Consider Yourself Warned: This blog post has no pictures, no fun links or graphics. It felt too serious for all of that jazz. Next time though, next time will be more fun.
People do not see what they do not understand.
Talking about my health journey is incredibly difficult. There was a time where I tried to be super open and transparent about my health but I found myself quickly burning out. I learned that many people see the world through their own understanding of it. When someone asks me a question and I answer, that information is then compared to their own life experiences and knowledge, and what I said is either accepted as truth or denied and needs fixing. If accepted as truth we spend some time agreeing but don’t really get anywhere. If denied I am either stuck defending myself or my medical care provider, or am having to listen to what this person knows about what or who will fix me or make everything better. These people are good hearted and intended of course, but being open and transparent was not helping me in any way.
Therefore, I got burnt out and I went the opposite direction and became completely silent to the point of secrecy. We (myself and my family) move around from time to time and are often in the presence of people who do not know us, and many do not even know that I am chronically ill. Though this is easier than being open and transparent, it comes with its own frustrations. People do not see what they do not understand. And those who live with anything that can not be visibly and obviously seen, understands this. Again, good hearted and intended people, it’s just the way of life.
Maybe now that I have experienced both ends of the spectrum I can walk somewhere in the middle?
What is my diagnosis and what am I doing about it?
I have Lyme disease. I actually have a list of chronic illnesses, all tick borne, but the term Lyme is what is recognized so that is what I use. I was first infected in 1996 where I was told I had mononucleosis and ringworm. I have been sick ever since. I have seen every doctor and endured all the tests they ordered. Finally, 20 years later in 2016, my legs came out from under me. The details are too upsetting to talk about but I became incredibly ill and I was running out of time for a medical intervention. A high school friend took that role on and she sent me a documentary of people living with Lyme disease and other tick borne illnesses saying one of the girl’s in the documentary reminded her of me. That was the beginning of my real health journey. I called one of the doctors in the documentary, paid to have my lab work done, and finally got the diagnosis I should have gotten 20 years earlier.
The CDC states “Early diagnosis and proper antibiotic treatment of Lyme disease is important and can help prevent late Lyme disease.” The proper antibiotic treatment being 30 days of antibiotics. Many people have received this and still suffer greatly. But some of us never got that early diagnosis and our 30 days of antibiotic treatment and this disease has brought on pure havoc. We do not have “late Lyme disease” nor do we have “chronic Lyme disease”, we have a disease that was never diagnosed nor treated which has been living and thriving in us untouched for years, and for some of us decades.
To explain in an oversimplified manner, because the CDC states that Lyme disease can be treated with 30 days of antibiotics, insurance companies do not recognize Lyme disease past 30 days of illness as a legitimate illness and they will not pay for our medical treatments. Doctors who are brave enough to treat us were being sued by insurance companies and have been forced to either comply or take their practices independently. This means the infected people need to find a way to pay for their treatments out of pocket. (This has nothing to do with a patient having or not having medical insurance. I am insured and I still pay for most of my care out of pocket.) This fight has also pitted doctors against doctors so most of us patients can only get care from our specialists as our main providers do not take the time to learn about tick borne illnesses and some even go as far as causing trouble for the specialists who are helping us.
A quick google search can bring you stories from all over the world of what people have had to endure to “get better” only in time to find their health slipping again. Sometimes a relapse is brought on simply by time, sometimes a pregnancy, a period of great stress or grief, or another illness comes on and Lyme starts causing complications. Mine was simply time. My 3 years of past treatment were near unbearable but they brought me my quality of life back. I was back to walking, driving, living my life with my husband and children. Now that my illness is showing itself again I feel as if those bad days are speeding back toward me. But, I refuse to welcome them because this time I know what I am dealing with and I am going to be brave and face it.
I am with a new specialist being that my last specialist is in the state of New York and visiting his office is hard on me, on my family, and it costs more money then we can find. I also keep current with my primary care and accept any attention from non Lyme Literate specialists that are willing to take the time to see if they can be of help, though often those visits only leave me feeling tired, hopeless, and with more co-pays to pay.
Someday maybe I will be brave enough to tell you the financial burden of my care, but I am not there yet. It’s a lot. I knew I needed to do something to find the money, especially while I was still on my feet, and really once soap was on the plate there was no thinking about it, we knew soap was our next adventure.
How did soap even become a topic?
I have always dreamed of making soap, I mean, haven’t we all? Maybe someday when I actually learn how to make soap, when I have my life together, and of course when I win the lotto I don’t play to buy property I can’t afford to buy goats to take care of to give me milk for my dream soaps.
I did not recognize that my someday was today because my life looks nothing like what I had dreamed it would. I did not know how to make soaps, my life definitely was not together (whatever that means), and still no property. My now 11 year old son notified me that I can start my dream today. He got me started by starting his own summer long soap business with a program in 4-H. I helped him learn how to make soaps and get a business started, and then he handed the soap making over to me which I have been happily at ever since.
My son did not step out of the business though, he is my top salesman today. My whole family is involved and a large part of what you see as Smug Dog Soaps. My husband started a website for me and he helps basically everywhere he is needed. He even goes as far as to taste test the soaps for me when he is around (it’s called a zap test). My oldest child created our logo, she is helping me learn how to have a presence on Facebook and Instagram, and she helps a lot with decorations and photography. My middle child does everything that is anti-social from creating logos, crocheting gifts for our gift boxes, and she is learning to create content to entertain you all.
Soaps are not just a way to help with the pilling medical costs but they are something for me to be passionate about during a time where it is hard to feel past the scars of my health, a hobby for my family, growth for my children, and many of the costs that we spend to make our soaps go into our community here in the PNW which we have grown to love. As you can see when you support Smug Dog Soaps, you don’t just support me with my medical costs, you support a whole family who is learning and growing together.
Living life chronically sick.
I just want to say that I understand the many changes that need to be made when you learn that you are dealing with a chronic illness whether you get your diagnosis or not. I am in no way believing that I understand your personal walk and struggle, but rather I have been through the cost and headache of changing hair and skin products, cleaning products, clothing, anything I put in, on, or around my body.
It is important for us to give you a soap with ingredients you understand, ingredients you can feel good about using, and all while keeping our soaps as affordable as possible.
Do you have Lyme or do you know someone who does? What I cannot and can do for you.
I cannot take or give medical advice, I cannot explain either any of the illnesses I carry or the politics around them (you are super welcome to do your own research on the subject though), I cannot give intimate details of my life or my health journey that I am not ready to give nor do I care to defend myself and what you do not know about me.
I can and will chat with you, message with you, and just be your friend. I am sorry you or your loved one are experiencing this. Tick borne illnesses are silent diseases. They hide behind the protective coating of “you look great” or “your vitals are fine”. Though I'm sure you look great (and smell great with the help of our smug soaps) I know that you are not fine. You should not need make anyone believe that, you deserve to be heard.
To Sum This Up.
To sum this up, this is not an explanation of me, it is an explanation of a struggle I deal with and how that struggle gave me the gift of soap.
You do not have to support our business nor purchase our soaps for us to be friends. There are other great products and soap sellers out there, or maybe you are perfectly happy with what the grocery store has to offer, or maybe you are a fellow soap maker yourself! Let’s still be friends.
If you do choose to support us by purchasing our soaps, we wanted to give you the opportunity to get to know a bit about who you are supporting and what a big deal these soaps are to me and to my family.
Either way, thanks for taking the time to read this and I hope we can get to know each other more.
Stay Smug.
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