- Wojciech, are you ashamed that I have psoriasis and that my walking is lopsided - I ask my 11-year-old son. - Mom, never! - she shouts - You are the most beautiful woman in the world. My husband follows me with warm eyes and nods: It's true, honey. She's right, Ladybug … Since the wedding day, she talks to me like that. You know I'm wondering if he still remembers my name.

And my name is Anna. I am 29 years old and I live in the village of Prężyna, in the Biała commune in the Opole region. You have already met Tomasz's husband and Wojciech's son. Before these two gentlemen appeared in my life, however, other guests came to see him. And although I didn't invite them, I had to get used to them that they would stay with me forever. But, one by one …

Black, why aren't you running …?

I was born he althy and that's how I hid until primary school. I was bursting with energy and I was discharging its excess in sports. I loved playing ping-pong and running long distances. Dark-haired, with a swarthy complexion - I quickly gained the nickname "Black". - You're running, Black, you're running! - even my PE teacher shouted after me standing at the edge of the treadmill.

Dizziness and fainting "caught up" to me in junior high school. Doctors said it was normal because I'm growing up. I had to pass out twice so that they finally took me to the children's hospital in Nysa, did an EKG and connected me to a Holter. But the results of the research, which did not indicate any anomalies, only confirmed their belief that they were right. The orthopedic surgeon was more concerned about me when I told him that my arm and leg muscles were weakening, especially in the left one, whose foot fell strangely downwards. He stated that I had Achilles tendonitis in my left leg, put it in a cast, ordered injections into the knee joint, and wrote out a PE waiver. Just for the sake of safety, because I'm still after every effort - go to the ground! I had to forget about treadmill records.

Such a spot on the back of the head …

She appeared suddenly, was growing and itching. The dermatologist suspected that it could be a harbinger of psoriasis during the first consultation. However, he recommended a light treatment - mild ointments and drinking injections based on natural ingredients. Did not help. Six months later, I had spots all over my head and elbows. A dermatologist, already different, decided Fr.hospitalization. And so I ended up in the hospital in Kędzierzyn Koźle. As a 15-year-old I was the youngest in the department. Other patients treated me like a daughter. They advised how to swallow large pills and how to wash your hair that was greasy from all those ointments and lotions, and how to arrange them so that the stains were not visible. Because I did not let my hair, long to the waist, cut myself.

There was no way for my "hospital moms" to deal with two problems. My feet were getting weaker so much that I couldn't keep even light flip-flops on them when I was going to shower or to expose myself to lamps. It was a standing tube like in some solariums. You had to enter it and close your eyes so as not to irritate them with the strong rays. But as soon as I closed my eyes, I immediately lost my balance. So the doctors remembered my fainting and it turned out that I have some neurological disorders - perhaps a damaged labyrinth. Perhaps …

Chinese woman in the Caribbean

A year later, I "landed" in the hospital again. Then it finally turned out what was "blooming" on my skin. I heard: plaque psoriasis and I did not know what it was about. It was 2006. The Internet was just developing, I had no access to it. There were no people with psoriasis around me. There was no one to scare me, but also no one to advise me. I accepted the diagnosis calmly: disease like disease. However, I was irritated by these constant treatments: oiling the skin, lamps, and careful application of cygnoline so that it burns away psoriasis, not he althy tissue. After returning, I continued these treatments - because I had to - but irregularly and reluctantly.

Well, I was very ashamed of this psoriasis … In schools - first in junior high and then in high school, no one knew I had it. I tied my hair in a bun and pinned them up with colorful pin'up girl scarves. I hid the stains on my hands under my long sleeves. Fortunately, my legs were not "showered", so I could wear shorts. And because in the hospital I was treated mainly during summer or winter holidays and I was returning from it tanned to a beautiful bronze, people gossiped that my parents were sending me to the Caribbean. Immediately after the hospital, the psoriasis disappeared. But some stress, infection, cold were enough to make them return immediately, reddening, cracking.

