Updated: Apr 12, 2020
Buckle up, folks. You're in for a ride today. I have a feeling this might be my longest post to date. There's just so much to say, so much to cover, and I don't want to miss a thing. Grab your coffee or your matcha and settle in...we're headed back to high school!
DISCLAIMER: If you don't do well with bodily function details, TMI to follow. I'm intentionally including every little detail I can possibly remember. There were so many times I looked for articles, read blogs, and searched for stories from other people to read their symptoms in the hopes that I could relate to anything to find an answer. My hope in this blog post is that it becomes just that for someone else. As always, please seek medical advice because this post is in no way a substitute!
If you don't want to read my full health history, here is an overview of what is discussed:
- Autoimmune Disease (Hashimoto's)
- Polycystic Ovarian Syndrome (PCOS)
- Mental Health (Anxiety and Depression)
- Eating Disorders (Anorexia, Bulimia, Binge Eating)
- Irritable Bowel Syndrome (IBS)
- Non-celiac Gluten sensitivity
- Androgenic Alopecia (Balding)
- Kidney Stones
Most people don't want to discuss their health. Health is comprised of our most personal details. Please know this was difficult for me to write about. In a lot of ways, my health has been directly correlated to my shame. However, I know how badly I just wanted to read about someone else experiencing the same thing or even similar circumstances. Or to even just know that I wasn't alone in my struggles. So I dedicate this post to those of you that will find yourself relating in your own way.
If we're "real life" friends, or you've been following my story for a long time, you know that my health has been a battle for years. 10 years to be exact. Truthfully, it's why I am passionate about the health and wellness industry and why I began this whole wellness coaching endeavor in the first place. It's been years in the making. Let's begin with a timeline.
2011 (I'm a junior in high school): Gynecologist annual. Blood work done showed thyroid levels off. She mentioned an endocrinologist, and we (mom and I) decided not to do anything about this for really no logical reason other than we just didn't.
Fall 2012: Finished up Accutane. I began Accutane in the spring of this year due to having really bad acne. For me, it's genetic. My mom had terrible acne as a teenager, and my dad still gets it. I had tried all of the topical medications the dermatologist was able to prescribe me, and to prevent scarring and (somewhat) against my mom's will, we went for it. The left and middle picture are from April 2012 before beginning, and the right is May 2012, one month into treatment.
2012: Digestive symptoms began. Not too long after starting treatment I noticed very foul smelling gas that accompanied diarrhea met with stomach pains. When I went to college though, Fall of 2012 and Spring 2013, my digestive symptoms switched towards constipation. I went from stomach pains (you could literally audibly hear my stomach making noises) and hours spent on the toilet, to then 2 weeks at a time without a bowel movement. During this time, Celiac disease was beginning its entrance into society, and I also did a breathalyzer test for lactose intolerance. I had already begun cutting out gluten and dairy, to which I'd occasionally find some relief. So for the most part, I continued.
Spring 2013: Met my first Gastroenterologist. With none of my symptoms completely ceasing, we decided to begin visiting doctors. I went in for blood work again with my gynecologist, and also visited a gastro at this time. The gastroenterologist recommended a colonoscopy.
June 2013: My first colonoscopy. This doctor didn't find anything so she gave me the catch-all diagnosis of Irritable Bowel Syndrome and placed me on Linzess. This prescription was in an effort to treat the constipation. I'd feel nauseous and sick all of the time from 2 weeks worth of literal shit sitting inside me so long. I was low on energy, physically and mentally drained, and I was so full all of the time. Linzess is used 30 minutes before your first meal to induce a bowel movement. True story: Fall of 2013 I was living in the sorority house. I missed the timing between taking my medicine to when I started eating by 5 minutes, so I didn't make it to the bathroom. I had diarrhea in my pants and was MORTIFIED as I waddled down the hallway to the community bathroom, where I then had to change my clothes.
Fall 2013: This medicine wasn't working for me, so some additional blood work showed my thyroid once again wasn't functioning correctly. Now I was sent to an endocrinologist. Also during this time, I passed my first kidney stone (without knowing at the time that's what it was). It was dad's weekend at Oklahoma and I was stuck in bed with the worst pain I have ever experienced in my life, and I literally thought I was going to have to call 911 to come to the sorority house. At this same time (also without knowing it at the time), I was struggling with anorexia nervosa and at a significantly low weight.
