What chronic conditions do you live with?
- Endometriosis – 20 years.
- Hypermobile Ehlers-Danlos Syndrome – my whole life.
- Osteoarthritis – approx 8 years.
- Dysautonomia – my whole life
What’s is the most common misunderstanding about you or your condition?
People think endometriosis is “just bad cramps” during your period, which couldn’t be further from the truth. It can cause intense regardless of what time of the month it is. It can cause severe digestive issues. It can cement organs together, causing them to malfunction.
As far as Ehlers-Danlos Syndrome – A common misconception is that it just means your “double jointed,” which is far from the truth. EDS is a genetic connective tissue disorder. There are 13 different types, and depending on which type you have, the impacts vary. Mine causes severe joint pain and inflammation. It also severely impacts my digestive system, and central nervous system, which causes fainting spells and chronic head pain.
What’s one thing you wish you knew when you got diagnosed?
For anyone getting diagnosed with endometriosis, I want them to know they don’t HAVE to have a hysterectomy to “fix” it, because even doing that isn’t a cure. I’d want to give them every resource I wish I would’ve had, like a community called. Nancy’s Nook. MOST gynecologists have only a basic understanding of the disease, which means patients HAVE to advocate for themselves.
As for EDS – I’d tell someone to make sure they see an actual geneticist to figure out if they have it. Many doctors have no idea what to do with EDS patients, and too often that means they brush off patients who have it, or scoff at the idea. I’d tell them to find an EDS support group, and go to the official EDS website to learn more about their condition.
What’s the most ridiculous thing a doctor has ever said to you?
I was shopping around for a new gynecologist to help me with my endometriosis. I landed in this one guys office and he said,
“Well, if you were a normal case, I’d tell you to get married, put you on (med that is super dangerous), so that you could try and get pregnant as quickly as possible, and hopefully that would “cure” your endo. If it didn’t then we’d do a full hysterectomy.”
This was not prompted by my saying I wanted to get married or have kids. This was his protocol for young, female presenting patients. The only reason he decided not to push me down the road, is because I’ve already had both my hips replaced, NOT because I have zero interest in bearing my own children. ::eye roll:: Obviously that was the first and last visit.
How has chronic illness shaped your relationships?
It has made me very choosey about how I spend my time and energy. I’ve gotten to the point where I’m very open and candid about my conditions and what I need to do to take care of myself. It has allowed me to see who is a genuine friend and who isn’t.
Even within my family, there are family members who are totally current on what I have going on medically and know what the plan is as I continue seeking a full diagnosis, and those who don’t bother even checking in. It has certainly shown me who my people are.
Tell us a funny story about when nothing went to plan…but the story is one good one to tell!
I was traveling around Spain and decided to go see La Sagrada Familia, as one does when they’re in Barcelona. So, I called and booked my tour at a time that would allow me ample amounts of time to get there. I was by myself at that point, and had fairly recently started using mobility aids, but I didn’t see this as a big deal. I was still capable of going and doing things alone.
So, I bee-bopped out of my hostel, went to the train station, and was feeling fine. I am an avid solo-traveler, so doing all this solo wasn’t something I’d give a second thought to.
Not long after I got on the train, I started feeling “It.” The “It” that means something terrible is about to happen if I can’t manage to get it under control. It’s like my whole body goes clammy, hot/cold, and I start getting a pins and needles feeling in my arms/hands.
I did what I usually do when this starts to happen and closed my eyes and calmly assessed the situation. Did I need to remove an article of clothing to be more comfortable? No, I was already wearing minimal clothing. Was I sitting weird? Nope. So I kept my eyes closed and started taking slow deep breaths and reassuring myself that I was okay, everything was fine, sloooow deep breaths.
My usual methods of trying to stop the inevitable weren’t working. I knew I was either going to pass out or vomit, and I for sure knew I did NOT want to be on the train when that happened.
We were coming into a station, I have no idea which one. To this day, I have no idea which one. My vision started narrowing as I stumbled off the train. I spotted a bench about 100 feet away and tried my absolute best to make it to the bench.
