I thought it was about time to update my Ankylosing Spondylitis (AS) story and share more about my struggle with Chronic Iritis. Both conditions are pretty much a thing of the past. Did I really say that? Yes, I did! This last year has been a year of self-discovery, of realizing we can heal ourselves, understanding the power of the mind as well as uncovering a new-found gratitude for every struggle and for these diseases themselves. I feel blessed and honored that you are here and I hope my story and the information below inspires you and helps you to recognize you have more control over your health than you ever realized.
If you read My Ankylosing Spondylitis Story or follow me on Instagram then you know I have been on a long journey to healing. I have tried just about everything in the book and a large part of my focus over the last few years has been predominantly diet and nutrition. I have also focused on reducing my toxic load by cleaning up my personal care products, home cleaning products as well as eating almost all organic. From a nutritional perspective, The Paleo Diet and The Autoimmune Protocol have played a huge role in healing my gut (it is believed that many people with autoimmune conditions have gut permeability or a leaky gut) as well as reducing my AS pain to almost nothing within just a few weeks. I still remember the huge difference I felt in just two short weeks after starting the autoimmune protocol. I could not believe it! If you want to learn more about why these diets are so healing for autoimmune conditions here is a great resource.
What I found over the course of several years is while diet and nutrition can certainly help with inflammation and pain at the end of the day they are a management tool. Through my own trial and error, I realized I was still missing the mark. Even though my near perfect diet helped my AS immensely I could not get my iritis under control. What I found is a much broader approach needs to be taken to fully heal from chronic illness. To heal we need to focus on mind, body and spirit.
I had the diet thing down so nutrition was covered and given I am a spiritual person and have a strong relationship with God I felt things were good there too. The one facet that I was missing was the whole idea around the mind body connection which I thought I understood. Little did I know I was only scratching the surface. It’s not just about practicing yoga, meditating or focusing on a positive attitude. These things can play a role but I feel a deeper understanding is necessary. It’s simple, yet much more complex than you may imagine. There is so much to be learned about the connection between the mind and the body but for simplicity sake I will share the main “ah ha” moments that I believe lead to my healing.
It all started with Instagram. When I first signed up for Instagram it was merely to share what I was eating on the autoimmune protocol diet as well as to share my story with the goal of helping and inspiring others. After a few weeks, I decided to search under the hashtag Ankylosing Spondylitis. I found a surprisingly large number of posts, however the majority felt negative in nature to me. People complaining about their situation, images of immunosuppressant drugs and IV’s. Not exactly the inspiration I was looking for. Don’t get me wrong. I’m not criticizing those struggling with autoimmunity who may come off negative or make the choice to use pharmaceutical drugs. Trust me, I was there too. People struggling with daily pain and serious chronic illness can easily go to a dark place. When you are restricted from enjoying life’s simple pleasures it’s easy to allow your disease to take over and fully control your mood and thoughts. To top it off society tells us that our doctor knows best and the reality is many times a diagnosis instills deep fear in us so if your doctor says take this drug or you will have serious permanent damage to your spine, eyes, joints etc. (this happened to me) you do it. No judgement here. When I finally received an AS diagnosis, I took one Humira shot because my doctor scared me to death. However, my intuition told me it was not right, it was not healthy, it was not the lifelong answer to my disease and it was only covering up the “root cause” behind why I was suffering from these diseases in the first place. I took one shot and never another. The reality was my doctor did not even know why I had an autoimmune disease in the first place. Did you know generally the cause of autoimmunity is unknown? It is! If there is no understanding of the cause of autoimmunity then how can one person, my doctor, decide what is best for me when he does not even understand why I have it in the first place. If there is one thing I have found throughout this entire journey it is to listen to your gut. Our doctors are our partners; however, we know ourselves better than anyone else. Always listen to what is inside. If something does not feel right it’s not. Throughout my healing, I have never stopped listening to that inner voice, that inner feeling. I can’t stress how important this is!
Right after my diagnosis and decision to not take immunosuppressant drugs I found Paleo and The Autoimmune Protocol. Both lifestyles did wonders for my pain. And when I say wonders, I mean wonders. Coming from someone who tried all sorts of diets in the years leading up to my diagnosis this way of eating made an undeniable difference. One big component of Paleo and AIP is eliminating all grains, beans and other foods high in lectins as well as focusing on nutrient density and healing foods. They also taught me the benefits to consuming animal products from animals raised the way nature intended. For much of my life I restricted animal products like meat and eggs but once I learned the nutrient profile of these foods is so incredibly different I found my body starting to thrive.
