As Nicole Audrey Spector said
I grew up in a house plagued by chronic diseases. My mother had lupus and I was her caregiver from the age of 10. My grandmother had a severe rheumatoid arthritis (I now believe that she was tied to never diagnosed lupus). I also supplied her for her because my mother was often too sick to move me away, and Medicare only delivered so much help – until they basically didn’t deliver anything.
I cooked the whole thing and prepared meals. I knew what my mother was supposed to feed with kidney damage and what I should feed my grandmother who lived with heart damage. I organized and deleted your medication. I learned to keep the door unlocked. In this way, if a doctor had to come in, he would not damage the house by breaking a window or hurling down the door.
I grew up quickly. I had to, like everyone’s contact. I started at 14 and sat in books to make myself bigger. At 16 I had my first child – one of three.
It was really hard to be forced to become an adult while he is still a child, but it helped me to form a strong, self -confident lawyer not only for the health of my relatives, but also for my health.
Lupus can run in families, so I wanted to be proactive if I had it. From the 20s, I asked for every physical examination a full rheumatic blood field – exactly as a precaution. My doctors rejected my repeated inquiries. I was even told: “You are fine. Nothing manifested.”
To be released by doctors became a worrying trend. When I came with shingles, I was told that it was allergies and allergy medication that helped for a few weeks – until my lymph nodes swelled. Then I had spasms and received X -rays that did not provide any evidence of what happened in me. My fingers became stained. They bent and pressed themselves. I felt like I had the flu all the time.
My health problems stayed for five years. It was like a game with a whack-a-mole. One would appear, followed by another and another.
Finally, when I was 30 years old – after five years of fought mystery symptoms – an orthopedic doctor combined the points. “You sound like my sister,” he said. “She has lupus.” This doctor took me seriously. It was a relief that someone confirmed me and did not feel that I was crazy because I suspected that I had lupus.
It occurred in such a way that I had only been tested for lupus by my basic supplier (PCP), but I had not yet achieved the results. The Orthopäler called the PCP who told him that the results had come in, and in fact I had lupus. Then and there I was referred to a rheumatologist.
After visiting the doctor and the unveiling that I had lupus, I sat in my car and cried. I mainly cried out of relief. After all, I had answers. And I felt strengthened. “Try it with me,” I said in my head and spoke in me with this terrible illness. “I’ll beat that.”
I worked hard with my rheumatologist and subjected a few different types of treatments to treat the symptoms of lupus – a chronic illness that has no healing. In the best case, these treatments, including pills and infusions, help a symptom, but often create different.
2024
Throughout the years and many attempts to get better, I always remained optimistic – but my health deteriorated. Finally, endometriosis was diagnosed with an illness that can be associated with lupus. I also had a stroke (Lupus can take a high risk for strokes). For me, chronic kidney disease was diagnosed. I was subjected to stem cell therapy due to kidney failure and finally had a kidney transplant.
Today I am in Lupus remission, which is of course great, but I have no exaggeration – 15 other diseases that are active. My body was severely depressed by all of these serious conditions. My lung capacity is 42%.
During this challenging journey to become good, I learned so much about lupus that I went into the work of health promotion. I am in 10 different boards and work passionately with people with lupus to help them with the illness, their rights and what is available to them. I also want to deliver inspiration by sharing my own story and endurance.
I am happy with my life and keep the attitude “Not me. Try it with me.” I will never go under in this battle as a victim of lupus. I will always appear and defend myself. And although there are things that I can’t do because of my health, I can still do so much. I can travel. And I drive out my heart and visit all the places where my grandmother and mother, both now away, never saw.
I wish that none of us would have to go through the many nightmares that Lupus creates. But I am also firmly convinced that without my Lupus trip I would not be like who I am today. I want others who live with lupus, not hide from this disease, so terrible, but to see them as an opportunity to become the person for whom they should be.
“You have been a caterpillar,” I say. “Now you will be a butterfly. But it’s up to you to become one. So how will you do that?”
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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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