Tatiana is like a summer storm. Expansive, daring. As a true Libra, she longs for balance and human connection. She wants harmony, beauty, adventure. And to be healthy. She is beautiful. She is tall, slender, always elegant and with a smile on her face. No one would suspect that she is 45 years old and has a cohort of diseases, some of which have not even been given a name, after decades of excruciating pain, tests and medical investigations.
Hi 😊. Who is Tatiana?
Hi! I grew up in the May 2 village with my grandparents, barefoot, by the sea. I learned to swim before I learned to walk.
I went to school in Tulcea, where I lived until I finished highschool. I like to roam the Delta, I fish, I enjoy boating. I went to college in Constanța, the city where I stayed until 10 years ago.
I am an informatician at the core, but I have worked in several fields (education, trade, tourism, newspaper and television, real estate, production plants, canteens, etc.) About every 2 years I do a new course, a totally different specialization. That keeps me “hooked”, I’m curious, I want to know everything.
I love nature, in its heart I find myself, that’s how I charge my batteries. I love to travel, to discover new people and places. I don’t like crowded tourist places, but authentic ones.
I have many hobbies, I work in wood, tailor, sew, cook without recipes and I am delighted when I discover new tastes and aromas. I love life, people, animals.
I’d like to say I’m strong, but it’s just an appearance. Inside I am fragile, I need love, to trust in those around me. When I have a clear goal, I move mountains. When I’m hurt, I cry, but I get up quickly. I’m a perfectionist. A normal being with qualities and flaws. I hope it’s in the right percentages 😊.
When did your disease/s started? Which were your first symptoms? How did you get to a diagnosis?
I’ve had urinary infections since kindergarten, double pneumonia at 4 months. I took a lot of antibiotics and messed up my gut flora. In fact, all my childhood, my mother gave me penicillin for every little thing. Of course, that also mattered. I had fermentation colitis. That’s what it was called then. I was puffing up like a balloon. Then they called it irritable colon.
In high school, I went with my classmates in the Codru Forest, near Babadag. I slept on the grass, and at home I found ticks on my back. I had a reaction with red spots and fever (erythema). After 2 months all my joints were swollen and stiff. No treatment helped me. An American doctor saw me (I was with my mother at work, she was the director of a children’s house and the doctor had come with helpers from the USA). She gave me treatment for several weeks. I don’t know what it was. There were pills in envelopes and it was written on them how to take them. Some antibiotics, for sure… After a while I recovered. At the time it was said to be juvenile arthritis.
I grew up, I finished IT college, I got married at 23 to my colleague. I lost 2 pregnancies, managed with a 7-month hospitalization to carry a pregnancy to term and give birth to my first child by caesarean section 8 months later. After giving birth, for 3 years I had terrible abdominal pain, uterus, inflammations and 3 operations. I got allergies.
I had my second child after 4 years. In the seventh month I went to a barbeque and when I returned, I noticed many flea bites on my legs and a tick. I had a fever for 2 months and inflamed ganglia. No one has found the cause, but I suspect that problems have been activated since the first infection, the zoonosis. I gave birth on New Year’s Eve. After the epidural, I went into cardiac arrest (anesthetic allergy). They resuscitated me. The child is ok, he’s 16 now.
Initially, all the problems that arose were attributed to post-partum depression. Over the next year I spent many months in neurology ward. I had two bone marrow samples for some oligoclonal bands. Later came back pain, sacroiliitis…moved me from neurology to rheumatology and… HLA B27 positive (ankylosing spondylitis).
I never had elevated inflammatory factors. No ESR or PCR…nothing. Just pain, stiffness, inflamed joints. They said it is a seronegative form.
What treatment were you prescribed? Did it help you?
I went to the doctors just in the first 2 years. In addition to the treatments of the first 6 months from neurology, I took salazopirine, medrol, aspenter, plaquenil, colchicine, lirica, etc. They said that I have multiple sclerosis and ankylosing spondylitis, but also vasculitis, polymyositis and lupus, antiphospholipid syndrome, Behcet’s disease (for this they did 2 colonoscopies and I had thousands of ulcers and I ate everything liquid, with a straw).
Because of the side effects I had asthma attacks, I went to a pulmonologist, who said I have pulmonary fibrosis and gave me inhalant cortisone for 3 months. Good luck with someone from Patient Protection who took me to Marius Nasta Institute of Pulmonology and after they put some cables through my lungs and took samples, I had nothing to do with fibrosis. It was an allergy to NSAIDs (non-steroidal anti-inflammatory drugs), the lungs were irritated and hence the nasty symptoms. Even today I don’t have asthma and they treated me for 3 crazy months. I was suspected of Lyme disease (I probably had it initially). I went abroad for tests, I received 3-month treatments with antibiotics and antiparasitics, doses like for a horse. After that, the neurological symptoms disappeared.
