The last few years have been challenging to say the least. It has taken me a while to get to this place of sharing my journey with both endometriosis and interstitial cystitis. Most of all it’s been an emotionally difficult experience grappling with the threat of infertility. At a time when we hoped to be starting a family, we found ourselves fighting for answers for the mysterious illness that left me barely able to get out of bed every day. We had to learn how to persevere and endure it all while maintaining faith in God’s timing. Through this journey, Micah and I realized our dream of having children together and believe and hope we will be able to start a family soon. Keeping the faith has become my life’s mission throughout this whole chronic illness journey. This experience has been heartbreaking, terrifying, excruciatingly painful, draining, hilarious, and joyous all at the same time. I learned how to find joy in the little things in a way that I would have never learned before this experience. This has been the opportunity of a lifetime if you ask me; my eyes have been opened to the chronic illness community at large but more specifically how women are treated in medical settings in the US. Often our symptoms are ignored or dismissed because we look too good to be sick and what’s more, the old notion of hysteria is still a prevailing assumption among medical professionals. I also understand how unpredictable a chronic illness can be when one day I can walk 3 miles and the next I can’t get out of bed. Chronic illness takes everything from you except your will to believe and trust that one day this will get better and even then, it feels like pulling teeth to force yourself to have unwavering faith.
Somewhere there is someone searching for answers for their symptoms right now. Maybe you’ve been dismissed by doctors and feel there is nowhere to turn. Maybe you have exhausted all medical imaging and blood work with fewer answers than what you started with. Maybe you feel you can’t take another day in pain. Maybe you wonder where God is in all of this. Please don’t give up hope yet. It might seem hopeless as if there is no light at the end of the tunnel but that is not true. One day the pain will lessen and you’ll be able to take a deep breath again. It’s easy to give up hope when your body feels like a prison. I urge you to keep pressing into the belief that better days are coming.
Let’s face it, Chronic illness is a difficult “club” to be a part of in this world. The price of membership is astronomical. Not only did we not willingly sign up for this but for the most part it feels like we’re not allowed to talk about it. Healthy individuals who have never experienced chronic illness tend to not want to hear how impossible even simple tasks can be, especially when the illness is invisible. There are a lot of people who don’t even believe that illnesses like endometriosis or interstitial cystitis can be so debilitating that it’s impossible to work a job or get out of bed. Others accuse us of not believing in the healing powers of Jesus enough. I’ve had someone say, “don’t name the illness or say you’re sick because you are causing the illness to stay in your body.” The worst is when we aren’t believed at all; as if I gave up my dreams so I could happily stay in bed all day. It’s ignorant, gross, hurtful, callous, devoid of empathy, and all too common in our society.
When you join the club of chronic illness you’ll learn to be your own advocate over time. If you’re reading this and have received a diagnosis that is crushing your will to push into the future and you’re afraid you can’t bear to live the rest of your life like this, trust me when I tell you it is worth fighting for your life. I’m not here to judge where you are in your journey or to tell you how you should feel about your diagnosis. I am here to encourage you to not give up hope on getting answers, to share how the Holy Spirit led me to find and receive the best treatment options, and how to educate your loved ones to have realistic expectations moving forward. Not everyone has support around them so if you do have a loved one who is your caretaker and is supportive or best friend that continues to check in on you know that they are gifts from God.
Most of all, if you suddenly find yourself in the Chronic Illness Club and have found my blog along your journey, I want to share from the deepest part of my soul and spirit, I’m sorry you had to join this club. Even though I am thankful to God for making me a better believer through all of this I can’t deny how torturous this experience has been at times. It seems in the Chronic Illness Club, the dues are always increasing and membership is at an all-time high; words like faith and hope sometimes seem forbidden and treacherous among members.
My hope is that by sharing my journey with endometriosis, interstitial cystitis, and pelvic floor dysfunction I can help bring awareness, humor, and hope to others who are battling chronic illness as well as their loved ones who are along for the ride. I hope if you discover this blog on your journey to finding answers that you find relief in knowing you’re not alone in this. Sometimes it feels like I’m the only one who understands what it’s like to fight this battle but the truth is there are hundreds of thousands of other women who share similar stories to mine. I have faith that one day I will wake up with no fatigue. One day I will wake up and eat tomatoes without pain or go for a run without issues. I have faith Jesus will heal the pain and heartache of feeling left behind in life when everyone else gets to move on.
