This is the post that has been waiting an entire year to be written. This is the post where I make myself vulnerable and tell you some private things about myself. My name is Katja, and I have Lyme Disease.
This past week, I celebrated the third birthday of Savory Lotus. Never in my wildest dreams did I ever imagine that I would become a food blogger. But just look at me now! What started out as a creative outlet for a burned out mama has blossomed into a life changing career. For that I am grateful.
With each passing milestone, we get the opportunity to reflect and to assess where we have been and where we want to go. I want Savory Lotus to grow along with me, reflecting where I am at in my own life. So I have decided to do something that I have not done much of here before: I’m going to get a little personal with you all here today. Hang with me here. This is a long post.
My life is full of so many beautiful things: my 2 sweet daughters, my amazing husband, my supportive community of friends and family, and so much abundance. I strive to be a good example to the people around me, and I pride myself on being genuine and authentic. So in order to be a more authentic version of myself, I have decided to talk about the chronic health issue that I live with daily.
One of the things that I attempt to do as a food blogger is to make things look beautiful. I try to make pretty food. I try to take pretty pictures. And I try to show what a healthy lifestyle looks like. I personally follow several blogs myself that are loaded with amazingly beautiful images that make life look perfect. But life is not really perfect, now is it?
Behind each perfect looking food blog is a person with a real life, a unique story. And this is my story.
My name is Katja, and I have Lyme Disease.
Just writing that sentence here on my precious blog is hard. I want my blog to be pretty. I want my blog to be happy and healthy. I guess I’m somewhat of a perfectionist. But life is not always like that.
Five years ago, I was a relatively healthy woman living my life, raising my teenaged daughter, doing yoga, eating healthy, traveling as often as I could. I had noticed that I was a bit more tired than usual. But I was working hard and playing hard. Life was good. Then I got pregnant with my second child. The pregnancy was not as easy as my first, but I was 15 years older than the first time.
After sweet Pearl was born, I began to notice that something was not quite right. I was even more tired than before. But I did have a newborn. I just didn’t feel like myself. A year and half goes by and things were not getting better. I was still tired. I was moody. My digestion was starting to be really off. My belly hurt when I ate. I was bloated and uncomfortable after meals. Something was not right!
I did eventually go to my doctor to talk about my health. I got countless blood tests and procedures done to try to figure out what was happening. No one had any answers for me. My gastrointestinal specialist told me I had IBS (irritable bowel syndrome.) But I KNEW it was more than that. I wanted to know how a healthy woman goes from feeling good to feeling so sick in such a short amount of time.
Long story short, it has been an incredible long journey to figure out what is going on, which is the case for many people with Lyme Disease. Luckily I was able to find someone who could finally help me. Through connections I made from my blogging community, I met a Functional Medicine doctor who worked with me to improve my digestive issues. After almost a year of working with him, something was still off. I could feel SOMETHING inside me that was not right. I pushed for more testing. I wanted to know. That’s when I got the call. “Katja, you tested positive for Lyme Disease.”
That was a little over a year ago. And my life has not been the same since. At first I was in a bit of denial. Then I got a little angry. Why me? Then I got super aggressive about wanting to just treat it and be done. Now I am settling into the fact that this is my life. This is the work that I have to do. And I can even begin to see some of the gifts that it has brought into my life.
If you have made it this far, thanks so much for reading. I’m just a person who wants to be heard and acknowledged. My story is important to me. I am a real person with a unique story. My life is not perfect. And I want to share my story in case it might help someone else who is struggling.
6 Things I’ve Learned from Having Lyme Disease
1.Life is now.
Life is precious, and not a single moment of it should be wasted. Coming to terms with my chronic illness has made me realize how important it is to savor every moment. I no longer have the time or energy to waste on things that do not serve me. I have made my family priority number one in my life. I have created a work life that allows me to actually have a life. Working a job day in and day out that makes you unhappy is a waste of time. And can make you sick. Healthy living is finding a balance with it all. And what a gift it is to be reminded to enjoy the simple things.
2. Life is a journey.
Once I got over the initial denial and anger of my diagnosis, I wanted to just deal with it and be done with it. I wanted to treat aggressively and quickly. But that is not how Lyme Disease works. Once you have had undiagnosed Lyme Disease like I have, it becomes a chronic illness that is difficult to treat. This will be a lifelong journey for me. Even after finishing treatment and putting my Lyme Disease into remission (hopefully!), it will always be something that lives in my body. It will be my work to keep my body healthy and my immune system strong so I do not have a relapse.
