New Patient Preparations For People With Complex Chronic Illnesses

New year, new you?! Nah, me neither. Same me, but I’m okay with that. 😊

If you’re a regular around here you already know that I FINALLY experienced the ‘final straw’ and decided to switch to a new network for a new PCP, and hopefully new rheumatologist (if I ever ask you for anything it will be that you cross your fingers for me on this one). It’s been five years, and I’ve really tried to make it work, but even the last health care professional I saw at my PCPs office (who was leaving) told me I should see someone else outside that office. If that’s not a nudge, I don’t know what is, but it still didn’t push me over the edge. So, what did? Well, I’d set up a new patient appointment with a new PCP in the same network but at a new office and they called to tell me my case was too complex, and I would need to see another doctor in their network even further north (at least a 30 minute drive with no traffic (that’s a pipe dream, there’s always traffic…). And that my friends was when I just couldn’t with them, anymore, hopefully ever. After much scouring and many exhausting phone calls, I found a new PCP. It still feels too good to be true as this one is about a mile from my home and is also an internal medicine doctor. I feel like I deserve this good luck, but my inner skeptic is like, hmmm girl don’t get yours hopes up just yet. In any regard I decided to prepare myself as much as humanly possible for the best possible outcome, that way I cannot blame myself if it doesn’t work out.

If you’ve had a chronic illness for a while you’re likely very well aware of all the little details that go into a first appointment. It’s stressful to say the least. How do you present a complex case to a new doctor without A) freaking them out and/or B) watching them zone out? I’m not sure I have an answer for everyone, but I thought I’d share what I’ve done to prepare. (The appointment is actually tomorrow so I’ll check back in and add an update letting you know how my preparations went over.) My goal is to be as quick and concise as possible. I want the doctor to know I value their time, I’m not trying to offend them by explaining things they may already know (although not usually the case with MECFS), but I also have a LOT of information to impart so I need to be ultra-prepared.

To begin my preparations, over weeks and weeks I gathered all my documents, proofed them, and refamiliarized myself with them. Then I prepared a quick summary of the last five years and a list of questions. My plan is to let the doctor know beforehand that my summary will take four minutes to read (I’ve timed myself reading it). I’m letting the doctor know how long because I don’t want the doctor to spend the time I’m reading the summary worrying about when it will end. In the summary I will include a high-level overview of my chronic illness journey, and then close by letting doctor know I’m in no way trying to offend but I do have some recent articles, as well as details on everything I just mentioned. And then I’m done, five minutes tops. The rest is up to the doctor and I’m nervous, very nervous, but I’ve been preparing for many weeks.

If you’re wondering what’s included, I’ll list it here in alpha order:

  • Bateman Horne Center Health Assessment Worksheet – not only is this worksheet great, but so is this handout How to Communicate with your Provider
  • Diagnoses (Quick sheet) – List of diagnoses throughout the years.
  • Diagnoses timeline – A thorough master list of dates, doctor types, diagnoses, tests, medications, side effects.
  • Doctors (Quick sheet) – List of specific doctors I’ve already seen so that I don’t get referred back out to ones that aren’t familiar with my illnesses.
  • Lab work (out of range from this year) and abnormal recent test results – I’m including this because I have so many that I’ve received no feedback on. Yes, really.
  • Medications including side effects – List that includes side effects, so doctor doesn’t waste time trying to prescribe things that haven’t worked in the past.
  • Publications/Articles (recent) – Nervous about this one, some doctors just hand them back, but it’s worth a try. I’ve narrowed down to a couple.
  • Questions for new PCP, and a quick summary of my chronic illness journey – Tried to keep this as short and sweet as possible, leaving out feeling words and staying more with facts
  • Symptoms (all inclusive) – This hasn’t gone over well in the past, but I refuse to hide symptoms from doctors. I had a cardiologist tell me not to give the list to doctors as it’s overwhelming. Well, no ‘suffering succotash’ it’s overwhelming, that’s why I’m here.
  • Treatment summary from last Rheumatologist – Just so new PCP can see what was charted.

You may be wondering how or why I have all these lists or charts. Well, these are the documents I’ve been keeping and maintaining while filing, unsuccessfully, for SSDI. This content is what they regularly ask so that’s why I keep them as there’s no way I could ever remember most of it on my own. It’s exhausting keeping them current, but hopefully they’ll be helpful for the new doctor.

Thank you in advance for the good wishes and for stopping in today. If I’ve left something out you often use I’d love to hear about in the comments. I still have 24 hours left to prepare. 🙂 A few more doodles below. …And about that whole ‘New Year, New Me’ thing, you’re pretty nifty just the way you are! 🌸

Update:

You guys…it went really well. By having all the details to hand her I didn’t need to worry about adding little things into the conversation. I gave her everything I’d printed, including my summary, she spent the rest of the time asking me questions. I apologized for bombarding her and she was gracious. I’ll be resting indefinitely now (once this MECFS adrenaline rush wears off). Next stop once I’m able…lab. Thank you for your thoughts and prayers. 🌸 Honestly, if I had the energy I’d be dancing the happy dance.

21 thoughts on “New Patient Preparations For People With Complex Chronic Illnesses

  1. I have been through changing doctors and it is scary. You have prepared way better than I ever have. I think your new practioner will be impressed at how well you have put everything together making his/her job much easier! I have sent up a prayer that it will go smoothly……..Please let us know how it goes.

    Liked by 3 people

    1. Thank you, Sam! I try not to expect more than I give and I’m trying to impart five years of a rather unpleasant journey. Best to present it with a bow, I guess, I hope. My attorney for my last SS hearing said my file was over 800 pages of medical records so a four minute summary seems fair. 🙂

      Liked by 1 person

  2. I’m a little late to the party Mishka, so I hope your appointment went well. It sounds like you were well-prepared, and ready to partner with your new doctor. I really think doctors appreciate that. Please let us know how everything went. As always, I loved seeing your artwork. Sending gentle hugs your way!

    Liked by 2 people

  3. “… hmmm girl don’t get yours hopes up just yet” 😂 Yep, it’s sad that we feel like when something seems to be reasonably good that we’re sceptical because it’s so rare! You definitely did your prep for this – well done! It’s not easy physically getting stuff together let alone mentally. It’s exhausting and disheartening, but it’s worth doing because your health is worth fighting for, even though it can take so long finding a good doctor/PCP/specialist/surgeon etc.

    I’m so glad it went well! 😄 This is such a good example of the hope and effort paying off. Wooooohoooo – fab, fab news! I hope you’re able to spend the weekend resting, Mishka  ♥

    Caz xx

    Liked by 1 person

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