Less than a foot from my metallic salvation, I hit the ground (and the side of a mental trashcan) – crutches and all.
If you’ve ever blacked out in public, you know it’s wicked embarrassing, and scary because you aren’t in control, or in a controlled environment… but mostly just embarrassing.
Passersby immediately jumped into action. When I came to a few seconds later, several people were lifting me up onto the bench, and the train station attendant used his knee to prop my legs up.
One woman, and the station attendant stayed with me, then helped me out of the station to a cafe across the street where they got me water and a snack (they thought I just hadn’t eaten, or was dehydrated, bless their hearts).
I never made it to La Sagrada Familia (I was more upset about that than I was about the blacking out) So, next time I’m in Barcelona, I’ll DEFINITELY be heading there, probably not alone, and maybe in a car instead of the train.
To what do you attribute your ” daily will?”
I have a bigger purpose than my illnesses. They play a significant role in my life (obviously, how could they not), but they aren’t my whole life. I am more than my medical conditions. I have a BIG personality. I have big dreams, and big goals, and I am determined to actualize them. Of course it’s not easy. Every day I have to make the decision to get out of bed and keep moving forward. Some days I can’t physically get out of bed, so I’ve had to learn when to give in to the need for my body to rest, and when I can push through it. I used to push myself way too far, way too often. I don’t abuse myself like that anymore. The more I’ve allowed myself to accept that I can’t do things at the same pace as an able-bodied person, the easier life has become.
What alternative treatments or therapies have most helped you? Any that surprised you by how effective they were?
Cupping has helped a lot with my thoracic pain. Marijuana is the ONLY thing that effectively helps me sleep with no side-effects the next day. I’ve also started trying cryotherapy and compression therapy. I’m not sure if the full-body cryo chamber helps because of something scientific, or if it just pulls me entirely out of my pain for 3 minutes while I focus solely on staying in the chamber.
What has been the hardest thing you’ve overcome with your illness?
The hardest thing I’ve had to overcome is accepting that I didn’t do anything to cause this, and that it isn’t my fault this is happening.
How has “being disabled” changed you as a person for the better?
I’ve learned how many places aren’t created for disabled folks with mobility aids. I’ve learned how differently people treat you when you have mobility aids vs. not. I’ve learned how strong of a person I really am.
What made you decide to become a chronic illness advocate and start your blog or social advocacy account?
I needed bilateral hip replacements and there were no resources for young people who needed hip replacements. It was all for people 50+. So I decided to create the thing I wish existed. Over time it has morphed into being about more than just hip replacements.
What is the one thing you are MOST proud of yourself for achieving despite your illness?
Establishing a business online after giving up my career as a hairstylist. I’ve explored several different avenues for what kind of business I wanted to create, and have learned a ton about what I like and what I’m good at, which has led to me working with companies I’m in love with.
What immediate changes or improvements in patient advocacy would you like to see happen over the next 5-10 years?
I’d like to see medical marijuana federally legalized. I’d also like to more clinics open that are strictly for diagnostics, and are accessible to EVERYONE regardless of their insurance status.
Favorite life hacks that help you get through the day?
I’ve learned how to give myself permission to take breaks. If I’m too tired or my brain fog is too intense, I let myself have a nap. If I have brain fog but not a lot of fatigue, I usually go for a walk or find a way to move my body, which typically buys me some extra time to be productive.
What advice would give to someone newly diagnosed with your condition?
It’s not a death sentence, and you are not your diagnosis. You can still lead a full life, you just have to do things more mindfully, use the mobility aids even though it feels weird at first, and don’t give up on your dreams and aspirations just because they’re going to be harder to do. You’ve got this.
Do you have a slogan that you want to leave readers with?
You are an expert on your own body. Don’t allow anyone – including doctors – to disregard the knowledge you have about yourself, your symptoms, and what is and isn’t normal for you.
What legacy do you want to leave for the next generation of chronic warriors?
I want to leave a legacy that shows how much is possible for us, in spite of our conditions. I also want part of my legacy to be showing others how having chronic conditions can be a super power.
How can warriors connect with you?