Wednesday, October 7, 2015

It's my LIFE

I understand that I am not the only patient that my doctors see. I know that for most of the doctors I see, I'm the only patient they've ever had with mast cell disease. I get it. I don't ever want to be labeled as a problematic or demanding patient or the one that everyone dreads to see. I've worked in medical offices and I know what it's like to groan when certain patients come in. I don't want to be "that patient." I do my best to always have a smile on my face regardless of how I'm feeling. I try to be polite and respectful and not ask for special favors. But sometimes, I wish I could just look the doctors in the face and remind them IT'S MY LIFE we're talking about.

I was referred to a new allergist/immunologist by my PCP to look into some more specific treatment options that my mast cell specialist had recommended. The appointment seemed to go well, and I was encouraged when I left. He was going to contact my specialist in MN and come up with a plan of action. I was hopeful.

So we waited.

A month later, after not hearing from him, I followed up.

His nurse took my message, said he was out of town, but would get back to me once he returned. Then she called me a couple days later. The doctor had talked to a colleague of his who said that he was not sure my mast cell diagnosis was legit. So my doctor decided hat he had nothing to offer me. He did not contact my specialist and had no intention of doing so.

Like I said, I get that I'm not the only patient that my doctors see. I also understand that I'm a bit more complex than other patients may be. I'm not trying to ask for special treatment, but sometimes I wish my doctors would think about what goes on in between the appointments.

During that month that my doctor was supposedly contacting my specialist, he was still going about his every day business. He probably saw dozens of patients, wrote many prescriptions, and went home to his family at the end of the day. Did he ever once think about what that month looked like for me?

While I waited to hear back from the doctor...I had to use 2 epi pens, made 4 ER trips, missed Bible study and leading the high school youth group, had to cancel plans with friends and rearrange meetings at school. I threw up more times than I can remember, was too sick to walk from the bedroom to the bathroom to get my medications, passed out and gave myself a concussion because I hit my head, and spent many days and nights on "epi pen watch" and in a drowsy, drugged state trying to keep my reactions to progressing to anaphylaxis.

THIS. IS. MY. LIFE.

You made the choice that it was easier to not have me as a patient. But I don't get a choice. While you spent that month going about your business, I spent it HOPING I had finally found a doctor that might be able to help me. When I finally heard back after *I* called you to follow-up, it was just affirmation that as a rare disease patient, I am on my own to advocate for myself.

Most doctors don't like it when patients walk in to appointments with print-outs from online searches, or ask about specific treatment options, or seem to be well researched in their unusual medical conditions. But what are we supposed to do when we get brushed off by doctors more often than not and are left on our own to manage potentially life-threatening reactions???

I would like nothing more than to leave my care in the hands of a capable doctor who is truly invested in helping me manage my symptoms and regain my health. I have that doctor in my specialist in MN, but as a specialist 14 hours away, I need a local team of doctors who are willing to coordinate with him. When I get brushed off after waiting months to schedule and hear back from doctors, it may mean nothing to the doctors who dismiss me, but it just means that I have no choice but to be that patient that doctors don't like.

If they are not willing to help me, then I have no choice but to take control of my own healthcare. I don't like walking into appointments with an agenda and a list of requests for my doctor. I wish I could go in, just tell them my symptoms, and have them give me answers. But I don't have that luxury.

So to the doctors that I have to see in the future, I'm sorry, but I have no choice but to be "that patient"...to you I'm just another 30 minutes on your schedule, another name in your computer, but I've got a bit more riding on each appointment...

IT'S MY LIFE.

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