Oana (ankylosing spondylitis)

Hi 😊. Who is Oana?

Hi 😊. My name is Oana, I own this website, www.oanaglutenfree.com. I like to write, to invent  “good” or “nutty” recipes, I like the sea like crazy, water in general, I like the sun and I feel sad about autumn, because I know that there will be less light and warmth and that the cold is coming the. Brrr…

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

My disease has set… a lifetime ago. It was the first days of January 1990, I had just turned 19. At first I felt an embarrassment in my left hip, which in a few days got worse, I started to limp, it was harder and harder to get up from the bed or the chair. After a few months, the same symptoms started in the right hip. The hardest was in the morning, when I couldn’t move my legs from the hip, if I tried to move them I was in excruciating pain, as if overnight the hip joints ossified, and in the morning I would break them when I tried to move, so I would roll out of bed on my knees on the carpet, I would always get up from my knees, not my hips, then I would start taking small, very small steps, holding on to furniture and walls. Within a few hours I was able to increase the number of steps, but the stairs and curbs required some very clever engineering to be able to climb them. Towards evening I was tired and the atrocious pains returned.

I was diagnosed in 1992 when I found a smart doctor who, after a lot of investigations that she couldn’t diagnose me with, had the idea to test me for HLAB-27, the marker for spondylitis, a little known disease at that time, and which, in theory, affected men. That’s when I got a diagnosis. I can count myself lucky that it happened so quickly, it’s still hard to diagnose these days, but I got a correct diagnosis in 1992, 30 years ago.

What treatment were you prescribed? Did it help you?

I think in 33 years I took a truckload of anti-inflammatories, of all kinds. I was prescribed sulfasalazine, the background drug for spondylitis, but I couldn’t tolerate it. I developed a gastric ulcer from anti-inflammatories, I had biliary crises (I removed the gall bladder in the end). Anti-inflammatories helped me, in the sense that I was somewhat functional, but the disease progressed. I am a typical case of axial spondylitis, with the whole spine, sacroiliacs and ribs affected. When I get into a stronger flare my shoulders, heels and wrists also hurt.

Did you also try a diet? Did it help?

Well, yes, I’m Oana gluten-free😊. 10 years ago I discovered the gluten-free diet. It was a smashing success! I went into remission for the first time, I had 7 years without a bit of pain and without the disease progressing. It seemed like a miracle to me, after 20 years of daily pain. I was given a break to reconsider my life, to discover new activities, which I would not have even dreamed of. As I said, my disease started as a “gift” when I turned 19, I didn’t have a typical, normal youth, I didn’t explore life like any other young woman, I didn’t dance, I didn’t go to the sea with my friends… I discovered the madness of youth at 42 years old 😊.

When I came out of remission 2 years ago, I had a rough time. Menopause knocked me out of remission and I hated it at first. The frequent and prolonged hot flashes, the states of depression and nervousness, the sudden hormonal change, all brought me a strong flare of spondylitis. All the affected areas became inflamed, with a plus, the wrists. For a while I remembered the first years of illness. Now I was crawling out of bed on my elbows, the only parts of my body that didn’t hurt. I had read about the Autoimmune Protocol (AIP), a tough diet, but the testimonials said it drastically reduced inflammation, so I took heart and tackled the AIP. In 2 months it got me back on my feet. It took longer to get my inflammatory markers down to a decent level, though still over the limit, but enough to get functional again. To my shame, I didn’t follow the reintroductions correctly, but the flare went away.

