Diabetes mellitus is one of the most common chronic diseases. Official data say that in Poland we currently have 3 million diabetics, but as many as one million people have not yet been diagnosed. There are more and more patients and, according to forecasts, in 2030 they will constitute as much as 10 percent. population. Joanna Organiściak has been in this group for nine years. Her life with diabetes requires a lot of rigor and… it is expensive. However, as he claims, it teaches her to be open and resourceful, challenges her and mobilizes her to act at the same time.
- Joanna didn’t suspect that she might have diabetes. Upon hearing the diagnosis, she broke down … for a day. Then she decided it was time to act
- He tells how people react to diabetics and what life with diabetes looks like in Poland
- My monthly expenses on diabetes are about PLN 1200 – says Joanna and lists what every diabetic has to buy to function normally
- You can find more such stories on the TvoiLokony home page
Monika Zieleniewska, MedTvoiLokony: Do you have insulin-dependent diabetes?
Joanna Organiściak: Yes. I remember a call from my doctor saying I have type 1 LADA diabetes. LADA is a type 1 variant characterized by autoantibodies against pancreatic β cells. This disease takes a long time to develop and is usually diagnosed by accident.
It was like that with you too?
For me, a colleague from work jokingly pointed out that I was eating all the time and losing weight and drinking a lot of coffee. I am a pharmacist, so I knew it was a typical symptom when the pancreas throws out an excessive amount of insulin, disproportionate to the amount of food. I actually drank coffee after coffee because I most likely had high sugar, so I was still sleepy… and I was losing weight. I weighed 52 kg.
At what height?
180 centimetres.
You didn’t put these facts together yourself?
I’ve always had a slim figure, but that is also a feature of people with type 1 diabetes. I was 32 years old and a very busy young mum who couldn’t remember that seven years earlier something had gone wrong. The GP even sent me for a fasting sugar test, but it came out fine. My cholesterol and thyroid hormones were also normal. I noticed this disease more closely when I was pregnant, at the age of 30, I made a sugar curve that indicated glucose intolerance. I was considered GDM and went on a diet.
The rest of the conversation under the video.
Has anyone in your family been ill?
No, but the etiology of diabetes is that if there are cases of autoimmune diseases in your family and you are very thin, you cannot gain muscle mass, you may be predisposed to be diabetic.
You did the research and …
Diabetes was confirmed by a curve and an anti-GAD antibody test. Their standard was exceeded a hundred times. It was obvious then, and the puzzle came together.
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Do you remember your reaction upon hearing the diagnosis?
I was reminded of my university lectures and, of course, the worst-case scenarios: dialysis, amputations, blindness … all the serious complications. It broke me … for one day, because then I thought to myself – now you have less time and you have to do what you’ve always dreamed of. And I went to study fashion design. Not only that, I quit my full-time job to focus only on running my own business. I really changed my life.
And the first moment I felt I was really sick was when it turned out that no insurance company wanted to insure me, precisely because of newly diagnosed diabetes.
You’ve put your life on a completely different path, but you also had to change your daily habits.
Repeatedly measuring your blood sugar level makes life difficult. If I don’t have a sensor that reads itself, I measure it 5-7 times a day. However, when I have an insulin pump, I calibrate it 2-3 times a day. The pump is a convenience, because I do not have to prick myself every time to administer insulin, I only measure the sugar level from my finger 2-3 times a day to calibrate it.
I’ve always felt stabs. I will never forget the first time the needle was put in me, I was so stressed that I refused to open my eyes. It is not pleasant, so I decided to go with the pump. Besides, the device gives tenths of insulin units, and the outer pens only give full units, which is too much for me.
You’ve invested in health.
The pump is precise, it recognizes the daily insulin sensitivity. Of course, it radically changed my life, because most of all, you have to always have it with you.
Do you manage to ignore it on a daily basis?
It is embedded in the buttock muscle, and I hang it most often on the edge of my pants, and if I don’t have pants, I use a bra or belt. I think of different ways, and I test clothes for suitability for wearing a pump. When I forget I have it, they remind me of the eyes of passersby. However, the device is visible, sometimes it will open or beep.
So it stresses you a little bit?
I have been wearing the pump since the summer of 2015, and the greatest experience was during the competition for the best Polish fashion designers, Złota Nitka. I had to go to the catwalk to collect the main prize, which caused a lot of excitement. On the one hand, great joy, and on the other, stress, because what will I do if the pump starts squeaking under the dress? I even planned how to quickly find her and silence her … Luckily, she didn’t squeal.
The insulin pump will tell you when your sugar rises and falls by making sounds and lighting up. And if the owner does not react in time, he begins to howl. It is very mobilizing, but it can also be annoying. More than once I asked passengers on the subway or bus to leave their seats so that I could mute her. It calms down for 2-5 minutes and then alarms again. There is no escaping it. Sometimes the device comes to life at night, so a diabetic should not eat in the evening because he will not sleep.
How do people react to the pump?
Straight from the hospital, with a pump already, I went to yoga. I thought the trainer was going to pass out. She was looking at me all the time, I couldn’t close my eyes because she was afraid that an ambulance should be called. People are scared, but you have to get them familiar with the topic. Report sickness before class. My trainer finally got used to it, in the fourth class it was OK. Many people ask me what it is like to have diabetes, I am always happy to answer. A meticulous translation is extremely important.
But overall, using the pump makes your day-to-day life easier?
