My name is Katja. I am 41 years old and I come from Slovenia. I have Lymphedema. When I was 39, I was diagnosed with cervical adenocarcinoma. I was highly motivated to beat this cancer because I have three children and I know that they need a healthy mother to be there for them as they are reaching their goals and finding their place in the world. So I gave it all my strength.
I had surgery in April 2015. Fortunately the surgery alone was enough to remove all cancer cells from my body. They did radical hysterectomy with 25 lymph nodes dissection. No one ever warned me of lymphedema; all they talked about was severe menopause. So I thought – all women go through this, so will I. But two months after the surgery I experienced some strange pain in my leg. I told my doctor about it and she said it was due to some nerve damage during the surgery and to just give it time to heal. Then I started experiencing some swelling in my groin area. Again I contacted my surgeon and she said I went through a difficult surgery and to just give it time.
The swelling put great stress on my body and I wasn’t able to do all my daily routine. So I started researching on my own. I found one doctor in my country who had some knowledge about LE. She prescribed stockings and manual lymph drainage, but she didn’t know anything about bandaging. The therapy did ease some of my symptoms but it didn’t take the swelling away completely. So my search continued. That’s when I found you, dear Sarah (Founder of Chronically Motivated). Although we haven’t met in person yet (I believe that some day we will) you made such huge impact on my life. I became chronically motivated to get help and return my life to the state I am happy with. I am now waiting for an appointment with a Lymphedema Surgeon in Paris (4th of April) to see if I can get surgery. (Editors note: Katja had surgery, a lymph node transfer and SAPL in July 2017 with Dr Corinne Becker).
I sometimes feel depressed because of my condition. I am not able to wear cute dresses due to heavy compression- but there is always an alternative. I wear MEDI custom made pantyhose class II and medi forte thigh highs in compression class II. I wear my stocking with tunics or oversized pullovers. I still struggle with what to do in summer! I sometimes put on solidea medical leggings but they don’t contain the swelling as medi ones do.
I am slowly coming in terms with my condition. I am trying to accept my body. There are good days and there are bad days. When I feel down, my kids are usually the ones to bring my spirits up.
I try to avoid sugar and white flour, I eat fruit and vegetables to balance my weight. It is hard because I am in menopause and fat just keeps coming around my belly. I try to have regular walks. Walking is my favourite form of exercise. In summer I try to swim a lot. I don’t like swimming in pools, I prefer the sea. As my husband works as a teacher during summer holidays, I get plenty of opportunities to swim in the sea. I was doing 30 minutes aerobic exercise (Jillian Michels shred off exercises available on youtube) before my surgery. I really miss them. I am not able to do them because they involve a lot of jumping and I still have weak pelvic floor muscles so this is not the perfect exercise for me. I am looking into yoga now. Haven’t tried it yet, have trouble finding the time. But I am sure I will in the future.
As far as every day life is concerned I try to do my best to do all my chores. I am a primary school teacher and I truly adore my job. I love working with children. They are so inspiring. I tend to get tired more often than before lymphedema. So when I come home from work I put my feet up for an hour and then I spend quality time with my family in the afternoon. My children are a blessing. I personally think having children is my hugest success in life. Although it is sometimes hard and exhausting at the end of the day, it is a worthwhile job.
The thing I struggle the most is money. Lymphedema is really an expensive disease. My insurance company only pays for one stocking per year and for 10 sessions of lymph drainage. The rest is on my shoulders. They also wanted to put me on disability but I refused because I would get less money. And I asked them how can I pay for my treatment and I need money for my family also. My children cannot be blamed for my disease.
When I feel down I visit Instagram and find mental help from LE sufferers. We have to keep the spirits up, we have to fight. There are so many beautiful things waiting to be discovered. Let’s go and find them.
Where you can find Katja: