How we met

I first met Monika during my university studies back in 1997. Although we didn't know each other well at the time, our paths crossed again when we both started working at the State Veterinary Administration in Bratislava. It was then that we became close friends, and she quickly became one of my best friends—a bond that endures to this day.

Monika was an incredible person: beautiful, energetic, smart, funny, filled with life, brimming with great ideas, and always up for an adventure. We spent four amazing years working and living next door to each other, creating memories that will last a lifetime.

In 2007, I moved to Ireland, but Monika and I stayed in close contact. We both got married and started planning our families. Little did we know, her life was about to take an unexpected turn.

The Unexpected Challenge: Call that changed everything

One day, I received a phone call that would change everything. Monika had been diagnosed with systemic scleroderma, a rare autoimmune disease I had never heard of. This disease, characterised by its degenerative, progressive, and supposedly incurable nature, affects collagen found throughout the body, from the skin to internal organs. To make matters worse, Monika was diagnosed with the diffuse form of the disease.

The primary areas impacted by her condition are her skin, musculoskeletal system, and digestive tract. She also experiences several related symptoms: Raynaud's syndrome, microstomia (tightened, reduced lips), sclerodactyly (curved, claw-like fingers), persistent painful sores on her fingers, and bone loss in her jaw and some finger joints.

Her life was turned upside down. Just a few months after scaling her first 4,000-meter peak, Monika had days when she couldn't even get out of bed. Over time, she lost half of her body weight, and her mobility became significantly restricted. She now struggles with constant pain, ranging from mild to severe. Everyday activities that come effortlessly to a healthy person take her several times longer, if she can manage them at all.

As her condition advanced, she had to leave her job and stay at home. Undeterred, she launched her own 'handwoven products' workshop to maintain her mobility and hone her craftsmanship: https://dziva.sk/.

For Monika, weaving has been more than just a hobby; it has become a form of psychotherapy and at the same time physiotherapy, offering a sense of accomplishment. Although the progress is slow, it means the world to her, serving as a protective shield for her already fragile mental well-being.

Over time, even this endeavor became challenging, so she welcomed an assistant to help turn her visions into reality. The breathtaking, colorful creations from her workshop are a testament to her resilience and creativity!

Daily Struggles

Systemic scleroderma doesn't just cause chronic pain; it also changes one's appearance, stealing a person's identity. Monika has had to cope with this, in addition to the progressive nature of her disease and the loss of independence it brings. Her daily life is a constant battle, but she faces it with incredible strength and resilience.

To give you an idea, just to name a few things:

• Monika can't sit for longer time without experiencing pain, she carries a small pillows to rest on benches during walks.

• She requires a special anti-decubitus mattress to sleep on, as she has lost significant weight and staying for a long time in the same position would cause decubitus.

• Daily physiotherapy sessions (costing €20-40 each) are crucial. These are not your typical sessions though. They can last up to two hours, focusing only on her face and oral cavity to prevent stiffness. (With the progression of the stiffness, she can no longer properly close her mouth.) Nevertheless, she needs work on her whole body.

• Nurses visit her to change her Peripherally Inserted Catheter (PIC), which provides parenteral nutrition and Ringer's solution instead of normal food. Her body doesn't absorb nutrients properly, and she has minimal intestinal peristalsis. These treatments last normally 9-15 hours, and she's grateful when they occur at night, allowing her some freedom during the day.

• Every two weeks, Monika attends acupuncture sessions to help manage her pain and symptoms.

• She needs specialised laxatives and infusion sets, which she sources from Austria and Germany, respectively.

• Thankfully, her insurance covers her nutrition, amounting to approximately €3000 monthly.

A half ray of light

• Unfortunately, the clinic she attended didn't allow for an individual approach and offered the same treatment to all patients, regardless of their stage of the disease, causing her at times additional pain.

• Monika's rheumatologist is exceptional, conducting consultations and check-ups over the phone when possible, understanding the hardship she faces just traveling to the clinic.

• Despite her mental struggles, Monika remains a fighter. She reads extensively, studies, and explores alternative treatments worldwide. However, these often come at a significant cost.

A moment of respite came when Monika spent over a month at a specialised clinic in Switzerland. Insurance covered most of the expenses, but she still had to pay €600 extra. Surrounded by experts, she received personalised treatments like thermotherapy and other specialised treatments. Though brief, this experience was an oasis for her.

The Road Ahead

Back home, Monika faces new challenges: sickness, jaw infection, and constant tiredness due to sleepless nights. Monika's mobility continues to worsen. What she can manage to do today, might be impossible for her in just a month.

She yearns to try new treatments but lacks the financial means.

Systemic scleroderma is incurable, but symptoms can be alleviated with the right treatments and adjusted healthcare. She has found promising options:

• She would like to spend at least a few weeks in a specialised rehabilitation clinic in Bratislava, which, even if approved by her insurance, will require her to pay out-of-pocket due to its private nature (I googled and found it costs for a self-paying person €154/day for accommodation and food, which she won't even be able to eat.).

• A special consultation at the University of California – Los Angeles, which is however costing $1000, where top experts can create a tailored treatment plan for her. The treatment will depend on the outcome of this consultation. It is all too expensive, so she is looking for other alternatives.

• In the past she received a grant, which allowed her to pay for personalised probiotics and they really helped her (€1000)

• More hours of physiotherapy per week

• A new stand for her infusions (approximatelly €300)

• New weaving machine (I know she is currently saving for a new one, as the one she has uses hand levers, which she can barely hold now. She would like to get a pedal one. Not a medical thing, but knowign how much weaving mean to her.... mentally important one! These machines cost around €3000 - €4 000.)

Final word and plea

When I proposed this fundraiser to her, she humbly replied that she only needs a bit of self-love and for people to send her good thoughts and prayers...

Monika's determination and courage are truly inspirational, but she shouldn't have to face her battle alone. To help her access innovative treatments and make her life more comfortable, I'm embarking on a walking challenge this month. My goal is to walk at least 500,000 steps in October, with each step symbolising our collective support for her.

Remembering how I described her earlier... she remains this amazing person: beautiful, smart, funny, and bursting with fantastic ideas and a love for adventure. Tragically, the disease has stolen her energy and slowly reduced her capacity to express her wonderful self and follow her dreams.

Together, we can make a difference. Please contribute to Monika's fund, knowing that every euro brings her one step closer to the care and opportunities she deserves to live a better, less painful life.