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

I only took non-steroidal anti-inflammatory drugs (NSAIDs) until I was about 27. Until then, the disease had manifested itself only at the level of the sacroiliac joints, but at the age of 27 it began to progress visibly. It engulfed my neck and during that time it made my life impossible. I could not move my neck at all, if I made the slightest movement it felt as if dozens of knives were piercing my neck and shoulders. The night was a nightmare, I didn’t sleep for months. I was screaming in pain when I changed my position during my sleep (actually I wasn’t changing my position, I was just trying, and it felt like my neck was breaking, I would suddenly wake up in pain). That’s when I discovered balneology, physiotherapy, paraffin wraps, physical therapy. I was in too strong flare to help me quickly, but in a month or two, the pains improved. For several years I did physiotherapy, sometimes it helped me, sometimes it didn’t, it depended on certain factors: for example, if I did outpatient treatment it didn’t help me at all, I had to be hospitalized, stay in bed, completely cut myself off from my life. Then I began to think that there must be other factors that maintain inflammation and pain, factors that are not only physical, but it was only the “seed” of later insights.

I went mudding, to Techirghiol (a famous salty lake in Romania), 10 summers in a row. I was doing cold mud wraps, on my own, for 10-12 days and baths in the salt lake. It helped me, the pain improved noticeably. Meanwhile the disease progressed. Whenever it involved new joints, the pain was excruciating for several months. Then the joints would “widen”, as the doctors used to say, and they had room to swell, it didn’t hurt so much anymore. The worst was when it engulfed the ribs. It was hard for me to breathe, because you can immobilize your hips or your neck, but you can’t do that with your ribs, you have to breathe. When I felt like sneezing or coughing, I would panic because every sneeze or cough was accompanied by a howl of pain. When it seized my lower back I was like a tree trunk with arms and legs. I could not bend or sit in a chair. I sat down, but I could only get up with help.

Meanwhile life went on. I was working, field work and with the public, so you can understand what it was like, I had stress vacation days, 3 days a year, it was not an easy job. I met my husband, and before entering into a serious relationship, I told him about my disease, how it manifests, what limitations I have, prognosis. I told him that I don’t know what future I will have. He understood. His mother has had rheumatoid arthritis for 50 years (maybe I’ll get her to write her story 😊) and knew what a debilitating autoimmune disease was. We have been together for over 20 years now.

What else helped me? By the time I was 40, I was tired. The constant struggle with pain, the lack of any horizon to look towards with hope, the days repeating themselves exactly, the lack of energy to do anything other than 8 hours at work, 2 hours on the road, and in the weekend I lay exhausted… Through a set of circumstances I gained some financial freedom, so I quit my job. At first it was hard for me to find a new path, but slowly I learned to enjoy freedom, rest… to learn to live again. I had time and energy to take care of myself, to get back on my feet. Yes, quitting a stressful job helped me.

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

I thank the Universe every day for 3 things: the washing machine, the robot vacuum cleaner and online search engines 😊. In the last years of documenting online, I managed to understand that there are many causes that can lead to the onset of an autoimmune disease, each of us “benefits” from the accumulation of several. In my case, in addition to the “defective” gene (not all people who have HLAB 27 present develop the disease, but most of those who develop the disease have this gene), there were repeated streptococcal infections from childhood and psychological factors that overwhelmed me, many and in a short time, I didn’t have time to adjust.

My parents divorced when I was a teenager. In the 80s, divorce was a big stigma, both for the couple and for those around them, especially the children. The divorce lasted for years, with repeated court appearances, where you were questioned as a criminal, and those close or less close gave their opinion about you to the world, the hearings were public, anyone could come to witness the destruction of your life like a show. Washing clothes in public… I only participated once, when I was asked who I choose, mom or dad. It was a formality, I was turning 18 in a few months, so it didn’t really matter, but that hearing and all those years of harassment left a mark on me. My parents were equally affected by the whole situation, my father died within a few months of a heart attack. My mother never recovered either, she died within a few years, also from a heart disease. I’m glad that now things are different in terms of divorce, people can separate civilly and discreetly if they don’t get along anymore and can see their lives on without being traumatized.