I was doing quite well with diet alone. Literally, most of my AS pain was gone. I could lay flat again without feeling extreme pain. I could work out and pretty much do everything I did before things had gotten quite bad. I woke up and rolled out of bed without that fiery feeling going down my spine (you know what I’m talking about) when I stretched and best of all my hips no longer ached daily. I could get through a day at work without shedding tears of frustration, anger and hopelessness.
That was until about a year later when I woke up on the first day of vacation in Telluride, Colorado. Before I even opened my eyes, I knew I had an Iritis flare. I could not believe it. Number one, I had never had a flare besides one time 3 years earlier and number two I was on vacation! Iritis is considered a complication of AS or a secondary autoimmune disease. Some with AS will never experience it while others, like myself will struggle to control it. I had it one time and honestly never thought about it again until this day.
Iritis is hard to describe. There is pain in the eye and face, crazy sensitivity to light and eye redness like the worst blood shot eye you have every see. Once you experience it you don’t forget it and you know when you have a flare. Given it was the first day of a special vacation with my son and husband and we were visiting one of my best friends in a magical place, sadness and upset immediately set in. I was ok until we visited the local eye doctor who happened to know a lot about iritis. She informed me I was flaring in both eyes and asked if I was on an immunosuppressant drug. I told her I was not and how great I was feeling regarding my ankylosing spondylitis. She informed that to have iritis in both eyes is quite rare and that I may think I have things under control but this is far from the case. It took all the strength inside of me to hold back tears. All the hard work I had put in over the last few years regarding diet felt like it meant nothing in those few minutes. I questioned everything I had done up until that point. It’s crazy how one person can make you feel so deflated so quickly. From this day forward until almost two years later I struggled, and I struggled hard with non-stop, constant iritis flares.
In addition to my diet I did everything and I mean everything you can think of to find a remedy. I researched in every free second I had. I even went to an alternative medical clinic in Atlanta which was a time and financial commitment. I was determined to figure it out and to heal. My AS symptoms continued to be mostly non-existent but my eye issues just progressively got worse and worse to the point that I had to take oral prednisone in addition to predforte and durzol eye drops to keep things calm. I don’t like to take pharmaceutical drugs however, when it comes to my vision I am not going to mess around. Iritis can cause blindness and that is a terrifying thought. Even while on oral prednisone and eye drops as time went on things continued to get worse which brought me back to the Mayo Clinic to meet with my rheumatologists and a new eye specialist. Immediately I heard the words immunosuppressant drug! Those are the words I dreaded most but I was at a place where I was doing everything I could, nothing was working and it was consuming me. It was taking time away from my son, my husband, the things I loved and making it hard to get through a day at work without wanting to just go in a dark room, put my head down and cry.
My rheumatologist and the eye specialist I saw at the Mayo Clinic strongly recommended Methotrexate. Methotrexate is an immunosuppressant, chemotherapy, category x drug and comes with all sorts of scary side effects. The unfortunate reality of pharmaceutical drugs is they come with a list of side effects. So, while they may help one symptoms they will more than likely cause other issues to form. With massive hesitation and a bad feeling in my gut I decided to take it. I was desperate! Desperate for relief from pain, desperate to get back to having a normal life and desperate to wear my contacts so I could go for a run without having my glasses slip down my face. It can take 3 months to see improvements with this drug so I was committed to trying if for at least that long. Every time I took a dose I stared at the pills on my counter for at least 5 min. It was hard to take them because I truly believed this was not the answer. Did I want to be dependent on a drug for the rest of my life? Was it worth all the risks that immunosuppressant drugs bring? Did I want to continue to be a financial burden to my family (immunosuppressant drugs are crazy expensive). One thing many people don’t think about as another burden for a chronically ill person is when you are going to the doctor non-stop and are on drugs the cost is huge and impacts your entire family. After a few weeks, I just could not do it. I had to quit. I felt deep within there were still options for me. I did not believe this drug was it so I stopped.
