As Nicole Audrey Spector said
One day in 2023 I went for a walk. Just a simple walk. No biggia. When I came home, I cough. I was afraid that I had covid. My terror was mostly rooted in the fact that I had scleroderma. I was diagnosed in 2001 at the age of 19. With chronic autoimmune disease such as scleroderma, a high risk is. I knew that Covid could kill me.
That night I slept outside in the warm summer air. Together with cough, I had difficulty breathing and felt suffocated as suffocated, but the fresh, gentle air helped me better.
The next day my symptoms were just as bad. My husband was worried that I worsened and had to take a ventilator. So I went to the hospital.
I tested negatively on Covid, but was immediately approved and subjected a lung function test, an echocardiogram and blood tests. All of this showed that I had just had two heart attacks. The heart attacks, my health service providers (HCPS), were caused by chronic obstructive lung diseases (COPD). I knew that I had an interstitial lung disease – inflammation and scars of lung tissue – caused by the scleroderma. I had lived with it for about a year. But COPD was a completely new diagnosis.
What had happened, the HCPS said that the COPD – caused by the scleroderma – had triggered a scleroderma torch, which then triggered my heart arteries. In addition, my neck closed. I could hardly swallow. Not even a pill.
I was in the hospital for six weeks. Stents were inserted into my heart to open arteries. I underwent to expand my esophagus. I also received breathing treatments and medication to treat the symptoms of COPD.
One of the best things I did in the hospital was my good friend, every day, another scleroderma. I called them when the HCPs came in to make their rounds. I put her on the speaker so that she could hear everything. I am not particularly confident in my ability to understand medical jargon, especially if I am the subject of all conversations. This dear friend listened to what my HCPs said, and then as soon as they left, they open everything for me in a way that did not feel confusing. She was my personal patient lawyer, and I recommend that someone feels overwhelmed as she navigated an illness, someone like her on board.
My husband and my child, 12 back then, were so concerned that I would die. I was also afraid. I had already gone through so much with scleroderma, including several amputations. Many people who have suffered as much damage from this disease as I don’t live much longer.
But honestly, when I went through this COPD crisis, I was almost more stressed than fear. My life is incredibly busy. I am a mother, I lead a company, I work as a mentor and I immersed in the advocacy of chronic diseases. I often travel and always juggle a million different things. I had to move away from my many projects to deal with all of this, and really made myself back and made me feel that I would let everyone down.
When I came home from the hospital, I didn’t really know what my future would look like or how life would change after living with COPD, which has no healing like scleroderma. But I got the shoot pretty quickly. (Fortunately, my symptoms with breathing treatments and medication are checked.) I started to better understand the disease and how to live with it best. Now I am a passionate advocate of people who live with COPD and do an enormous amount of work in the COPD community.
Today I’m as busy as always, but my illnesses put a strain on my body. It looks like I will not be able to travel almost as much as before, if at all. I am not enthusiastic about it, but I’m not angry either. My legal work makes me part of something that is as much larger than myself. I have the feeling that it is what I should do. I saw so many friends die – some in much better physical condition than me. I don’t take a moment of my time here as a matter of course.
Yes, I am sick – like everyone else who lives with COPD. But being sick does not mean that you have to be sad. And it doesn’t mean you have to be alone. Absolutely not. A big problem that I see in the COPD community are people who do not have it. I see too many people disappear in the illness. I hope that more of us will open our minds and eyes to see that there are entire organizations that help people with COPD. So many resources are just a Google search away.
We are all stronger than we believe, and that may apply to women. We can get through pretty much everything when we accept it. If you live with COPD – or a chronic illness – I greet you not to see it as a death sentence, but as a new trip. And here are so many of us to go this trip with you.
This educational resource was created in collaboration with the COPD Foundation and with the support of Glaxosmithkline, Regeneron and Sanofi.
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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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