I rarely wore shoes other than sneakers then, and those with high heels are only 2 times in my life. My feet became more and more floppy, unstable, arched and fell down. Like a Chinese woman with her feet tied. I walked bent forward, "snapping" my feet like a stork and stumbling over them. The tests - computed tomography and EEG - again showed nothing. - You have to wear orthopedic shoes with specially contoured insoles and everything will be finewill equalize, said the doctor. To diagnose me for polyneuropathy, yet none of them have thought …

Pregnant ladybug

I was 17 years old when I met my future husband. He was renovating his parents' house. It caught my eye immediately. One, the second joint trip to the disco. Third, fourth date. I didn't tell him about psoriasis until it was known that we would be together - if we could do it forever. I was afraid of his reaction, so I explained that I envy girls who can wear bathing suits, because it is on my skin that "such stains pop up" from time to time. Tomasz did not answer then … And the next day he said: It does not matter, Ladybug.

Today I know that Tomasz's grandmother explained to him what psoriasis is and what it is associated with. And for me… ? Well, you know how important it is to be sure that someone loves us unconditionally - whether we have cellulite, wrinkles, spots or not. And if we already have them, we don't have to hide them. In 2008, I got pregnant. Yes, yes, you guessed it right - I was 18 years old. My parents then complained that it was too early. Today, when I may not give them a second grandchild, they say it was fate, it was meant to be.

The fetus was developing normally. It was worse with me. From the beginning of my pregnancy, my muscles were so weak that I couldn't walk. In addition, first, as a result of pregnancy poisoning, I lost to 45 kg, and then I gained 36 kg! Because of these weak muscles, I didn't move at all, but I ate what I felt in my arm. My feet were so tangled that I fell down twice when I was 8 months pregnant. Fortunately, Wojciech was born he althy - 10 points on the Apgar scale.

Stains attack

Because you know, there are two theories. According to one, psoriasis regresses during pregnancy, and according to the other, this is when it showers the most. Well, she showered me not long before the termination, and it was full blown. First it took up the legs, then the torso, back, head and then the most important part of the body for me - the breasts. The changes were so painful that I cried when I was feeding Wojciech. I have long argued that I would not take steroids so that the little one with my milk would not absorb them. However, when psoriasis attacked the nipples so much that they started to burst and there was no question of feeding, I buckled. I left my son and husband in the care of my mother and went to the hospital myself.

These were the longest 2 weeks of my life. Psoriatic lesions did not heal. Cygnolina burned the skin under my breasts so bad that I couldn't wear a bra. My body ached, but my soul hurt more, because I missed my family. This was my penultimate psoriasis hospital stay. The last time I was there withfor this reason, in 2012. I have been dealing with psoriasis on my own since then. I have my own methods: a lot of aloe (fresh and gel), oak bark and castor oil. And greasing, greasing, greasing … And everything would be fine, if not for my stork feet.

The girl invents her disease

My life passed on ordinary things. Renovating the house and moving to it, and then running my own farm and taking care of our son without the help of his grandmother and mother. Psoriasis was not attacking, so I felt safe. Too safe … But I was losing more and more control of my tangled legs.

I was more and more afraid to walk on uneven surfaces, water, snow, ice. I was driving the car with more and more difficulty, because I could not press the clutch properly with my left foot. More and more often I drove Wojciech in prams which gave me a stable support, and less and less often I took my son in my arms. I consoled myself mentally that my tangled legs are not a threat, that I must have it from my dad, because he also walks a little differently. And even when the orthopedic surgeon yelled at me that I was inventing my illnesses instead of wearing proper orthopedic insoles, I stopped talking to doctors about my stork gait. Today I know that I should be more assertive …

Don't worry, there are such good wheelchairs now …

I fell down the stairs several times. I broke the worst three years ago. Tomasz at work, Wojciech at school. With a sore back and buttocks, I struggled to get down the steps. My husband was afraid of leaving me alone. If I don't want to kill myself in my own house. He ordered a search for a specialist.

