I’ve been sick for a long time

Today I’m going to talk about myself and how my immune system rebels against my joints. Because I am one of the 5% of people who have an autoimmune disease. Out of the 100 categories, I have ankylosing spondylitis, which feels as bad as it sounds.

Who hasn’t had a bit of hip pain, early stages of sciatica?ibuprofen, stretch, rest, and palant. I remember that feeling when I was in my early twenties. Because of the necessary English, I went to live in England with the young man. During the reign of Queen Elizabeth II, sciatica returned. But this time he didn’t leave. The pain lasted for over a month and was so severe that it was difficult for me to get out of bed or take a shower. That would be the first time I discovered something unknown.

The adventure of finding a diagnosis

It wasn’t until I returned to Spain that I started getting medical consultations to clarify my situation – in the UK I had only been given a lot of prescriptions. painkiller-. With the first doctor, I ended up crying and getting the spinal tap appointment under stress. I don’t really know why, I didn’t end up getting pierced. I now deduce that they are corticosteroids, hormones used to treat pain due to their anti-inflammatory and immunosuppressive abilities.

The second doctor gave the diagnosis and was first relieved, then turned to stone. I already had an explanation for my severe pain. The problem is I have a chronic disease that eats away at my joints. “If I’m bad today, I’ll be worse tomorrow,” he thought. He was 24 years old, which was normal for the first appearance of such a disease. Now I am 29 years old.

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It’s often not easy to figure out the name of what’s happening to you. Susana Cabañero, 49, began suffering from severe congestion, chronic sinusitis and headaches a decade ago. “The otolaryngologist discovered I had nasal polyps. They were growing. They treated me with antibiotics and high doses of corticosteroids, but they didn’t go away,” he explained. They had to perform two surgeries on her to clear out these white structures that were growing in her nasal passages.

Doctors eventually diagnosed him with chronic sinusitis and nasal polyposis. It is a type II inflammatory disease. It is not autoimmune, although it shares pathological inflammation. “The most common symptom is loss of smell. Some people live like this for a long time without knowing they have polyposis,” Cabaniero said. His pathology also began to include severe asthma, a type II inflammatory disease, recurrent lung infections, and an allergy to nonsteroidal anti-inflammatory drugs, to which ibuprofen belongs. This group is called the ASA triad or Widal syndrome.

An otolaryngologist discovered he had nasal polyps. They are growing. “They treated me with antibiotics and high doses of corticosteroids, but they didn’t go away.”

Suzanne CavaneroPatients with nasal polyposis and severe asthma

I learned his story during an informal conversation. Experiencing something firsthand opens up a new, previously opaque reality. Since I found out I have spondylitis, I haven’t stopped meeting people with similar conditions. Although a similar clinic, every clinic is different.

Diego Sánchez, 29, also began experiencing sciatica, specifically a sprained neck. I describe it like they’re playing a harp on the nerves in your legs. It hurts like hell and grabs your limbs.

In his case, questions remained about ankylosing spondylitis: He had a family history and was positive for the HLA-B27 marker, a protein on the surface of white blood cells that is associated with many conditions including spondylitis. This marker is associated with several autoimmune diseases and can be detected by testing. Blood analysis. But the diagnosis was mixed, as MRIs and X-rays didn’t show any damage to the joints.

“There’s uncertainty about diagnosis and some other things, like not knowing what’s good for you. Rest is good for you, but so is exercise. In fact, they strongly recommend moving. But when you do, when you It also hurts when you’re standing still. The same thing happens with treatments: They give you something, but it doesn’t work or doesn’t completely take away your pain,” he said.

Expensive, life-changing treatment

Without such a diagnosis, Sanchez was not treated with biological immunosuppressants, which can be life-changing for people with diseases in which the immune system and inflammation work against us.

When I had my second major outbreak, they came to me because that’s how these types of illnesses go, often with waves of symptoms coming in for no apparent reason. Because of my experience as a science journalist, I know how to read scientific articles, and I’m very informed when I go to my rheumatologist appointment. I know that this treatment can provide good control of the condition and can put the condition on hold, but it does not work in all cases. This is what the doctor confirmed to me: “If we don’t try it, we won’t know if it will work this way for you.” With some fear and hope, I started getting my legs pricked every 15 days. Since then, almost two years ago, I have not reached the level of pain I have suffered in the past.

I never thought I would be able to stop thinking about this disease. Now the days are passing by and thanks to biologic immunosuppressants, I don’t even remember. “

Pedro Vidalpsoriasis patients

Unlike traditional synthetic compound immunosuppressants, biologics are proteins or antibodies specifically designed to interact with inflammation-related molecules, such as cytokines. This makes them very expensive drugs because they need to be “made” by cells. I go to the hospital every two months to collect medicines. According to the hospital’s pharmacy service, a box of two shots costs about 700 euros. Thanks to public health, I do not have to pay this fee. Beyond that, there were the professionals involved in my care and medical exams. And vaccines: People who are immunosuppressed are at risk when they contract certain diseases.

