Boxing Gloves Are ON

Last night I finally got a hold of my rheumatologist and really gave him a piece of my mind. I was polite, yet firm that "Oh well, nothing I can do" was not acceptable to me as a patient. I reminded him that he works for me, and that through my own research, I was not willing to let go of the possibility of Ehler's Danlos just because I don't have excessively stretchy skin. That is ONE symptom of many... ONE. He attempted to blow me off again and said "Even if you do have it, you don't have the terminal form and the treatment is the same - physical therapy. What does it matter?" I told him it matters to me to put a name with the face I've been dealing with for the last 20 years - that I wanted closure and to seek support from others with the same syndrome. That I wanted validation that there really IS something going on other than just a classification of a possibility. Joint Instability Syndrome is a classification... I want to know WHICH ONE. I also said that I wanted to know if this is genetic, if I should be watching for signs in my children, and WHAT I could/should be watching for. I wrapped up my piece by saying that I am young, and being told "nothing I can do" takes away hope and invalidates my fears and concerns as a patient. "Nothing I can do" means YOU'VE given up looking into it further. Sometimes all people have is their hope, and by saying that, you strip them of that hope. If you're not willing to look into it further, have the respect for your patient to tell them so. "There's nothing I can do, but lets look into who can" would have gone WAY farther with me, and I would respect you more as a doctor for admitting your limitations. There's no shame in not being a specialist in my weird anomaly  but for heaven's sake don't just blow me off!

After that he was quiet for a moment, then thoughtfully asked me what he could do for me. "If you come across a specialist or geneticist, you let me know and I'll get a referral written up immediately. If you need any changes to your PT script, please let me know and I'll do it. If you come across alternative medicines that you'd like to try, bring in what you've found and we'll discuss if it's appropriate to try or not. Also, who is your PCP? Make a list of all your symptoms and weird stuff in chronological order and lets get your recent lab reports over to her. You still have concerns about vascular type Ehlers Danlos in addition to hypermobility type? Your echocardiogram looked good. But huh, your blood pressure is really high, isn't it? Make sure you bring that up to her - we'll need to get that under control."

I feel like I was finally a part of my medical team. You know why? I was rooting for me and DEMANDED that the doctor start rooting for me too. I've been very lucky - My Orthopaedic Surgeon is a saint, my Occupational Therapists and Physical Therapist really listen to my concerns and offer suggestions - it's a shame this rheum was not as excited to be on my team as everyone else. I'm hoping my new PCP (I see her Tuesday) will be as excited to work with me as my current team and maybe she can offer a referral to a different rheum who will be more attentive and I won't have to do his job for him and pull teeth to get the care I need.