English
In connection with Marnie Goodfriend
I always liked exciting things. When I was 22 years old, I wanted to enjoy life to the fullest and I loved the tables on snow, travel and even the Puentismo. It was healthy and I had never given myself anything more serious than a cold until I started to experience extreme tiredness, joint pain and swelling on my legs, feet, hands and arms. Going, resting or standing was difficult and could no longer hold objects. After a few weeks the pain became unbearable, so I went to my doctor’s office to know what was happening.
The doctor hardly checked my body and applied for a test. He gave me ibuprofen and told me I should return if he continued to hurt. The loss of working days caused me financial difficulties and the pain only deteriorated. The doctor with whom I had the consultation did not examine what I caused my condition. Instead, more powerful analgesics have prescribed me. Two months later I had no relief and forced myself to go to work despite the pain.
One day the pain became unbearable. I passed out and fell from a chair at work. In the emergency room, I didn’t even imagine that my body collapsed. They wanted to register, but my mother and grandmother demanded that they took me to the hospital until the next day and tests. He had shaking frost, 104 degrees fever and difficulties in breathing. After all, they admitted and diagnosed me pericarditis (inflammation of the membrane around the heart) and pneumonia. You also carried out an Ana test that serves to recognize autoimmune diseases. On my 23rd birthday I learned that the Ana test had positive results. Depending on this information and my symptoms, Lupus diagnosed me.
They kept me in the hospital with high steroid doses for more than a month and tried to process the idea of a weakness that could be fatal. A girlfriend of the school had lupus and saw how terrible she went to her. I was worried. It was difficult to assimilate that I had to adapt to a new standard of normality that I had to make changes in my life that I had never considered, and everything I couldn’t. It was a blessing to have worked in the same company for years because they gave me permission to make myself absent. My friends and colleagues supported me a lot, but my mother was and is still my main pillar. At that time, my first nephew was born to give me strength to go forward.
After being released, I moved to my mother’s house and entered a state of depression. All medications, pain, medical consultations and physiotherapies were an enormous burden that should assimilate. When I saw that I was experiencing intensive emotions, my rheumatologist recommended that you have advice with a therapist and gave me the contact information of a self -help group for patients with lupus. Here I found my people and learned from their experiences with the illness, which completely changed my perspective. My mother started taking full time without hesitation. I know that it was not easy for them and I feel a little fault and sadness that I have to take care of myself even in my adulthood if I should take care of them.
I continued to work for two years, but asked for permits to be missing when my symptoms deteriorated. At that time my school friend died of complications of her lupus and I developed Lupus -Nephritis (kidney lupus). Without my support system, I would have thought that the same would happen to me. Instead, invite some friends to take part in Lupus against the Lupus Foundation of America (LFA) in San Francisco. It was motivating to be in one place where thousands of people know what they experience and the support of family, friends, colleagues, sponsors and volunteers. He inspired me to say: “I won’t let Lupus come to me.”
Tracy en la Walk to End Lupus Now de Lupus Foundation of America, San Francisco, Octubre de 2023
Lupus is an unpredictable and incurable disease, and when they diagnosed me, no medication was developed to treat them. I managed to have access to a team of medical supply suppliers (HCP), to which nephrologists, nutritionists and therapists belonged to control the symptoms. I also learned to defend my rights and find new medical supply suppliers if others do not really visit me. During this time I continued to work full -time, but they fired me and an independent worker a few years after my 30th birthday. Losing the health insurance of my work was very influenced by it because it implied that I had to pay most of my medical accounts. At the same time, I had a lupus outbreak when the disease attacks an organ or a system of your body. On this occasion it was my stomach intestine system and lost 100 pounds in less than six months. I only survived rice, water and oats. The sudden decrease in the weight caused muscle atrophy and extreme weakness.
I had another terrible outbreak during the pandemic. I had a new permanent job that I loved when I started to feel tired. I couldn’t go from my desk into the bathroom and was always cold. Sometimes I could hardly lift and go my head, sit or something else gave me a headache. A person from the office of my medical provider told me that I had to take part in a consultation immediately because my weekly laboratory tests showed that I was in danger. I didn’t want to assume work, but they also communicated with my father, who quickly took me to the hospital. He had a severe anemia. As a result, I received two blood transfusions and got back to the hospital for more than a week. While I recovered in my house, I lost my ability to move and could no longer be careful. I fought to survive: I couldn’t bathe without help. I needed help to go to the bathroom. I lost my ability to run and I had to learn to do it again with intensive physiotherapy. Since then I have not been able to work and have been deactivated since then.
Lupus can be a very lonely illness. You don’t want people to feel sorry for you. I remember that you asked me: “Will you die? Is lupus contagious? Is it like AIDS?” So they try to minimize the disease because people can hurt and they do not want to have a burden on their support system. You can feel unbearable pain, but you tell people that pain is not very serious. You may need help to go, but you don’t want to ask about it. Since Lupus is mainly an invisible disease, people say that they don’t see each other sick, even if they feel that they burn inside. This isolation is the reason why I have undertaken to make Lupus more visible as an ambassador, to raise awareness and to speak to pharmaceutical companies and legislators about financing and support. One of my most important achievements was to become coordinator of the Lupus patients -Support -Group of the San Francisco de LFA Bay Area and create a safe space for patients with lupus to get information from lupus, exchange information and resources, as this has changed my life, especially if I have just received my diagnosis.
At the moment I know that I can and want to enjoy an integral life with lupus that other people know it too. You can still bloom and enjoy life. I am passionate about activities such as my reading club, music concerts and gastronomic tours. Although it hurt, I couldn’t be a mother, my nephews are a very bright light in my life and I can give them a lot of love. Spending time with my family and being your aunt are the greatest joys of my life. This was proof of my faith, but I still pray and trust in God. It is the most important thing in my life and gave me strength with lupus during my life.
This educational resource was created with the support of Glaxosmithklin, Merck and Novartis.
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Our real women, real stories are the authentic experiences of women in real life. The views, opinions and experiences that are shared in these stories are not supported by healthwomen and do not necessarily reflect the official politics or position of healthwomen.
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