I “lived” on the cerebro-vascular ward at Colentina and in the University Hospital for a year. Because nothing was improving… I stopped going to the doctors.
During that year in neurology ward, because I had brain damage, they suspected me of multiple sclerosis, then cerebral vasculitis, then hypoplastic cerebral artery. For the last one, I did an arteriography at the Victor Babeș Center of Excellence and the highlight: they found my artery that, after 3 MRIs, had been said to be ok. I had got used with MRI and arteriography like walking in the park.
Many pregnancy maintenance treatments, laparoscopic operations (I had abdominal pain of unknown causes), hysteroscopy operation and removal of sutures from the uterus, unclogged fallopian tubes, 2 cesarean sections, appendicitis. Colonoscopy, arteriography, analyzes taken with a tube and video camera from the lungs. All bad, nothing conclusive. I must have forgotten something…
A doctor from Hematology Fundeni said that yes, I can have multiple autoimmune diseases. That there are symptoms from each and I had positive or borderline tests, but over time one of them will be predominant.
But for 10 years I have not taken any treatment. Only antibiotics for Ecoli. Nothing for autoimmune. 7 years were almost symptom free. The joint problems have reappeared in the last year and lately I’m often in pain: hips, sacroiliacs, the spine in the middle to below the ribs, my knees crackle, my wrists hurt, my fingers, the tendons in my ankles…
For 1 year and a half I have problems again with a fibroid. I had embolized the arteries 13 years ago, but they recurred. Hemorrhages, curettages, a failed embolization last year. Definitive surgery coming up, I hope it’s better after that. I have frequent Ecoli infections (probably my immunity is not great). I often get depressed.
Did you also try a diet? Did it help?
I have been fasting and had detoxification periods… I don’t even know how many and why. I went raw. A year of eating exclusively sprouts, salads, fruits. A therapist said that I have energetic powers, that not only will I heal myself, but I will also be able to help others. I turned to homeopathy and acupuncture. No effects! I drank kangen water for 1 year, I went to spa resorts. Mud and salt water makes me worse.
I was a vegetarian for 7 years. I have also had the Gerson therapy often for the last 15 years: coffee enemas (between 1-4 per day), drinking 13 glasses of organic vegetable and apple juices, Hippocrates soup, zero salt, iodine supplements, enzymes, potassium salts. These got me out of flares quickly, probably helped me from losing my mind when I was dying of pain.
I am now on the Autoimmune Protocol (AIP) and seeing results. I have a really hard time eating meat, but I found out that it was the foods with high allergen potential that were my favorites.
What else, aside from medication and diet, did you try and found it working for you?
I have tried the most drastic and extreme therapies. 15 years ago I sold everything and went into debt thinking that one of the proposed solutions was life-saving. There were always doctors and healers who had solutions, but not for free.
I did ozone therapy with large blood transfusions (they took out a big bag of blood, ozonated it and put it back). It cost me thousands of euros and for 1 year I went there with 2 small children, who played under the bed and pulled the cable connected to my vein. I did apitherapy for 1 year. At that time there were many testimonies of people being healed, but the reality was not like that, it didn’t work for me. I was stung by dozens of bees in acupuncture points, I did massages, wraps, took teas and supplements… I was worse! Physiotherapy used to have some effects, when I paid 250 lei per session and did at least 15. In the last 2 years, no effect.
I went through depression, panic attacks, suicidal desire, to stop tormenting my children and family. Having small children, I did not work for 7 years. I had no one to leave them with and in the situation I was in I could not earn enough to pay childcare. We rented a house and my husband was overwhelmed with expenses.
I decided to reset everything. I left the center of Constanta and traveled all over the country looking for a place to start my life over. By chance, someone gave me the key to a house in the Bran area and I stayed there for 3-4 weeks. We got to know the area and after a year… we moved there. Initially renting a house in the village of Simon, 3.5 km from the main road, near the forest. For 1 year, all 4 of us stayed there, cut off from the world, my husband in technical unemployment, the 3 of us without income.
It was very hard. I ate grass from the hills, picked fruit, drank spring water. Mentally, we all broke down because we thought that the good times were no longer coming. BUT physical improvements came for my health. From a woman who was lying in bed, howling at night in pain, unable to breathe… the next spring I was crossing the mountains with a staff in my hand.
Then I looked for a plot of land. I struggled and got about 12,000 euros, and we built a house. We all physically worked on it. Yes, I could! Then I got my first job in tourism, as a receptionist. Then I took care of a Pet Shop for 2 years (I love animals). Then I became an IT engineer, then a project manager at a factory.
