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My name is Niki at age 29 from Budapest, Hungary. I have cystic fibrosis. I have a lot of problems in my life and I am searching solution now.
The most significant factor that I have cystic fibrosis, a heavy disease with many bad effects. It is an autosomal genetic disorder that affects many organs, but I mostly have a manifestation in my lungs. I always have mucus in my lungs and I cough day and night (so I am a bad sleeper and because of it I am frequent so tired). The mucus can result often lung infections and I always have some bacterium. I must do sport to keep a good condition but it is not so easy when I am not well. The most important things are that I must keep to be fit, get good air, take my medicine constantly (!), care about myself, clean and drain my lungs more times each day (inhalation, gym, spit, etc.) and a good factor is eating good and so much. Yeah, really I have to eat 3000-4000 calorie per day. Or rather I should eat that big quantity. And we are at the first big problem: I don’t have enough money to eat. :( I used to eat just a little part of that dose, because it is very hard to buy enough food. But I am always hungry. :( I was very ill and I lost weight to 35 kg at age 27. I don’t want to be so ill again. Although I try to eat big and powerful doses, I can’t do it every day. I buy some food but I can’t pay for my bills or any medicines, not to mention other things. Last months I couldn’t pay any insurance, then I couldn’t pay for my medicines so I couldn’t take those for months. Besides that my condition has become wrong.
Another problem is I can’t do anything when I don’t have energy and I have cough many times. So I can’t work all day and it is a big problem. Workplaces don’t want to employ me with a hard illness. Btw, I have an undergraduate degree in ethnography and a graduate degree in cultural anthropology. Hungary doesn’t need social scientists, although should need to have. So I can’t find a job. I wanted to research, but I don’t have money to do it.
My plan is studying more too (maybe abroad), but I don’t have any free semester at the university, although I need to study to progress. Unfortunately, I have student loan from earlier times that I have to pay back. It causes problems to me.
My relatives couldn’t help me, because I am coming from a relatively poor family from country. They are living in a little village. Our house is old and has a bad state. Sometimes it is moldy, cold till summer and insects came in. Mold is very bad for my lungs. The furniture and things are old, the bathroom and kitchen are run-down with mold (actually the whole house is run-down). We have wood-heating that makes bad air with fume, soot and dust. Also these are bad for my lungs. Although I am staying in Budapest in a flat (because of my studies), I would like to have a healthy and clean home where I can go composedly and I won’t be ill. My sister is staying with me in Budapest, but unfortunately she has some health problems too so it is not easy to find a job. My brother (who is not healthy) would like to attend university. It depends on money too.
If I would have money, I maybe would open a business. Because I like for example craft (DIY, art, etc.) and it won’t depend on my health status. I should not worry about getting a job or going to workplace or a cure in the hospital. But it is a very expensive to start to have a business.
I can’t see any opportunity. So I need some help to my future (to buy food, medicine and new machine, or maybe have a “cure” in the mountains; to have a newer healthy home; to get in some studies; to help my family; to have some new opportunities; to pay back my student loan; etc.). I apologize here but I really need you to progress and get a better quality of living. :(
Thank you so much in advance!
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