This is the second part of Amber’s story. Check out part one here.
June rolled around, and my appointment with the rheumatologist came up.
The hour-long car ride there made me extremely dizzy and nauseous. This was the longest car ride I had taken since becoming sick, and this was before I knew to prop my feet up or wear compression socks.
We made it to the parking lot of the rheumatologist, but by then I could just feel my heart rate skyrocketing and felt numb almost with severe chest pains, so my husband and I decided to call an ambulance, because I knew I wouldn’t be able to make it in the office. Once the ambulance arrived, they told me I was extremely dehydrated when I got in and started an IV of saline and took me to an ER about 30 minutes away. They did some tests and took an x-ray of my chest. We tried to explain to the doctor when she came back all the problems I had been experiencing over the past few months. She told me that didn’t matter and to get to the point of why we called the ambulance. A few minutes later she came back in to say that the x-ray showed nothing, and that I had experience an anxiety attack.
At that point we were furious.
I knew I didn’t have an anxiety attack. I wasn’t even anxious about the appointment, if anything I was looking forward to getting answers.
Needless to say, I was ready to get out of there. She wouldn’t even let me finish getting the IV fluids even though I told her they would help me. I’m sure my insurance had to pay for a full bag even though I only got half. They gave me a prescription for anxiety meds and pain meds, since my chest had been hurting and sent me home telling me once again to follow up with my PCP. Needless to say, I will not be going back to that ER and will be sending them information about POTS so they can be aware of it in the future.
I was referred to an electrophysiologist cardiologist once my local cardiologist determined that the structure of my heart was healthy.
I had to wear another heart monitor, but this one I wore for 30 days. I tried to work, but I was still having a hard time and only making it in every now and then. Finally, after the 30-day heart monitor, the cardiologist thought it could possibly be POTS and scheduled a tilt table for August 23, 2017. Once August 23 finally came, after what seemed like forever, the tilt table test confirmed that I had POTS.
I was still strapped to the table feeling like Frankenstein when the doctor told me, but I couldn’t have been happier to hear that my struggle was real and it wasn’t in my head. It felt so odd to be happy to hear that I had a chronic illness that has no cure. I was given a prescription for a low dose of fludrocortisone and told to buy compression socks/tights. I did, and they helped some– but still not enough, because I was still so weak and fatigued. Another month passed and he decided to prescribe a low dose beta blocker.
September came. I had been asked to be a bridesmaid in my brother’s wedding long before I got sick. I wanted to put my meds to the test and somehow survived. I honestly expected to wind up on America’s Funniest Videos from passing out or something, but I didn’t. I am so glad I pushed through my symptoms and conquered my fears. I made it standing through the ceremony and I even danced to several songs and played corn hole.
It was the most I had done in months.
There was way more than just my compression stockings and converse keeping me upright that night. My excitement and adrenaline must have got me through it). At that point, I began to see that things wouldn’t always be so bad. I remember thinking at the time “What will people at work think if they see photos or videos of me and I haven’t been to work in so long?”
I look back now and know how naive that thinking was and know just how unfairly those of us with invisible illnesses or disabilities can be treated. We are just as capable of enjoying ourselves as anyone else. I am so glad I enjoyed myself and did not let that negative thinking hold me back. It was the best I had felt in so long, and I took full advantage of it.
The following day I did have lots of regrets, as the adrenaline wore off and I was drained once again. My meds did do their job though, so I was curious to see if they could pass the test of work. My time was running low, so I had to see if I was capable of working. I attempted once again to try working in my office for a few hours at a time but could only make it for short periods of time. At this point I knew I was running low on time and unfortunately, as much as I hated to admit it, I knew I wouldn’t be able to work full time as it wasn’t fair to the people that had been covering for me for the past five months. Ultimately, my time ran out and I was let go in October 2017. It was so hard for me to face because I had worked there since I was 16, but I knew it was the right move for me. I needed to take care of me first, my health was much more important, and I couldn’t handle the stress and manage POTS.
Fast forward to now and I am doing much better with my new haircut. It definitely helps with my heat intolerance and the color just keeps it fun (soon to be turquoise for Dysautonomia awareness this month). My meds, the occasional shower chair, compression socks/ tights, exercises, Gatorade (they really should sponsor us potsies), and salt intake have all helped me to better manage my symptoms and make it on this journey. I still have good days and bad days, but I am grateful I am not as bad as I was before. I’m definitely not 100% and I know that I might not ever be and I’ve had to come to terms with that. I’m just grateful for all that I can do, even housework. I try my best every day to conquer my fears (like “what if you pass out?” or “what if you have a dizzy spell”). For the longest time I didn’t feel well enough to even go to the store with my husband (who would have ever thought going to the grocery store would be considered an accomplishment at 28), but now I have learned when I am able to push through (I also have to give myself a reality check sometimes of when not to push through) and I have been able to do so much more than I ever thought would be possible again( I have even been playing tennis with my hubby on cooler days, very badly, but being active none the less).
So, if you are on this journey too, please know that you are capable of more than you know.
Phew! This story was a lot longer then I planned, but if you have read this far, thank you for reading! If you have POTS or any type of chronic illness please know that brighter days are ahead. It’s tough, but I try to see the positive in things. The negative will only eat away at you.
Also for anyone who reading this and is considered healthy, please don’t take your health for granted. I know I did and I would do just about anything to not experience these daily symptoms. Illness is not prejudice and can strike in many forms at any age. Keep in mind that those of us struggling with a chronic illness have different issues from you now and we might need your helping hand or listening ear from time to time. Know that not all illnesses are visible, so don’t be so quick to judge. As angry as I am at this journey, I am just as grateful for the lessons it has taught me. I have learned to slow down and enjoy all the things I once took for granted. Those dirty dishes piling up in the sink, that mound of laundry, or stack of work can wait– there are memories waiting to be made. I have learned to have grace and patience with myself and others, as we are all facing some type of struggles.
Hug those close to you, take a minute to step outside and enjoy your surroundings. There is so much beauty that we miss in this fast-paced world of ours.
Thank you again for taking the time to read my POTS journey! I will continue to “Dream On” and pray for a cure because there are so many of us struggling. It’s hard to believe some are in high school when they are diagnosed, or have multiple illnesses.
Iwas so thankful that my diagnosis was quick compared to mos,t but I hope it can be quicker for others if we keep spreading awareness. Thank you to Dysautonomia Advocacy Foundation for asking me to share my story and for spreading awareness. I hope it can help anyone else that is struggling.
Remember, if our stories aren’t told, awareness won’t happen. People won’t know just how difficult it can be. Thank you Ryan for being my rock, and sometimes even letting me prop my feet up on you at appointments! Thank you to my family. They are my greatest support system! I know it can be just as much of a struggle for our families, my poor husband gets the burnt side of the toast most of the time when I’m frustrated. Make sure you let those close to you know how much their support means to you. And most importantly, thank you to those fighting a chronic illness that keep on fighting! Stay strong and remember to laugh each day!
To learn more about dysautonomia, check out the Dysautonomia Advocacy Foundation.