far worse. I wish I could bleed some of my positivity into them. The fight has to come from your core, and you have to believe. Most importantly, you have to make peace with your illness.

It hurts when people close to you do not understand what you are going through. Maybe they do but choose to ignore it because you seem so put together. Having emotional support is paramount when you are in a battle fighting every day, especially from those you love and trust the most.

There is a chance that years down the line you, will find yourself facing the same battle I am facing today. Maybe it will be a different battle. No matter how many odds you have against you, believe in the power of the universe. What you put out to it, you get back. Never lose your faith in God. It is easy to lose your faith in Him when you are suffering. We all serve a purpose in this world, no matter how big or small. He will guide you, but only if you open your heart and allow him to.

He gave us free will. It is left up to us to decide in which direction we choose to go in.

Bucket List

A year ago, I decided to make a bucket list. Some were little things I never got to do. This illness robbed me of a lot of the simple things in life. Some of the other stuff was of different destinations around the world. I love to read and often find myself longing to visit the exotic places I am transported to when I read. I know that is wishful thinking on my part. I still keep it as a reminder that dreams do come true and anything is possible.

Some of my more realistic dreams I am slowly but surely ticking off.

The two that I am most proud of is:

1. To create and launch my blog

2. Study and find a career path. I always loved to draw. It was something that brought me great joy and peace. During my bout of depression, it served as therapy for me. So I found myself studying graphic designing and digital marketing. It is giving me so much joy. A real motivation. I feel like I now have a purpose.

Conclusion

Having a positive mind and attitude has helped me live positively with my illness. I know that it is not going to cure it. It allows me to live to fight another day. I will never lose hope that one day there might be a cure. Even If I don’t live to see that day, It is okay. I will enjoy the life God has gifted me. I will fight for today, my here and now, to live to see my tomorrow.

I AM A LUPUS WARRIOR!!!