It’s really amazing to look back at my life and realize that everything that has happened to me so far in my life has led up to this moment. My lifelong obsession with clean living, my 20 year yoga practice, my training in Ayurvedic Medicine. my 11 years as a registered nurse, all the people I have met and the connections I have made, and my super amazing family and support system have all prepared me for the daunting, scary, and long journey of healing from Lyme Disease.
The biggest lesson here for me is that I am not my diagnosis. There is more to me than the bacterial illness that lives inside me. Having Lyme Disease is just another lesson in life to teach me the things that I need to know. And life isn’t about perfection. Even thought I work hard to style and shoot pretty pictures for my blog, life is real. Life is not always pretty. And it’s OK.
3. Lyme disease is an invisible illness.
People with Lyme Disease often do not look sick. It is not something you see on the outside. It can be hard to understand how a person can be feeling so horrible when they look “fine.” I have some really bad days where I feel like absolute garbage, but my life still has to go on. I don’t often talk about it because it’s just part of life for me right now. And I try to ignore when people get annoyed by my VERY restricted diet that I am on to heal my Lymes. Trust me, I want to be eating ALL THE THINGS too. This has taught me unlimited compassion for others around me. You never know what is happening in someone’s life. I try hard not to judge. I try to see the best in everyone. I truly believe that people are doing the best that they can in the moment. This brings me to point #4.
4. Everyone has something.
Since being diagnosed, I have been pretty open with my friends and family about my health. Being vulnerable in this way has been hard as I value clean living so much, and I have worked so hard live a healthy life. It has been humbling to surrender to something that is completely out of my control.
Something I have come to understand is that my situation is not unique. Everyone has something they struggle with. Everyone has something that challenges their health. Some people suffer from body aches and pains. Some people have digestive issues. I know many people with diabetes. Several friends of mine have thyroid issues. And some people struggle with less visible issues like poor self-esteem and body shaming. It has been such a gift for me to hear other peoples’ stories. Somehow as I have been more open about my struggles, it has invited others to share with me. We can all learn so much from each other.
5. Getting good healthcare is hard to do.
OK, I’m going to try hard not to rant about the healthcare system here. Being registered nurse, I see both sides of it. But I can say that it is EXTREMELY expensive to get good care in the United States. I personally pay out of pocket for almost all of my healthcare. Because chronic Lyme Disease is not recognized as a real thing in this country, insurance does not cover any of my treatment. Due to political agendas and cover ups, it is very hard for people with Lyme Disease to get the support that we need.
And this seems to be true for many other conditions. Big Pharma and insurance companies are in the business of making money off of our misfortunes and illnesses. And it has been my experience that the best and most knowledgeable practitioners are often not covered by insurance – probably because they stray from the mainstream approach and treatment protocols. And like I said, Big Pharm and the insurance companies are about making money, not helping people get healthy. End rant!
6. Self care is important.
This is something I cannot stress enough. Regular self care is what keeps us from being burned out and exhausted. And now more than ever, I have to find time for small daily rituals that keep my body healthy and happy.
The really bummer part about Lyme Disease is that with treatment, things usually get WAY worse before they get better. As the Lyme bacteria is killed off by treatment, there is a buildup of toxins released into the bloodstream. This can cause many uncomfortable symptoms. Keeping the detox pathways of the body open and moving is crucial to my well-being and recover.
This is true for all of us. We live in a world full of toxic chemicals and pollution. We are exposed to so much that is out of our control, even if we live a clean life and eat clean food. There are many gentle detox routines you can incorporate into your life that will support your body’s natural elimination systems. One of my favorites is taking a detox bath.
Again, thanks for reading my story. It is not easy to admit to the world that I am not well. It is not easy to come to terms with the fact that this is something that I will live with for the rest of my life. I have a long road of treatment and self care ahead of me. But I’m still here. MY life is still good. And don’t worry, Savory Lotus is not turning into a blog about being sick. I am still going to keep creating delicious real food recipes for you all and taking pictures. I’m going to keep doing what I love because it makes me happy!
Want to know more about Lyme Disease?
I highly recommend watching the informative and eye-opening documentary, Under Our Skin. Before I was diagnosed, I knew very little about Lyme Disease and the controversy surrounding it.
I also HIGHLY recommend reading Healing Lyme by Stephen Buhner (the NEW 2nd edition). It is by the far the most well-researched book on Lyme Disease that I have read. It is very informative and eye opening.
I would love to hear your thoughts and stories. Leave me a comment below.
photos by Dawn Heumann Photography