Mayte, who did not want to give her last name, has chosen not to start the treatment just yet. She is 61 years old and has been suffering from lupus, an autoimmune disease that affects various organs and systems including the skin, heart, kidneys and joints, for two years. I mean, it hurts. The latter is a common symptom of rheumatoid arthritis, which he also suffers from. “It feels like the flu during an outbreak. It’s a general malaise that can make you feel very tired,” he explains of lupus.

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Regarding biological treatments, he said: “They lower your defenses so much, and that gives me a lot of respect. (…) I still don’t think I’m capable of it.” The first few months were very painful because I It feels like I’ve been injected with cancer…

At the other end of the spectrum is 37-year-old Pedro Vidal, who is desperate for treatment. He has suffered for ten years from psoriasis, an autoimmune disease that causes redness and scaly skin. And it was itchy, and itchy. “When I moved from Alicante to Madrid, I debuted with psoriasis. Of course, the dry climate and the stress of going there to start my PhD also had something to do with it. I started to notice something on my skin that wouldn’t go away. spots. I wasn’t sick much at the time, but two months later I had an outbreak. 80 percent of my body was covered,” he explained.

He received creams and oral corticosteroids, conventional immunosuppressants, and ultraviolet therapy until biologic therapy was approved. “I never thought I would be able to stop thinking about this disease. Now the days are passing by and I don’t even remember,” he said.

Healthy stick

Tears welled up in my eyes when I heard these words: I remember this almost every day, although usually it doesn’t move me that much. To be clear, psychological hypocrisy is something that everyone in this article has experienced.

“My worst moments on an emotional level had to do with the most painful moments. It took away a lot of my energy and left me very depressed depressed

. I think they interact: You’re in a bad mood, so you think about it more,” Diego Sanchez said.

My worst moments on an emotional level have to do with my most painful moments. I think they influence each other: you’re in a bad mood, so you think about it more. “

Diego SanchezPeople suspected of having ankylosing spondylitis

Vidal, for his part, added that his condition was very apparent. “Obviously you go to the beach or pool and people look at you. It’s a skin condition and they may associate it with something infectious or even cause disgust. Seeing yourself in the mirror is also very impactful ,” he explained.

Cabanello even took antidepressants. “Put yourself into your important projects. “I dream a lot, but I have to stop dreaming because I’m sick and there are a lot of things I can’t do. ” (…) “Your whole life is conditioned. It doesn’t seem like it, but it’s an experience that people don’t see and it’s hard to explain. That’s why I think patient associations are important,” he said. She is a member of the recently formed Spanish Association of Patients with Nasal Polyposis (AEPONA), whose goal is to promote the pathology and provide resources for patients.

It helped me get to know the people in this article and many others. A chance to vent and feel understood by others going through similar experiences. The diagnosis wasn’t all that stifling.

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But taste, the color. “The doctor suggested that I find a group of people with the same problem and find some connections. I disagreed with that because listening to complaints during meetings was not particularly helpful to me,” says Mate. Everyone does their best to struggle with the thoughts and feelings associated with the diagnosis, but usually eventually succumbs to resignation. After all, pathology is indelible.

Our body, the dictator

This means maximum contact with the body. This imposes itself on you and reminds you that you are an organism with needs that you cannot ignore because it will complain a lot. Then self-care takes center stage, and with it comes learning and frustration.

Diego Sanchez found a sanctuary of stress relief in climbing after going through the physical and psychological agony of stopping handball training because the pain “started to get worse”. He credits the climbing wall with giving him back some quality of life by improving his posture and flexibility.

Mette, for her part, pays close attention to her diet, and she doesn’t drink or take stimulants. Also try to get enough sleep. “I live a quiet life that doesn’t get out of control and I try to avoid people who are full of problems and obsessed with them,” he said.

There are also tips for better managing our self-challenged bodies. In my case, I became so disgusted with needles that every time I had to have my blood drawn or get a vaccine, he would give me a dessert in the form of a loaf of bread. Cabanello chose to take his medication on Sunday night, so if he was “a little down,” he knew he would sleep through it.

The other person’s appearance

What role do others play in all this? Mayte asks those around her to be patient and understanding. “When you say, ‘This hurts,’ they will believe you.” However, others often experience unexpected improvements.

“It gives the impression that other people will consider what happens to you, but I think we still overestimate it. I have never felt rejected because of my psoriasis in my relationships. People think more than what actually happens. It’s worse,” Pedro Vidal concluded.