I continued to struggle the next 6 months even after working with the clinic in Atlanta. Then, one day a picture popped up on my Instagram feed. When I first searched the Ankylosing Spondylitis hashtags on Instagram I came across someone who inspired me. His name was Ralph. At the time, Ralph had a YouTube channel where he shared the things he was doing to manage/heal from his AS mostly related to diet and exercise. I had not seen an image from him in almost a year and sort of forgot about him (goofy Instagram algorithms). It was a warm day and I was sitting outside scrolling through my feed and one of his posts popped up. It was of him on the beach with a beer in hand celebrating his recent marriage. I thought to myself. Wow he is drinking a beer! From all the videos, I had watched on his you tube channel I did not think this would be anything he would ever do. I started scrolling through his feed and found that he had relaunched his website. He had several testimonial videos of people that had worked with him and how they healed from AS. He talked about the mind body connection. I was excited and inspired by the stories I heard so sent him an email almost immediately. I was shocked to see a response while he was on his honeymoon. This speaks volumes to the person he is and his calling to help others. A week or so later I had an hour-long interview with him via skype. We chatted for a while and then he asked me a question. He said, “take a minute to think about it if you need to, you don’t need to answer right away.” I wondered what he was going to ask. Then he simply said, “do you want to heal”? Without hesitation I said yes, yes yes! Yes, I want to heal. Who the heck wouldn’t. What I learned from him next really intrigued me. He shared that many times people think they want to heal. However, they don’t know who they will be without their disease and that can be a scary thought. It’s sounds strange but in a sense our illnesses can define us and though it may not be intentional it can become easy to use your disease as a crutch. Think about it. When you are so consumed with your health and it is all you ever talk about it can seem scary to think about no longer having it. He informed me that you never heal if this is how you think.
Up to that point I had never used my condition as a crutch. I dragged myself to work every day, put a smile on my face and did what I had to do to get through the day. I never used my disease as an excuse for anything. I always felt I was in an uphill battle with it and that at some point I would win. I was not about to let my disease win and fully control me. With that response and assurance Ralph offered to work with me.
For the next 3 months, we met one on one every Friday over Skype (Ralph lives in New York). I filled up 3 notebooks during this time with information galore and made a lifelong friend in Ralph. No one besides myself has helped me the way he has. He taught me so much in this short time and it was life changing. I always looked at my diagnosis as something that would have a positive effect on my life. The longer I worked with Ralph and the more I learned I truly understood that my disease was a gift. I knew deep inside this was happening FOR me not TO me. Even though it was hard to understand why I had these diseases my faith grew stronger and I recognized that there was a bigger reason. Working with Ralph helped me to better understand myself, my belief system and how the mind and body are truly connected. Since working with him over a year ago I have continued studying this subject and the more I learn the more clear things become.
My first a ha was realizing my personality was actually hindering me. If you asked most of my friends to describe me they would probably say I’m nice, thoughtful, will do anything if someone asks and most of all positive. I don’t disagree with any of these things but what I realized after working with Ralph is there was so much I was holding inside and repressing. I know my personality quite well. I am a people pleaser and will do whatever anyone asks. I’m non-confrontational so setting boundaries is difficult. I want harmony always and am willing to suffer in silence to get it. People always come to me for help and to share their struggles because I listen attentively and want to help them. I know my personality but what I did not know is how my personality was contributing to my disease and hindering my healing.
Ralph and I had talked about repressed emotions in previous sessions but one day a light bulb went off when he said, “you are repressing a lot of anger”. I thought to myself are you crazy? What are you talking about. I’m the nicest, most caring, most positive person you will ever meet. I’m not angry! Then he proceeded to explain that given my personality I am a people pleaser. I am always doing what everyone else wants me to do not what I want to do. I don’t show that I am mad because I am non-confrontational and don’t want to upset anyone. So, in turn I repress anger. Make sense? Here is an example. It’s Friday night and my friends ask me if I want to go to a movie. I say to myself heck no I don’t want to go to a movie. I’m tired and want to go home and lay on the couch. But what comes out of my mouth is sure, let me know what time. Even though I may end up enjoying myself, inside I am holding on to the fact that I did something I did not want to do. The reality is I am upset that I am there and repress that emotion. I realized in that moment just by accepting my personality and acknowledging what I was doing I could let go of so many feelings, thoughts and emotions. It’s not that I have changed my personality. I’m still non-confrontational. But, what I have changed is my acknowledgement about the decisions I make.
The second a ha I had was learning that the mind doesn’t know the difference between reality and imagination so when you are fretting in one way or another over yesterday or tomorrow, something big or something small, you are telling yourself a story. The problem is your mind does not know that it is not really happening in that moment that you are thinking about it. A simple thought can reeve up your fight or flight response which causes a whole host of problems in your body including chronic disease. One thought is not going to bring on disease by when we live a state of constant worry, fear and stress this is when trouble starts. Understanding this simple fact gave me so much control of what thoughts entered by mind and how I dealt with them. When I learned how to let go, accept the past, not worry about the future and so forth my iritis symptoms started to improve rather quickly. The incontrollable became controllable. Over this last year, I have still had flares from time to time, but I have been able to look at myself and current situation and dig deep to identify what it was that I was letting get to me. I have almost always been able to pinpoint the problem and when I do and acknowledged it my iritis goes away. I know you may be thinking to yourself that this sounds crazy. Sometimes it is still hard for me to believe that I am in remission of two conditions that controlled my life for so long. But, the more and more I study the mind body connection the more I understand why I have improved so much.
