Chronic Illness

My History is His-story

Before we get started, I want to *insert disclaimer here*– This is in no way, shape or form meant to be a “pity party, table for one”! It has honestly been extremely difficult to compose this message into one blog post; and in fact, I have written it three different times in three different ways. I am sincerely begging God to speak through my fingers as I type, and to speak to your heart as you read it! I have prayed over this post that I will articulate my words in a way that my heart will shine through and that the message I am attempting to convey is received and heard by those that find themselves, or a loved one, in a similar situation. My story is a mixture of hurt and hope, and in order to fully portray the gravity of the situation, and to give God the glory He deserves, I believe my time is best spent laying out the nitty gritty details- one by one.

With that said, I’m going to ask you to join me on a journey- One where we’ll climb to the beautiful mountain tops, then down into the darkest of valleys, across calm seas and through radical storms. It’s gonna be quite the ride, but if you’re ready- grab your hiking shoes and your umbrella and let’s go!

I was born and raised (until 14 years old) in San Diego, CA. I loved softball and surfing! My life was active and I was fit; however, it didn’t take long to realize that I was more accident prone than most! Growing up I struggled with kidney stones, gastritis, ear infections and pneumonia quite often! I accidentally swallowed a chicken bone (which my dad will NEVER let me forget), I broke bones or sprained ligaments. I even took away an unwelcome souvenir of sea urchin remains from Hawaii…in the bottom of my foot with surgery and complications to follow!!! With all that said, I’m sure it won’t be hard for you to believe that my “Indian name” was accurately assigned to me as Many Bumps! HA

Anyways– Fast forward to tenth grade. At this point we lived in Cleveland, TN and I attended a Christian high school. I don’t claim that basketball was my sport by any stretch of the imagination, but it was a sport, so I played anyway! During one of our games, I was elbowed in the temple by the opponent and I suffered my first concussion. It was a bad one, and soon after, I noticed my health and body started to change. Fast forward again to my senior year. Now, the sport of choice is volleyball (still not a pro but definitely more my sport!). On senior night, against our rival school, my teammate and I collided on the court and the front of my face was introduced very forcefully to the back of her head! And just like that- another concussion! This one was much more severe and I missed accumulatively about 30 days of school.

By the time the concussion healed, I had graduated high school (As valedictorian mind you!) and I packed up my belongings and moved back to California for my freshman year of college. I made it through my first year with nothing more than kidney stones! I had them removed and ta-da! Success! One year down!

Then, one month into my sophomore year of college, things started to drastically change. Remember when I said our journey would take us down into the valley? Well, we have officially arrived! In October of 2011 I had to leave college, mid semester, and come home for medical testing. My symptoms were manifesting in my GI system, and with the possibility of crossing into TMI-ville, I will do my best to paint a picture of what the next 9 months looked like. Everything I ate or drank (and when I say everything, I mean EVERYTHING) instantly came back up as soon as I stopped chewing and swallowing. Things then progressively got worse. I became so weak and my blood pressure was so low that I would faint at random times, I was unable to fall asleep until 7 or 8 am, I had hallucinations at night where I saw, heard and felt things that of course, weren’t there. And, at 18 years old, I found myself a shut in. I was only able to leave for doctor’s appointments, and even that felt like I was forcing my body to run a marathon! The pain in my bones, muscles and joints became excruciating. My body felt like one huge bruise. I couldn’t carry a purse, be hugged, and even the seat belt in the car hurt me. Being unable to absorb any nutrients from the foods I ate, since it never stayed down long enough, left me malnourished and even weaker! I went to acupuncture, multiple doctors near home, Mayo Clinic in Jacksonville, FL, and the local hospital on many occasions. I tried every drink and supplement that promised that “it can even cure cancer!” and yet I saw no results and received no answers! The first procedure I had beyond the initial endoscopes and colonoscopies was my gallbladder removal. The HIDA scan proved that my gallbladder was diseased and not functioning properly. There was a glimmer of hope that they had finally found the culprit! I went in to what was supposed to be an outpatient procedure with high expectations. Those expectations were quickly dashed when that out-patient surgery hospitalized me for a week. My body responded extremely slowly to the waking up process from the anesthesia and every system in my body was essentially asleep and not functioning properly. When I was finally discharged, I still left without any inkling as to what was wrong, and all of my symptoms were still present. My body eventually healed from surgery and the testing road began again.

