“I have always been sick, on and off, since I was a young child. Growing up, no one ever understood how I felt. Family members never believed me and I feel like I missed out on a lot of things throughout my childhood due to always feeling extremely sick. My pediatrician was the only person who believed me, and he did his best to treat me with what limited resources he had. I remember he once said, ‘You feel like you are a prisoner to your own body,’ and that really is true. I always managed the best I could and was able to push through.
Around the time of my wedding, things really started to go downhill. I got very sick and had many different symptoms. I ended up in the emergency room on numerous occasions for a multitude of symptoms. I could not stand up without my heart rate shooting up extremely high. I was finally diagnosed with Postural orthostatic tachycardia syndrome (POTS). POTS is a part of dysautonomia. Dysautonomia is when your autonomic nervous system malfunctions, and does not work correctly.
I started to see an amazing team of doctors at Ochsner in New Orleans. One of the neurologists referred me to a POTS specialist at LSU Medical. My specialist performed autonomic testing, which proved I did have POTS/dysautonomia. I am still undergoing tests as of right now to help further determine what may be causing my dysautonomia. This will help doctors to be able to treat me better. Along with the POTS diagnosis came extreme anxiety. I don’t think I ever knew what anxiety truly was until my POTS got extremely bad.
The symptoms that come along with POTS can be extremely unsettling and frightening. My heart rate can go up 200 beats per minute as soon as I stand up, while my blood pressure drops extremely low. This causes me to feel extremely dizzy and on the verge of passing out. I always get palpitations that make my heart feel like it’s skipping, along with chest pain. You can only imagine the many scenarios I have come up with inside of my head when this happens. At one point, I had convinced myself I was dying. I just knew POTS was going to be what ended up killing me.
I can’t fully blame all of the anxiety on myself. Your autonomic nervous system controls various parts of your body, including the part that causes anxiety. It was the perfect storm. I had let the anxiety take over my life. I remember one day my mom had to leave work to come and sit with me because I had worked myself into a panic attack. I remember crying and telling my momma I didn’t understand why this had happened to me, and I didn’t want to feel this way anymore. I didn’t think I could take it anymore. I felt defeated, tired, worried, and scared. I felt guilty for not having sympathy for others with anxiety until I knew what they suffered with. Anxiety is something you will never understand until you go through it yourself.
I had just gotten onto the right medications and had just started to learn to live with this monster of an illness when I found out I was pregnant with my second baby. I had to go off of one of my medications and lower the dosage on another one of my medications. This was brutal. I didn’t know how I was going to make it but I knew I had to do it for my baby.
I ended up having to go for weekly saline infusions to help control the POTS while not being able to be medicated. As I went to the infusion center every week, I met different people going through different things. A lot of them had terminal illnesses like cancer. After one of my infusions, I left and I broke down in the car. I don’t think I have ever cried as much as I did in that moment. Reality hit me, and I saw so many others going through things they wouldn’t ever be able to recover from.
I realized I still had time left with my family and even though I was going to still have days where I may not be able to leave my bed, I still have this gift called life. This precious and sweet gift we so often take for granted. It was in this moment I knew I was going to fight like heck for my health, and I was not going to let this overcome me anymore. I had to buck up and speak truth to myself. If I wanted to feel better and be the best mom, wife, and daughter I could be, I had to start doing the things that would help me.
For me, this includes drinking lots of fluids, eating lots of salt, wearing compression socks, exercising every day, staying in the word of God, doing self-development, and educating myself on my illness so I could do everything in my power to feel the best that I possibly can. I had my son and have even made it almost 5 months breastfeeding so far without any medications. I could not have done this before! I still have bad days, and I have to do things differently. If it means I have to sit on the floor in Target to nurse my baby because I can’t stand up any longer, I do it without any shame!
Since then, I have made it my goal to educate others on POTS/Dysautonomia. I have also made it my mission to encourage others going through the same things as me. I like to remind them it can get better and they don’t have to let this illness take over their life. I see so many others struggling with the anxiety and depression that comes along with this illness.
I want them to know better days will come and they don’t need to give up. My children now see the same pediatrician that helped me all those years ago. He recently told me he has never seen someone grow and flourish as a person as much as I have, and that meant the world to me. I am so proud of myself for overcoming the things I have had to go through. Some days are still extremely hard, but I am not giving up anytime soon!”
This story was submitted to Love What Matters by Daisy Jane Wood. You can follow her journey on Instagram. 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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