The third a ha was gaining a better understanding about my belief system. This has been another area of focus for me. After looking at the beliefs I had built throughout my life about both myself and the world around me I realized most of them were not even true. So, where does our belief system come from throughout our life? It comes from our experiences, our families and society. Until we are 6 years old we are completely functioning in the subconscious mind. This is the reason children live in the moment and can find joy in just about everything. During these precious years, our experiences start to create beliefs about ourselves, other people and the world. For example, my entire life I have struggled with thinking I was overweight and I now understand where that belief came from. It came from people around me (not my immediate family) who compared me to my twin sister as a child. She was very thin and I was not. In comparison, I was bigger than her however, I don’t know that I would call myself fat. We have different body types. I am shorter, more muscular and she is taller and more slender. There was nothing wrong with me but words used about my weight literally have affected me my entire life. When you start thinking about all the things you believe to be true and why you believe them to be true you start realizing how much nonsense there is to all of it. Just because someone said this or that does not mean it is true. When it Just because the media broadcasts on negative things happening in the world it does not mean the world is an awful place. The best part about our belief system is that we have the power to change it and that is exactly what I have done.
The fourth a ha I had over the last year and a half is the more time we spend on the disease itself (researching, thinking about, being fearful etc.) the more we manifest it. Again, this may be a hard idea to grasp but I truly believe that I was spending so much time on the iritis itself that I was manifesting it more and hindering my healing. You know how I said that once my pain from AS went away from diet changes I pretty much never had issues with it again? Since I was living pain free I forgot about the disease. When you are in pain all the time it’s hard not to focus on it. But, by focusing on the pain, by waking up and looking for the pain and by constantly thinking about the disease or whatever it is we are struggling with we will never be able to rid ourselves of it. Once I had the realization I stopped researching, I visualized waking up in the morning with no iritis and I started to not believe in the disease itself.
There is one last thing I want to share that has been huge to my healing which has to do with genetics. Everywhere we turn we are being told that if we have this gene or that gene then we have a high risk for developing this disease or that disease. Yes, if we have a specific gene such as HLB-27 in the case of AS and Iritis we may have a greater chance of developing said condition. However, you are not doomed. Just because you have a genetic predisposition to something does not mean you will get it. In all my research, I have found that there is only a very small percent of diseases that are truly genetic. What I have learned in my ongoing research and continued studies of the mind body connection is that it takes more than a gene to develop a disease. It also takes an environmental factor. This could be several things such as stress, toxic load, diet etc. Have you heard of Epigenetics? In simple terms epigenetics mean that it is our environment which determines which genes are turned on or are switched off. It seems most people suffering from chronic illness think they have no control or way out. But, the reality is the body created the disease and the body can get rid of the disease given the proper environment. After learning more about epigenetics, I realized I had total control over my destiny which helped to remove the fear I had been feeling for so many years. Can you imagine the difference if your doctor explained that there are more things you have control over with your disease then you think? All I heard from my doctor (whom I really respect as I know is a doctor because he wants to help) was these are lifelong diseases and incurable, you may be in a wheelchair by the time you are 40, you will probably need to have early hip replacements, you are playing with fire by not taking an immunosuppressant drug. You get the drift. My doctor instilled fear in me from day one and made me feel as though I was a helpless victim instead of strong woman with grit to get past this. I now believe remission is our genes being turned off. If I start to have AS symptoms or a small iritis flare I can almost always pinpoint what is happening in my environment to cause it. I now take all symptoms as my bodies messaging system that something is not right. It’s like a tap on the shoulder to wake us up and to guide to focus more on ourselves, our minds, our spirituality and our health.
I hope my updated story brings you hope and inspiration that you can heal. You can! I have witnessed the healing of so many by using both nutrition and the mind body connection. You can’t truly heal without both! The last thing I will say is I am grateful! I am grateful and so thankful for these diseases. They have changed my life for the better. 10 years ago I would not have been able to say that. But, through this journey they have taught me to truly live life, to be present in every moment and to honor the struggle. My diseases have been the greatest teacher I have ever had and have allowed me to find my life’s purpose which is to help others struggling with their health or life. My health struggle inspired me to enroll at The Institute of Transformation Nutrition so that I could become a Certified Transformational Nutrition Coach. I graduated in 2017 and in 2018 I took my knowledge to the next level and became a Certified Autoimmune Disease Specialist. Working with a coach was the best decision I ever made and I want to be able to do the same thing so that I can help all of you!
In Love, Health + Gratitude,
Katie
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