A Real Unicorn (Doctor): Part 2

In case you missed it, check out Part 1 of this series!

Here is how my first visit went: we did try the topical cream, but because of one of my rare diseases, I don’t respond to Lidocaine, and so, unfortunately, the cream didn’t numb me. I felt every zap of those lasers. My language was that of the saltiest of sailors. And here is the nicest of doctors encouraging me to just let it all out, because we were going to town on skin that was never meant to be seared like filet mignon. I only felt a smidge bad for patients near me in other rooms. If they had what I was having, they would understand.

My second visit was very different

Again, I felt like it was a unicorn doctor offering, but maybe it’s because I’m used to being treated either with indifference or disdain by doctors. But during my second visit, the dermatologist offered Pronox, which was like getting gas at the dentist. I was promised I would barely feel the zaps, and I was told the truth. I wasn’t feeling any pain. I wasn’t feeling much logic either. During the treatment, I had to switch safety glasses because of the different frequencies of light waves. I took off my glasses, and then I attempted to take off the glasses again. I told the doctor and her nurse that I was lit as fluffer nutters, but with different terminology. It was hilarious. I told them I was going to tell everyone what I did – and I did! There is no pride when getting some of these body parts treated for HS and also receiving very temporary anesthesia. I will be the first person to make fun of myself.

Here is the other part: this doctor and her staff also know the proper codes to bill insurance so it’s lesion destruction, not cosmetic. This is specifically medically correct. What we suffer from is a medical condition. We aren’t asking for something to be made visually nicer, or more convenient - we are dealing with one of the worst (strictly) skin conditions of the present day. The correct coding should not be declined by the doctor nor the insurance company.

I want everyone to have the same level of care I had

I want to send everyone to her. Of course, this isn’t practical. But she is a fantastic doctor, and I want everyone to have the same level of care that I have had. This is also where my mixed emotions come in, if I can be honest. If we overwhelm doctors, they won’t want to treat us. I have had this happen so many times in the rare diseases where I am diagnosed that I have to ask doctors permission to give out their info to other patients – and sometimes they decline. I worry that I am not being open enough with other patients if I don’t give her direct info and therefore they are missing out on care.

I contacted her office and asked if it would be possible to pass along info to other doctors who have this equipment but may not know about the correct settings. I also verified they would be able to share the billing codes. I don’t want them to become overwhelmed because they still need to be able to provide excellent care to all of their patients. So the agreement that we have come up with is that I filter who comes into contact with her office. Doctors can find out the settings for the lasers and the codes for the billing. Patients can talk to me about my experiences.

Hopefully, this keeps all of us unicorns happy and healthy.