I have been home for about four days now, and each day I get a little better. I feel my energy slowly returning, although I do have moments where it’s clear I need to take it easy. The home health nurses have visited, and my vitals are all normal and stable, which seems to bode well. I am following the doctors’ instructions to the letter, and hopefully, things will continue to improve.
The frustrating things right now are a) I am a super-bored and under-stimulated extrovert, b) My blood thinness level (or INR level) is not getting into the therapeutic zone very fast, and c) my insurance company continues to be a source of stress.
Fixing problem “a” will just take time. I have friends I can reach out to, and hopefully can sweet-talk them into more visits, boardgames, or Netflix. I am sure I will get back to my social-butterfly norm soon enough.
Problem “b” … I am extremely frustrated by this for a few reasons. One, I just want to be done with these damn Lovenox shots. They hurt like hell, and I will only have to take them 2 more days once I hit my level. And when it comes down to it, not being at the therapeutic level just makes me feel scared and unsafe. I know I am not completely safe even when I hit the therapeutic level, but there’s something about that number that feels like additional security. But… trying to find a silver lining here … if it’s taking this long to get me to the right level, then chances are my blood won’t modulate that much once it does get there, and I can hopefully stay fairly stable for the duration of my time on blood thinners.
Problem “c” … Just a few short hours ago, the home health nurse that has been managing my case called and said that my insurance company no longer considered me “home-bound,” and was therefore canceling my home health visits. All further tests needed to be in a lab. Technically, true. I actually drove to the office today to pick up some work so I can ease back into my job. However, they called way too late to allow me to set up an appointment to meet my new doctor and get an order for the lab, and after a couple increased Coumadin doses, I need to be tested tomorrow. I spent a good hour on the phone with about 10 different people trying to figure out how the hell I can get tested and who could do it. I just kept getting passed from person to person with no real results. Finally, I took matters into my own hands and called the insurance company and somehow talked them into letting me have one more home health visit, then go to my primary doc on Friday. Miracle of miracles, they saw reason, and I got my wish. There might have been dancing in my living room after I pulled that off. I can neither confirm nor deny that fact.
I am so switching to a PPO as soon as humanly possible. That way I can keep my gynecologist and go to the doctors that know me and my case. I hate the health care system in this country so much right now. And yet… I am not balking at the fact that they are paying for what is likely a horrendous medical bill. Mixed blessings, indeed.
Meanwhile, this whole experience has me thinking about where my life will go moving forward. I still haven’t given up on what I feel is my work in this world – to provide experiences for others. And I have a couple new and emerging outlets for that sort of thing. But I am also feeling a pull towards exploring patient advocacy as a potential career field. It might be a way to channel some of the rage and frustration I feel in dealing with my own insurance debacle into some constructive energy that can help someone else with less of a voice. It’s an idea that keeps floating to the surface of my thoughts, so it might be worth checking into, at least.
I think this will be the last blog post in this series for now. I’m sure there will be more hoops and hurdles to talk about as well as victories and blessings. But I feel like I am ready to release this particular chapter and see what the rest of my story holds from here on out.
Before I leave the topic entirely, I just want to acknowledge the incredible support and love I received from folks near and far while I was in the hospital. There’s no way I can thank everyone who sent a note at just the right moment, or visited during a time when I really needed the company, or held me in their thoughts while I was struggling. I tried to get back to as many people as I could, but I know that I missed some. If you are one of those people – do not mistake my lack of response as ingratitude. I still read the list of Facebook comments on my initial announcement about my hospitalization each day. It may seem like a trivial thing to comment on a status, but those saw me through some pretty dark moments.
Never underestimate your impact.