3 months after my father’s death I finished high school. I was a mental wreck, a drifting teenager without much emotional and financial support, my mother was a shadow of what she had been, on a pittance as salary that couldn’t support us. Anyway, I didn’t have the necessary condition to be able to attend a college, so I got a job. My job was well-paid (in the first month I earned half what my mother earned after decades of work, and in a few months, after the trial period, I had double her salary), but stressful, as I told you before. After 2 months of employment, the revolution came, I was at work when the fall of the government was announced, the employers closed the doors and did not let us leave, whole columns of workers were passing the gates of the enterprise, they were afraid that we would join them. For several days, I, an 18-year-old girl, walked on streets with my job with the fear of bullets. A few weeks later, in January, I had my first symptoms. I don’t think it was a coincidence.

As hard as it may seem, I think the spondylitis was a balancing factor. It destabilized the existing state of affairs, which was not exactly ideal, and prompted me to find a balance. Of course, at the time I thought it was making things worse, but slowly it pushed me down a different path. The path I am on now.

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?

For several years now, I have stopped asking myself what I am doing in my life. Now I know I came to stay as long as needed. I still have days when I feel like I haven’t hit the bottom line, and that frustrates me, I sulk for a while, then I recover and enjoy the… road again. Writing helps and motivates me. People’s positive reaction to my work as well. A sunny day. Seeing the sea again. And many more that I didn’t have the energy or openness to notice before. Have I achieved an equilibrium? Well said: ” an equilibrium “. Today I have an equilibrium that may throw me off balance tomorrow, and a new search for equilibrium is needed. Beyond balance I seek harmony. Harmony is transformative, it gives me room to move, unlike balance, which I perceive strictly. And I like to feel free.

My life today… As a diet, the gluten-free diet is a constant. I don’t consume cow’s milk, but I rarely allow myself a piece of goat cheese. It’s good 😊. After AIP I did not reintroduce potatoes, white rice and corn. I eat legumes rarely, once or twice a week. My food is 95% made by me, from natural ingredients. I rarely consume processed products, I still enjoy a piece of dried salami sometimes, but I learned to make sausages at home, only goodies. I’ve drastically cut back on sugar, but I eat homemade, tasty, healthy treats in reasonable amounts. I took a nutrition technician course in order to be able to feed myself as well as possible without having nutritional deficiencies and to provide my readers with the most accurate information.

I am careful not to gain weight, from experience any kilo brings more pain. I do exercise, long walks, gymnastics (a mix of kineto and yoga), I sit in the sun from March to October for 30-50 minutes a day, I rest as much as I need. I read, I listen to podcasts, I get informed. I am working on my mentality, I no longer consider myself a victim, but a victor. I still have symptoms, but bearable: minor pains, sometimes intestinal discomfort, days with stronger hot flashes, exhaustion and sometimes anxiety. I am grateful. After 33 years of active spondylitis (minus the 7 years of remission) I could be worse. I have a beautiful, peaceful, fulfilling life.

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

To have a positive mindset all the time. Maybe I’m exaggerating, you can’t be positive all the time, but anxiety states destabilize me sometimes. The terrible pains I had throughout my youth marked me. Apart from the spondylitis pains, I also had period pains, a doctor said I had like labor pains every month. No medicine had an effect then, no matter how strong it was. I was rolling on the floor and screaming in pain until I was losing my voice. Gallbladder pain, gastric ulcer, kidney stone… All these have left traces, even if they are in the past.

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

I don’t know what it’s like to be in your shoes. I did not have a normal, painless youth and early adulthood. I didn’t have time to make a life for myself before the onset of the disease. I had nothing to lose, only an illusory future. If your autoimmune disease struck you in adulthood, you probably feel lost, that your life has become unbearable, and that everything you’ve built is crumbling. Allow yourself to feel this way for a while, to cry, to mourn, to feel overwhelmed by pain. Then pick yourself up from the ground and start a new life. Seek the remedy, seek the healing. It does exist. It may be beyond your conscious mind, but it is there and you will find it someday. Go beyond the spectrum of allopathic medicine and in parallel, look for solutions.