This picture is the first one I ever took (during this time period mentioned above) when I had the thought that I may be very sick. I was still enrolled at Oklahoma and thinking that if I could just get out of the sorority house and live on my own, it would make things just that much better. And so I did.
Winter 2013: Went to 3 different endocrinologists. Given all of this thyroid talk, my mom and I really had a hard time grasping the concept of the thyroid, and we wanted different opinions. One endocrinologist suspected Hyperthyroidism, one suspected Hypothyroidism, one gave me an iron supplement and monitored my thyroid after 24 hours and then suspected Hypothyroidism moving towards Hyperthyroidism. Given the multitude of diagnoses and the confusion with the thyroid that I already had going into this process, I didn't follow any action plan. Without having a streamlined plan and diagnosis and knowing that if you start thyroid medication, you have to be on it the rest of your life, I just wasn't willing to take that chance. I'd just continue to monitor my levels yearly.
January 2014: Diagnosed with severe clinical depression. I came home from the University of Oklahoma (yes, abruptly). I went back after winter break that semester and moved into a new place (thanks to a doctor helping me by writing a note to our headquarters), stayed a week in my new place, and I couldn't take it anymore. I drove home that first weekend and never returned. I'd had a panic attack each day after my mom left from moving me in. My anxiety was so bad that my depression was heightened and I legitimately couldn't function.
This picture was on my 20th birthday, days before my diagnosis. Just goes to show you can't judge a book by its cover. I had so many people tell me how happy I looked during this time.
Spring 2014: Went to a hematologist for panels on panels of blood work. None of the other doctors could tell me anything even remotely related, so we figured that maybe someone who studies blood would be able to find some parallels. He found low white blood cell count. He then requested the following to rule anything else out.
Summer 2014: Ultrasound on my thyroid, heart, pelvis, and abdomen. Officially diagnosed with Hashimoto's Thyroiditis. Hashimoto's is an autoimmune disease, like celiac. I have nodules on my thyroid that will "flare" up and cause issues as an autoimmune response. As you may know with autoimmune responses, in this case, the thyroid is attacking itself. Also during this time I got the nodules biopsied. Just imagine being poked and prodded in your neck. You're numb but you are awake, and I could hear the whole thing.
We went to Orange Beach, Alabama, a few days after my procedure. It's hard to tell in this picture, but if you zoom in on my neck you can see that it was bruised. It stayed that way for several weeks following.
Fall 2014: Blood work with a fourth endocrinologist as recommended by the hematologist, who then recommended a low oxalate diet. This was the last time I went to an endo given the wide array of diagnoses, a lack of knowledge on the depth of a Hashimoto's diagnosis, and again, the thyroid all together.
Spring 2015: Another thyroid ultrasound. This was a yearly follow up with my hematologist. I also met with my dermatologist due to my hair falling out. She biopsied my scalp and diagnosed me with Androgenic Alopecia where I was placed on prescription shampoo. This is just a fancy word for balding. I think this could be related to a lot of what was going on, but it was just another thing to add to the list.
Fall 2015: More blood work and an allergy test with an allergist, this doctor pricked my back as shown below, essentially giving me different allergens to see how my body reacted. The result: sensitivities to some foods, and a Histamine allergy, to which he correlated to seasonal allergies. This will come in handy later on. I was so sure that something was going to show up here, I've gotten my hopes up for all of my doctor's appointments and then find myself leaving defeated each time, because nothing makes sense compared to what I was feeling.
Winter 2015: Yearly blood work with my hematologist showed low ferritin, which let me know that I am anemic. And my thyroid levels off still.
Summer 2016: Yearly blood work with my hematologist who found H.Pylori, low B12, and a continuation of anemia and thyroid levels being off. I began treatment for H.Pylori. This is a bacteria that lives in your stomach lining or upper part of your small intestine. If you have it for too long it can actually cause ulcers. Here I was thinking it was the answer to all of these issues. I even wrote a blog post once saying I was finally going to be healed.
Fall 2016: At this point, my digestive issues of excessive bloating, gas, and constipation have still not ceased. I got my second colonoscopy and an endoscopy with another gastroenterologist. They found gastritis (fancy word for inflammation of the stomach lining) and biopsied it as well. But nothing diagnosable, or treatable. At this point I have checked out. If you're me, where else is there to turn? I decided that it seems as though this is just the way I'll live the rest of my life.
