The older I get, the more I relate on a spiritual level to Mike the Situation from “Jersey Shore” trying to force his head through a concrete wall in Italy. A few weeks before my 30th birthday, my PH specialist gave me the green light. He told me I was doing well and that I will probably be kicking for the next decade and hopefully beyond. Something in my gut told me this wasn’t right, so I stopped writing. I didn’t share the good news. Instead, I waited.
A few weeks after my appointment, my doctor called me back. My gut feeling was right: Some of my tests had shown that the PH is progressing … which is a nice way of saying my body is trying to kill itself again. It felt cruel to feel as if I finally had permission to feel excited about my life, only to have it ripped away again just a week before my 30th birthday. On the bright side, I have minimal symptoms of the “progression” and my doctor is optimistic about me bouncing back. So, even the bad news isn’t as bad as it could be.
I had just started dating someone I met on Tinder, so I called him after receiving one of the worst phone calls of my life to try and have the “Hey, I just met you, and this is crazy, but I am getting sick again, so we should break up, maybe …” call. I wouldn’t have gone on a dating app had I known this would happen. Maybe I was naive, but I really thought things were under control and would be for a while. And in my trend of not learning lessons, I still feel as if everything is going to be OK — eventually. I just have to get over whatever hurdle I am currently going through.
Instead of being met with fear, I was met with compassion and support. So, I ended up spending my 30th birthday in Toronto with someone I had only known for a few weeks. I know this sounds like the start of a “Dateline” episode, but it was actually really great. He was patient and kind with my special needs, so much so that I didn’t feel as self-conscious for being “different” or “disabled.” I ended up having such a remarkable time on our trip that I forgot about how scared I was about the metaphorical PH Boogie Monster rearing its ugly head again.
Unfortunately, things didn’t work out with the person from Tinder, though we dated for several months. That should have been expected, considering how my 30s have been going. But at least my diagnosis didn’t play a part in our demise.
Right now, my life feels a little up in the air. I don’t really know what will happen, but I suppose none of us do. How does that saying go? The only thing guaranteed in life is death, taxes, and traveler’s diarrhea? I was a healthy 25-year-old until one day I wasn’t; illness, death, and just plain bad luck can strike anyone.
I don’t know how much a medication will help me, I don’t know which treatments will be available in the future, and I don’t know how my body will recover. And the fact that so much of what will happen to me remains unknown leaves a lot of room for hope. Doesn’t that mean anything could happen? Even the good?
Sure, my dirty (more like disastrous) 30s are off to a rocky start. I got some scary news, had a heart cath, got more crummy news … but I have also been truly living. And I think that is something I had been afraid to do since my diagnosis. I had forgotten the importance of trying to balance living life with a chronic illness while still maintaining some normalcy. As someone with a chronic illness, I still need to take my pills, get rest, use my oxygen at night, obsessively use hand sanitizer, and attend regular doctor’s appointments. But as a 30-year-old, I still need to be able to dream about a future, make goals for myself, stay up late on weekends, make bad choices about buying designer high-heels, and have dessert at least once in a while.
After all, can’t there be room for drinking an old-fashioned on the weekends if I promise to drink my green juice throughout the week?
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.