Lupus? What is Lupus?

What is Lupus?

Lupus is an auto immune disease, a complex and poorly understood condition that affects many parts of the body. A disease that occurs when your body’s immune system attacks your own tissues and organs.

Lots of people can have the condition for a long time without knowing before they get a sudden flare-up.

The seriousness of SLE can range from mild to life-threatening, there are some that affect the skin and SLE that affects body organs and joints

Sunlight, stress, smoking, certain medicine and viruses may trigger symptoms in people who are most likely to get lupus due to their genes, it is more common in women during childbearing years.

The symptoms include

Extreme tiredness, rashes (especially on the face, wrist and hands) and joint pain and swelling.

Lupus AKA the butterfly disease, colour purple represents it…Lupus awareness month= May

My Lupus journey.

Lupus? what is that?

It all started one cold morning and I was experiencing very stiff hands and painful joints, something that has been happening a couple of weeks now and I have been brushing it off, however on that day my sister woke up and said “please don’t go to work today, this could be serious, please go see a doctor” and added “look at me I ignored all the signed and was diagnosed with Scleroderma (similar to Lupus) when the damage was already done.”

I immediately went to the doctor, doctor asked me a few questions how I was feeling, when it started and about my family history. He said with confidence that “its definitely not what your sister has but could be something similar, which would be very odd”. Both diseases affect 1 in 5million…..

Doctor went ahead took some blood from me and I had to see a dermatologist to do a biopsy, waited a few days to get my results doctor called me in, I went…

“you have lupus.” The doctor said, “Lupus? What is lupus?” I asked.

Scars you beautiful.

Despite all unnecessary questions I knew I would get, I ALWAYS held my baby with pride and joy, I was grateful to God for her, I immediately began researching about albinism, educating myself to ensure that she still gets the best out of life.

I read very hurtful stories from people living with albinism, most are isolated from society because society is narrow minded and most are illiterate. Most have a very difficult childhood especially those raised in poorer communities like established by model Thando Hopa in her story.

I read a story about a young boy who was kidnapped I immediately started crying and asked myself in 2016 people still believed that people with albinism have super powers? I had to do something I thought to myself. I began having multiple fears and endless questions. Where will we live? Will she be safe? What if she is bullied at school? What if she doesn’t enjoy her childhood? And then it was back to endless crying, because like every mother all we want is the best for our kids and for them to be happy. My fears turned into depression I even landed in hospital nobody knew what was happening all doctors said was there might be something bothering me terribly and it was because of my fear of bringing my daughter into such a cold world full of horrible things happening, it honestly broke my heart, I couldn’t bear the thought of my daughter being unhappy.

But because God lives, it seems as though He did everything that happened in my life deliberately, as I was walking in town I came across about 8 beautiful ladies with albinism (I’ve never met so many at once) most of them had a ring on their ring finger, for some reason that made me happy and a bit relieved. Thereafter I came across a guy by the name Mpho Tjope who had just released a book “Life with albinism filled with pearls” and interesting and educational read by the way, I added him as a friend it was delightful to see how proud and content he is with having albinism he really takes pride in being “legoa” as he normally calls himself. Thereafter I was watching an educational program called SHIFT I saw a beautiful lady by the name Palesa Mosiea she touched a little on her experience of growing up with albinism, she was very confident and advised one kid tried bullying her she reprimanded her from doing so. Slowly but surely I was believing that my daughter would be ok, yes she might face a few challenges cause unfortunately illiterate people will always be around us, but we were going to be ok, I was determined to make sure of it.

 

“SCARS TO YOU BEAUTIFUL”_ Alessia Cara

_there’s a hope that waiting for you in the dark, you should know you’re beautiful just the way you are, and you don’t have to change a thing the world could change its heart_

Albino? NO, she is my child

“Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes. Lack of skin pigmentation makes for more susceptibility to sunburn and skin cancers. Albinism occurs in all racial and ethnic groups throughout the world. Most children with albinism are born to parents who have normal hair and eye color for their ethnic backgrounds.”