2017: I didn't have any major health concerns that I remember from this year (or can find record of). We then just figured that the digestive issues came about from the Accutane treatment. What I do remember during this year relates to my eating disorder, which so happened to transform from anorexia to bulimia. I began work at the treatment center.
January 2018: Kidney infection and a kidney stone that the urologist had to surgically remove. Phew, y'all. All I can say about this is that a friend said her mom has had kidney stones and (obviously) had given birth before and said that kidney stone pain is worse than giving birth....
Summer 2019: The beginning of repetitive periods of severe stomach cramping and pain in my lower abdomen followed by diarrhea. This first began when I was in Las Vegas. I'd spend literal hours holding my stomach, laying over my legs while sitting on the toilet, just downing pepto bismol praying for the stomach pains to cease long enough that I could just go to bed.
Actual picture sent of me sitting on the toilet in pain during the conference I was at.
Fall 2019: Labor Day weekend (beginning of September) it happened again, this time though, my diarrhea was bloody. End of September in Nashville, again and I had mucus in my stool. Beginning of October in Omaha, it happened again. Now it's becoming way more frequent and way more severe. Eventually I was no longer able to keep food in my body, I would eat and it would go straight through me and come out as diarrhea. Finally, at the end of October, there was one night that it came again, except this time, I was also urinating blood. I went to CareNow the following morning and they told me nothing was wrong. I sat criss cross on this hard, crinkly paper-lined table, looked this nurse dead in the face with tears in my eyes and told her she was wrong. She checked again, said there was a slight infection in my urine (looking back now likely due to passing another kidney stone), and gave me antibiotics. She suggested I follow up with a gastroenterologist for the digestive systems. She also recommended a gynecologist because oh, by the way, I haven't had a period in over a year either. If you're a female of child-bearing age, this is not good.
Winter 2019: I'm in the middle of a relatively busy season at work, I'm being told consistently by doctors that nothing is wrong when my body is telling me otherwise, I'm trying to get into other doctors' offices so I can hopefully find someone who will give me something to work with, and I am EXHAUSTED. I found myself crying on the phone with ATT one day. I needed to speak with them about my bill and I was just emotionally drained. If you're in this stage now, my heart is with you. It's tough, you're tough, and I'm so sorry.
I ended up in my OBGYN's office to get checked for PCOS. In my first visit, she said my symptoms pointed directly to a PCOS diagnosis, my ultrasound on my ovaries showed that I have it, and they were going to do bloodwork to confirm. She called me one Monday evening at 7pm and said she couldn't officially diagnose me because even though my levels were high, they weren't 'outside of clinical range'. WHAT?!?! I get it, but WHAT?
Spring 2020: Where am I now? I experimented with Whole30 for the month of January. For the most part it was great and I have a blog post planned for it. The baffling part of Whole30 for me was that I still had major bloating. When I mention bloating, basically this picture below is what would happen. Any time I ate, no matter what it was, an egg, one cracker, whatever, I'd balloon out to look like I was a few months pregnant. So when this happens no matter what, how much, when you eat, yeah, you do tend to not want to eat.
SO NOW WHAT?????
If you review the above symptoms from the alopecia to the allergy tests and you know about autoimmune disease, and knowing what I do now, I do believe it all traces back to Hashimoto's. It didn't click for me until recently. I read one of my favorite mom blogs where she talked about her daughter's Celiac diagnosis and a lightbulb went off in my head. I didn't realize celiac was an autoimmune disease. Hashimoto's is an autoimmune disease. And since I have never done anything about my diagnosis, that'd be like me receiving the celiac diagnosis and still eating gluten. Gah. I also didn't realize that if you have one, you likely have another autoimmune disease. I'd been tested for celiac before, but since I have a generally gluten-free diet already given my health history, it won't show up on an allergy test. I also think there's the potential for a Crohn's diagnosis as well, another autoimmune disease.
I totaled up what has equated to over $10,000 in medical bills. Years in doctors' offices. And even more in emotional angst. I'm angry. I'm resentful. I'm defeated. And most of all, I'm exhausted.
My body has been through a lot. I could share more about each phase of this journey, but this post would get so long. Maybe I can break them up for additional posts. I'm still learning things as the days go on. A few months ago, I would've said my eating disorder played into these health issues. But truthfully, while I think it obviously doesn't help anything, that doesn't exacerbate any of this. Autoimmune disease is genetic. You can do things to heighten the symptoms, and that's what I'm still journeying through to figure out. Stay tuned for more. There's a lot I still have to say and share that won't fit in this particular post.