The Story of What I Lived With Lupus, the Enemy Within

I’m going to talk about my dear friend Lupus, who is always with me, because the blog is so clunky, even causing disruption in many parts of my life.

I am reviewing my article that I shared in 2015 to support the awareness movement and include it in my own blog.  I decided to be a part of this awareness movement in order to reach more people in this period when we better understand the value of health with the corona virus and I have personally had a difficult time in terms of health for six months.

In the health category, I will try to draw attention to many diseases, especially Lupus, which is my own ailment, and to share articles on many practices that I see wrong in general health issues.

Good reading…

I wanted to join the awareness movement because of what our sister Reyhan Adalı has experienced recently. I wish him a good and healthy life from here, I wish him to recover as soon as possible.  (Excerpt from my 2015 lupus story.)

“Lupus is a difficult disease to live with, we may look healthy on the outside, but this ‘germ’ inside us is doing whatever it can to kill us. That’s why I don’t dream for tomorrow, I don’t make plans anymore. I take care to live today with quality. But believe me, your psychology runs out the most. I have been receiving support for a year or I cannot fight this disease. Of course, if we look at its spiritual dimension, thank God for the Creator, patients like us are guests and special people in his presence, thank God. God bless everyone.

I wish all of us pain-free, attack-free days where lupus sleeps.” – Reyhan Adali

A few months after the Lupus story he completed with his words, Reyhan Adalı (34) could not get rid of the disease at a young age and left his loved ones behind and migrated to eternal life.

First, let’s talk a little bit about Lupus.

Lupus (SLE) is a chronic autoimmune disease in which the body’s immune system becomes overactive and attacks normal, healthy tissue, causing inflammation throughout your body.

Immune system; It is the mechanism that protects the body against diseases. A healthy diet is strengthened by adequate intake of minerals and vitamins. It works organized with lymph nodes in the body. If a disease-causing microbe enters the body, it stimulates the lymph nodes and produces warrior cells. These cells (antibodies) fight disease-causing microbes and try to protect the body.

In lupus, microbes take over the immune system. Accordingly, the immune system starts to damage the cells instead of protecting the body. In this disease, many organs such as the brain, blood cells, liver, lungs, kidneys, heart, joints, skin, and the surrounding cells are damaged by the immune system. In this respect, it is also called multifactorial inflammatory disease. Complaints occur in many different parts of the body of lupus patients. Therefore, the diagnosis of the disease is difficult.

Quick Facts About Lupus Disease:

  • Lupus is an autoimmune disease that causes problems in the body’s immune system. It can be mild or life-threatening.
  • Lupus is not contagious.
  • The type we just call “lupus” is known as systemic lupus erythematosus or SLE.
  • More than 90% of lupus patients are women.
  • This disease is more common between the ages of 15 and 45.
  • Most doctors believe that lupus is due to genetic and environmental stimuli.
  • Risk factors include extreme stress, exposure to sun (ultraviolet) light, smoking, certain medications and antibiotics, infections, Epstein-Barr virus (in children) and exposure to certain chemicals.
  • Although there is no definitive cure for lupus, lupus and its symptoms can be controlled with medications.
  • Lupus treatment options include corticosteroids, immunosuppressive medications, and lifestyle changes.

My 2015 lupus story writing.

With symptoms for five years, symptoms for three years but for less than a year, SLE, Lupus Nephritis (SLE causes your immune system to attack your kidneys – especially the parts of your kidney that filter your blood for waste products.) and Pulmonary Embolism due to Lupus (Pulmonary embolism) (PE) is a blood clot that occurs in the lung.) I am someone who has been diagnosed. Treatment was started with 400mg x 3 cycles of pulse cortisone in the ward. Then I came to these days by using the drugs we all know. In this process, I also consumed many herbal teas and I am still trying to protect my health by consuming them. I haven’t had any infection or even the flu for a year (except for the bacteria (salmonella) transmitted in the ward and the infection that caused me to be hospitalized for seven days and for which I took antibiotics (cipro) for five months). I have applied different alternative treatments and I must say that I have seen the benefits. I do not disrupt the controls, I do not go out of what the doctor says. Right now, according to my blood tests, the disease seems to be in remission for a short time. I used to cling to life alone, now I’m climbing into life with Lupus.

I read all the package inserts of the drugs I use and I recommend you to read them too. Use your medicines accordingly, and if there are herbal and alternative methods you will take, you should definitely research and learn. Correctly adjust the dosage and regularity. Remember, too much of anything is bad. Anything irregular does not help, make sure you take your medications regularly. While sharing our life stories for the awareness movement, let’s not forget to learn about our own illness first and start the awareness movement from ourselves. I thank God for coming to this day in such a short time as a year, from the days when I could not walk, and I begin to tell my life story.

