Butterfly Flight Trude Wessel Thilesen


Flight of the Butterflies is a lupus awareness campaign sharing stories of the brave lupus warriors. Many don’t understand lupus until they hear the walk of a warrior. Flight of the Butterflies is dedicated to sharing those stories in May for lupus awareness month.

Flight of the Butterfly Trude Wessel Thilesen

This year, specifically the 2nd of May I have had Lupus for 45 years.. And I would like to take part in your campaign Stories of Hope, releasing in May (World Lupus month).

My name is Trude Wessel Thilesen and I live south in Norway in a city named Arendal, and I am invisible sick. An early Spring day in 1974 my life suddenly changed to be worse. I came home from school and was terribly ill. My mother had only one advice and that was to seek a doctor immediately. The doctor concluded very fast that I was seriously ill and I got straight into the children’s section at my hospital (I was only 11 years old). There I got true several examinations and tests. I was there for seven weeks and I specifically remember that I got to celebrate our National Day (Costume Day) the 17th of May there. After the examinations was finished they still could not figure out what was wrong with me. But they knew for sure it was a rheumatic disease I have gotten, but not Rheumatoid Arthritis (RA). So they released me with the medicine Cortisone (Prednisone) in the “luggage”. After treated this way I got much better.

Yes, so much better it went for me that the doctors believed I had gotten well again. But, this was to good to be true, so when I had turned 16 years old this strange disease decided to bloom again with a flare. This time the doctors sent me to a rheumatic hospital in Oslo. They was specialists in rheumatic diseases. I was there for 2 months. Also there I went through many examinations and tests. The last day, the release day, I got to speak with a rheumatologist and this he was now about to tell me should change my whole life. I had got the rheumatic disease Lupus, Systemic Lupus Erythematosus (SLE). This was for me very unknown. What was really this? I finished high school, and which I recently had started that Autumn. So I was on my way into work possibilities. I become a secretary. My first work was at the local police office in my city (Arendal). And my last work was in the biggest hospital in our Capital Oslo.

Yes, I was so versatile that I took part in a travelling (guide) school in Spain. So in 1991 I decided to visit my sister in the States who was there for work. I traveled to New York round trip, alone. I was there for 3 weeks. And together with my sister and our friend we traveled to Washington, New York, Utah, Bryce and Grand Canyon, LA, Hollywood and Las Vegas at the same trip. This was an amazing vacation. But how it went with my disease Lupus, really? The answer is – terrible. I came home and after a week I got so sick again that the way to the hospital was the only solution. At that hospital (Oslo)l I was a regular patient. But my normal rheumatologist was on vacation so another took the management. I did know him from I was his patient when he worked in Arendal hospital. At the hospital it only went one way with me – down. The rheumatologist stated that I gotten a kind of a infection in my left hand. It looked like I have gotten a insect bites of a kind. To ensure he was right he consulted a surgeon. But this doctor absolutely did not agree with my doctor.

This was Lupus related he said . But despite of this statement my rheumatologist was sure he had the right answer. And he decided to give me antibiotics intravenous 3 times a day for the so-called infection. This was not for any help since the cause of my big health problem was my disease – Lupus (Wolf in Latin). So then my body reacted with activating my brain Lupus (CNS Lupus) and I completely stopped sleeping and started acting strange. This rheumatologist did not take any consideration into the fact that my Lupus was very active. I had fever and terrible pain. And besides that my hands was very painful since I had gotten Jaccaud’s Arthtopathy, a strange part of Lupus only a very few gets. So after a while, when I was not getting any better, he decided to put me into a psychiatric section, against my will, in another hospital. I was unaccountable he said.

So after my mother had tanken the long trip from Arendal to visit her sick and oldest daughter he made it up to her to follow me (by taxi) to this hospital, unfamiliar to me. I stayed there for one week, and it was horrible. My mother saw I was suffering. So after one week she took me out on her responsibility. So finally we could travel back home to Arendal. And I got the right treatment for my Lupus by my rheumatologist there, he did know me and my kind of Lupus.

CNS Lupus (Neuropsychiatric Lupus) is a serious condition which must be treated with Steroids (Cortisone). And one time it happened that they took it away from me. But, my mother told my rheumatologist who then told them to give it back to me, very dangerous to quit suddenly after long term use.

Finally I got better and I could start working again. This time I got a new job at children’s section at SMR (Senter for Mental Retardation). This was a very interesting work I had for 2 Professors. But suddenly I got sick again. I got a sore throat. And once again I had to go to the hospital. This time my body had got enough sickness. So I had only the solution to travel back home to Arendal. After one year back home I decided to apply for disability, in the age before I was getting 30.

In 1992 I finally get to know what kind of disease I had. Since this year the first conference against Lupus took part, and I was one of them who was delighted to come. And some years later, in 1996, I started a Lupus group in my county (Agder Lupusgruppe av NRF), a part of the Norwegian Rheumatism Association.

Thank you for your time.

Best Regards
Trude Wessel Thilesen

Lupus In Color is excited to present Trude Wessel Thilesen’s story to the world. As a Lupus Warrior he/she is actively promoting lupus awareness and wearing the armor of strength in doing so.

Lupus In Color Salutes you Trude Wessel Thilesen . YOU ARE BRAVE, COURAGEOUS, AMAZING and STRONG TO SHARE YOUR STORY.



#LupusInColor #ButterfliesofHope #FlightoftheButterflies #Brave #Courageous #Strong #SpreadLupusAwareness

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