I'm sure that some of you have been following along with my dear friend Breck's current situation with her son . She's got understanding from the rest of the CF community who lives through these same trials and tribulations every day, and shes got empathy and compassion from just about everyone else that I can imagine as she handles this situation with courage and grace, and shares about it bravely. I love her dearly, and I'm pissed off.
For those of us living with chronic illness, there is never time later. The frustrations of the current healthcare system, the shortcomings that we are just left to wade through on little sleep and high emotion, aren't getting fixed because when we are in the midst of them, our short term goal is to simply get through it. We do it the best way we know how, fighting the fights that we can, using what energy we have, and we swear that when we make it through this something is gonna change. The reality is that we are never through it. We go from one situation into the next into the next. There is never a period of time where our spirit and soul can handle fighting so hard for what we want changed while we carry the weight of the illness and the situation at hand. But it must! It must change.
There are guidelines from the CFF that are saving lives, infection protection guidelines that are recommended, based on science, evidence, proof, that their implementation will help to halt the spread of infection, yet I regularly read of discrepancy of implementation of these guidelines, hearing from friends and relatives who work within the CF community that institutions don't or aren't able to implement the guidelines for numerous reason. Health literacy is so low for so many people, and what they don't know is killing them. How can they insist that CFF guidelines be followed when they don't even know or understand them themselves? When we blindly trust our care teams, that they are doing all that they can for us, we also have to realize that sometimes we need more than they have. We parents, patients, we need to play an active role in understanding and managing our health and care.
This isn't just related to infection control. Some centers do cultures every visit, some do them twice a year. Some reuse nebs on the inpatient units, rinsing with sterile water after each use (which sort of blows my mind that anyone thinks this "cleans" a dirty neb?) while others use a new neb for every treatment. There is discrepancy in the order medications should be taken, the air pressure that the nebulizer should be set to, the recommendations on enzyme brand or dosing, when you should opt for a PICC line over an IV and who gets to decide how many times the kid should pricked before a change is needed. Some centers offer patients help with organization of co-pay assistance programs while others are only fortunate enough to learn about them if they stumble upon the information on Facebook. Even when we do figure out what's "best", or even whats best for us, then we have to see if our insurance company agrees. This isn't just in CF care, it is happening in chronic illness across the board and its simply unacceptable. Then armed with the experiences of dealing with these insurers and these drug companies and knowing what trouble one will have to go to in order to have a certain care regimen approved or denied, patients are only being given the easy option, because no one has the time to fight, to figure out how to navigate the appeal process after one received a decline. And even if someone does it and shares it there is no guarantee that it will work for the next guy. But we share anyway, fighting as hard as we can with all that we've got.
In a conversation with my dear friend about this surgery her son is going through, we started to reflect on how little we actually know. And not like me and her "we", like the whole community. We are guessing so much, trying new things based primarily on the advice and expertise of our doctors and care teams, patched together with what we may have seen Facebook or read on some blog. This is how we are running this game. We are trying to figure out what works for us, personalized and precision medicine, but I know that precision medicine isn't going to work beyond me if there isn't a way to capture and organize this learning. How can my experiences make it less shitty for the next guy? What order of medications, or infection control protocols are going to give me the best shot? If the health literate, like us, like folks in other chronic illness categories are having this hard of a time navigating the system, it feels hopeless for everyone else.
How do we change this? The weaker man is the only one compelled to fight like this, who sees the things that need to change, the things that really need to change, firsthand. We are exhausted, and desperate, yet hopeful. We appreciate the efforts of those trying to help, but we've gotta figure out a better way to help you help us with what we really need.
I described to my friend last night how looking at her situation has given me a little perspective. I finally feel like i'm on the outside of the snow globe looking in. I think of this life a little like a snow globe. Its pretty and peaceful, but not much ever changes. We are trapped inside of this thing called chronic illness, and while its changed our lives in unimaginable ways, both good and bad, we can't get out. Every once in a while something shakes us up and it takes a while for us to simmer back down to our peace. It feels like a dream sometimes, but waking up just takes you right back to more of the same. Its the same routine, usually plus a few every couple weeks or months or years, never less. Its exhausting to think about it, much less live it. And there's never time later. What can we do today, right now, to change that?