Health update.
Another post, another diagnosis.
I cannot believe it’s taken me over a year to finally get answers from doctors.
I have now been diagnosed with postural orthostatic tachycardia syndrome (POTS).
I had convinced my cardiologist to refer me to get a tilt table test (TTT) done a few months ago and the test finally happened this last Thursday. It was pretty horrible. I had to hold my metoprolol the night before and also not eat or drink for 6 hours before the test. So I showed up feeling pretty dizzy and fatigued, then they put an IV in me and strapped me to a table. Then the table went from being horizontal to vertical and I was held in that position for 30 minutes, except that once minute 16 happened the nurse said that she had enough data and put me back down. At that point I was dizzy, light-headed, sweaty, and my vision felt like it was going. Then when the NP came in with the nurse she was like you have POTS.
That was when I started crying. I’ve known that I have POTS for at least a year now but I haven’t had the actual diagnosis to put into my chart or officially tell people.
I know some people with POTS are able to be more mobile and just have salt on them for when they feel like they are going to pass out; however, salt has never helped me. It doesn’t make me feel any better. So, I am seeing my cardiologist in a few weeks and will request a referral to the POTS specialist at University of Michigan.
I am honestly just in shocked but also not shocked. It’s such a weird feeling. Now I can start telling people, hey I have POTS and PCOS and my body is not functioning well, but I’m working on it.
I finally have more of a direction towards more answers and hopefully a better quality of life. I cannot wait to feel better and be able to walk down the street and not feel so disabled… because that’s how I feel right now. I feel like I do have a disability, not that there is anything wrong with that, but it’s killing me. I hate feeling like I can’t drive or go on a walk or go too far from home because what if I need to lie down? You can’t really do that in public without freaking some people out. I hate being a burden on people. I have always loved being independent and knowing that nothing can slow me down. Except now I don’t have that. I don’t have the freedom that fully healthy people have.
I told my therapist this last week that I wish I could make an announcement to all of the healthy people and be like don’t EVER take your health for granted. Your health can be gone in an instant and you never realize what you have until it’s gone. I wish more than anything that I could be healthy again and people just don’t realize how lucky they are.
I know that this blog probably doesn’t really reach a lot of people and it’s more of just a therapy for myself at the end of the day to write out my journey and my thoughts, but even if this reaches one person, just don’t take for granted your health for one day because you never know if someday you’ll wake up and it’ll be gone and you’ll never be able to go to a music festival again or run a 5k.
It’s crazy how the little mundane things in life I used to think were earth shattering, like having a flat tire or having an acne outbreak and now those things might happen and they don’t faze me like they used to. They matter but not as much as this health stuff that I am going through.
Okay, I’m going to end it here… but coming up next I am being tested for celiac disease, doing my yearly physical with my primary care physician, meeting with my cardiologist, meeting with the Michigan Bowel Control Center to get established as a patient, meeting with a cardiologist at the University of Michigan to get established there, and then also meeting with my ENT doctor to talk about my sinuses. So lot’s of exciting things are coming up and I know I’ll continue to get some help but the journey is not over yet…. but somehow it doesn’t feel so dark anymore now that I’m actually getting the help that I need and finding medicines that help me to feel more like me.
Until next time!
(Picture from Mukwonago, WI, USA.)