As Marnie Goodfriend said
I’ve always been a thrill. At the age of 22 I wanted to experience life to the fullest, and I enjoyed snowboarding, traveling and even bungee jumping. I was healthy and had never had more than a cold until I started to experience extreme tiredness, joint pain and swelling in my legs, feet, hands and arms. Going, resting or standing was difficult, and I couldn’t grab things. After a few weeks the pain became unbearable, so I went to my doctor to get to the bottom.
The doctor hardly looked at my body and did not carry out any tests. They gave me ibuprofen and told me I should return if the pain existed. The lack of days caused by work caused financial burdens, and the pain deteriorated. The doctor I saw did not examine the basic cause of my condition. Instead, they increased my medication to severe painkillers. Two months later I had no relief and forced myself to go to work.
One day the pain became too much. I passed out and fell from my desk chair at work. In the emergency room, I had no idea that my body had closed me. They wanted to release me, but my mother and godmother demanded that they keep me overnight and carry out tests. I trembled before a 104-degree fever and had breathing problems. They finally allowed me and I was diagnosed with pericarditis (inflammation of the membrane that surrounds their heart) and pneumonia. And you have carried out an Ana test that helps to detect autoimmune diseases. The Ana test came back positively on my 23rd birthday. Based on this information and my symptoms, I was diagnosed with lupus.
I was isolated in the hospital for over a month because of high steroids, while trying to process a weakening illness that can be life -threatening. A high school friend had Lupus and I had seen it was terrible for her. I was worried that I would die. It was difficult to wrap my head about how to live a new normality, make serious changes in my life that I had never considered, and mourn all things I would never do. It was a blessing that I had been together in my company for years and had taken care of me. My friends and colleagues were a huge source of support, but my mother was and is still my rock. My first nephew was also born at the time, which gave me the strength to continue.
After I was released, I moved in with my mother and went into a state of depression. All medication, pain, visits to the doctor and physiotherapy were much to be seen. When I saw that I was experiencing intensive emotions, my rheumatologist encouraged me to see a therapist and connect me to a self -help group for Lupus warriors. Here I found my people and learned from their experiences with the disease, which completely changed my perspective. My mother became my full -time supervisor without hesitation. I know it was not easy for her, and I have something to blame and sad that she had to take care of me as an adult if it was the other way around.
I continued to work for two years, but it did not take any leaves of absence when my symptoms deteriorated. Then my high school friend died of complications from lupus, and I developed Lupus -Nephritis (kidney lupus). Without this support system, I would have believed that this would also be my fate. Instead, I invited a few friends to take part in the Lupus Foundation of America’s (LFA) Lupus Walk in San Francisco. To be in a room in which thousands of people know what they are going through and they are supported by family, friends, employees, sponsors and volunteers. It inspired me to say: “I won’t let myself be beaten by lupus”, so I became more voluntary for the organization, which helped me to transform my pain into the purpose.
Tracy at the Lupus Foundation of America’s Walk to End Lupus Now, San Francisco, October 2023
Lupus is an unpredictable, incurable disease, and at the time I was diagnosed, no medication were developed that were specially developed for treatment. I have built up a team of health service providers (HCPS), from nephrologists to nutritionists to help me to cope with its many symptoms. I also learned to become my own health lawyer and find new HCPs if others do not offer adequate care. During this time I continued to work in my full -time job, but was released and became a contract worker when I was in my early 30. Losing my company’s health insurance was a blow because I then had to pay most of my doctor bills. At the same time, I had a Lupus flare in which the disease attacks an organ or a system in your body. At this point it was my stomach intestine system, and I lost £ 100 in less than six months. I survived on rice, water and oatmeal. The fast weight loss caused muscle atrophy and extreme weakness.
During the pandemic I had another terrible flare. I had a new permanent job that I loved when I started sneaking tiredness. I couldn’t go from my desk into the bathroom and always felt cold. Sometimes I could hardly raise and go my head, sit – everything – injured him. My HCP’s office told me that I had to see my provider immediately because my weekly laboratory tests showed that I was in danger. I didn’t want to leave the work, but they also turned to my father who took me to the hospital. I had a severe anemia. As a result, I received two blood transfusions and was taken back to the hospital for over a week. As I recovered at home, I lost my ability to move and could no longer take care of myself. It was a struggle for my life: I couldn’t bathe. I needed help to get to the bathroom. I lost my ability to run and had to learn again through intensive physiotherapy. Since then I have not been able to work and have been on disability since then.
Lupus can be a very lonely illness. You don’t want people to feel sorry for you. I remember that people asked me: “Will you die? Is lupus contagious? Is it like AIDS?” So they minimize the disease because people’s words can hurt and they do not want to have a burden on their support system. Your pain may be at 10, but you will tell someone that you are six. You may need help, but don’t want to ask about it. Since Lupus is primarily an invisible disease, people will say that they don’t look sick, even if they are on fire internally. This isolation is the reason why I have committed myself to make lupus more visible by working as an ambassador and lawyer and talking to pharmaceutical companies and legislators about financing and support. One of my greatest achievements was to become the Lupus Support Group moderator of the LFA in Bay Area and create a safe space for lupus warriors that informs about lupus, exchanged information and resources and was heard for me, especially in my diagnosis.
Today I know that I can live a full life with lupus, and I want others to know that too. You can still thrive and have fun. I am thrilled with activities such as my book club, music concerts and food tours. While I had to mourn not to become a mother, my three nephews are such a light in my life that I can pour so much love into her. Spending time with my family and being aunt are the greatest joys in my life. My faith has been tested, but I pray and trust in God. It is the most important thing in my life that kept me strong during my entire Lupus trip.
This educational resource was created with the support of Glaxosmithklin, Merck and Novartis.
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