Putting your life story down on paper (or on your laptop screen) can be painful. Or it can be liberating. Or it’s painful at first, then liberating. “You let it out” what was grinding you, what was pressing you, what was poisoning you. Writing involves a different brain activity than thinking. It disciplines your mind and puts order in what you think. In what you accept about yourself and others. It gives you a different perspective on your life than what you think.
When I wrote my story in the website’s new column, “A Life in Search of Equilibrium”, I felt that I had freed myself from a burden that I had been unnecessarily carrying around for a long time. And I invited you to try this “therapy”. To understand yourself better through writing. And in this way, to also help those diagnosed recently or a while ago to understand that they are not alone, that we, who have shared our story here, are people like them. And that there is hope.
Today I will publish something new: your story, of everyone who has interacted with me publicly. There will be nothing here from private conversations, only what you have posted publicly.
Hi 😊. Who are you?
Hi! I am an autoimmune sufferer, man and woman, I am between 0 and 90 years old, and I try as best I can to live a normal life as society sees it.
When did your disease/s started? Which were your first symptoms? How did you get to a diagnosis?
“I have an autoimmune disease and it’s called mixed connective tissue disease. I don’t know how long I’ve had it, maybe I was born with it, I don’t know. It is certain that as a child I had problems with poor circulation, rheumatism, etc. The family doctor diagnosed me with rheumatoid arthritis, then, after my children were born, Raynaud’s Syndrome… then, after I couldn’t stand Pentoxifylline anymore, I did investigations at the rheumatology institute in Bucharest and that’s when I found out about the autoimmune disease… That left me speechless.”
“Ankylosing spondylitis. As a child I was extremely energetic and skinny, in constant motion… at 15 years old the first signs appeared, as if my reactions in sports were no longer so good… initially they thought it is bone TB (many X-rays taken showed the spaces erased sacroiliacs) followed by streptomycin injections for 1 year every day….at 16, 17 years old at the Iulius Fucik Institute I was diagnosed with ankylosing spondylitis…the doctor said then that it could be anything, but only this was not desirable….”
“I come with several autoimmune diseases”
“I suffer from psoriatic arthropathy, psoriasis, heart and kidney failure after a myocardial infarction, hypothyroidism”
“I spent 2 weeks in the hospital after I arrived at the ER almost in a coma, I was visited by a total of 11 specialists and I was diagnosed with a series of autoimmune diseases: systemic lupus erythematosus, myositis, sjogren’s and raynaud’s.”
“I have rheumatoid arthritis for 12 years. I have one hand swollen at the wrist and it hurts as if it were broken, and two fingers the same.”
What treatment were you prescribed? Did it help you?
“In the beginning I followed intervertebral infiltrations with vitamins, B’s… I know that the rheumatologist said what an athlete would have come out of me… I was 1.80 m and I was only “fiber” from the sports I played… Then I was hospitalized 3, 4 times a year, but the ESR remained at high values of 200-300… A senior nurse there told me to avoid cortisone because of the side effects on the kidneys in particular”
“I went to several doctors to whom I told that my treatment was no longer effective and for nothing, some increased my dose, and others…”
Did you also try a diet? Did it help?
“I had a diet much worse than the one I have now, and from the perspective of that time it seemed like a “walk in the park” to eat without gluten, eggs or cow’s milk. What I can tell you is that, as bad as it was, I got used to it. I got a kitchen scale, used websites and apps and after about 6 months I was OK. I’m crazy and undisciplined in many ways, but I’m very strict about food. I try to be tolerant with myself and understand that I can’t be a robot. I am proud of the resilience I have shown, in the past I lived with the impression that I could not even fast.”
“In the last 5 years I have given up gluten several times. But I kept coming back. For me it’s a long and arduous process. I gave up sugar and carbs with great ease for years. And I was able to give up dairy and soy more easily. I eliminated gluten again for a few months, but I still had small escapades that frustrate me to the max. But I will make it. I have to succeed because life without gluten is like a revelation. I feel so good without it. I think we would all be healthier if we were educated in this regard. People don’t think they can get rid of pain or other ailments by giving up certain foods. But it is true!”
“I researched as much as I could… then after a few years I tried to eliminate gluten, sugar, stress, fear, etc… and I feel better, better as I can… moving forward in life! A continuous struggle that helps us to be alive and… on our feet!”
“I received treatment for polyarthritis, then lupus, then systemic vasculitis and in the end I discovered that I have celiac disease… Since following the gluten-free diet, everything has normalized”
What else, aside from medication and diet, did you try and found it working for you?
“I confidently say that diet, emotional balance and friendship with autoimmune diseases help us move forward!”
There can be many causes to auto immune disease. Which one do you think have triggered yours?
Here I will say a few words. The causes are multiple. Physical causes as seen by allopathic medicine: self-aggression by the body’s own immune system, genetic causes, parasites, microbes, viruses. And stress can be included in physical causes.
Spiritual and emotional causes are harder to prove scientifically and thus we have good reason not to accept them: self-devaluation, self-loathing, self-rejection, trauma, shame, inner conflict.
All of this feels inside like deep pain, like anger, hopelessness, anxiety, depression… And it’s hard to accept. “I am not like this!”
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?
“I retired medically… Now I don’t work anymore, I try to do what I can at home, when I have pain or bad moods I can’t do anything anymore. I can’t do sports because of my heart, but in the spring I go for walks, in the summer in the morning and in the evening, now and in the winter it’s warm and I still go shopping close to home. I’m sorry that I can no longer climb the mountain like I used to do when I was healthy, my great pleasure was to go to places that are less traveled, in the mountains.”
“Every day is a new high-wire balancing act, I have bad days and better days and I hope to get a little normal life.”
What do you find the most difficult, talking about a healthy lifestyle and a functional life?
“More prayers and faith in God will help us love each other more! But what do we do with those around us who, instead of helping us, rather hinder us?!” My answer: “I will tell you what I do. I rely primarily on myself, I don’t expect anything from those around me, and when someone does something for me I feel immense joy and gratitude. Because no one is obliged to do anything for me, just as I am not obliged to do anything for others. Sometimes I cry tears of joy when I see true kindness, done from the heart.”
“You don’t look sick” or “you look fine, why are you moving so slowly?” “That’s good, it reminds me of when I had terrible stomach pains. After endoscopy and colonoscopy, the doctor tells me: you have nothing, everything is fine. I insist with my pains for which he tells me to go to psychiatry. Great…”
What advice would you give to people who have just been diagnosed with an autoimmune disease? How would you encourage them?
“Faith and acceptance are the foundation of a committed life!”
“Let’s love ourselves more!”
“It’s important to give… if you know how to love yourself!!”
“I hope I don’t reach old age tormented by this disease… In the end I managed to keep it under control, but that depends only on the person… Always be careful what you eat, how you think, so as not to trigger the flares. Remission is also possible in polyarthritis!”