Just some insight on what albinism is; it is not some sort of disability or disease. Albinism is not a curse as believed in some African families, and people with albinism don’t have any super powers to make miracles happen as believed by some traditional doctors who kill people with albinism for their body parts.

 

So there she was MY baby, I quickly glanced at her with a smile, I have never seen anyone more perfect and anyone deserving of having me as her mother, she immediately numbed all the pain I was feeling and I forgot of all the drama I went through to get her delivered. I then went into a deep sleep for hours…

When I woke up we were both taken to a different ward full of mothers and their new born, the excitement I had was out of this world, the first thing I asked the nurse was if I could breastfeed , it was amazing finally holding NYELETI in my arms, God knows how much I appreciated my gift.

Then the questions started “why is your baby so light?” “is her father white?” my response was always simple, I smiled and said “something only God knows J”

In my head I was thinking the question shouldn’t even be why is she so light and so forth the question should be, “WHY ARE YOU SO DARK?” some questions aren’t necessary, who has answers to them?

 

Later during the day the nurse came to check on us and asked the same annoying question everyone has been asking “why is she so light? Let me check her file, the doctor says she is 100%” I looked at her and said, can you not see that she has albinism? Yes she has pale skin ONLY reason the doctor said she’s 100%. She stared at her and said I was wrong. Later my family came to see our long awaited bundle everyone so excited however I received thee most heartbreaking comment from one of them after I told them she might have albinism, I was told we don’t have such people in our family…

I realized that there is still a lot that I will have to do to ensure that my baby has a happy stressless future the day people realize that she has albinism; I even came up with an answer that I would be giving people should I be asked if my baby is an “albino” as society phrases it, which is wrong by the way the correct manner to say it is: a personal living with albinism NOT albino!

My answer is “Albino? NO, she is my child”

 

“Just the way you are” _ Bruno Mars

_When I see your face, there’s not a thing that I would change, cause you’re amazing, just the way you are_

Snow white LIVES

I am sure you are wondering why the nurse said “nanku umlungu wakho” meaning here is your white baby, when I saw her for those few seconds she looked absolutely amazing I fell in love even more but at the same time I immediately saw that she would be classified as “different” in the eyes of people. She had very light skin close to pale with brown hair, perfect in my eyes however.

 

As I was lying on the bed waiting for the doctors to close my operation it hit me, for months I fell in love with the name Nyeleti (Star) after seeing a beautiful girl named NYELETI on television, see initially my baby would be named Culolethu Lihle I had already discussed it with my partner 2years prior my pregnancy and we were both satisfied.

 

I heard the name Nyeleti on a popular TV show and it seemed as though I was hearing it for the first time I absolutely loved the name and something told me that’s the name I should give my daughter for months it played on my mind I was however sceptical of telling my partner as he would disapprove of it all I knew was I was naming her Nyeleti no matter what, my star and there she was as bright as a star God was talking to me in so many different ways and I was constantly putting the puzzles together and somehow I was enjoying it.

 

The reason why the nurse said “nanku umlungu wakho”, the reason why I say Nyeleti is the perfect name for her, the reason why I say she would be considered “different” by society is because when I saw her I saw that she has #Albinism… yes it was just an assumption at the time, however I knew I was correct

 

This next song is very special, it puts in words how I feel about my God given gift.

 

“ANGEL OF MINE”_ Monica

_When I first saw you I already knew, there was something inside of you, something I thought that I would never find, Angel of mine,

Meeting my heaven sent gift

After all the drama that has been happening I was eventually left alone, still in extreme pain and still annoying the nurse who was assigned to look after me with all my screaming and calling her a thousand times to help with something she had absolute no power over. My baby’s pulse would decrease and seem as though it would stop at any time and I was witnessing all as it happens praying very hard, then I would witness her fighting and regaining her normal pulse.

