By Amy, Spirochicks Contributor
This is Part I of a three part series on being a Professional Patient.
Over the summer I did a series of IV treatments that were extremely grueling and difficult. Every week day for 12 weeks I went to my doctor's office first thing in the morning, waited for up to 2 hours to be seen, spend 1 hour having them get an IV into my overly abused veins, and then spent up to 2 hours waiting for the IV medication to go in. Then I'd go home and feel horrible for a few hours from the medication. All of this took up so much of my day that it was difficult to get anything else done, including eating meals, let alone grocery shopping for my family, for example.
One morning in the middle of this grueling routine, while driving to my doctor's office for another round of all this fun, I realized that I was actually enjoying all of this! How in the world could that be?? It was painful, horrifically expensive, and involved sitting for hours and hours in an office with people who are some of the sickest of the sick. But,I realized that this was the most exciting thing I had done in probably YEARS, it was the most interaction I'd had with other people (and people who "got" me!), and I received a lot of attention from the staff as well as other patients for the ordeal I was going through.
This was totally crazy! I was ENJOYING this whole IV thing, even though it was physically, mentally, emotionally, and financially draining! OMG, I thought. Had I become a professional patient?!?? What did this all mean? Would I never get well? Would I spend all my time in my doctor's office, not socialize with anyone but my doctor's staff, sink all my money and time into treatments for years and years to come? Was this what I had unknowingly become? A professional patient?? This is EXACTLY what I'd always, always told myself I would never become!
A few months after this surprising thought crossed my mind, I was out to dinner with some other Lyme patients. Of course, the topic turned to various treatments and supplements. There is nothing like this topic to get a bunch of Lymies excited and chatting away. We are all so dedicated to finding the next thing that will help us, it always gets us rev'd up. Several people commented that they had a long line of treatments in mind that they wanted to try next, and perhaps they were kind of professional patients. And that's when it hit me. I didn't have a list. For once in the 10+ years of being very sick and working doggedly to learn about every single treatment out there in the hopes of finding the right combination of things to help me recover, for once, I didn't have a single thing in mind to try next, let alone a long list of things to do next. So, I thought, perhaps I'm not a professional patient after all? Perhaps I am ready to move on to the next phase of my life, where I'm not chronically ill and always chasing down the next treatment to do in order to hopefully, eventually, fully recover. In all honestly, after finding myself ENJOYING those IV treatments I did over the summer, this thought comforted me.
But, I wondered, how much do we, at least on some level, keep ourselves from full recovery by being a professional patient?
I had no list of things to try next for awhile there. It's now been about six months now since I was doing those grueling daily IVs, and I have to say that right now, I've got a list of six new things I plan to add into my protocol in the hopes of eventually reaching full recovery. The good news is that these things weren't my idea, but things my doctor wants me to add into my protocol. But, does it matter if it's my list or my doctor's list? Does it put me back into the mindset of the professional patient? My hope, of course, is that these six things get me that much closer to full recovery, and then whether or not I'm a professional patient will be a moot point.
Interested in seeing if you are a Professional Patient? See Part II: Working on Your Degree to Become a Professional Patient?