I was ok and wanted to make up for lost time, prove that I was beautiful (I was slim and wore high heels) and smart and wanted more money. But I had forgotten about the illness, and the rush and stress of deadlines, the fear of not being enough, the perfectionism got me down. I broke down again! I resigned, but it was too late, and I experienced terrible flares again. For 2 months I couldn’t even use my hands to press the door handle. My ankles, knees, hips, ribs, back, and even my jaw joint were burning, ankylosed and painful. I removed the gluten and reintroduced meat into the diet. The flare passed in a few months.
Then I got an easy job. At a boarding house. I took my time among the tourists. Everyone loved me. I received flowers, small attentions, they hugged me when they left. They were still calling me after 1 year. I realized that I craved socialization, attention, warm people. I left because of the night shifts, when I was forced to stay awake in the reception, when everyone was sleeping (lack of staff, economy on the part of the boss). After 3 such nights I could no longer stand on my feet. Sleep, rest are vital in my situation.
Finally, I went back to office work. Initially in a chain of canteens where I realized that I was inspecting the locations, responding to complaints, but I couldn’t taste the dishes, because I eat gluten-free. I gave up.
Now I am an assistant manager at a construction company. I earn very little, but I have a lot of freedom and peace of mind. The advantage is that every day I can prepare my food, teas, at work. Things are moving at a less brisk pace.
There can be many causes to auto immune disease. Which one do you think have triggered yours?
I had a happy childhood, I did good in school, until… In 2 years I suffered heavy losses: my favorite grandmother died, my grandfather also died. My parents often argued and probably would have divorced next. But dad was killed on the train, in a delegation, right after the revolution. I was “daddy’s little girl”. I suffered a shock, I didn’t speak for several years almost at all, I was sitting in the dark, I had nightmares. It wasn’t until high school that I became a normal child again.
I know for sure that suffering, shock, plays an important role. Mom is a fighter, but she’s cold. Not a comfort, not a word of encouragement. She raised me with criticism and with “it’s not good, it’s not enough, what will the world say”. That’s how I always became dissatisfied with myself. I’m struggling with the childhood label: you’re not good enough.
Before the long remission I worked on the perception of myself as a person and self love. Autoimmunity involves fighting with us, physically but also mentally. I really believe that…
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?
10 years ago I was radical. I abandoned the center of Constanța for a mountain village, I stayed in the forest, like 100 years ago. They say I don’t have much of a brain… But it worked. I was obsessed with the water, with the chlorine in it, with the rusty pipes. We dug a well. Mountain ozone. Greenery. Quiet.
Now I’m focusing on restoring my microbiome and becoming… ZEN again. Mistakes made by me in the last 2 years: massive stress, insomnia, alcohol (sweet wine 2-3 glasses at night, but also sour cherry, palinca), excess dairy, excess gluten-free bread and sweets, coffee daily, I tasted sausages.
I mean some extremes compared to what got me on my feet 10 years ago: raw vegan food, then introduced fish and egg yolk. Meditation, movement on the mountain, sleep…
What do you find the most difficult, talking about a healthy lifestyle and a functional life?
No one is cured, no diet, or treatment, or positive attitude could lead to avoiding another flare or stopping the progression of the disease. There are periods of calm, and when you least think of it, it hits you again. Now I’m thinking… what does it mean to not know and blindly believe. You know, they are doctors, trust them.
(Me: do you trust yourself?) Oh… YES, and NO. Honestly, that’s the truth. When I screw up, I don’t trust myself anymore. I’m thinking…what’s the point? Then I have beautiful moments, I tell myself: I have a unique life, it must be lived to the fullest. (Me: acceptance is the point) I don’t accept! Many have told me this, but I can’t. I cannot accept that there is no solution. (Me: And is the suffering of the last years worth it? The lost time?) No. The first years were bad. Not the last ones.
I’m afraid of that moment when nothing will work anymore, neither diet, NSAIDs, good thinking… That’s what the old people say, that over time, the flares are frequent and nothing works anymore. (Me: We don’t know what will happen. Why aren’t you happy today?) I’m happy. But sometimes…I crumble. I didn’t believe in autoimmunity. Smoke without fire. All the doctors say: unknown cause, but incurable. I say: undiscovered cause. After discovering the cause, it is curable. If you want.
What advice would you give to people who have just been diagnosed with an autoimmune disease? How would you encourage them?
You can live with an autoimmune disease, you can have a life with many beautiful moments and fulfillments.
Drug treatments are not the only solution. Sometimes too much medication can do more harm than good.
We have to stop running and analyze ourselves: body and soul. Let’s take better care of ourselves, let’s love ourselves. Let’s enjoy everything that life offers us beautifully: family, loved ones, a sunrise, chirping of birds, a trip, a good book… Small and beautiful things can mean a lot. Let’s not compare ourselves with others, because everyone has their own ways to be happy, other force. We do as much as we can. We have been given one life and we cannot leave it to fate. It depends on us whether it will be storm or sun.
