Lucia (rheumatoid arthritis)

by Oana

When I told her that I wanted to interview her for my blog, Lucia was preparing the dishes for the Christmas table. She stopped for a moment with the spoon in her hand, looked at me and said: “okay, dear”. Lucia is 75 years old, and 43 of them she lived with rheumatoid arthritis. She is my mother-in-law ๐Ÿ˜Š. I maintained the standard questions, but wrote the answers in the third person, because they are the result of a discussion between the two of us.

Hi ๐Ÿ˜Š. Who is Lucia?

Lucia is a true Cancer. She always had something to take care of: children, husband, flowers, clothes, chickens, goats, piglets… She likes to have everything in abundance, maybe because in her childhood she didn’t have much. Anyone who steps on her threshold receives something to eat and drink, she does all the memorials for the dead people and always has a chicken in the freezer ready to take the road to Bucharest, to the children ๐Ÿ˜Š.

When did your disease started? Which were your first symptoms? How did you get to a diagnosis?

In 1979 Lucia was 32 years old and had 4 small children. She always wanted many children and had to fight to be able to have them. She couldn’t get pregnant, she went to many doctors and finally she succeeded, she gave birth to 4 beautiful and healthy boys, now all grownups with good jobs and homes. In 1979 when her index fingers started hurting she didn’t pay much attention. She worked a lot with her hands, washing clothes by hand for 6 people, cooking, cleaning and working in a shoe factory, all manual labor. When the fingers became swollen, she went to the company doctor and he told her to take a break from work, that she was working too much. How to pause, who will feed and wash her children? She continued to work until she could no longer move her hands, which had become very swollen and painful. She didn’t have any help, so the 2 older boys, 6 and 5 years old, started doing work around the house: cleaning, spreading laundry, cleaning vegetables for food… Lucia could no longer squeeze her fingers to cut with a knife, not even being able to comb and hold her long hair, and soon the pains spread, she could hardly get out of bed.

One day, around 1981, a neighbor who had called the ambulance because she was feeling sick, called her to stay with her until the doctor came. When he came, he consulted the neighbor with diarrhea, then noticed Lucia’s swollen hands. “What happened with you, what’s wrong? Come to my office tomorrow.” He was a doctor in a university hospital, and Lucia, after being diagnosed with rheumatoid arthritis, became study material for students. It was a rare disease then. In 1988, when she retired being too sick to work anymore, the doctor on the commission, who also had polyarthritis, told her that the two of them were the only people with polyarthritis retired due to illness in Bucharest.

What treatment were you prescribed? Did it help you?

The first meds prescribed were gold salts and Arava (leflunomide, a disease modifier), both very strong meds, which helped bring down the inflammation partially enough for her to get out of bed and use her hands a little better. She was alternating them with classic anti-inflammatories and corticosteroids. Over time, all these drugs and the disease itself triggered other diseases in: stomach, intestine, kidneys, lungs, heart, and she became cortico-dependent.

Did you also try a diet? Did it help?

If these days few doctors recommend paying attention to nutrition, and we learned online that certain diets have a beneficial effect in autoimmune diseases (gluten-free, dairy-free, no/low starch, AIP, etc.) what diet could she have followed? Just low sodium, no fat, no fried foods, lots of dairy, fruit and vegetables and 5 meals a day, as is the standard recommendation on the dozens of release forms from the hospital she has.

What else, aside from medication and diet, did you try and found it working for you?

After several years of illness, she began to have panic attacks and was afraid to leave the house alone. She is a sensitive woman, and the disease threw her off balance, as it does with most people with autoimmune diseases. She lived in the apartment on the 5th floor of a block of flats in Titan and only went out when accompanied and only when she needed to see a doctor. Physically she was a little better, but mentally she was suffering. When her husband retired, they decided to move to the countryside, to the house inherited from his parents in a village in Teleorman.

They slowly renovated the old house, built a bathroom, raise birds, have a naughty goat that they take for a walk like a puppy, from which they eat fresh milk and good cheese, every year they have a piglet, and in the garden there is always something to do. Since moving to the country Lucia has blossomed. Her husband adapted the handles of the knives and other tools she uses, making them thicker so she can grip them, because she still can’t make a fist. She has good days and bad days, but the animals don’t know that, they want water and food, so she mobilizes and, with the help of her husband, makes it through every day, as they have done for 50 years together.

Almost all their food is from their own household, they make their bread at home, from wheat from the association, water from the well.

There can be many causes to auto immune disease. Which one do you think have triggered yours?

In her case also there were several causes, physical and mental, just like in the case of many autoimmune patients. She lost her mother when she was just a child, then she had to leave her village near Botoศ™ani and move to the distant and noisy Bucharest, to make a living. It wasn’t easy for the little girl to adapt, staying with a host family, go to school and then find a job. She worked all her life, but the period when the disease started was a difficult one: 4 small children to take care of and a husband who worked day and night to put bread on the table and did not have time to help her with household chores.

Do you have an equilibrium by now? How does a day in your life look like, what do you eat and what is your lifestyle?

My father-in-law answered this question: “she wakes up very early in the morning and finds the coffee made by her husband” ๐Ÿ˜Š She has a schedule set by the cycles of nature: planting, harvesting, weeding, watering the garden, feeding birds and animals, rest at lunch (when possible). As I said she has a sensitive nature, she likes warm people, beautiful flowers, Christmas carols, the newly hatched chickens that she takes care of like they are children, and then follows her wherever she goes. Only my father-in-law annoys her sometimes when he won’t turn off the TV stuck on panicky news.

She takes heart meds, stomach meds, vitamins and the ever-present medrol she’s addicted to.

What do you find the most difficult, talking about a healthy lifestyle and a functional life?

“I’m old, dear, why bother? If I hadn’t move to the country, I’d be long dead by now. It’s good here.”

What advice would you give to people who have just been diagnosed with an autoimmune disease? How would you encourage them?

“To fight! Don’t fall and stay fallen! If you don’t set forward, who will do that for you? To have faith!โ€

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