‘I must be crazy.’ The façade was crumbling. I had a rash on my face, feet, and hands. I tried to smile and stay strong.’: Lupus warrior shares journey, ‘I am STRONG and radiant’

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“‘Life isn’t about waiting for the storm to pass, it’s about learning how to dance in the rain.’ I felt delirious and exhausted for quite some time now. Every step I took was one too much. I was out of breath more and more. Well, it has been a stressful time. There is a lot on my plate right now. Anyway, just drown yourself in work… but the façade was already crumbling for a while, everything was just too much. I had gone through a separation, was looking for a flat, and was working endlessly. But I still tried to smile and stay strong.

Courtesy of Natascha Scholtka

For the last four years, until the day I collapsed, I suffered from an endless number of inflammations of my bladder and stomach. It was so bad, I had stay in hospital every time. I have had endless gastroscopies where nothing ever came out. After a few weeks, I always felt better. Following my vacation in New Zealand in 2015, I suddenly had rashes on my face, feet, and hands. I went to several dermatologists, an alternative practitioner, tried endless salves… the rash on my feet at some point was so painful I could not fit in my usual shoes anymore and I had trouble walking. Strangely enough at some point you get used to all those symptoms, and just find a way to work around them.

Courtesy of Natascha Scholtka

In 2017, I struggled with extreme insomnia, and step by step I got completely worn out. My rash was still on my face, hands, and feet. I continued to have extreme stomach cramps regularly, but the cause was simply not found. Despite all that, you still want to function and just keep going and going. Often I thought I was crazy, because I was so exhausted and no one could tell me why. In 2018, I was completely drained. I cancelled out my social life and only went to work and slept. I had to eat quite a lot to maintain my weight. Although I could hardly do any exercise, my metabolism went crazy. I participated in an online course about ‘positivity,’ which aligned perfectly with my mentality of sugarcoating all my symptoms.

Courtesy of Natascha Scholtka

At the start of 2019, I was advised to go to a hospital because of some bad blood markers and a pressure on my heart. I had to stay there a few days, and after the inflammation was gone, I was released and flew to the long-expected vacation to Africa. I returned from my holiday under the African sun and was even more worn out. Still, I forced myself to go to work. I had to call in sick before, I can’t stay home again. After a few agonizing days, I realized I couldn’t be working like this and went to the doctor. He assumed a virus infection and signed me off as sick. Within days, I developed a fever up to 104ºF. I could not get out of bed and slept all day. Thank God my mother could evaluate the situation properly, grabbed me, and drove me to the hospital.

Courtesy of Natascha Scholtka

From there on out everything felt surreal. I got Paracetamol and even more pain medicine. I still remember I felt like I could go home again after that. It felt so great when the pain faded. Contrary to going home, I ended up on the intensive care unit, and after I was emergency relocated with a helicopter to a bigger hospital in Wiesbaden. I didn’t realize how bad the situation was. I was very excited to fly with a helicopter and peeked into the world flying by underneath me all the time, I was transported lying down.

Courtesy of Natascha Scholtka

Arriving in Wiesbaden, I was transferred to a normal unit for two weeks. The bulk of antibiotics didn’t work. My condition worsened from day to day. Liquid was drawn out of my lungs. After that, my whole back was sore and every bone in my body was hurt. There were a lot of doctors who said my heart was too big. I was afraid, I developed a fever and didn’t recognize anything going on around me anymore. I threw up from the pain medication and every minute felt like an hour. Then, there was a blonde woman at my bed. It was the professor of the rheumatic unit, who talked to me in a very soothing voice. She took my blood and transferred me to her unit. I heard something about water in my heart, that my kidney wasn’t working the way it supposed to be, and there was still water in my lungs. I thought to myself, ‘Who are they talking about? All that can’t be true.’

Courtesy of Natascha Scholtka

Systemic lupus erythematosus, what the hell. Well, they gave me a huge amount of cortisol, and soon I had to start taking Immunsuppressiva. I was too weak to walk or even stand up. There were a lot of medical tests, and they told me my heart was a normal size after all. Again, I struggled with fever and my lung got punctured and liquid got drown out. ‘The strongest people are not those who show strength in front of us, but those who win battles we know nothing about.’ After four weeks I got released as a physical and emotional wreck. I cried for months because my nervous system was constantly stressed. I couldn’t sleep because I always thought I wouldn’t wake up again.

Courtesy of Natascha Scholtka

I needed help walking, showering, and getting through the day. Phone calls were too exhausting for me. I had an infinite amount of bad days where I couldn’t stand up and my weakness made me feel mad. I was ashamed because the cortisol made my face look bloated. After nine months, I went to a private holistic clinic for four weeks and this brought the first improvements since coming out of the hospital. I learned a lot of information and was seen as a complete human being, with all its fears and experiences. They helped me to get my nervous system back on track, and I sometimes managed to take a stroll 30 minutes at once. After my time there, unfortunately, there were again a lot of setbacks.

Courtesy of Natascha Scholtka

‘Pressure comes from within and so must be mastered from within.’ My kidney and blood markers played ping-pong all the time, and my energy, too. At some point, I took the pressure out of everything and started to accept the situation and stopped fighting against it. I tried to take it step by step, day by day. ‘You carry so much love in your heart, give some to yourself.’ My body changed a lot but I still manage to love it, because its been through so much and stands by me all the time. Slowly, I’m able to love myself, even though I still have a lot of weak days. I made myself the top priority and work a lot on my mental health. I am good to myself and look out for me.

Courtesy of Natascha Scholtka

I am proud of my optimism and the person I’ve become. What I really did learn was to take responsibility for myself, and that you’re allowed to second guess decisions or recommendation made by your doctors. It’s about your body and your soul. ‘Self-care is how you take your power back.’ I changed my diet, I started very lightly with yoga. I did therapy and tried a lot of other things, which could help me in a way or another. I don’t know how my journey will go on and how much time my body needs to fully recover, but I know I’m strong enough and radiant to walk my path with joy and power, because I survived, and nothing else really matters.

Courtesy of Natascha Scholtka

I wish that someday I’ll be able to enjoy some more adventures with my favorite people. The memories of my travels and my fulfilling moments of my past kept me afloat and filled my heart with gratitude and love. In spite of all these struggles, life is wonderful, and I learned to really appreciate it and I will not waste it with complaining or self-pity. ‘The best time to be grateful is always.’ I’m grateful for all the people supporting me for so long. My family, my friends, some special workmates, my boss, and all the people who helped me on my way with so much love. Thank you that I can tell my story here and spread a little awareness to this special, treacherous disease.

Courtesy of Natascha Scholtka

If I may give one piece of advice to healthy people, if you stress out, are unhappy everyday, only work for the weekend or a holiday…please, please change. You have everything you need. We really do have just one life…and it will be lived with magic, love, fulfillment, happiness…by yourself. My brother, Frederic, was writing this poem for me, it makes me cry how much he can feel my pain and give me extra hope to stay strong and go on.

WEAR YOUR SCARS LIKE WINGS 

‘a kid asks his mom

when will this pain pass

she blows gently on the scratch

and says it will not last

yet it leaves a mark

 

a teen asks his dad

why her heart still clings

he tells her

one day it will sing

yet it leaves a sting

 

you shout into the universe in disbelief and cry

the only question why

you think it won’t pass by

 

yet one day your tears are dry

there is a bright blue sky

with all those scars and a little smile

you’ll spread your wings and fly’

—Frederic Scholtka”

Courtesy of Natascha Scholtka

This story was submitted to Love What Matters by Natascha Scholtka of Bayern, Mömlingen, Germany. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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