Behind the scenes : my mama

Something a lot of people don’t totally process is that the hospitals and the doctors don’t come to you- it’s a constant fight to get seen.

A new symptom means a three month waiting list to see the dermatologist, hematologist, surgeon. And simply having the symptom doesn’t get you on the list automatically- you have to track down the department number, call and get through the front desk person to get approved to be scheduled, and then get an appointment — not for actual help, but for a consult to see if they’re willing to treat you.

People ask me how I navigate it all. The hospital hallways, the appointments, the six different specialists.

I’m about to tell you my super secret weapon… you ready?

My mom does it all.

My mom works in the medical field - she does ultrasound. This has been such an advantage for us as we’ve navigated the “health maze”. She knows all the medical terminology, knows just who to call for what reason, and is aggressive when it comes to front desk people haha. She calls them the “gate keepers”, because sometimes they’re just lazy and won’t put you through to get an appointment. Lucky for me, my mama is persistent and will keep on keeping on until she gets me seen. See what I mean? It’s a constant fight.

My mom is also a researcher. There are so many mornings I come downstairs to see her in her pjs, drinking coffee, scrolling through some online health journal, reading about a study being done somewhere else in the country. If it sounds like theres the slightest chance it could help me, she’s on it! Emails are sent, phone numbers dialed and plane reservations made.

We’re in the process of sending my paperwork and testing over to National Institute of Health to see if they’ll take my case, and it’s A LOT of paperwork. You have to gather every test that’s ever been done, every study’s information, every x-ray, every appointment with a specialist that’s on record, letters from doctors who have taken significant part in my care, and mail it to the new hospital. I have no idea where to even begin with all of that. But ya know what? My mom did it all. Not to mention, this isn’t the first, or second, or third time she’s done this.

Having this disease doesn't mean doctors come at me like news reporters and beg to try and fix me. I have to beg to be fixed. Except, I’m really lucky, and I have the kind of mom who relieves me from that burden, and begs for me. Ever since my first gastric emptying study, to my first hospital admission, my first enema (yikes), to my first feeding tube, my mom has been right next to me. From the very moment I faced the misfortune of becoming a hospital kid, and every single day since.

My mom has spent weeks sleeping on hospital couches with terrible internet connection, woken up in the middle of the night to change my bed sheets due to tube leaks, slept with me while I was was septic to pile on blankets when I got chills, and then take them off when I started to sweat, and repeat.. and repeat.. and repeat. She has always been there. As a matter of fact, she hasn’t just been right next to me, she’s been in front of me. Being proactive, solving every problem or discomfort she can, creating tools if they don’t already exist.. She does it all.

No one has tried more to understand my unique nerve pain and abdominal spasms and tried to bring relief and answers. She always remembers the constant quirky aches, pains, inabilities and weaknesses that many don’t know or think about. I guess that’s part of the “mom” description - to think about stuff like that. To care if your kids are hurting, and practically hurt with them, but I know not everyone actually get’s lucky enough to have that kind of mom.

Thanks, mama. You have been keeping me alive.