In this series called Chronic Hope I will share my journey with receiving a diagnosis of endometriosis, pelvic floor dysfunction, and flares of interstitial cystitis along with the multi-modality approach I took in treating all three diagnoses. Most importantly I will share my walk with God during this process and how he is responsible for showing me where this information was hiding in plain sight. Please understand these are my beliefs and my journey with God; I understand that when a person of faith is battling these diseases lots of emotions and feelings towards God are felt. We each have our own way of understanding what has happened to us on our own timeline. I don’t want to tell anyone how they should feel about their situation but I do want to encourage you to explore those feelings and beliefs and talk to God about them. In the beginning of this series I will focus more on endometriosis since this is the disease that started it all. I will write about pelvic floor dysfunction and interstitial cystitis in depth in later posts so I can give the attention and detail needed for each disease and condition. If you are unfamiliar with these medical conditions and feel you need a reference to these medical terms and definitions, I have created a cheat sheet for you here.
If you have a loved one that battles chronic illness or are a care taker of a spouse or child with chronic illness don’t give up hope. We see you. We see your sacrifices and appreciate your help even if you don’t always hear or see it from us. My husband is my hero in all of this and I can’t imagine what would have happened if God had not brought him into my life.
Without further ado, this is my journey with chronic illness…
Chronic Hope Part One: The Calm Before The Storm
Growing up I always felt like something wasn’t quite right with my health. From my earliest memories as a child I can remember needing to take naps in order to recharge for the day. Babies and children often need naps so this doesn’t seem odd right? Well, the need for naps followed me into adulthood but I just thought that it was exhaustion from ADHD and my hectic lifestyle. After all, it takes a lot of concentration to perform like other people when you have ADHD.
At 13 I got my first period on a summer beach trip with my best friend and her family. It was embarrassing but I was glad that they were so understanding and helpful. From that moment on I began to experience odd changes in my body that didn’t seem related to puberty at all. In fact, each symptom gradually appeared and eventually became my new normal. I experienced these symptoms separate from my menstrual cycle sometimes, which is why I missed the subtle signs.
Personally, I think the most annoying symptom that I experienced was bloating. I was skinny growing up and after my menstrual cycles started, I noticed constant bloating. It didn’t seem to matter what I ate or what I wore, the bloating was always there. I remember drinking water and becoming bloated and thinking, “what in the world is wrong with me?” I would only get relief and my flat stomach back the week after my period. I had imaging done to see what was causing this but nothing showed up, so I was told there was nothing wrong and to walk it off basically. Trust me, it’s not cute. I hid it well but hiding it has wreaked havoc on my stomach muscles. I also randomly experienced mild constipation the week of my period, low back pain, and hot flashes at any point in my cycle.
In addition to all of those lovely symptoms, I noticed that I couldn’t do certain physical activities like other teenagers could such as running without severe side cramps. The problem was that the cramps were on my right lower abdomen, not under the ribcage. Of course I now realize the pain was directly over my appendix. I thought that’s what they meant by runners cramps and found a love for dance, marching band, swimming, and other physical activities that didn’t cause me as much pain. Until I received expert excision last year, I still couldn’t run without severe cramping and burning over my appendix. I rationalized my pain by thinking that I was more sensitive to pain and maybe that’s why I couldn’t push through it like others easily could. I just couldn’t understand how others pushed through that amount of pain. I kept waiting to one day be able to run and get to the point where the pain subsided.
Little did I know I would be waiting for 17 years before finding relief.
Let’s not gloss over the periods themselves either. They were bad periods. My menstrual cycles have always lasted 7 days with heavy bleeding and cramping; do not pass go, do not collect $200; every time. I can’t even talk about the extreme fatigue I would experience either. All the women in my family have heavy and painful periods and I was told this was normal by family members and my OBGYN. Because I was told these things were normal and society looks down on women talking about their periods, I learned to live with this.
This is your new normal. Deal with it.
I was eventually put on birth control at 16 and found a lot of relief from staying on the pill. Unfortunately that’s also when I began experiencing migraines randomly and would see auras and lose vision in my left eye. The migraines were really tough because the only thing that helped was laying in bed with the lights off for several days. On the bright side my periods weren’t as bad and would last maybe 5 days with normal cramping. The thing is I didn’t realize that I was cramping in abnormal areas. Although I experienced uterine cramping (mid-line cramping), I didn’t experience heavy uterine cramping like my sister. I always experienced extremely painful burning/cramping on the sides of my uterus and on the left and right sides of my pelvis where my appendix and colon are located. I would also experience low back pain and learned to live with my new normal. I took a break off of birth control for a year or so but eventually had to go back on due to the cramping, bleeding, and fatigue.
