I know a lot of people have been wondering what came of the Mayo Clinic. I’ve had a really hard time talking about it and didn’t even want to write about it because I feel so sad. They didn’t help with my blood disease. The Dr said there was nothing they could do but stronger chemos…which wouldn’t heal my body of it. That was pretty disappointing and hard to hear.
All my new symptoms that I’ve had since Kauai, well they figured out it wasn’t anxiety. Ha I knew it wasn’t! Which honestly drives me crazy that I was in the er 5 times in one month and they sent me away every time saying it was just anxiety. Turns out I have a new disease. Yep sadly they didn’t cure my old one. They just found a new one. It’s called POTS. Basically my heart rate goes freakishly high like I’m a man running full speed in the Olympics, not just a 23 year old girl standing. And while that’s happening no blood is getting to my head. So there’s no circulation or blood flow in my brain. Which I’m telling you is debilitating. They did a tilt table test on me which is where you’re strapped down to a table and then put upright and they check your heart rate, blood pressure and I was hooked up to an eeg so they saw how my brain was working during it. After 5 minutes of upright I was so sick but the women we’re so sweet and kept encouraging me to keep going. The longer you’re up the better the results are so I just
stayed. After 15 minutes I was sweating like crazy, couldn’t breath, my legs had the sharpest tingles, I was so nauseous and I just couldn’t do it. Somehow those women convinced me to stay. Right at 25 I said something’s going to happen and the next thing I knew I was laying flat and they were yelling my name. I completely blacked out after 25 minutes.
I’m glad I don’t feel like I’m going crazy anymore. I knew I always felt like I was going to black out and we’ll turns out I can’t stand up for very long because no blood is getting to my head. It’s incredibly hard for me to deal with the fact that I have another disease that came on randomly. I don’t know when I’ll be able to comprehend it. It’s completely changed my life. And I haven’t been this sick, this consistently for this long. My heart is broken. My faith is weak.
I’ve gotten so much “advice”. ” Just be more thankful”. “Don’t give up.” “Have more faith.” “It could be worse” ha honestly I’m kinda going crazy at the words people have said to me. Rousseaux said, “if bad advice were medication you would have overdosed by now.” So true. You can’t quite understand something like this unless you’ve gone through it. I don’t want anyone I know to ever go through this but this is my life. People need to understand how their words can effect someone who’s suffering and can’t do anything about it, greatly. Please be careful with your words, please.
I start on new medication for it today. I’m pretty freaked out. The side effects are pretty rough. I hope it helps. Do I want to be full of medication. No. I’m done with medicine and the side effects and the long term side effects that no one really knows about. But if I can feel like I’m not going to black out, like my heart isn’t racing so fast and I can hear every heart beat so loud in my head that my head has been killing me for months… I will be grateful for Medicine!
So I have ITP and POTS. Once you have one auto immune disease you’re more susceptible to more. I never imagined I’d get more ha but that’s life. I’m doing all the research possible to be rid of these and one day I hope to truly be disease free and live a life where my body feels good! Oh how I dream of that day!