Conducting an Orchestra

14 May

One of the most frustrating aspects of dealing with chronic illness is finding a primary care physician (PCP) who is not only willing, but ABLE to orchestrate your care. I was very fortunate in that I

That feeling you get when your treatment team is clueless about what’s really going on..

had been under the care of a fantastic doctor when I first started becoming ill. Due to insurance changes, I had to find another PCP which led to years of mismanaged care and me having to learn how to orchestrate everything on my own. I swear it was like showing up at a daycare and trying to conduct a bunch of 3-year olds with Fisher Price instruments. Don’t get me wrong, I LOVE Fisher Price, but the quality of the sound is only as good as the skill of the person playing the instrument…food for thought. Sometimes I think baboons would have communicated and worked better together! Of course, one might accuse me of being a sucky conductor, but in my defense, I had no formal training! You work with what you’ve got, and fake it ’till you make it.

Fortunately, I am now back with the original PCP (yay!), but one of the things I learned along the way was how to keep my treatment team on the same page. This is particularly important, especially if you have to apply for disability because your observations and notes about your progress become an official part of your chart.

I began making this update sheet because I was quickly noticing that no one knew what was going on. The clincher was when my last PCP called and questioned why I needed a home visit for Social Services to apply for assistance. “Do you have trouble walking?” he asked. This was less than 10 days after he personally wrote a prescription for a WALKER for me!

The walker my PCP promptly forgot I needed. This same walker serves as an excellent conversation starter with the elderly and gets stuck in boutique aisles while I’m trying to shop on Elmwood Ave.

I decided enough was enough after that conversation and I put together a sheet that I began to fill in prior to each appointment that would become part of my official record. It definitely helped and it definitely counted in my favor when it came time to apply for Social Security Disability Insurance. It is *very* important that each member of your treatment team is kept up-to-date with medications, tests, symptoms, and quality of life. I am including a link to a Google Doc of the form I made. Feel free to use it! My suggestion is to make a folder on your computer for each doctor so that you have a copy of each form you complete. I type in the info, print one copy for the doctor and save the original in that doctor’s designated folder on my desktop. Easy peasy and there’s no longer as much confusion about what’s REALLY going on.

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