At 19 years old, that was the first time I heard the word endometriosis.
My nurse practitioner said she suspected endometriosis and wanted me to go on a birth control that would only allow me 4 periods a year. If that didn’t help she said we would need to look into what’s causing my painful periods. She didn’t seem too worried so I told myself that I probably didn’t have it because no one in my family has been diagnosed with this and they all have similar experiences to mine.
Oh what I wouldn’t give to go back to the 19 year old me and knock some sense into me to ask more questions and find out what was going on with my body. I was young and dismissed the idea that something could be wrong, even though I had the “gut” feeling, you know the one where the Holy Spirit is punching you in the chest to pay attention. Fear ruled me in that doctor’s visit and I pushed down the feeling that this might be what was causing me so much pain.
I can remember having talks with my sister and her sharing that she too had terrible periods. Several years back she was diagnosed with adenomyosis (definition here) and needed a partial hysterectomy due to the extent of the disease. Both of these conditions can exist within the same person and often do which contributes to the misguided notion that a hysterectomy is a viable cure or treatment for endometriosis. Adeno however can be cured through a hysterectomy. What is worse is adeno is even less understood than endo, which doesn’t help the confusion among patients, clinicians, and the community at large. The fact that my sister had adeno, my mom had fibroids, and a slew of other women in the family have had reproductive issues all points to a genetic predisposition in my family to develop one of these reproductive diseases or conditions.
I guess the straw I pulled happened to be endometriosis. But I digress.
Birth control offered relief from most of my symptoms. When I was 23, I had a really bad bladder infection that didn’t seem to resolve itself after antibiotic treatment. It took 3 years to get a diagnosis of interstitial cystitis (IC), also known as painful bladder syndrome. I was given a bladder hydrodistension, where they filled my bladder with saline and some meds in order to stretch the bladder out to see the damage to the bladder wall. I was in remission for 3 years after that procedure. This diagnosis was the beginning of a lot of my medical issues and I believe if endometriosis had been removed earlier on in my life, I may not have developed IC. This is my personal opinion of course, based on the research I have done. IC can occur on its own but often it occurs in people with endometriosis, Lyme disease, or autoimmune diseases. Although endometriosis and interstitial cystitis are not autoimmune diseases, there is an immune system component to both endo and IC. Sadly, 70% of women with endo will go on to develop IC.
I was on birth control for 10 years when I turned 29 and this was the first time I experienced the most painful endometriosis flare of my life. The birth control could no longer silence the symptoms at that point and I needed to go to the ER. What they don’t tell you when you’re offered birth control for endo is that it will only silence the symptoms, the disease itself will continue to grow silently. Some types of birth control might be able to slow down growth but this usually isn’t the case with most women. Sadly, I didn’t find this truth out until I found my endometriosis specialist.
By the end of 2016, I could no longer work a full time job due to my increasing pain and fatigue and had to go part time in November of that year. I felt the Holy Spirit pressing into my chest like never before telling me that it was time to take my health seriously. I knew something was wrong and although I didn’t know what it was, I felt that I needed to get my weight gain, diet, and lifestyle in check before I focused on anything else. I grew up eating processed cereals, snacks, meat with every meal, cheese sprinkled on everything, and fast food. To be fair I also had a love of veggies, fruits, and salads. It’s just that the salads were doused with ranch dressing and cold cuts. Like most people, I believed that eating meat and dairy was important to be healthy and didn’t really do any research for myself. I had always been a healthy weight until I began to gain 80lbs from 2013-2016. In those 3 years, I felt so lost with what to do because I had never really tried to lose weight or eat healthy; let’s face it, I never had to think about what I was putting into my body because everything “looked” good on the outside.
Talk about learning things the hard way. I began to pray for God to show me where to look in order to eat the healthiest way possible. Yes, I wanted to lose weight but more importantly, I wanted to be healthy. As some of you already know, I found information on thriving while eating a whole foods plant based diet. This diet was not a fad but a lifestyle change; the change I desperately needed in order to heal my body. If you’d like to read about that experience I have briefly mentioned it here.
At that point I was thankful to God for allowing me to get a bachelor’s in psychology! I know it doesn’t sound like that would be relevant but trust me it is. While I was getting my bachelor’s degree I learned psychological research methods and statistics and participated in several research studies. One of those studies went on to be published with my maiden name included in the article along with the other researchers involved. While those were exciting and educational experiences, I never thought my degree would be responsible for giving me the ability to wade through the nutritional and biochemical research in order to find the answers I was longing for in my diet. Even though I knew how to read the studies, God really paved the way to find the research and discern the truth. I could not have found it without the Holy Spirit guiding me, it was like finding a needle in a haystack.
