Why don’t you have comments turned on for some posts?
I’m in a number of illness support groups on social media, and I’m very familiar with how comments usually play out with certain topics. I’m happy to chat with people about health topics and my life. I’ve just seen too much with how comments play out on certain topics. I can deal with it… but when there’s too much nonsense, I go from being happy and chatty to snarky and snappish. Not my best look.
Why don’t you have a vlog?!
Meh, not my thing. I’m a writer. And I have no idea what I would video. Some people are AWESOME with videos! Me? I’m pretty boring! Maybe if there’s something interesting like me doing my hand therapy exercises I’ll post a video of that, but I can’t see a reason to do a dedicated vlog.
You’re just looking for attention!
Nah. Trust me, if I wanted to get attention for health stuff, things would look totally different. I actually deal with some of the fallout from people who ARE attention seekers. I’ve had ER doctors miss torn ligaments and partial dislocations because they thought I was just looking for attention (also because I don’t freak out when something hurts). MRI results came back and the orthopedic doc went from “There’s nothing wrong with you” to, “Oh crap! You need to be in a hard cast for 6 weeks”. Oops. Also, a number of diagnoses I do have were things I tried to avoid being diagnosed with. Having things like RA or cyclic vomiting syndrome weren’t my idea. My doctors sometimes have to talk me into getting tests done. “Do I really have to go get that done?” Yes. Yes, you do. So why do I talk about my health if I’m not looking for attention? (1) To normalize conversations about health stuff. I talked about colonoscopies recently to help people stop being so squeamish about something that really is an important part of preventative care. (2) To help other people with complicated health profiles. I started this website to be the kind of resource I hadn’t been able to find.
Are you on a special diet?
Yes and no. I tried a few special diets for long stretches of time years ago. Nothing changed with any of my conditions. My doctors and I are pretty confident that food has no impact on my symptoms. Even with my migraines and cyclic vomiting syndrome, I don’t have any food triggers. Those two are triggered more by a combination of stress, illness, and/or lack of sleep. I do mostly follow a GERD diet. I’m not completely 100% about it, but I significantly limit tomatoes, anything acidic, chocolate, coffee, tea, and other reflux no nos. And nothing spicy because I’m a total lightweight anyway. I try to eat healthy most of the time. Breakfast is either a green smoothie, a grown-up cereal, or a meal replacement shake. Lunch is usually steamed fish or seared chicken breast with some kind of whole grain (farro is my favorite!) and a steamed green vegetable. Dinner is usually similar to lunch. I won’t say no to the occasional slice of pizza or donut, but I feel like eating healthy is important for me to be able to avoid any metabolically-based illnesses. I have a lot of risk factors, so I might not be able to avoid certain things in the end. But if I do end up with something like diabetes, I want to know that it was from my meds and my other illnesses and not because I wasn’t responsible with my diet.
You must be in the hospital and the ER a lot!
Nope! I avoid the ER like the plague. My RA/lupus meds suppress my immune system, and the ER is basically a massive Petri dish of germs. Ew. I feel like dousing myself in Lysol just thinking about it! And I’ve been very fortunate about avoiding hospitalization for my conditions. My doctors do a great job of managing things in general, and we’ve gotten lucky being able to manage a lot of things with meds.
Do you deal with depression or anxiety?
Not on a clinical level. I do have days when I’m feeling down and days when I’m stressed, just like everyone else, but I don’t have clinical depression or generalized anxiety disorder. However, I do have a therapist! She’s an LCSW. Yay for social workers! I am a huge advocate for people with chronic illnesses having a therapist as part of their team. My mental health is pretty good, but I work with my therapist to keep my mental health in a good place. I do have PTSD, but its very mild and well managed with things like mindfulness and cognitive behavioral therapy. Big fan of CBT, by the way!
Do you have a service dog?
Yes and no. My sweet Freckles fits the legal definition of a service dog – she does tasks that mitigate my disabilities – so she is protected by the ADA. However, she is a rescue and has some issues from trauma in her past. She is not a good fit for public access work, and that’s not something I’m going to ask her to do. She’s pretty awesome just as she is. She naturally alerts to my migraines and my cyclic vomiting episodes (about an hour in advance), she naturally alerts to a number of other medical issues, and she is learning other tasks. Pretty amazing, right? But just because she naturally alerts and does other tasks doesn’t mean she’s a good fit to be a full scale service dog who does public access work. She’s not. She’s an at-home service dog. At-home service dogs are valid as service dogs and they are protected by the ADA. For example: We would be able to bring her with us to any hotel on vacation. That said… we usually take the easy road and just look for pet friendly places to start with.