I apologize that my first few posts may be a bit somber and lacking in wit… The early months of this experience were utterly terrifying. Practically overnight, I went from a do-it-all Pinterest mom, to someone who could barely get up off the floor to feed her children. It’s been just over 7 months since the first 911 call… It hit me like a ton of bricks that day – almost out of nowhere. Summer had just started and I was in a really good place. The rain was leaving for a few months, I was happy, full of energy, and couldn’t wait to take the boys to the park everyday. There are great farmers markets here and I was looking forward to going to at least one every week. We were living a very healthy lifestyle. My oldest had just turned 3 and helped me plant our own little garden. The baby was about to be 1 and I was thrilled to plan a little party for him. I was watching a friend’s son several days a week and things were near perfect.
A few months prior to my first episode I had visited my doctor because I had concerns about my thyroid. I had a huge appetite but was slowly losing weight regardless. At first I chalked it up to breast feeding but noticed a few other symptoms – hair loss, tremor, palpitations. She could feel that my thyroid was slightly enlarged on one side and sent me for labs. Those came back normal so she recommended I see a nutritionist and psychologist – perhaps it was anxiety or depression or something missing in my diet. I trusted her so I followed through with those appointments.
I had also noticed that I couldn’t drink my morning coffee anymore. It made my heart race and increased the palpitations. I was also starting to have trouble taking the boys on walks. I would find myself out of breath, with little exertion, and felt dehydrated all of the time, no matter how much I drank.
My husband’s grandfather had passed away and he was driving home for a couple of weeks for the service and to see family. With his job, he is gone quite a bit and while I’ll never get used to it, I had become pretty confident in my ability to take care of the kids and house whenever he was gone. This time was different. A few days before he left I couldn’t shake this feeling that something was going to happen while he was gone. I couldn’t put my finger on it but I wasn’t feeling right. I decided to go to the ER the day before he left to get checked out for the palpitations and trouble breathing. After seeing that I had a history of treatment for anxiety in my chart, they quickly dismissed it as such and sent me on my way, recommending I follow up with my doctor. I’ve had anxiety (that I could manage fairly well) since I can remember. This just felt very unfamiliar. I didn’t know how to describe it other than “this feels different.”
After my husband left, I told my 3 year old that if anything happened to mommy, he needed to go next door to get the neighbors. My husband had been gone for a few days and I was having trouble standing to cook meals and couldn’t play with the boys like usual (the 3 year olds called me “mommy hulk” and loved being chased around the house). THAT morning, I was sitting in the living room watching the boys and their friend play together. I called my mom, who lived out of state, to tell her I was feeling weird. The baby toddled off into the kitchen and I heard him playing with the cat’s food (a new favorite past time) and got up to go get him and fish the kitty kibble from his mouth. As soon as I stood up, my heart began racing and pounding like never before. I was sweating, starting to black out, and felt nauseous. I hung up with my mom and called 911. I was sure I was going to die alone in the house with three small children in my care. I couldn’t see, and all I could hear was my heartbeat in my head. My oldest and his friend went next door to get the neighbors. The paramedics whisked me away and left the boys in the care of the neighbors until my friend could get there.
After running some tests at the ER and determining my heart was “just fast – you had a panic attack”… I was given the boot. My friend took me to her house to stay the night so I wouldn’t be alone. While we were eating dinner, my left arm cramped up and went numb and the racing heart came back. I was having trouble regulating my breathing and hyperventilated without realizing it. Now comes the second 911 call of the day. After the paramedics listened to my story a bit, they decided this was probably thyroid related and took me back to the ER, requesting tests on my thyroid be done. As they wheeled me in on the gurney, as if I wasn’t embarrassed enough already – the charge nurse rolls her eyes as she looks at me, saying, “Oh the anxiety one again? She can just go to the waiting room.” I absolutely KNEW this was not my anxiety but had no way to prove otherwise to these people – they refused to run the thyroid panel that the paramedics thought I needed. After being discharged, again… My sweet friend took me back to her house for the night.
My primary care doctor, whom I trusted, was being sent to Germany and I had been reassigned to a fresh out of med school Army doc. I had an appointment with him the following morning – one that was videotaped so he could be critiqued by the doctors in charge. No surprise… He prescribed me an anti anxiety medication that was safe for breast feeding and recommended I see a therapist ASAP. Follow up appointments with him followed the same pattern… At this point I was unable to stand or walk for more than a few minutes before I’d get weak, shaky, and start blacking out. He sent me for blood work and I had to be wheeled back to the clinic – yet still he said, “just anxiety”.
It makes me incredibly angry that anxiety, depression, and other mental health disorders are referred to as “just” conditions… As if they aren’t a big deal. It’s “just anxiety” or “just depression” and you get sent on your way like they aren’t real illnesses that can be detrimental to your life. The only reason I knew these weren’t the answer is because I have been treated for legitimate depression and anxiety before and I know exactly how they feel. Otherwise, I would have believed what these doctors were telling me. What I was experiencing now was entirely new and different, but the doctors I kept seeing refused to look past my mental health history and truly LISTEN to what I was saying.
Sadly, for anyone who IS dealing with mental illness, they’re frequently made to feel like they should be able to overcome their struggles – “mind over matter, buck up!” – and if you have a physical health condition that may not be the “norm”, you’re brushed aside and left terrified, trying to figure it out on our own.
My last appointment with that doctor, I was left alone in an exam room for an hour because I couldn’t stand up and walk to the car, sobbing, and begging him to figure out what was REALLY wrong with me when he returned. That was the last time I saw him! Unfortunately, it wasn’t my last time seeing a doctor that didn’t believe me… That seems to be a common theme among patients with “invisible” illnesses. Dysautonomia is considered to be one of those.