THE 9TH ANNUAL FLIGHT OF THE BUTTERFLIES
Butterflies of Hope Warrior Stories
Flight of the Butterflies, Butterflies of Hope Warrior Stories 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, Butterflies of Hope Warrior Stories is dedicated to sharing those stories in May for lupus awareness month.
Flight of the Butterfly Trude Wessel Thilesen
My name is Trude Wessel Thilesen and I am from Norway. I got SLE (Systemic Lupus Erythematosus) in 1974 when I was only 11 years old. But I believe I was born with this disease since I was always sick and had problems with walking as a child/when growing up. In 1974 the doctors were not able to find the right disease I had. The only thing they said for certain is that I had a rheumatic disease for sure, but not Arthritis (RA).
In 1979, when I was 16, the disease started to move again, after it had been calm for some years. Then the doctor sent me to a hospital specialized on rheumatic diseases, this was in our Capital Oslo. After 2 months and several examinations I got finally a diagnosis which was SLE.
Then I was 16 years old and went in High school. I finished my study and started to work as an secretary. I worked many places and in many fields. But one day I decided to educate as a touring guide since I love to travel. So I moved to Mallorca for 7 weeks to be a travelling guide true Star Tour (TUI). This was fun, I learned Spanish and got to see all of the beautiful Island Mallorca. But I never became a tourist guide. Instead a bit later I moved to Oslo and started to work as an doctor secretary in Rikshospitalet, the biggest hospital in Oslo. I was working there until I decided to travel on a vacation to the U.S.A for 3 weeks, visitting my sister who worked there, as a part of my vacation. It was much fun, and I got to see beautiful places like Bryce- and Grand Canyon. Utah, LA, Las Vegas you name it. But this was also very much stress for my Lupus who did not tolerate all the moving and travelling around.
We also know that stress is the worst trigger who cause Lupus to flare/bloom. So after only 1 week back home my Lupus was in a fullblown flare. So I ended up in the ER (hospital). My hands were very affected, they has the name Jaccaud’s Arthropathy (JA), and I was very, very sick. So this ended my working period. I had to quit working and move back home. And one year I had to stay in bed because my disease was so terrible. But, slowly I did some progress to the better. And I managed to participate in a Lupus conference, the first in Norway ever, arranged by the Norwegian Rheumatism Assoziation. After this conference the participants managed to create Lupus groups in their county.
I created Agder Lupusgruppe av NRF in the Autumn of 1996. This group lasted for 22 years, ended in 2018. I was their leader the whole time. We had many interesting lectures, barbeque evenings and we did travel abroad. We even went to Iceland. And of course the deputy and I went to many interesting Lupus conferences held in the whole country. Some very educational years especially since my knowledge about Lupus was zero. I got Lupus as a child, but I was a grown woman, age 28, when I met my first Lupus woman. Unfortunately she died not so long time after we met.
Lupus has left me many scars. I have got CNS Lupus in 1993. Lung involvement, low lung capacity (56%) in 2013, and heart failure/disease in 2020. CNS Lupus has given me epilepsy and psychosis.
Lupus is a cruel disease.
Thank you for sharing my story.
Lupus In Color is excited to present Trude Wessel Thilesen’s story to the world. As a Lupus Warrior 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.
YOUR BUTTERFLY WINGS ARE FLUTTERING, YOUR CHIN IS UP, YOUR ARMS ARE EXTENDED AND YOUR CHEST IS OUT! FLY ON BUTTERFLY!
PLEASE SHARE Trude Wessel Thilesen’s FLIGHT ON YOUR SOCIAL MEDIA PAGES AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS
#LupusInColor #ButterfliesofHope #FlightoftheButterflies #Brave #Courageous #Strong #SpreadLupusAwareness #LupusWarriorStories