A Patient's Perspective on How to Live Well with Autoimmune Disease

02 Personal Health Report: Childhood Edition


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Were you ever sick consistently as a child?  Have you ever wondered if things like diet, the chemicals or toxins you may have been exposed to, or genetics played a part in your journey to autoimmune disease?  Well, these are all questions I’ve been asking myself for years.  I may not have the direct answer for this; however, I do have my own personal experience as well as the experience of my own son and family to form my own opinions.  Let’s learn more about my childhood and see what you think!

If you are looking for information on what my Personal Health Reports may be or the reasons why I am sharing this information with you, please do check out my first post here:  01 Personal Health Report: PHRs Explained.  Now onto my own personal story with illness as a child.

My Own Personal Childhood

Currently, I have had a total of 14 surgeries (and counting), mostly due to autoimmune disease. In addition, I have been through more endoscopies, colonoscopies, x-rays, MRIs, CT scans, bloodwork, and other tests than I can honestly remember. When trying to track down old medical records, I find myself accumulating a dictionary-sized preview of my 24-year battle with health problems.

You see, my journey began when I was only 8 years old. At the time, I suffered from constant nausea, gastrointestinal pain, and regularity problems. I was sick from school on a regular basis and my pediatrician could not figure out what was wrong with me. As supportive as they were, my parents were at a loss at what to do because regardless of what pediatrician, specialist, or medical guru we consulted, the answer was always the same: one big fat question mark.

I didn’t have any normal symptoms of an easily-identifiable virus, cold, illness, or disease. No matter how many tests I endured or biopsies we acquired, everything was reported as ‘normal’. However, there was one very small detail that had my doctors scratching their heads and consulting with each other: elevated sodium and calcium levels and microscopic blood in my urine. ALWAYS. And I was only 8 years old and did not officially hit puberty until I was 17. With no identifiable reason, diagnosis, or disorder, my doctors eventually decided to treat my symptoms as they happened and hoped that they would figure out the cause or culprit of these symptoms later.

My First ‘Diet’

Once we realized that my symptoms were not getting any better (and frankly, were only getting worse) and a diagnosis might not be as easy as we thought, we felt like the tide shifted and we were starting to get somewhere with my care. Unfortunately, I did pass a few kidney stones during that time but it was only then that doctors realized a diagnosis may not be as important as treating my actual symptoms where they were.

So, at the age of 10, I was placed on a very strict, very low-sodium diet. That meant no more drive-throughs, no more pizza, and no more sweets. As a kid, this was HARD. I mean, I had to watch everyone else eat cake for their birthday, celebrate with pizza during a slumber party, and obtain piles of candy over Halloween. And then there was me. The kid who had to measure and portion out meals, the kid who could recite product content labels better than the winner of our school’s spelling bee, and the kid who always ‘shared’ the best treats with her friends.

To this day, I still remember how much sodium is in a piece of bread (125mg) and the pages and pages of notebooks I used to keep as a food journal. I remember portioning my meals out with measuring cups and only being able to eat 1/4 cup or 1/2 cup of whatever fast, quick, or boxed meal was on the menu that night. I remember starting high school at a whopping 90 pounds and classmates thinking I was bulimic because I still got sick so often.

You see, even though I was watching my sodium intake, I never truly learned how to change my lifestyle to accommodate this diet I was on.  Instead of learning how to eat more fruits and vegetables, we just measured and portioned out servings of what I could have from what we were already eating and honestly, we weren’t eating in the healthiest of ways or creating any healthy habits.  So, even though my ‘diet’ journey started at 10, I never truly learned how to eat right for my health.

10 Years of No Official Diagnosis

During this time, I still had no official diagnosis. I still followed a strong low-sodium nutrition program and I still had blood in my urine; however, my sodium and calcium levels decreased and I never (knock-on-wood) passed another kidney stone. To this day, I still pay attention to how much sodium is in certain foods even when I don’t necessarily have to be following as strict of a low-sodium diet program. These habits were ingrained in me at a very young age and they truly have become habits; however, even to this day, I still do not have a solid explanation for anything I experienced as a child.

One specialist told me that I might have outgrown my issues; another said it might have been anxiety-related and normal life-stress that was having adverse reactions on my body as well. Regardless of how anyone feels, I know I am not crazy. I enjoyed school and looked forward to being there but ended up having to miss attending it often. I felt unreliable to my friends and always had to miss out on many childhood experiences because I could not eat or drink what healthier kids do during holidays and other activities (in moderation of course). I was always depressed, always confused, and always feeling lost in a huge world that never seemed to understand me. I was unique and was afraid to embrace my own health journey, regardless of what it was.

Does this have something to do with the multiple autoimmune diseases and diagnoses I’ve acquired as an adult?  Did my experiences as a child leak over into adulthood?  Even though I do not have the answer for this right now, I do strongly believe my struggle with health as a child and my struggle with health as an adult is somehow connected.  I mean, how could it not be?  Even though I still do not have any solid answers (yet), I have a feeling that one day everything is going to come together and make a whole heck of a lot of sense.


So, what about you?  Do you think our health and nutrition as a child dictates how we feel as an adult?  Do you think unhealthy habits early on in life can lead to health problems and/or autoimmune disease?  I’d love to hear your thoughts!


Thank you for your interest in my Personal Health Reports and I hope you enjoy reading my own personal health updates!  Want to keep reading?  Head on over to the third installment of my PHRs:  My College Years!

 

As you are reading, please do remember that I am not a medical professional, nurse, health coach, or any other health professional of any kind.  I am a patient with years of experience with autoimmune disease and will be sharing information and resources from a patient’s perspective; however, please do keep in mind that anything that I share here should not replace any medical advice you should receive from a doctor or other medical professional.  Please consult with your doctor before changing anything in your routine or care.

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