I have always believed that knowledge is power. In most instances I have found that the more information I have about a particular topic, the more at ease I am, my anxiety drops and I feel more in control (which in reality isn’t always the case so just go with me on this). However, I’m beginning to think that sometimes, in certain situations more knowledge can actually be damaging to my mental health.
Certain months of the year are rough only because of the amount of follow-up appointments Gavin has. January is one of those months. Thankfully this time we only go to two different hospitals/teams of doctors. The first check-up is one that he hates (only because he gets x-rays of his hips, which is uncomfortable for him) and while I don’t mind it – I don’t see many options for care other than additional surgeries. So yeah – that’ll be a good time. His next two appointments are both with new doctors (same day, back-to-back….what was I thinking?!?!) We’re checking out a new gastroenterologist and a nutritionist. Both are touted as “feeding” specialists and are part of his CP clinic team.
The appointment isn’t what has me on edge. It’s the damn patient portal. For all of his doctors we have a patient portal and to be honest some are better than others, from ease of navigation to the amount of information provided. Some of his doctors will give us a quick summary print out when we leave and others will say, “check his portal in about two weeks and all of our notes will be uploaded”. Well for this particular upcoming appointment I go in and check the portal – all of Gavin’s appointments for the next four months are listed (super specific too) but I wanted to make sure his insurance information was all set since we had a change.
I should have stopped after I checked. I should have. But I didn’t. After his last CP clinic visit I never went in to check their notes (we print and add them to his medical binder at home). In all honesty I forgot – it took longer than usual for them to upload the notes and then we got busy with other appointments, meetings and then the holidays hit. I read the two sets of notes from the two doctors we saw. There was stuff in both of these reports that I’d never seen before. “Sub” diagnoses that I’d never heard anyone say anything about so I did what any normal person would do and took to the internet. (Understand that when I say that, I mean I go to well respected, sourced medical sites to get the “normal speak” on what these things mean).
I REALLY should have stopped after I checked on his insurance update. My brain was SWIMMING with tons of new questions – least of which is why am I reading about this after the fact vs. having heard about it in one of his many past appointments?! Once my anxiety dropped and I could think without having a panic attack, I start to function again and realize there’s a reason they are “sub” diagnoses. I also remember the most important thing: Gavin is not his diagnoses. He does not now nor has he ever presented “typical to his diagnoses”. What I read doesn’t change all of his accomplishments. It doesn’t change who he is or how much his family and friends love him. None of it is life threatening nor changes the way in which any of his doctors or therapists approach his care plans. These diagnoses are just part of his overall CP diagnosis and something that needs to be noted in his charts.
I am no healthcare expert, nor am I an expert on CP. I am however an expert on Gavin and HIS CP and know everything there is to know about him – expect in this instance. Just this once, I don’t need to know ALL there is to know about his “sub” diagnoses – his doctors “got this”. My mental health is worth something too.