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Understanding my new life

I'm glad to post again and, today, share some personal experience that has changed my life.

Three years ago, I was diagnosed with myelofibrosis (MF), a rare bone marrow and blood disease. It was hard initially; I felt a huge shock and fear. I didn't know what MF was or how it would affect my life. But through the following months, I learned more about this condition and how to live with it. Today I want to tell you what I have learned and how I have adapted to this new reality.

It´s a new day, it´s a new life…

The first lesson I have learned (and continue to do so) was to listen to my body, mind and needs since being diagnosed. I studied a lot to understand the nature of MF and how it affects my body.

For example, I have an enlarged spleen from the disease, a fact that gives me pangs from time to time. They are annoying and painful but usually last a few seconds. I learned that no matter what I'm doing, I must stop until the pain stops.

I also discovered how important it is to care for yourself physically and mentally. Before the diagnosis, I did not do much sport, and after it, I started moving with gentle exercises like yoga and Pilates.

For the mind, I started going to a psychologist and meditating. All this I do for me. Listen, guys, this is helpful to anyone who is going through the same situation.

Finally, I spotted the value of not focusing 100% on the disease. It is essential to make room and find balance. I mean, have fun, go on a trip, meet friends or family...

These discoveries allow me to understand my illness better when my body needs to rest from exhaustion and to find ways to live a "normal" life despite having this diagnosis.

Listen to your body!

Since my last post, I have been thinking about my history and want to tell you about a curious moment in my life.

Before 2020, when I was diagnosed, I had only had an analysis done (I was 13 years old). At that moment, I already had abnormal values in my blood test, such as elevated platelets. I also remember having pangs around the spleen in childhood and adolescence and saying, "It gave me a pang in my heart" (which I now know was probably the spleen). My doctor told me that it must be from nerves.

In addition, I always failed in physical education, running or resistance tests. I was fatigued and could not; again, the "heart" pains were present. This discovery made me understand that it is possible that I had symptoms of the disease since I was 13 years old or much earlier, but that it was not relevant because I was a little girl or because the signs were not very visible.

So, if you have some symptoms that no one knows what you have, keep looking for them, and follow your gut feelings.

Now that I know I have a rare disease, that doesn't make me feel any less normal or happy. I have learned to accept it and live with it. Remember, that's a different journey for each person.

I have found support in my family, friends and others who also have MF. I have discovered new ways to take care of myself and enjoy life. And I have decided to share my story with you to give you encouragement and hope if you are going through something similar. The MF is not the end of the world but the beginning of a new stage.

Take care of yourself; a big hug!

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