 

The way she was fighting for her life… I knew right there that I would be giving birth to a fighter someone strong and someone who wouldn’t give up easily in life even though I haven’t met her yet something told me I definitely would eventually, something told me she would fight until the end no matter what, I was already proud of my unborn baby.

 

All the pain and fighting began at 9pm 06.02.2016 it was 12am 07.02.06 I was still in pain and my baby was still fighting for her precious life. It was only around 4:30am when the doctor eventually came with a smile and said, finally we will be able to assist you and try saving your baby, they quickly rushed me to an operating theatre as I was advised I would be having a C-section if I could I would have screamed “FINALLY HALLELUJAH” at that point. When we got there I still had to wait as they prepared, eventually I went in, they explained the whole procedure to me and advised everything they were going to do, I must be honest I didn’t care all I wanted was for to save my baby and to finally see her.

 

I was not put to sleep as they operated the pain was numbed however. There was an awkward silence in the room, everyone was just doing what they had to do, the doctor then told me I would feel a bit of irritation as her foot was stuck (I’m not surprised she’s very tall). They fought to take her foot out and fought to take the placenta out. Then I heard her crying J right there I knew everything was ok, SHE MADE IT. Her cry was very loud yet relieving she took a while to stop I set there with a smile on my face all that was left was for me to see my little fighter.

 

The nurse brought her close to me and said “nanku umlungu wakho” with a smile on her smile, there she was as bright as a star, I couldn’t hide my smile I smiled with tears in my eyes, and I thought to myself she really deserved the name “Nyeleti” which means star.

 

“SOME KIND OF MIRACLE” _ Puff Johnson

_Then you came to me, Just when I given up, you gave me love, my world was tumbling down, you turned it around, baby, you’re some kind of miracle_

A moment of terror

There I was in high care, hearing people screaming, some screaming because they had given birth to a still born child, others because of the extent of the pain they were in, it was an absolute nightmare well to me that is as the workers there carried on as though all was ok, but I guess they learned to grow thick skins working there.

 

I was finally told what was happening, my baby’s heart was slowly failing, my contractions were coming fast and abnormal she couldn’t handle it and the cervical dilation was very slow. They placed the heart monitor on me and I was able to witness it myself, I saw her heartbeat slowing failing each time a strong contraction came I saw her fighting for her life and fighting to regain her normal beat. Each time I noted her heartbeat wanting to stop I would scream and call the nurses she would come tell me to relax, she told me never to push when I would feel the urge to do so when a contraction came as that would definitely kill my baby. It was hard but I tried my best to do as I was told.

 

I called my partner to advise him of what was happening and he said he would rush to the hospital, I called my sister she woke up and told my parents apparently they began panicking, a doctor came to advise me that they receive a call from my mom and they were trying their best to assist me however they had a lot of patients so I had to wait it wasn’t a matter of them just ignoring me.

 

A few hours later my partner advised that he was outside however he wasn’t allowed to come in. In an instant I became famous as all the nurses were coming to see if I was ok and to advise me that my partner is outside trying to force his way to me to make sure the baby and I were fine, they all wanted to see who this “special” person was who created havoc in just a few hours, despite all the pain I was feeling at that point they were all able to make me laugh with the jokes they had. I realized more how blessed I was, being pregnant with a baby of someone who wanted her just as much as I wanted her, I wondered what I had done right to deserve such.

 

“SPEAK”_ Myron Butler

_ I shall have, what I decree, YES I believe it belongs to me, so, I’m going to speak into the atmosphere”

Emergency exit

Everything seemed to be going good, the nurses were all helpful and did all the necessary checks, my excitement levels were increasing until one nurse showed signs of uncertainty, she placed a heartbeat monitor on me and looked very puzzled, she took the spreadsheet and showed it to her fellow colleagues, I realized that something was definitely wrong.

 

She came back rushing to me, I asked her if everything was ok, she was reluctant to answer I could see it in her face, she placed the heartbeat monitor once again and I guess it confirmed whatever she was suspecting, I asked her again is everything ok? I started panicking myself and she then answered, she said she was noticing some abnormality in the heartbeat of my baby, she told me to relax they would be moving me to a different ward; I think she saw the fear in my eyes.

