Summer has always been my favorite season.
Summers used to be coated in a honey haze of playing hide and seek, mother may I and tag with my cousins on languid summer days that never seemed to end. And on others, when the weight of being an only child, was heavier, I could log into my Webkinz account or crack open whatever novel I was reading at the time and be instantly transported among friends.
They started to look a little different when summer classes and internships came into the picture.
And now, summer has become one of my least favorite seasons.
Yes, it is an absolute joy to be able to move my hands more easily since they’re not absolutely freezing and to be able to venture outside to my favorite places more easily. But specifically, this summer and last summer have been so unforgiving — for a whole host of physical and emotional reasons. They have consisted of invasive procedures, infections and courses of antibiotics. And heartbreak.
As you can probably tell from this intro, a lot of life has happened since you’ve last seen my name on this page. Joe and I broke up at the end of July, and I will probably share more details of that emotional toll when the wound has healed over into another scar. But what I’m going to dive into in this column is the physical toll that the past month has taken on me.
Because I spent the month of August going through a couple of different health battles, while my local primary care physician has been repeatedly dropping the ball.
Hence the reason why I’m writing this piece, which is not meant to be an exposé on how the current health care system is failing people — even though it is — but more an insight into what my mom and I had to go through to get my doctor to even pay attention to me.
To begin this story — more accurately — we need to backtrack to about 25 years ago. When I was younger, around the time I was diagnosed with my condition, Spinal Muscular Atrophy (SMA), at 10 months old, none of the doctors in the Springfield area had any idea how to handle my condition because it is very rare. It sounds crazy to say now, but Boston wasn’t nearly as advanced in SMA care as it is now. There was a doctor who was a mecca for SMA in Newark, and for many years, my mom and I made the trek there to see him, until there was a strong enough team of doctors in Boston who could handle my care.
When I was younger, I was in and out of the hospital a lot due to severe respiratory infections. It was a struggle to get the doctors in Springfield to communicate with my team in Boston, who actually understand SMA. My mom had to fight tooth and nail for me to get the care that I needed.
On Aug. 7, I had my routine procedure to get the treatment, Spinraza, that I get three times a year. The day started out very smoothly, as it usually does, with me being a human pincushion. To make matters slightly more uncomfortable, my mom had accidentally forgotten to bring my seat cushion for my manual chair. And while she tried to use sheets from the ambulance to make a makeshift cushion, my left leg was growing completely numb the longer I sat there. By the time my mom and I had left phlebotomy, my left leg was very uncomfortable, and the worst of the day was still in front of me.
The actual procedure.
I’ve previously talked about how each procedure is getting more and more painful. And this one took the cake. I’ve experienced a fair amount of pain in my 26 years, but not many times have I actually seen red and started soundlessly crying from the impact of the needle. If I didn’t know better, I could’ve sworn my lower thigh was being ripped in half. But all I could do in the moment was breathe through it.
A couple of days later, I started having nerve pain running down both of my legs, which was dulled with Motrin and Tylenol. Then, I started having throat pain. At the time, I had chalked it up to a minor suctioning injury that would heal eventually. Then, I started with some other random severe symptoms that, as the week progressed, seemed to align with symptoms that I had with a previous urinary tract infection.
But significantly worse.
My mom had to call the on-call triage at my PCP’s, and my nurse brought my urine to the local lab. It turns out the triage doctor ordered the wrong kind of test, so they wouldn’t be able to see the results as quickly. Meanwhile, no one from my PCP’s office was returning my mom’s calls, and I was visibly decompensating. That afternoon, my mom had to go down to the PCP’s office, and demand to speak with a nurse. The nurse then convened with the doctor who agreed to put me on a broad-spectrum antibiotic, until the culture came back.
It would’ve been more helpful if they had actually understood the severity of the predicament from the start and answered my mom’s or my Boston doctor’s phone calls. Because for a healthy 26-year-old, a UTI wouldn’t be life or death, but for someone with an underlying condition, that is not the case.
Furthermore, we were only able to make progress with getting through to somebody consistently at the office, once we caused a stink about it.
The moral of the story: it’s not fair nor right that my mom and I had to fight to get my care acknowledged, by my primary. Meanwhile, my Boston specialists are consistently easier to get a hold of. Because while a lot has changed in the medical world in the past 25 years, it certainly hasn’t changed enough.
In fact, it’s regressing.
Gazette columnist Joanna Buoniconti is a freelance writer and editor. She is currently pursuing her master’s at Emerson College. She can be reached at columnist@gazettenet.com.