Lessons Learned

It wasn’t the first time, but it was the last time I ever want to say the word “hives” when describing my disease to someone. That even goes for conversations where I’ve mentioned every single symptom and say “hives” last. That’s it. No more! (I’m pretty sure everyone with urticarial vasculitis and/or autoimmune urticaria knows exactly how this conversation went.)

I also learned last month to stop engaging with people in line at the pharmacy. I know they’re just trying to be helpful, but I’m the patient. I know my disease. I know my body. That’s true even if you do happen to have the same disease. So, to the lady with type 2 diabetes who tried to tell me I was being too particular about my medications and that they’re all the same (basically telling me to shut up and move on so she can talk to the pharmacist next), I should have just smiled and nodded. Instead, after discussing my concern about the brand inconsistencies of one of my medications with the pharmacist, I told her, “Thank you. But, it does matter.” She replied, “No, they’re all the same. Trust me. I take 8 pills a day.” The only good thing I can say about the rest of the conversation is that I did not “say” anything in response. Instead, I turned and glared at her with my face turning red while I had an fantasy grudge match with her. I so badly wanted to reply, “8 pills? That’s all you take? Give me call when you’re taking 20. I might listen to you then.” I wish I had said that on one hand. On the other, it wouldn’t have done a bit of good, and I’d have looked like a complete jerk.

This all leads into a new acceptance for me…another pill that’s hard to swallow. “Hello. My name is Rhonda, and I’m sensitive.” I haven’t wanted to admit this for a very, very long time. Perhaps, years ago, I truly wasn’t. Now, I have to accept that anything anyone says to me that could possibly be related to my disease is a teetering boulder on a needle.

I don’t know what’s the right the to ever say to me. To my doctors and nurses, all I can say is, “Please, please believe me without having to see me in all my painful and ugly breakout glory.” I’m tired. I’m tired of fighting. I’m tired of arguing. I’m tired of speaking medical talk with doctors while they roll their eyes at my “lay” research and even at my verbal recount of what my other doctors have said. Just believe me.

I write all of this while I am trying to mentally prepare myself for yet another appointment. I’ve had high hopes for this appointment. I had high hopes for my last one. I naively went to a new doctor thinking he was already going along with the program and that it was just a matter of debating the next new medication. I wasn’t prepared as I so clearly should always be. I didn’t expect to have to recount my timeline and symptoms. I wasn’t expecting to recount all the medication failures. I wasn’t expecting to have to explain the theories behind my diagnosis. I left the office composed. By the time I got to my car, the tears flowed. The good news that did eventually come from that appointment is that the new doc spoke to my Johns Hopkins doc and all is well again in the kingdom. (That is until the next bump in this road sends me reeling and into a panic attack.)

3 lessons…

1. Never mention the word “hives” when educating anyone about my disease.

2. Smile, nod, then ignore “helpful” advice from strangers.

3. Be a Boyscout. Or, always be prepared with my complete history no matter what. ALWAYS.

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