I take pride in being my kids’ biggest advocate- their biggest cheerleader. Something I’m not so good at? Being my own advocate. Speaking up for myself. Being my own cheerleader. I know it’s a story that many moms can relate to. But advocating for myself really and truly saved my life.
In January 2019 while at work, I noticed that I was dizzy. Not like a fall over dizzy, but like “my brain is super foggy and I can’t think straight” kind of way. I just chalked it up to being dehydrated and staring at my computer for work. After a couple of days of constant dizziness and accompanying chest pain, I headed to Urgent Care just to get checked out. Urgent Care couldn’t find anything wrong but they ordered in-depth blood work and a chest x-ray. Both the bloodwork and chest x-ray came back completely normal. Urgent Care recommended checking in with my regular doctor if it continued.
The dizziness came and went but then came back full force in the beginning of March.
I woke up with exhaustion like I had never felt before and could barely get out of bed. A visit to my doctor’s office resulted in a diagnosis of pneumonia and a round of heavy-duty meds with the instructions to check back in if the exhaustion wasn’t gone in a couple of weeks. Two weeks later I was back at my doctor’s office with a double ear infection and continued exhaustion. Meanwhile, the dizziness lingered and my doctor believed it was related to fluid in my ears.
Three weeks later, on my 38th birthday, after dealing with dizziness and the return of chest pains, I headed back to the doctor. Looking back, this was the start of the darkest season of my life. Working in the mental health field, I knew I was showing signs of depression. I had lost weight, was having trouble eating, and had decreased motivation to workout (despite being a very active person for most of my adult life). During that doctor’s visit, I had an EKG done (completely normal) and another round of in-depth bloodwork done (again- completely normal). The next step was a referral to an ENT.
On May 6, I was finally able to get in to see an ENT.
After finding no fluid in my ears, the doctor ordered a hearing test and dizziness testing. Five days later was my middle son’s 6th birthday party at a local jump park. Right after the party started, I noticed that I had weakness in my legs. It progressively got worse and my legs started to tingle. As I was surrounded by screaming, happy, excited children, I. Was. Terrified. My mom was diagnosed with MS at age 41 and I was immediately convinced that’s what this was. During the party, I called my dad and asked him to meet me at the emergency room so that my husband could stay at the birthday party.
While at the ER, I had X-rays of my spine and a CT scan of my head done, along with another round of bloodwork. Results were…you guessed it… completely normal. The ER doctor shared that she would not be able to order an MRI (the best way to look for signs of MS) and that I would have to see a neurologist for that (but good luck getting into one quickly). She sent me home with orders to follow up with my regular doctor.
The next day was Mother’s Day.
Looking back at pictures from last year, I can see the fear in my eyes. The fear of something serious being wrong with me and of leaving my children behind. The fear of not being able to see them grow up.
Thankfully I was able to get into my doctor that Monday and got a stat brain MRI ordered for that night. They also got me into a neurologist for the next day. I went to the MRI alone. My doctor called with the results the next morning- NORMAL. The tears that streamed down my face were from complete relief but also utter frustration and exhaustion. Later that day after meeting with the neurologist, he ordered a spine MRI, an EMG, and yet another round of bloodwork. Three days later, I went for my hearing test and dizziness testing. My follow up visit with the ENT revealed that the results were completely normal.
The wait for the spine MRI was excruciating.
Three weeks of googling every single possible symptom over and over again. Three weeks of barely living because I was too busy counting down the hours to (hopefully) getting some answers. On June 10, I went back to the neurologist for the results of all the testing. Everything. Was. Normal. My spine- beautiful; EMG- perfect; bloodwork- outstanding. I cried. Again.
After that discussion, he asked if I wanted a referral to Cleveland Clinic and I jumped all over it. The MS Center at Cleveland Clinic is very well known and I worried about another long wait. But 9 days later, my husband and I were in Cleveland with two neurologists who specialized in MS. They were patient and went through everything- my MRIs, EMG, bloodwork, etc. At the end of the appointment, they assured me (again) that I did not have MS. That my symptoms may be the weird side effect of some virus. That they may or may not go away on their own. Then they shared that 50% of their patients have neurological symptoms that just don’t have a known explanation.
That was comforting, yet terrifying.
Back home we went with still no answers. I continued through daily life with three active kids and just made the best of it and started seeing a counselor to take care of my mental health. I went out with friends and started working out again.
Finally, in August, I decided to give it one more shot. I switched doctors and brought my long, drawn-out health saga to another office. My new nurse practitioner sat and listened and reviewed everything. She didn’t make me feel crazy and also didn’t tell me that I was just a tired mom. She ordered a new round of bloodwork and assured me we’d figure it out. Three days later, she told me “we found something”. WHAT?! My heart stopped. A thyroid antibody. That had never been tested for in my previous 5 rounds of bloodwork. She ordered a thyroid ultrasound and referred me to an endocrinologist. I cried that day too. For an ANSWER or something to pursue. For SOMETHING.
Three weeks later the endocrinologist looked over my labs and said “yep. You definitely have Hashimoto’s.” An autoimmune thyroid disease. Basically my body was attacking my thyroid, resulting in all of the symptoms that I had been having. Literally 8 months after I first started feeling dizzy, I had an answer. I was put on medication and while it didn’t go away immediately, it did. It went away. And I found a new normal.
Through all of that, what was I told over and over again? You’re probably just a tired mom. A healthy, tired mom with a sprinkle of anxiety. I heard it so much that I started to believe it.
Did everybody feel this way? Should I just get used to being dizzy and exhausted 24/7? The answer was no!
So if you need a push to advocate for your health, THIS IS IT. There’s no better time than now.
- Do your research but avoid Dr. Google. I Google diagnosed myself with everything under the sun in those 8 months. But I also educated myself on different types of bloodwork that could be done and/or questions to ask.
- Find your tribe and reach out. Early and often. Ask for help if you need it.
- Seek a second- and third- and fourth- opinion (if needed). Keep going until you find someone who will listen to your story and give you the time and energy you deserve.
- Listen to your gut. You know your body. You know what your “normal” feels like and what your “abnormal” feels like.