Once I found the information, I knew I had to make this change and explained to Micah that with or without his help I was going to do this for my health. I was fully prepared to hear him say that he did not want to stop eating animals and highly processed foods and I was planning to make two different breakfasts, lunches, and dinners. Years ago before we got married he told me that his mom and dad went vegan when she had her first cancer scare; he went vegetarian to support her but couldn’t give up the cheese. I remember saying, “I could never do that!” It’s funny how things change and you find yourself doing things you never thought you could do when the Holy Spirit leads you to make those changes. After about a week, Micah agreed to switch to a whole foods plant based diet and my heart was full. Also I’m pretty sure Hell froze over. I had so much peace with this decision. Although I was prepared to do this alone with God, I was glad I didn’t have to, thank you Micah.
I had no way of knowing that this was the first of many treatments that I would implement in the fight against endometriosis, interstitial cystitis, and pelvic floor dysfunction. I had no way of knowing that God was preparing me for the fight of my life by something as rudimentary like my diet yet vital for me to flourish through the journey I was about to endure.
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you,” declares the Lord, “and will bring you back from captivity. Jeremiah 29:11-14
I’m so thankful that I listened to the Holy Spirit by searching for answers and taking action. I knew what I had to do and I was scared to make such a big change. I had faith that God would not steer me in the wrong direction. After all, I was seeking his answers in his word, listening for the Holy Spirit, and doing everything he said to do moving forward. Change is scary sometimes but there were a lot of positives to focus on so the fear couldn’t take root in my spirit. I’m not going to lie, it also helped that all the scholarly peer-reviewed research supported a whole foods plant based diet and lifestyle as the healthiest diet on the planet. It’s not surprising that all the data lined up with what God told me to do but it was comforting in the uncertainty of it all.
Wondering how I could be uncertain even when God told me to go plant based? Doubt will always lurk in the shadows and tempt us to second guess if we heard God correctly. I can promise you that will happen to the beginner Christian and the seasoned Christian alike. No one is immune to doubt and that is why we must stay vigilant in our trust and faith in anything we believe the Holy Spirit is revealing to us, whether that be a revelation, promise, etc. Doubt stems from fear and fear will eat you alive if you do not take control of your mind. You know, stepping out in faith doesn’t always look how people think it looks. People think it means you have no doubt or fear while you’re doing it but that is not always true. Sometimes you have to step out in faith while you’re afraid. So yes I was afraid, but I took that leap of faith anyway.
If I remember correctly, this was the first time I really sought God out to direct my steps in terms of my health. I think being pushed to the edge of having to work one day a week instead of six while dealing with all of these weird and painful symptoms was really the straw that broke the camel’s back. I had made it a bad habit to push my body to its limit each day without getting adequate sleep, water intake, and nutrition. It’s like I was withdrawing from my body’s imaginary bank account without realizing I was going into the negative each day and failing to replenish what I had borrowed from the day before. At some point, the bank has to intervene and will eventually shut down your account. Unfortunately, I had reached that point with my body.
All I could do at this point was trust God and do good (psalms 37), stay present in the moment, and wait for what tomorrow would to bring. I was tired of trying to figure out what was going on and submitted to the truth that I was not going to figure this out on my own.
Trust in and rely confidently on the Lord with all your heart and do not rely on your own insight or understanding. In all your ways know and acknowledge and recognize Him, And He will make your paths straight and smooth, removing obstacles that block your way. Do not be wise in your own eyes; Fear the Lord with reverent awe and obedience and turn entirely away from evil. It will be health to your body, your marrow, your nerves, your sinews, your muscles—all your inner parts and refreshment (physical well-being) to your bones. Proverbs 3:5-8
I never could have imagined what would be in store for us when the clock hit midnight on January 1st, 2017. Micah and I kissed to ring in the New Year and went to bed praying for God to help us with this huge transition of healthy eating and living. I look back at that moment and see how God was teaching us how to be obedient in faith. That first step of changing our lifestyle out of faith was contributing to the solid foundation we already had in God. That first step in obedience would be monumental in a series of steps with God leading the way into the storm. The storm would come regardless of our obedience, but surviving and thriving during the storm heavily depended on that obedience coupled with our will to abide in his word and discern his voice through it all.
Chronic Hope Part Two: The Raging Storm.now available here.