My POTS Diagnosis
“I have Postural Orthostatic Tachycardia Syndrome, a chronic illness. Chronic meaning it will be around for, well… ever, or at least until some genius finds a cure. At first, it took me a while to swallow that sentence. I will forever have to deal with this illness. My life was and is forever changed by this diagnosis.
If I am being honest, I grieved. I grieved the woman I used to be and some days still do. BUT, God. My mindset when it comes to all things is, even when you are thrown something not so pleasant in life, you take it for what it is and learn to make the best of it. Or as my late Big Papas always told me, ‘Get up and get tough!’ I added my own spin and started saying, ‘Get up and get tough, with a smile on your face!’ Cliche? Yes. Life-changing? Also, yes.
The Beginning Of My Story
My story starts back when I was 17, but to be honest, we didn’t know it would be part of this story today. See, I started having these ‘episodes.’ Imagine everything around you starts to spin, your vision goes completely black, you can hear those around you frantically screaming at you, but you are unable to respond to them…. You are completely locked inside of your own body. These are my ‘episodes.’ I have been dealing with this intermittently since high school. I have gone between being able to drive, being denied the ability to drive, and then being medically cleared to do so a handful of times throughout my life. Up until this last year, I had a 4-year reprieve from these episodes.
On October 21 of 2019, I got sick. Really, really sick. I had five of these episodes in one day and landed in the ER. They did extensive testing and every test came back ‘normal.’ I was bedridden for months due to my symptoms. I was unable to do daily things like wash my own hair, take care of my son, or go to work. My sweet husband stepped up like a champ. Though I can’t say he should ever go into the business of being a hairdresser, I am forever thankful for him.
Looking For Answers
Enter the quest for answers. Since last October, I have seen two primary care doctors, one Ear, Nose, and Throat specialist, one naturopath, two cardiologists, two neuro-ophthalmologists, and four neurologists. I have had every single test done under the sun. Five MRI’s. A CAT scan, Lumbar Puncture, ENT testing, heart scans… oh, and a $13,000 autoimmune blood panel. Yeah, you read that right, $13,000.
This past year has been nothing short of a roller coaster. Praying for a diagnosis. Praying a doctor would actually listen. Having an invisible illness is one of the hardest things I have ever had to live through. You know something is wrong, but no one can physically see it. Unfortunately, with POTS, all of my testings came back normal. Talk about frustration.
For me, it came to a point where I started wishing something abnormal would show up on my testing just so we could have an answer. How horrible is that? I re-read that sentence and think to myself, I was driven to this thought. Driven by doctors who wouldn’t listen. Who wouldn’t give me the time of day because they couldn’t physically see my pain and my tests were normal. If I am being completely honest, doctor PTSD is real and I hate that my family and I had to walk through some horrible doctor’s offices just to get to the good ones.
After seeing every doctor this side of the world, my quest led me to the University of Texas Southwestern Medical Center emergency room in desperation to be seen by someone who could hopefully help. This would be the first time we heard the term POTS. This led to my saving grace.
On February 23 of this year, my parents and I met my cardiologist who confirmed this diagnosis. He sat me down to draw out a diagram of what a normal person’s body does and what mine does. He simply said, ‘Mrs. Braddock, you have POTS.’
That sentence, those words… they were music to my ears at that moment. I knew POTS was chronic, but just to have a diagnosis and a doctor sit with me, telling me everything I have been experiencing is not normal and it is a part of my illness, gave me validation. He gave me hope. Even though this illness will forever be a part of me, I now knew what I was up against and could now begin to fight. I cried. My parents cried. I asked my doctor, ‘Can I hug you?’ We finally had an answer, we finally felt relief.
POTS isn’t just an illness that makes me faint or blackout. It’s an illness affecting my entire body. Essentially, my autonomic nervous system no longer functions properly. Everything our bodies do automatically, like our heart rates, temperature, blood pressure, GI function, etc, is impacted by this illness. My symptoms are a mile long and can change at a moment’s notice. For those that ask and wonder what those symptoms are, below are just a few to give you an insight into this crazy illness:
On an hour to hour basis, I experience dizziness, vertigo, syncope, dysphagia, chronic body pain, moments of extreme confusion, difficulty with my speech, tachycardia. I have random drops and spikes in blood pressure, which cause loss of awareness, migraines, tinnitus, tingling in my extremities, blurred and faded vision, inability to control my body temperature, blood pooling, chronic diarrhea/constipation episodes, and sporadic loss of leg function. My heart rate is abnormally high when I am in movement. Standing up raises my heart rate up to 130 BPM. Doing a load of laundry, I hit about 170 BPM. We can just imagine what working out looks like!
The first step in my treatment was a loop recorder surgically placed in my body. This monitors my heart continually. That surgery was simple but with POTS, my body is very sensitive to medication. The dose of Benadryl given to just relax me through the surgery knocked me out for 6 hours. It was the best sleep I had had in a long time and man, was I thankful for it.
I now have monthly calls with my medical team to go over any abnormalities my heart monitor picks up, which normally is quite a list to get through. I now see a Dysautonomia specialist as well, who has started me on a very specific treatment plan for POTS. I get up every morning and take my prescribed beta-blocker that helps control my heart rate. I am on the Levine protocol, a workout to help with my circulation and heart. I drink freshly juiced celery juice and a gallon of water a day. I consume salt like a fish in the ocean and drink electrolytes like they are going out of style. I check my blood pressure multiple times a day and consume an insane amount of natural herbs and supplements.
I never know what to expect with my body, how I am going to feel, or what will trigger my symptoms. It would be so easy to retreat and hide away from the world, because if I am being honest, going into Target is hard for me. Standing and talking too long is hard for me. I have almost fainted doing both things.
In my heart, retreating is not an option. Instead, I stay and fight with God and my family by my side.
Finding A Support System
Having a support system when you have a chronic illness is so incredibly important. I am blessed to have an amazing group of people by my side. My husband, my rock. He is understanding and knows when I am having a bad day. He picks up the slack, taking care of our son and me when I am unable to. He is my biggest cheerleader. My baby boy, well, let’s just say he gives the best snuggles when mommy isn’t feeling well.
I don’t know where we would be without my parents, too. My mom is there for every doctor’s appointment. She picks me up and takes me to run all of the errands when I need to because I am still medically unable to drive. She is my biggest fan and continues to push to help me receive the best treatments. My dad is constantly rooting me on, praying for me, and always there when I need him.
All of these people have taken the time to educate themselves on my illness. My family knows what it looks like for me to have a bad day, even when I am not vocal about it. They know when I have used too many spoons, or energy, and need to give myself a break. They know me and they fight for me when I can’t fight for myself. For that, I am forever grateful for each of them and the roles they play.
No matter what you are battling, you have the option to choose joy. You have a choice to see God’s grace and love through your circumstances. This illness has taken so much from me. It temporarily took away my ability to drive, my ability to take care of my son by myself, and my job. Just to name a few.
God has given me so much more in return. I am finally back working in a smaller capacity with an incredible company that has stood by and supported my family and me through this. I am learning how to better manage my symptoms and have the best medical team available.
God gave me a husband, a child, friends, and family that love me and support me. I heard him say, ‘Create The Happy,’ and that, my friends, is what has gotten me through the hardest days. You choose where you want to be in your circumstances. I choose Him. I choose Joy.”
This story was submitted to Love What Matters by Kaitlyn Braddock from Joshua, Texas. You can follow her journey on Instagram and on her website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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