 

I immediately started praying, I prayed God save my baby, I prayed God save me, and I prayed it wasn’t anything serious. The nurse rushed out, I wondered where she was going, she came back with a stretcher, asked me to quickly pack my things once that was done I was carried onto the bed, they tied me up with a few belts. At that point my mind just blacked out, I was beyond confused and stressed at the same time, all I remember was entering a ward with “HIGH CARE” written on the door.

 

HIGH CARE? My heart sank… That’s the place I was warned about earlier I thought to myself, they said if you end up there the chances of your baby making it are very low and at times both mother and child lose their lives in there. I looked around and it seemed true, everyone in there was in a very critical condition, I immediately started crying.

Leap of faith

06.01.2016 it was my first time sleeping in hospital, the night was cold, lonely and stressful but somehow I kept believing all would go well. The morning came and I was asked to take my belongings as I was being moved I got excited thinking the time has come only to be sent to a room full of pregnant women. We were all impatiently waiting to meet our heaven sent gifts, with most of us stressed.

 

As we were all waiting we would discover that some would successfully deliver their babies and others unfortunately don’t we all wondered what fate had for us we all had mixed emotions scared at the same time very happy.

 

Each morning we had to sing worship songs, I guess that was merely to bring positive energy and to celebrate God and what He has done for all of us, we were grateful for the gift He bestowed upon us, for Him trusting us with something so precious.

 

The day progressed, the stress decreased as we were all beginning to know each other better, discussing all the plans we had for our unborn kids and how we were all excited to bring them into this world.

 

Then FINALLY the time came, I was told I would be given medicine to induce labor, they selected 5 of us we were very excited yet scared we stood there carefully taking all instructions given to us, finally we were definitely going to meet our bundles of joy we all whispered to each other in excitement.

 

 

“Modimo” _Soweto Gospel Choir

_ tsohle di yentswe ke wena, modimo re boka wena_

Overdue and frustrated

Then the countdown to my due date began, I was getting more and more excited however I was also getting impatient, I couldn’t wait to meet my bundle of joy, I couldn’t wait to hold my baby in my arms, if there is one thing that will teach you patience in life its being pregnant, 9 months is truly a long wait.

 

Unlike most pregnant mothers I didn’t imagine what my baby would look like, I honestly didn’t care my main priority was her health; I just wanted a healthy, living baby despite the physical appearance. I couldn’t wait to see this human I’ve been bonding with for so long and make motherhood official and wonderful. I just wanted her in my hands.

 

Then I was a day overdue I started panicking, I googled every method I could use to induce labor and tried them i.e. nipple stimulation, exercising and eating lots of pineapple however nothing seemed to help I went to my local clinic to get help, the nurse laughed and told me to relax my baby was still fine and that they would still be fine even if I get 2weeks overdue, I advised her I don’t want to wait that long and should book me in hospital she refused, I was 3days overdue then. I went back home stressed thinking of my next move. “what if I wait too long, what if I lose my bundle” I kept questioning myself, frustrated, “I can’t carry such a wonderful blessing and not experience the full blessings, I can’t lose another one” my head kept telling me.

 

The following day I managed to convince my sister to take me to hospital I couldn’t wait any longer for the date that was given to me, I didn’t want to take any chances with my babies life. I didn’t mention this to anyone as I knew they would stop me, however this was MY baby we were talking about and I was willing to throw all tantrums to save her life.

 

05.02.2016 there I was in hospital HEAVILY PREGNANT demanding the doctors to help me with the delivery of my baby, I nagged them so much they promised to help me that night, I ensured that they made all the necessary checks to ensure everything was still fine, they assured me that it was and advised I’ll be placed on bed rest until there was space to deliver my baby. Once again, I had to wait… how long was I going to wait to hold my bundle?

 

“Wait on the Lord” Joyous Celebration

_wait on the Lord, He knows what you need, He will give it to you just in time_