The Hard Decisions

I consider myself a truly loyal person. The relationships that I have run deep, and I protect (and mother) those that I care about fiercely.

I suspect my loyal tendencies, coupled with a large helping of come-by-it-honestly stubbornness, is part of the reason why it has taken me a year to reach the point of the decision I made this evening. I’ve been on the threshold of I-need-to-do-something-about-this for a couple of months, but I had finally reached my limit.

Of all of the doctors that I see to manage my healthcare, there are two that I hold in the highest esteem. These two have seen my at my absolute worst (physically and mentally), and have done the hard work to put me back together. They are the doctors who oversee and manage all the others, and they are the ones that often get roped into giving me advice on decisions that I need to make medically. My vascular surgeon and my rheumatologist both met me at my bedside in February of 2010 and have walked the long road to recovery with me.

Last spring, my rheumatologist made the decision to move on from the university where I met her. (My vascular surgeon luckily stayed put. For what I hope will be a very, very long time.) While I was devastated as a patient, I was proud as person, because it was absolutely the right decision for her. However, I was so very spoiled by the level of care she provided. In the long year since her departure (a year to the day today, as she just reminded me on the phone), I have worked with a prominent and highly-educated attending and a wonderful fellow. However, the quality of care that I was accustomed to was hard to re-create.

About two months ago, I had a major stressor at work. It lasted for several weeks, and I will be the first to admit that I did not do a good job of managing my Behcet’s while I was wrapped up in work. I didn’t sleep much and didn’t eat well. I threw my body for a loop, and it responded with an angry Behcet’s flare. I started having symptoms (minor in the continuum of my disease history) that I had not had in years. I waited to reach out to my new doctors until my next appointment, hoping to get everything back under control myself. However, I couldn’t, and I entered the doctor’s appointment hopeful that I would receive a response comparable to the degree of the symptoms. However, I left the appointment feeling much like I had before the worst of my illness reared its ugly head in 2010. Then, I was seeing a rheumatologist whom I liked, but who refused to research a method other than the one-size-fits-all treatment protocol that he was sure would work for me if we gave it a little more time. His lack of medical aggression caused me and those I care about so much heartache. I knew leaving the appointment that I was disappointed and very worried, but I chose to push those fears aside and carry on.

A couple weeks ago, I began having a new, unknown, and alarming symptom that I had not experienced before. I contacted my doctor’s office after realizing that it was not going away on its own, and was dismayed at the results. Nothing was going to be done, and I was left feeling like I was out of options. I liked my doctors; they were good people, but they weren’t going to fix me.

I gave it a week, then googled my rheumatologist’s name. I read about her research at the new university and the amazing things she was doing. I clicked on the “contact” link, but exited out of the email without writing anything. I thought about it more, then finally broached the subject with a close friend. They listened and encouraged me to send the email. I waited a couple more days, then brought up the subject with my mom. She listened to me describe what had been going on for a couple of months (I try to not worry my family needlessly, so I hadn’t mentioned having symptoms yet), then encouraged me to email my doctor.

Once a brief email “checking in” and requesting a “quick chat” was sent, I felt like a weight had been lifted off of my shoulders. In her typical fashion, I received an email back the very next morning, and a phone call the next day. I’m transferring back to my doctor’s caseload. While the drive to appointments will be long, I feel more confident than I have in a year. I am lighter because I know that I’m not fighting this medical fight without her valued opinions anymore, and I know that I can trust her to provide me with the most up-to-date and effective treatments possible.

My advice to other patients? Trust your gut. And, just like everything else in life, when you have a relationship that’s worth fighting for, put some effort into it.

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