I was at the turning point in my life. As a high school senior, I rolled up my sleeves to prepare for the exam and started my studies to find myself in a good engineering department. However, the pains and sleep crises that came at that time started to give the signals that the course of my life would change. Unable to focus on lessons; I was even falling asleep. I couldn’t listen to the lecture, nor could I focus and work on my own because of the pain. It was March and it was my exam day. I had already given up hope of university and I was not even prepared properly. I entered the exam hall, sat on the bench shown to me and started to solve the questions. I had only solved five or six questions, I don’t remember the rest, when I woke up, there was about forty minutes left before the exam was over. I was only able to attend the half-hour part of the exam. My engineering dream was already over.

It continued like this until this summer period, and when I graduated from high school, I was holding back in the mornings and could hardly move. I stayed where I was sitting, as soon as I was stationary, I couldn’t move anything and it started to give me serious trouble.

I went to the doctor and explained my complaints. Then the doctor performed a few blood tests and said that I might have a rheumatic disease and said, “You may have had an infection. “The amount of inflammation (CRP) has increased in his blood,” he said. He prescribed twenty injections (Penicillin) and a pain reliever. He told me to use this medicine when I had pain and nothing else could be done, there was no cure. He is a very knowledgeable and intelligent doctor.

Afterwards, I used my right of direct transfer and settled in Balikesir for a two-year university. I continued to use some pills and this pain reliever for a year. During this period, I went to the doctor five or six times; but again i heard the same things. These doctors were very knowledgeable. I really didn’t have anything for them, so when I said my back hurts, they listened to my back and said, “Are you sure you have a backache? You have nothing.” they were saying. They were very clever, they understood immediately.

Well, that’s how this year went. In the second year, I had difficulties in moving; but this only happens in the morning or when I’m standing still. Stinging in my chest had increased; I could only take short breaths. Again, I used some drugs. During this process, the doctors did not speak clearly, but they prescribed drugs.

By the end of my second year, I was too bad to make it into finals week. My blood pressure was rising, I was feeling salty in everything I ate. During this process, I fainted several times and they gave me drugs with serum. I honestly couldn’t even make it to my finals.

I went to the doctor in Balıkesir and told the doctor that I had a fever at night and that my blood pressure often rose. He took my blood pressure and temperature and said, “How did you get this opinion?” He judged me as if I had lied, saying, “You have a cold.” He wrote a few medicines for the common cold. Now I use these drugs to at least reduce my fever. Since I vomited whatever I ate, I tried to pass my exams by drinking only water for almost two weeks, and I passed all of them except for a few exams that I had to pass.

As soon as the exams were over, I returned to Kocaeli, the city where I live. I immediately went to the hospital. My family suspected tuberculosis. However, I did not have tuberculosis, and then, as a result of tests performed by a doctor, I learned that I had a serious kidney disease and they referred me to Marmara University Research Hospital.

I was on the ward for thirty-three days at Marmara University, kidney biopsy, bone marrow biopsy, and a biopsy of the rashes on my skin were performed, and as a result, a diagnosis of lupus was made.

At that time, lymphatics, anemia and low platelet count in the lung and Class IV lupus nephritis in the kidney were present, and a year and a month passed. So much so that every week of a year passed between the hospital and the house; but now there is almost no damage left in the kidneys, there is no lymph in the lungs. Just a little clot in the lung, that’s all.

Of course, when I learned about my disease, I understood that even the bruises on my hands were a symptom of the disease. In fact, many times “I am here.” said.

No matter what, when you really hold on to life, everything is fine. Do not lose hope. Be good to yourself, don’t get discouraged by obsessing over everything, stay away from stress as much as possible. Life is really beautiful.

After writing the symptoms of the disease on me, I finish my article.

At first, I also saw bruises on my legs that occurred for a short time on the hands and disappeared spontaneously. My hands were cold as if they had come out of the deep freezer in summer and winter.

Later, it showed itself with the increase of eclipses and flu infections. When my skin saw too much sun, my fever complaints started. 

At night, I started to feel sharp stinging in the lungs, it was due to lymph.

There was frequent swelling and pain in the joints. As I moved my feet, I heard them crack and felt pain.

After a certain time, my fainting increased, and for this reason, I took drugs with serum a few times.

Nausea and burning sensation gradually increased.

Every morning when I woke up, my eyelids were swollen and whatever I ate I felt salty because of kidney involvement. As a result, an increase in blood pressure began to occur. Lupus then cleared up with feverish days and what they call a facial butterfly rash.

I wrote and completed the story in this way in 2015, let’s see what has changed in five years. 

Abdul Arif Kerim ÇALIŞKAN

Dünyayı kelimelerle ifade etmeye başladığımdan beridir harflerle hemhal biriyim. Mekatronik temelli eğitim hayatımın perspektifinden ağaçların, çiçeklerin, hayvanların mekanizmalarını çözmek üzere tefekkür etmekteyim.

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