I have been going to the same healthcare clinic for the past 18 years for all of my primary care needs. Because I had a situation go not so bueno with my ObGyn during my pregnancy and delivery with Hannah, I struggled for a while to want to go in and see any healthcare provider, so I have a record of tending to go in only when I need to (as in, something has definitely gone wrong for me to show up). The past couple years, I have been trying to improve and actually show up consistently for yearly physicals.

My bloodwork results, by the way, are pristine.

I was in last week for a follow up with the provider who has become involved in my care since my most recent onset of symptoms. He expressed concern about how far out the MRI’s are. That my friends, is US healthcare. There is a provider that could have gotten me in sooner for the MRI’s, but they won’t take our insurance. That’s the hill the best possible healthcare outcomes die on for many people in this country. And, often, even if a provider does take their insurance, they can wait months or years to see the appropriate specialist or be put on the most efficacious treatments because of this perhaps.

I know the first neurologist a provider from my PCP tried to get me into is booked as far out as their schedule is open in their system, which is into the spring of next year. This Thursday I’m scheduled to see a neurological NP, and even at that, I feel lucky. But if the diagnostic process ends up showing something that immediate treatment would have been best for ?

I try not to think about it, but I can’t remove the awareness from my mind.

All I can try to do is see the positives. Like, yesterday, I noticed that on the Gabapentin, my walking heart rate is in the 70s or 80s. It hasn’t been that way since I developed POTS. Now, depending on what the diagnostics find, I may need to be on it anyways, but if not, I may ask to stay on it because they’ve not been able to medicate me with anything that could help with the POTS previously. My resting heart rate is too low for Corlanor, and I can’t do BETA blockers because I need to be able to use epi. I don’t seem to respond well to SSRI’s, which sometimes in small doses can help with POTS. And so my functionality and exercise options, while not bad for a person with POTS because I dialed in every lifestyle support I could for the condition, would definitely be improved by this medication from everything I’ve seen the past few days.

So, it’s a positive perhaps. My system seems to be tolerating this med quite well, I don’t actually find it to be sedating. Outside of that, all I can do is be thankful for what I can still do. I am focused on meditating more, listening to songs I love (right now “Loveo,” “Zona De Riesgo,” “Please, Please, Please,” and “Greenlight” are some of my favorites) because I feel like controlling my stress responses is going to be the next best thing I can do right now while slogging through the diagnostic process. I prefer not to listen to anything with darker overtones right now because it just tanks the spirits too much.

Doesn’t mean I don’t have my slip ups there. I started listening to and binge singing in my head “Don’t Know What You Got (Till It’s Gone)” before I caught myself and redirected to different songs because it just wasn’t helping to focus on how much I wasn’t appreciating how easy I had it when Mast Cell Activation Syndrome and POTS were my only challenges. Better to focus on the time I have to enjoy with loved ones or other activities as I can. And the hope that whatever this is can be managed in a way that won’t be significantly life altering.

Better to see the positives, because the negatives might not be changeable and they sure can suck a whole lot more if you look at them too long.