“I don’t have cancer, okay, but I want to know what I have”

R. Ibarra

Madrid

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Naomi was surprised by her rare disease walking down the street. “Suddenly appeared; I was walking down the street with my mother and I had pain from heel to ankle and I couldn’t walk. From that day my torture began».

Noemí Sánchez suffers from reflex sympathetic dystrophy, a complex disease characterized by intense pain, little studied and difficult to define, and which in most cases is caused by trauma or surgery. «In my case it is not like that; we don’t know where the origin is. He has done a lot of tests and they haven’t found anything ».

Naomi is now 28 years old and until she was 23 she led a normal life. And suddenly, everything fell apart.

Without a family history, if you remember while studying computer science, when I was nervous, for example before an exam, some symptoms appeared, but it was not pain. For example, “my feet got very hot, but I didn’t care.”

He has done many tests and they have not found anything

«The first symptom appeared in November 2015 and I was diagnosed in March of the following year». It was relatively quick, he admits, “but it’s because I had to go to private health care; in public they told me that I had nothing, and even that I was crazy. They told me that it couldn’t hurt so much if nothing was broken.

The problem tells us, is that being a neuropathic pain is not reflected; in fact, “my right foot, which is where I have pain, was healthier than my left.”

“They sent me to the psychologist,” but I wanted the pain to be taken away. “A doctor told me: ‘It’s a shame that a professional like me can’t do anything for you, I don’t know what you have, but you don’t have cancer. That day my mother, in the office, smiled. ‘Daughter, you do not have cancer, he told me and I was angry. I don’t have cancer, okay, but I want to know what it is that I have. I’m not going to cure myself of this because we don’t name it. What do I have? Is it better, worse than cancer?

Finally the diagnosis came: “By having the diagnosis you can now face it.”

I’m not going to get cured of this because we don’t name it. What do I have? Is it better, worse than cancer?

Once Naomi was diagnosed, they proposed a therapy with a spinal neurostimulator, [los neuroestimuladores bloquean mediante impulsos eléctricos las sensaciones dolorosas que llegan al cerebro aliviando el dolor]; but it was very expensive.

Back in public health, after two years in a wheelchair for two years due to the disease, he can now walk thanks to a spinal neurostimulator. «I continue with medication, with more pills; the neurostimulator allows me to walk, before I couldn’t, although there are days that I can’t either ».

Remember those years as very hard; I wouldn’t wish it on my worst enemy. It was bad to stay in a wheelchair, but worse the neurostimulator. They had me to comb my hair. But it is what I have had to live; I make the best use of the days that I am better than I can ».

«I had a boyfriend and when I told him that I was going to stay in a wheelchair, he answered, so what? The disease has united us much more, before we argued over bullshit, now not.

Now I wanted a diagnosis, how to improve my quality of life, because I know that I cannot be cured. And above all reduce pain and improve my quality of life

Naomi rearranged his priorities: «To be focused on studies, work, etc. Now I wanted a diagnosis, how to improve my quality of life, because I know that I cannot be cured. And above all to reduce pain and improve my quality of life ».

Also, I had to quit my IT job. “My independence was lost.”

Although he is working now, but not in the same place, he congratulates himself. «They told me it was invalid because I was in a wheelchair!».

He is clear that “we have to fight to get the diagnosis and to improve the quality of life, because we have to continue living and doing it in the best possible way.”

And a demand, more than a plea. I demand investigation. I would swing it out the window! I know that a cure will not come for me, but maybe for someone like me. And improve the quality of life. They cannot cure us, but they can take care of us ».

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