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Radical Change - The Start of a New Life

The Monday before Thanksgiving 2017, I wrote these words: “I’m in so much pain.  My pain is consuming all areas of my life.  If something doesn’t change soon, I fear I’ll lose hope entirely.”

How does one live without hope? After years without answers and misdiagnoses, my doctors diagnosed me with an incurable genetic condition. On top of this they suspect additional rare conditions as well as at least one autoimmune disease. I spent the majority of my life believing I was healthy and ignoring some of my weird physical inabilities. My official diagnosis didn’t come until after I was married and pregnant with my first child. It was my OB who finally took charge of my health and helped me to find the necessary doctors (this alone took a few years!). Each day I still live in partial denial. I desperately hope that by some miracle all my doctors are wrong and they will discover I have a rare disease that IS curable! I pray and plead with God for answers, for direction, for relief… This leads me back to my question: How does one live without hope?

Don’t get me wrong; my life is good. My life is REALLY good. I am surrounded by a family who supports me, I have a loving husband who gives me courage, I have two beautiful children who are happy, healthy, and strong, and I have my absolute dream job. God has blessed me with more than I could imagine. When finances have been difficult, God has provided for my family. In many ways, God is visible in my life. Yet, when it comes to my health I feel that He is silent. I have spent nights crying out to my ceiling or screaming into my pillow. When pain attacks swiftly, deeply, and without relent, it is hard to hold onto the things that make my life wonderful. It is difficult to see past the fog of pain that consumes my mind, my body, and my energy. When moments of reprieve do come, I am left in a state of pure exhaustion coupled with confusion. My life is incredible, but sometimes I can’t remember that. Sometimes I just feel hopeless.

I’ve always had aches and pains. I complained about joint pain throughout my childhood and through my teen years. My pain never lasted more than a day though, and it was never bad enough to prevent me from pursuing daily activities. My condition worsened slowly each year and became most notable during my first pregnancy. Suddenly my pain was more dramatic, but… I was pregnant. Pregnant women suffer all types of pains quite commonly. We didn’t realize at the time that my pain then was a precursor of what was to come. During my first pregnancy in 2014 I started getting an inkling of the severity of the issue. I lay down to stretch my back one night and was unable to get back off the floor. I ended up stuck on the floor in severe back pain until my husband came home from work. That was the first time I learned to always keep my phone within reach. My hips and knees became so bad that my poor husband had to carry me up the stairs to our 3rd story apartment even when I was 8 months pregnant. While all these times were difficult, they were bearable. It was on December 24th 2014, two days after my daughter was born, that I dealt with my first emotionally devastating limitation. On the previous day I’d picked up my newborn baby girl to feed her, carried her in my arms to soothe her, and swayed back and forth to put her to sleep. The next morning my shoulders couldn’t support her weight. I was unable to hold my baby girl. If you have ever felt the overwhelming weight of true depression, this is what hit me in that moment. I was blindsided by this limitation and I felt completely helpless. My condition was still undiagnosed at this time and I felt completely lost.

Luckily, once I learned to moderate my day, I was able to function as a normal mother again. As I stated before, I am extremely blessed to be surrounded by family, and at the time we lived with my parents. During the last month of my pregnancy we had moved in with my parents because I needed medical attention and help while my husband was at work. We stayed with my parents the first year of our daughter’s life. It was difficult at times to be married and living in my old high school bedroom with my tiny family, but I was also extremely grateful for my family’s assistance. My health improved, my body became stronger, and most of the fear that had crept into my life faded away into the recesses of my mind. We became pregnant with our second child and while the pregnancy was still difficult, overall the second pregnancy was much easier than the first. Little did I know what my life would look like shortly after my son was born. Every major stressor you could imagine my little family experienced in our son’s first few months of life. So much happened so quickly, and by the time we made it through the storm I started to notice my body was exhausted both mentally and physically and that my pain had become more intense and more frequent. It was during that time of storm that I was officially diagnosed with my condition. Now it was time to learn how to manage it.

I wish I could share with you that I figured out how to manage my condition! I wish I could exclaim that I unlocked the key to living without pain… or at least reducing my pain. Unfortunately, this has not yet been the case. My condition creates one of those unsolvable puzzles where the solution always feels just out of reach. From what is known of my condition, I need to exercise so that my muscles will take over the work that other parts of my body, like my ligaments, cannot. In a theoretical fantasy world, if I could become brilliantly strong and fit and stay that way without fluctuation, then I would be able to prevent much of the pain I experience on a daily basis. Here comes the obstacle. If I work out too hard, I set my self back to square one… or sometimes square negative 5 if I really screw up. If I don’t push my self hard enough, then I don’t build my muscles strong enough to make a difference. While these are difficult concerns to balance, they aren’t even my largest obstacle. Sometimes, my pain is so great that exercise is not even an option. This has been the case for the last few months of my life. On January 25 2018, I had to walk with a cane for the first time. Most people can’t imagine what it’s like to look young, healthy, and fit, but be so broken. I never minded being the center of attention until people began staring at me as I struggled to stand up out of my chair and leaned my weight over a cane. I can see so many questions swirling on their faces. I can’t express the emotions. I want to scream out when I’m in public. I just pretend they aren’t staring, and they pretend I don’t notice.