Definitely, my results are much better. I only regret that in Poland, after the age of 26, a patient has to pay for the pump from his own pocket. The cost of my model, which turns itself off when the sugar drops, is 12-13 thousand. zloty. This feature is very important because it can take up to 5 minutes from the moment the pump detects that the sugar is dropping and turns off to the moment I feel it. If I don’t have a sensor, I have to feel it myself to turn it off. It requires constant attention. I would like to add that the sensors read sugar every 5 minutes and they cost me PLN 150 a week. To this should be added punctures, syringes, insulin …
My monthly expenses for diabetes are around PLN 1200.
Every four years, the pump must also be replaced, and a little more often the puncture procedure should be performed – breaking the adhesions with ultrasound waves to avoid necrosis. I pay 180 zlotys for five treatments, but there is no choice, the injection site needs to be looked after. When I add it all up, I envy the Czech Republic, where pumps, including punctures, syringes and insulin are fully reimbursed.
A u nas nic?
Insulin and glucose meter strips, in addition, we have a small surcharge for punctures and syringes. If someone gets a disability certificate, where it is listed, inter alia, reduced psychophysical resistance in relation to healthy people with the same professional qualifications can count on some protection at work. He also pays the ZUS contribution which is lower by PLN 100, and he can deduct the expenses for treatment from the tax. Hardly anyone does it, I know many people who throw away receipts, and you have to take a name invoice and enter the costs of treatment in the annual PIT tax return. It is worth taking care of such things, because diabetes is a chronic and incurable disease.
How would you rate the support from doctors? Are they more sensitive to the needs of diabetics?
My ex-doctor from Krakow wore the pump herself to find out what it was like. However, I also met with doctors who said that I do not qualify for a disability certificate, and this disease clearly reduces stress resistance. It seems to me that for many doctors it is difficult to look from the point of view of the patient, maybe the short time of visits is not conducive to it …?
I think a newly diagnosed person would need some kind of information package on available benefits. After all, there are discounts to museums, cinemas, theaters, free admission to the ZOO. I use them because what I save I spend on punctures or syringes. I miss some kind of comprehensive diabetes care program, and it would help us to work longer and more efficiently.
The question of finances comes back …
Because it is important. Many people sometimes withhold punctures, just for financial reasons. The pump is attached to the body through a puncture driven into the buttock. You have to replace them every three days, so we use 10 punctures for PLN 300 per month. If the puncture is held, the area heals worse. In addition, it is advisable to have a certain reserve, because, for example, after inserting it into the body, the cannula may bend, hitting the union after the previous injection, and will not administer insulin. The puncture can also be accidentally removed, and in hot weather it can peel off by itself.
Do you consider that the disease will progress?
It has happened before. At the beginning I had 25/XNUMX insulin, then it had to be given with a meal. Somewhere in the back of my head, I know what the consequences are if they don’t monitor sugar. On the first door after entering the diabetes ward in Krakow, there is a sign “Amputations” … Such a strong shock therapy. I saw people in the ward who were ill for XNUMX years and kept feeling in their legs, and those who were ill for a shorter time, but smoked for several years. They no longer felt their legs. Diabetes is very insidious and how I stay healthy today determines whether I will be fit tomorrow.
Have you ever fainted, asked for help from strangers?
Once, while on vacation, I went on a bike trip without food, a home key and my wallet. I got lost and my sugar dropped, I had to react quickly. I drove to the first kiosk, explained the situation and got two candy bars. The next day I returned with thanks and money. The patient’s situation is such that he has to cope, otherwise the blood sugar level will drop to zero and he will lose consciousness.
Another time, I got on a train that traveled from Krakow to Warsaw two hours longer than the schedule assumed. The sugar was falling, and the WARS wagon was missing. I asked passengers for food. A healthy person is not often dependent on others in this way, but I am always pleasantly surprised by the openness of human reactions.
You mentioned that you would like to design special shoes for the diabetic foot. Are you already working on it?
Shoes have fascinated me for a long time, and such a combination – master of pharmacy, designer and diabetic does not happen often. I want to take advantage of my situation and help others. As the disease progresses, the diabetic loses feeling in the feet, this is the so-called polyneuropathy, resulting from damage to the nerves, and, for example, I can’t feel a nail or stone in my shoe. She walks with him all day and only takes off his shoes, he notices a large wound. Designing footwear for sensitive feet gives a wide range of possibilities, although, of course, practical values should be in the first place. I started my adventure by contacting the Institute of Podology in Katowice.
What do you think is the most important thing in a diabetic’s life?
Coming to terms with diabetes, it seems to me. I do not hide that I am ill, I can ask for help, which in turn teaches me to be open. In addition, inner balance and peace. Professional stabilization, but also the right balance between work and leisure. In my opinion, this is the basis, because fluctuations in sugar levels fuel the brain’s emotional responses.
Physical activity is also very important. I walk to work at least three times a week. It is not about exercise activity, because diabetics suffer from drops and increases in blood sugar levels during strenuous exercise, e.g. at the gym, but something calmer, such as a walk.
What do you wish for?
Someone at work said recently that they want vacation time. I would like a diabetes vacation, but I know it is impossible. But let me tell you that recently I was amused by the announcement before the screening: “please turn off telephones and electronic devices”. I figured the insulin pump and pacemaker could not be turned off and smiled.
Buy a set for diabetics – in the composition you will find organic tea recommended for diabetes, dietary supplement for diabetics in capsules and tea made of white mulberry leaves.
Photo Anna Knurowska
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