I don't remember the first neurologist well. I just asked if my drooping feet and dizziness could have something to do with psoriasis. He growled at me that one cannot connect one to the other and that he knows it best because he is a doctor. Besides, I shouldn't worry that I can't walk, because now they make very comfortable wheelchairs, so I'll be able to move around better than on my feet.

The second neurologist's approach is full competence. He directed me to tests: vitamin deficiencies, Lyme disease, because ticks had bitten into me several times in my life, and finally an electroneurographic examination (ENG). The latter showed that I had damaged tibial nerves and advanced tetraplegia. Looking for the cause of it, they took my cerebrospinal fluid, because they suspected multiple sclerosis, but nothing pointed to MS.

Waiting for the respirator

Final diagnosis: my second disease is genetically determined axonal demilization polyneuropathy.Progressive, with no chance of recovery … And even rehabilitation. I called many physiotherapists. Many did not even call back. Nobody wanted to undertake a complicated rehabilitation. Because my muscles, which are still going to weaken, cannot be overloaded, but must be in motion. There was one physiotherapist who tried to help me. I had only 10 treatments: magnetic field and laser for the lumbar spine, which bothers me the most. Then no other therapeutic proposition.

How is it now? I move thanks to orthoses. They stabilize my feet and leg muscles. It is thanks to them that I do not stumble and land on the ground after every step. I wear them all day. I take it off at night and when I'm home. My hand muscles are also weakening. I still have a grasping reflex, but I won't open the water bottle myself.

I'm afraid. I am afraid of this time when I will become helpless, passive, dependent on others. I am afraid of the time when the respirator will breathe for me and my heart will start to beat slower and slower. I am afraid that one day my body will bend, like the rush of a plant in the wind. Because we have muscles everywhere. How fast will it happen? I do not know. The prognosis varies. I can change to a wheelchair in a year. I can also do it only when I am 60 years old.

I put on skis and embrace my life

I will never wear high heels again. When I ask my husband, is he sorry that I am so little feminine in these sneakers, I can see a reproach in his eyes: How can you ask that, Honey? I love you all in all shoes. I am asking my teenager's son: Wojciech, and you are not ashamed that when I walk so lopsidedly and have spots on my body? He moves and screams: Come on, mom! After all, you are the most beautiful woman in the world. Dad, a professional driver, calls me every day, even from the longest route, to talk to his "apple in the eye" for a while. Mom calmly starts the day only when she hears from me on the phone: I'm already up, mom, and I understand everything. And my brother, seeing me put on the braces, jokes that for me the ski season lasts all year round.

My loved ones approach my illnesses naturally. They do not feel sorry for me, and only help me when it is necessary. I feel safe with their simple loving acceptance. Strangers react worse… I tried shoes in a shoe store once. I took off the orthosis, with difficulty, awkwardly put my foot in the shoe I was trying on. The first - did not fit. The second - did not fit. Neither is the third one. I have not measured the fourth one. - If you stretch all my shoes for me, nobody will buy them for me later - the saleswoman was outraged. Humiliated and shocked, I apologized to her and left …

I'm 29 years old and alivewith two incurable diseases. I take care of the home and family. Does not work. On my certificate of moderate disability the following recommendation was written: work only in protected conditions. I will not find one in our small poviat. But I can't imagine myself idle. I help my husband in running a business. I keep all the documentation. Tomasz set up a backyard apiary and I would like to do it somehow there too. For example to sell honey, or to run a website. I won't do anything with the hives or the bees. But as you can see, to live in such a way as to wait only for death, I'm not going to!

Magdalena Gajda A specialist in obesity disease and obesity discrimination of people with diseases. President of the OD-WAGA Foundation of People with Obesity, Social Ombudsman for the Rights of People with Obesity in Poland and a representative of Poland in the European Coalition for People Living with Obesity. By profession - a journalist specializing in he alth issues, as well as a PR, social communication, storytelling and CSR specialist. Privately - obesity since childhood, after bariatric surgery in 2010. Starting weight - 136 kg, current weight - 78 kg.

Category:

Other