And to be honest, I just like the name. It gives me a cause to identify with. I’ve experienced a lot of post traumatic growth since all this started. I hated the job that I had. I wanted to do something bigger. I have always been outspoken and didn’t really have a way to express that. Disability Dame makes me feel a lot happier in life. I love it. I don’t see it as a bad word or a bad thing. But hey! Talk to me when it’s full blown ALS, and I may not feel the same!

D: I’m sure that being diagnosed with ALS meant a LOT of doctor’s appointments. But outside of those specialist visits, what does a “regular doctor’s visit” look like for you? Your pap smears, your annuals, your pediatrician visits as a mom… the stuff that “everyone” needs to go through. Do you think it's different for you versus someone else?

A: Yes, absolutely! My ObGyn since day one, has been an ally with me and given me everything that I’ve needed. She never makes me feel judged at all. For most of my doctors, I can feel their empathy for me. I think the biggest challenge is going to pediatrician appointments, because obviously I can’t take my son myself. One time, I had the nanny go with me, and I had told the clinic ahead of time that she would be there to physically support me. But then the doctor comes out and says that there can only be one person in the room! So it’s already like you can’t go. My nanny had to step up and advocate for me saying “she’s the mom, she needs to be there!” I clear things with every clinic, but things like this always pop up.

And then there’s the paperwork! I can’t write anymore, so I can’t do any of the paperwork. The ObGyn office is now doing iPads and they are too heavy for me to lug back and forth. I usually have to have the forms filled out by my husband the day before. Once I had to go to a pharmacy for a vaccine and I needed the nurse to go through the documents for me. There was a long line and she just looked extremely annoyed to have to go out of her way to help me out. But hey! If you had found a way to make this vaccine experience accessible for someone like me, I wouldn’t be taking up your time!

D: And what about paying for all these visits? Insurance is, arguably, the cornerstone of American healthcare. To access basic services without breaking the bank, you need some form of coverage… How does this play into your condition?

A. Oh my gosh! I can't try any experimental treatments because of the insurance company. At one point, the Mayo Clinic wanted to put me on IV-IG to see if it could be this rare autoimmune condition that was causing my symptoms. I didn’t realize that insurance would need me to be pre-authorized. And as I’m literally hooked up to the IV-IG, I get a call from the insurance company, telling me that I’ve been denied. I had already done two rounds of the treatment, and now owed twelve thousand dollars. I ended up stopping the treatment and it took me several months and so much stress to overturn the insurance denial. Now I don’t do anything for treatment because there’s nothing I can really do. I can enroll in a clinical trial and go that route but doctors can’t prescribe me anything because it’s not covered.

The only treatment that they do have available for ALS is such an invasive option, it would require me to go in five days a week. But even for that, my hand function would have to be much higher than what it is right now. The requirements for life-altering medical help are so strict that so many people can’t even qualify. Because companies don’t want to pay for it. 

D: That’s interesting, because you said your condition is already so rare and on top of it, there are additional restrictions to seeking help. 

A: Yeah, exactly!

D: So if all the technical options are moot, what about the regular advice that doctors tend to give their patients. Things like, here’s what your diet should be, this is how much exercise you need… Run of the mill, medical best practice. What have been your experiences with that realm?

A: The biggest thing I get is doctors actually NOT knowing what to say to me. I recently went to a geneticist, and you could tell that she was a younger doctor… She had to tell me that she didn’t have anything else she could do for me, medically. She kept apologizing over and over. You could tell that this was her first time having a conversation like this with a patient. She didn’t know what to say at all. And it’s this complete lack of resources that I feel the most. Like providers don’t even know how to face me. “I’m sorry.” That’s it. That’s all I get. They’ve asked me if I want to try occupational, or physical therapy. And they’ve offered me antidepressants. That’s all. No one had said anything about diet or stress.

D: As a person sitting across from that doctor who is staring back at you with the words “I’m sorry,” and a bottle of drugs, what would you have liked to hear instead?

A: There was this time with a doctor who saw the writing on the wall first. And this was the moment in the room where I’m first coming to the realization that “Okay! I’m going to be living with a terminal illness.” And as I’m going through the motions of that, he looks at me and says something along the lines of, “we all have buckets in life and some people get bad rocks and some people get good rocks and you’ve just got a bad rock here.” At that moment, that is really not how I wanted him to talk about my disease at all. It almost felt like he was trivializing it, and tossing it out as a proverb. I don’t want that right now. Just let me deal with this. I started crying, and that is when they offered me antidepressants. Every single person in the moment, finding out that they have a terminal illness, is expected to cry! Don’t offer me antidepressants as the next logical step.