Day 19: I've never been good at juggling...

 


    I have thirteen (or more?) different providers and I've been onboarding two insurance reps, one that works with finding care and one that is supposed to help me with claims.  Most of my appointments are about a two-hour drive away, and driving is really hard for me.  My husband does the best he can to help out, but he has to work to pay for all of this!  In addition, I'm on about 20 different meds and supplements that I try to keep track of.  Some have to be taken away from food, some with food.  Some have to be taken away from other meds and supplements.  Some are in a days of the week container on the counter that I refill every week, others have to be in the fridge - those are the hardest to remember.  Every doctor wants to know what I'm taking now, and that changes every month, and what each of the things is for.  I can't remember!  I know my doctor told me.  I know we worked out my treatment plan together.  But I have no idea what was said, and my husband couldn't come with me last time so I can't ask him.

    Each of my providers uses a DIFFERENT online portal, with a different login.  They all like to send messages through the portals, and sometimes I get email notifications, but sometimes they go to my spam folder and sometimes I see them and forget until they've been pushed off the bottom of my inbox screen into the oblivion of thousands of unread emails.  Each doctor wants an intake form, and often a questionnaire to be filled out before each appointment.  Sometimes my appointments are in person, some of my doctor's I've never met in person, and some I've never seen their face because they started treating me in the age of Covid.  

    I do my best to keep my calendar up to date and coordinated with my husband's, it's a strong passion of his, but lately I keep getting these panic attacks thinking I've double booked or forgotten to put something on the calendar. So far things have turned out ok, but it doesn't slow down my heartbeat when the thoughts come to mind.

    I spoke with the insurance rep who is supposed to be helping me coordinate care on Tuesday for the first time and when she asked how she could help, I told her about all this and asked if there was any type of helper that could come alongside me.  She looked into it and got back to me with, "I don't think so, but if there was insurance will not cover it."  I shared my frustration and overwhelm with my husband and he told me that this is my job now essentially.  I told him I quit.

Here's the thing: Having a chronic illness, multiple chronic illnesses in my case, IS a full-time job and then some, and you don't get to quit.  





Comments

Post a Comment

Popular posts from this blog

Reflections on Having a Brain Tumor

Image
  Picture     So how does one live with a brain tumor?  Honestly, I'm still trying to figure that out.  My doctor seems to think that it shouldn't be a big deal.  He's like, "See you next year!" and here I am trying to understand what that looks like.  I have this thing in my brain, embedded in my Cerebellum to the point that my surgeon cannot safely remove it. It *may* be affecting my vision, nausea, balance, etc., but really, we can't know for sure.  I guess the reality is that I should just go about my business, continuing life to the best of my ability, until I bump up against the tumor.  That might look like an appointment with an MRI to check its status, like I had a couple of weeks ago, or it might be symptoms that make me question whether the tumor is affecting things. I have no way of knowing when or if that might happen, except for a scheduled appointment of course, so I have to figure out a way of living life that takes that into account.       The
Read more

Guest Post: How are you doing?

Image
  How are you doing?   TLDR; I’m fine… I’m good   I have been more aware lately when asked how I am doing. I often dislike that question as I know the expected answer is supposed to be something along the lines of, I am fine.   That is far from the correct answer, and it bothers me equally answering falsely as much as it bothers me when someone is asking me how I am doing and not actually caring how I am doing.   I believe that most people do not do this intentionally, just that it has become so habitual that it is part of who they are.   I challenge you to either stop using that introductory phrase, or to immediately follow up with an affirmation that you really do care how someone is doing. Let them know that you have a few minutes and really do want to hear how they are doing, and how you can at least pray for them. If stopping to hear how someone is doing is out of your comfort zone, why not try being honest when you are having a really crappy day, week, month and briefly let
Read more

The Call That Changes Your Life

Image
We see it in movies and TV shows, but we always hope it will never happen to us. The phone rings and it's someone unexpected, a police officer, a relative, a doctor. They give us news we weren't expecting, and from that moment on our lives are forever different. And it's not just our future that's different. We begin to define our past as "before"and "after" this life changing news.  I got the call last Monday, February 27th, 2023. Ironically, it came just two days after the anniversary of another one of those calls, the one letting me know that my brother had died unexpectedly at the age of 40, two years ago. This time it wasn't my Mom calling, it was the ARNP from my neurologist's office. She was calling me at 5:30 at night the next business day after I had had a brain MRI. Right away I knew this wasn't going to be another, "Everything looks fine, we don't know why you're in pain all the time," call. That n
Read more