Over the next few months I had a plethora of tests performed on my body. Some of the most bizarre I underwent were where you eat a radio-active scrambled egg while laying on your back under an x-ray type machine and they watch the egg travel through your digestive system, where you drink barium in front of an x-ray type machine and they watch the same things occur, or where they insert a probe up your nose and into your stomach and then have you drink water. Mind you, I’m still not able to tolerate any food or drinks without “getting sick” during these tests! It was definitely one of the darkest valleys in my life!

Symptoms like these continued and I was ultimately put on blood pressure, sleeping, thyroid and asthma medications to act to band aid an unknown cause. I was ultimately referred to an endocrinologist whose medical practice was more unconventional. This doctor thought more “outside the box” than the rest of the medical teams I had been seeing. He ordered an Insulin Tolerance Test where they administer insulin through an IV until your body crashes. When you do, they draw blood and take your blood pressure and then quickly reverse the insulin reaction by administering a mixture of sugar and water through the IV.

It was this very test that began my journey across the calm seas! I was diagnosed with Secondary Addison’s Disease. (read about it here) Secondary Addison’s simply means that my pituitary gland produces an undetectable amount of ACTH. ACTH is a hormone that tells your adrenal glands to produce Cortisol– another hormone that controls your ability to react to stress, pain, infection and the normal ups and downs within a day etc. Every normal body produces a base amount and then the levels fluctuate throughout the day based on your activities or stress levels. Mine produces none- ever. All of this stems back to the concussions. They essentially “broke” my pituitary gland. I was put on steroids (replacement cortisol) and it drastically reduced the vomiting! YAY!! However, the steroid I was on was very unstable and my body required different amounts at different times of day and it was very hard to manage. I found my body “crashing” quite often and I would still end up in the hospital in an Adissonian Crisis from time to time. Around this time I was additionally diagnosed with Hashimoto’s Thyroiditis, Fibromyalgia and inflammation in my airways causing asthma like symptoms.  Even with the unstable nature of the medications, and the additional diagnoses’, I was beyond thankful for the improvement I had experienced.

Eventually I recovered enough to attempt college yet again. I took all of my medications and my handy dandy barf bucket and transferred to a college in Pensacola, FL. This time, a little closer to home! Though I had improved drastically, I still struggled and found myself in bed more than I was out and about experiencing true college life. I persevered and made it through the whole year and even made the Dean’s List!

A month after I came home from school, my parents and I packed up the big yellow Penske moving truck and drove ten hours to Bradenton, FL where we had decided to move. I mean, let’s be real, you can’t expect us beach folk to survive too long in a land locked state with rivers and mountains surrounding us! It was time for sun, salt and sand again! Shortly after the move, I was referred to a doctor here that honestly changed my life! She introduced me to a diet called the “elimination diet”. I’ll expand on this in a future post, but you basically eliminate all foods that can be allergens for 28 days. Because of the state that my body was in, I stayed on this step for a total of 76 days. You then introduce the foods back into your diet one at a time to see how your body reacts. Honestly, I got worse before I got better and it was discouraging. I had gained a ton of weight, and my pain and overall well being began to quickly decline. For the next 5 months I found myself, yet again, a shut in. The only way that I could accurately express the way that I felt was by explaining that I felt like an 80 year old living in an 18/19/20/21 year old body! Eventually, the diet started to help, my team of doctors changed some medicines around and I began to lose weight as well as gain strength and independence. I got a part time job to ease into the working world and then a few months later, I ended up back in the hospital in another Addisonian Crisis. It was discouraging. VERY discouraging! I had to leave that job to recover and focus on regaining my strength. By the time I started to recover again, I realized that I had lost a total of 60 pounds, 6 pant sizes, 4 shirt sizes, ½ a shoe size and 1 ring size! I was able to get another job, still part time to ease back in, but another job nonetheless!

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Above is a one year transformation photo!

Since September of 2014 I have struggled, but not like the years I described previously. I still have Secondary Addison’s Disease, Hashimoto’s, Fibromyalgia and asthma. I have also since had blood clots in my leg, I’ve been to the hospital for kidney stones, a few Addisonian crisis’s, and migraines. To this day I take a minimum of 43 pills a day, I have 6 food allergies which are gluten, dairy, corn, potato, rice and eggs and I also stay away from cane sugar 95 percent of the time (and when I do let it sneak in it’s extremely minimal!). I have a full time job and a month and a half ago I became a wife to the most handsome, supportive, loving husband ever!

