Self-Managed Care, Part 3

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Disability and Determination is a weekly newsletter about my experience living with a rare disability…with a little bit of meditation, pop culture, and other random things thrown in. If you like this post, give me a like with the ❤️ symbol below. This will help me get discovered by others on Substack. Drop your email in the field at the bottom and click the Subscribe button to be notified of future posts (I offer a free and a paid subscription option)!

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I had a very different post drafted for this originally…

After about 15-20 phone calls, 6-7 referral attempts, 6-7 messages, 2 messages from Member Services, 2 letters from Member Services (about a grievance I never even filed), several failed mental health appointments, and 1 message from appointment services later, I finally got all of the medical appointments I’ve been waiting for. I’ve been doing physical therapy (PT)/occupational therapy (OT) for several weeks now. I didn’t realize how crappy the PT I had last year was until I was able to get it in-network again (at the brand new office near me). I’m actually moving my body and getting a workout which has noticeably improved my strength already, and is also how I got Red.

Today, I finally had my neurology appointment. It was another male doctor so I was skeptical and turns out, that skepticism was pretty justified. He asked me some questions, but basically told me all about my disability, even when I corrected him and tried to explain the specifics of my form of muscular dystrophy. He did put in a few referrals for things for me (we’ll see how many months it takes to get those), and he wore a mask, but otherwise, it was just another appointment where I left feeling patronized and not heard. This guy was supposedly the neuromuscular specialist too. It’s still important that there’s a record and a barometer of where I’m at with my MD. I think next year I’ll be requesting a female neurologist, even if she’s not a neuromuscular specialist.

I came home and went through my file of medical records. My mom has very thankfully kept everything, so I’m always able to refer back to whatever I need. It brought me to tears seeing the level of medical care I used to get for my disability. I also had some documentation I could take pictures of to send to Dr. Know It All to show him he was wrong (and have it in my medical records).

I’m glad physical therapy has been going well and I like my new primary care doctor, but I still feel like I’m back to square one in some respects. All of this unfortunately proved my point that it feels like I’m better able to take care of things myself. I told my mom my life has been like one giant group project—there’s always going to be people in your group that don’t do the work so you might as well just do it yourself. This is extremely true when it comes to the medical care I’ve been getting.

Kelly Mack

wrote recently about the extra time it takes people with disabilities every single day because of all of the other things we have to factor in:

Productivity and Crip Time

With our healthcare system, I know I’m not the only one who has had to deal with this, but if I didn’t have a disability, I wouldn’t necessarily have been looking to even get the referrals I did. All of the appointments are related to my disability too. And in the middle of working full time, writing here, and dealing with other personal struggles, I was having to devote my lunch breaks and after-work time to making phone calls and sending messages—most of which have could have been avoided (especially with my previous primary care doctor).

Not to mention the emotional toll this has all taken. I’m exhausted and defeated and when I tried to get mental health care, even that fell short. To try to find someone new who had the faintest clue of what I’m dealing with was going to involve—guess what—more phone calls!

There were some positives that came out of the struggle to get these referrals though. I hate making phone calls with a passion—mostly because I think I’m going to say something “wrong” and then after, I often don’t feel like I said the right thing anyway. It’s exhausting. But I’ve had to make so many calls this year that I’ve gotten more used to it. Not going to say I like making phone calls or anything, but I feel like it’s a skill I’ve improved out now.

I’ve said it many times before that I’m not a person who is good at being assertive or standing up for what I need sometimes. My people-pleasing/need to be kind sometimes takes over to the point I sacrifice my own needs or myself. So this experience helped me practice standing up for what I need, and not giving up until I got it.

I’m working on knowing I can handle tough things that are thrown my way and come out ok, even if they don’t necessarily turn out the way I’d hoped. I think the last 4 years have been a master class in resilience for me. I’m not sure what the future looks like for me healthcare wise, but I know I’ll figure that out too. Hopefully it just won’t take quite so many phone calls 😂

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What Made Me Happy This Week 🌞💞

• Brats (📺) - Available on Hulu, this documentary follows Andrew McCarthy of Pretty in Pink fame as he attempts to reconnect with the other members of the young group of 80s actors that were known as “The Brat Pack”, thanks to an article published in New York Magazine. Not everyone was willing to talk to Andrew on camera but it’s really interesting to see all of the discussion around the impact and repercussions of the “Brat Pack” label. Andrew even talks to the journalist who wrote the originating article. I’m more of a 90s kid but my heart very much feels like it’s with the 80s too. I grew up watching 80s music videos on VH1 and John Hughes movies are some of my favorites.

• Wallows (🎸) - I’ve mentioned them before but they’re seriously my favorite driving with the windows down, music blasting group. Their lyrics are in no way the epitome of sophistication, but they’re sound just hits where you need it when you’re driving on a beautiful summer day. A lot of their songs make great summer soundtracks too. Here they are performing one of their new songs on Jimmy Kimmel

Happy weekend everyone ❤️