Now, given the information my doctors have provided me, I am describing my condition the best I can. Since it is a relatively rare condition, my doctors also have little knowledge to share. We do the best with what we know, and I do my best to implement the best practices into my life. I’ve tried nearly everything that has been recommended to me. I’ve tried “normal” solutions and I’ve tried the wacky housewives’ solutions. There is, however, one solution that I have not successfully implemented. I have never successfully changed my diet. I eat relatively healthy - lots of vegetables, home cooked meals, good amounts of protein, correct proportions, no soda, few snacks, and a ton of chocolate. Yes, it is that last piece of that equation that I can’t seem to kick. I LOVE chocolate, and not like most people love chocolate, but in like a truly addictive way. Recently I’ve done some very serious self-evaluation to determine what it is about my diet that makes me so resistant to change it. It’s not like I haven’t tried cutting unhealthy foods out, or limiting my intake, or finding healthy substitutions… In the end it just didn’t feel that necessary. As I mentioned before, regardless of my many health struggles, I do appear healthy! I’m 5’ 6” 128 lbs. and well within my healthy limits on any scale. I’ve realized that somewhere in the back of my mind I have decided that if my diet is not causing me to gain any weight… then it really can’t be that bad. Right? Well, that’s at least what I’ve always told myself. What it comes down to is my motivation has never been strong enough. Changing one’s diet takes an enormous amount of energy and time. If you remember, I clearly stated how I have neither energy nor time to spare. In order to revamp my diet, I’d need something undeniably abrasive to smack me over the head and say stop dicking around and make a change! That undeniably abrasive smack over the head came a week ago in the form of a video clip on Facebook.

So, let’s recap. I have never had the necessary motivation to change my diet because 1) I think I’m a pretty darn healthy eater (minus the chocolate consumption), 2) my weight is not a health concern, 3) I have never believed my diet has any correlation to my genetic condition, 4) changing my diet would be an enormous amount of work, and 5) I don’t have the time or energy to meal plan or adjust my daily habits. I’m sure I have more excuses, but these are the top 5 that come to mind. Then a video pops up on my feed. This video is about people with my specific condition! I’m sure Facebook specifically targeted this video to me, but I was still intrigued. There were all these young women my age and younger talking about what their daily lives look like with our shared condition. I felt understood. Some of them had symptoms less severe than mine, and many of them had symptoms that were more advanced than mine; but I felt like I finally had people I could relate to. Then towards the end of the video a few of them mentioned what they did to cope with their illness. The first woman claimed, “I changed my diet and added in a few nutrient supplements. I was really shocked that all my symptoms were massively reduced or subsided altogether. I’m obviously not cured, the genetic defect is still there, but I’ve been managing my symptoms for quite some time now with nutrition.” She went on a completely anti-inflammatory diet to help her manage her pain. Finally, one girl stated towards the end, “I was put on a diet by a gastroenterologist and she said ‘just see how it goes’. It made a massive difference. It helped me reduce my pain and it helped me reduce my headaches which was really amazing! Two years ago, it was really like, hey consider everything you want to do with your life because that’s not going to happen. You are not going to be able to get out of bed. You are not going to be awake that much, but now I have completely feasible life goals that are 100 times better than what they were a few years ago. I can have a life!” You can’t imagine how much hope began to fill me. I feel like this girl. I went from a normal woman, to being in pain all the time, to being unable to take care of my household chores, to needing my mom to come over nearly every day to help me care for my children, to needing a cane to walk on most days, to missing most of my weekly activities, to feeling like I can’t even get out of bed. That is where I am now. That’s me, today. Some days are better and I’m mobile and can take the kids to the park or go to work for a bit, and some days I can’t get out of bed and my mom and mother-in-law help me with my daily tasks until my husband gets home. The bad days have become more frequent than the good days and between the physical agony and the emotional insecurity this disease inflicts, my whole self, body, mind, and soul has become devastatingly fatigued. But now I have renewed hope AND the undeniable motivation I need to succeed at this task.

Enter - my plan for radical change! While I’ve never participated in lent before, I decided lent would be the perfect opportunity to change my life. When I experience cravings, become frustrated, or want to give up, I will turn to the Lord. I will pray without ceasing. God may not have given me the miracle I’ve desired in eradicating my genetic defect, but He may give me the strength and determination I need to learn how to manage it. So, what will the next 30 days of my life look like? Well, I am going to start the Whole30 diet on February 13th (yes, I realize that is the day before Valentines day… but there is always some excuse not to start!), I am going to go to Yoga 3 days a week (even if I’m only able to lay on my back on the floor for the entirety of the class!), I’m going to take a break from television and social media (I’ll explain more on this in a later post), and I am going to take a break from secular music (mostly so I can take the time to listen to worship music instead… but also because my taste in music is starting to teach my 3 year old a few words that no 3 year old should have come out of their mouth… ooops!). So, I am changing nearly every aspect of my life; diet, exercise, and entertainment. Honestly, I’ve tried to change a few of these habits before and failed. What I am undertaking is no small feat. Ultimately what I hope to achieve through this is to re-center my life on Christ, reduce my pain, begin to function normally again, become physically stronger, and to live once again with hope for the future.

Here we go!


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