So, that’s the story behind my tears, and the same story behind my smile. Yes, these years have been filled with pain, hurt, sorrow and despair, but none of those feelings have been able to have complete control of me.  You might be wondering how I am even able to say that after reading what my body has gone through. I wrote my journey in the public blog format and asked you to read it because I want to be the one to tell you that the feelings of hope, peace, faith and trust that I am privileged to have experienced on a deep and personal level are so much more powerful than the negative feelings! It doesn’t take the physical pain away and please don’t misunderstand me by interpreting what I am saying as “all you have to do is say ‘123- repeat after me’ and your problems will magically disappear!” I’ll be honest and tell you up front that they won’t, but the power that they have over you can slip away in the blink of an eye. Think about how much power, control and sovereignty is contained in Heaven! All of that is offered to us here on earth as God’s children we just have to “tap into” that power. I will expand on this topic in another blog post very soon, but I’m sure at this point you’re scrolling to the bottom to see how much longer until she’s done rambling! I’m almost done, I promise! Everything you’ve read today comes down to this one detail. God has never left you and He never will leave you! In the words of Colton Dixon’s song “Through it All” he portrays a time in life where you hit rock bottom- you are in the depths of despair but through it all God was there! He says:

There are days I’ve taken more than I can give
And there are choices that I made
That I wouldn’t make again
I’ve had my share of laughter
Of tears and troubled times
This is has been the story of my life

I have won
and I have lost
I got it right sometimes
But sometimes I did not
Life’s been a journey
I’ve seen joy, I’ve seen regret
Oh and You have been my God
Through all of it

You were there when it all came down on me
When I was blinded by my fear
And I struggled to believe
But in those unclear moments
You were the one keeping me strong
This is how my story’s always gone

Let’s live our lives, whether it’s with chronic illness or another physical or emotional struggle, Beyond the Noise. Beyond the noise of people telling us that there’s no hope, we’re alone, we’ll never be “normal”, we’re not worth it, we’re such a bother etc., and let’s tap into His voice that tells us that we’re beautiful, loved and worth far more than the most expensive ruby. Friend, you’re so worth it to Him that He gave His only Son as a sacrifice for you so you can live eternally with Him! Surrender control of your circumstance over to the One who designed and formed you in His image- the One that believes in you. Let Him carry you and your burden through the storms. Thank Him for entrusting you with the responsibility of being a light to a dark and hurting world. Don’t overlook the fact that God assigns His hardest battles to His strongest soldiers, and hold tight to the hope that it will all be okay because your history is His story!

I know this was a long and treacherous journey, but we made it! It will have paved the way for future posts to explain, in more detail, practical ways to overcome challenges and storms. So until then, stay strong,my friends and live Beyond the Noise!

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7 thoughts on “My History is His-story

  1. Dearest Sweet Emily,
    How brave you are to share your story. Even though I knew a lot of it, seeing it written down emphasized even more to me what a courageous faithful follower of Jesus you are. It is obvious without the grounded faith you have, your struggles would have been totally unbearable. I believe you have found God’s calling for you. Your story is so compelling and you tell it in a way that speaks so well to others who are going through struggles. I truly believe God is using you to help others. Prayers are continually going up for you that God will heal your body and give you strength to continue facing the health challenges you have. Thank you for the blog and I anxiously await your next posting to see how your story is being used to encourage others. Maybe God is calling you as a motivational speaker – praying for His will for your life and thankful He brought you and Trent together. Love, Deedee

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  2. I have never read something so true to my life. We share many struggles and although I pray that no one has to deal with the same pain as I do, it’s comforting to know I’m not alone. Good luck with everything!

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    1. Hi Bailey- I am so sorry to hear that you have had similar struggles! I know first hand, obviously, how horrible the pain can be and I also know how uplifting it can be to glean from other peoples journeys. The comfort of not being alone in that world is beyond words! I will pray for your body and your spirit. If you haven’t seen my next post entitled “When you’re sick and tired of being sick and tired” I would urge you to check it out! It might be encouraging for you! 🙂

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  3. Wow. So very well written and I remember ALL of it so clearly. As you mentioned, even in the valleys we happened to find laughter, strength, joy and peace. Remember how we used to always sing “stronger” and “overcomer”? It’s crazy how we can look back on such hard times and have such good memories. Sure do love ya and believe it or not,as tough as it was, I cherish that season of life that we all had together. It definitely molded you into the amazing person that you are today.

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    1. Thank you for the love and support, dad! How can I forget those songs? The hand motions to go along with them too, of course! 😉 I know the story is hard to read and even harder to relive in so much detail. However, I am very thankful for each and every detail, for many reasons, but one would be because we are so much closer than most dads and daughters are! I love you!

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