My name is Veronika Kapsova and I have been living with arthritis since the day I was born.
I will be 20 in March and in the years in between I have been under constant attack by this violent disease. Worse than acid poured over your joints. That is the only way to describe the inflammation and pain I’ve had to live with. I’ve even been temporarily blinded. Not something most people expect when they hear the word arthritis. But that is my reality.
When I look back at what I’ve gone through, it is extraordinary to think that this year I will be taking part in the Flora Women’s Mini Marathon. It’s a 10km course that will test me to the very maximum. I’m confident I can do it though. I’ve conquered greater challenges!
In the lead up to this year’s event I will be posting regular diary entries here on the Arthritis Ireland blog. I hope you enjoy reading them and are motivated to join me on June 2nd. This is my first entry….
I was born in the Czech Republic in 1994 and although I have had problems with arthritis since then, I was 2 years old before I was diagnosed properly. Two diagnoses to be specific: Systemic Juvenile Onset Rheumatoid Idiopathic Arthritis, and a little while after that, Psoriatic Arthritis.
As a baby, I went through a massive amount of different and really invasive medical tests. Doctors were at a loss as to what was wrong. Eventually they diagnosed me. Receiving the necessary treatment to counteract this disease was the next logical step right? Wrong.
There was no specific medication to cure such a condition at the time. The only thing that kept me going since I was about 6-years-old were anti-malarials and steroids which were grossly inadequate in the face of the violence my immune system was inflicting on me every day.
The systemic type of arthritis that I have is the worst and rarest of all forms. Only about 3% of people in the world get it. It affects the whole system – small bones, big bones, internal organs, brain, visual nerves and much more. As I mentioned above, one flare attacked my visual nerves which left me temporarily blind and not long after that I ended up in a wheelchair unable to walk.
In terms of my life, I found myself under the thumb of this disease. It decided what I did, not me or my family. And it never ruled in my favour. I wasn’t able to attend school. I was unable to do anything physical including walking, running and writing. I was unable to be near anyone who was sick or even had a slight head cold. I would get sick within 24 hours and would be sick for a while. I am still the same now.
My mum homeschooled me in cooperation with my teachers and principal. My mum is a surgical nurse and when she was working my brother would help with my schooling. Despite everything I always managed to pass all my exams.
Eight years ago I moved to Kilkenny but the upturn in my health I’d hoped for didn’t happen straight away. In fact it got a lot worse before it got better. Since then I have had a brain tumor – benign intracranial hypertension which required numerous surgeries, I was treated for meningitis and diagnosed with chronic migraines and systemic Still’s disease.
At one point I had lost total faith that I would ever be well again. I had been through so much I just wanted it all to stop and live normally like all my other friends. To be honest there wasn’t a time I didn’t think of suicide. I was young, helpless and stupid.
Thankfully there was light at the end of the tunnel. Today I receive a monthly biologic injection now called Tocilizumab (Actemra) and these infusions have helped me to get myself off the ground again. I’ve started to do the things I was used to and also the things I always wanted to do. I am so grateful to my doctors, especially Dr. Orla Killeen, my previous rheumatologist in Crumlin Hospital and Dr. Paul O’Connell, my current rheumatologist in Beaumont Hospital, for all their efforts in helping me to get better. Since I have been on these treatments I have joined the gym again and started exercising regularly and strengthening my body even if my joints or stiff or my body want to fight me because I will fight back.
Nothing stops me. I go in and do what I have to do because I love doing it. I can feel tired after. I am not thinking about when my body will fight me. I am staying positive and I am still here and planning my future – like training for the Flora Women’s Mini Marathon in aid of Arthritis Ireland.
I cannot wait for June 2nd when I get to join dozens of other women living with arthritis who are walking, jogging or running this race. I will be doing it for myself and the thousands of others out there who are facing the realities of living with arthritis. I hope you will join me on the day too…if you’re a woman of course!
The reason I chose to do it for Arthritis Ireland was down to all of the support they gave me when I was younger. In 2008 I attended an activity weekend break (now the JA Road Trip) with a friend of mine. I enjoyed it so much and realised that I was really thankful to have that support. Today I’m a committee member of the Arthritis Ireland branch in Kilkenny and I try to get involved as much as possible. I am proud to be a member of Team Arthritis Ireland for this year’s Mini Marathon.
Why not join Veronika in signing up to Team Arthritis Ireland for the Flora Women’s Mini Marathon? Register here.