This frantic way of life doesn’t have to be the only way to live. It doesn't have to be the only way to feel strong and loved and important. There is another choice, another way of living more fully, and it can be found and created outside of the peace and stillness so easily seen here on Maui, too.
Read More
img_6225
“It’s complicated” AKA my journey to diagnosis
I hope that by sharing this I will help others understand what I've been through and what this journey is like. I hope this information will find its way to someone that needs it, someone who can avoid having a diagnostic delay like I did. I hope my words provide hope and encouragement to those who so desperately need it.
Read MoreWhy I'm thankful for the medical treatment I originally never wanted
A year later, I’m feeling nothing but incredibly thankful – thankful that I reluctantly agreed to proceed with this treatment one year ago today, thankful for friends who have supported me and kept me company back in the beginning when it was daunting, thankful for modern medicine and innovation, thankful for a local specialist who follows my case, thankful for nurses who really care and who helped me to feel comfortable and safe right away.
Read More5 Things Your Chronically Ill Friend Wants You to Know
Or, at least, 5 things THIS chronically ill friend wants you to know:
1. I'm not being dramatic or seeking attention in any way -Quite the contrary, actually. I work in the Emergency Room and I know what symptoms or vital signs get you attention, quickly. Because of this, I am incredibly hesitant to share my struggles with anyone, because the last thing I want is medical attention or people taking care of me. I suffer in silence (literally) because I don't want the attention.
2. I put an incredible amount of effort into acting and appearing "normal"
My current treatment consists of 5 daily doses of supportive prescription medications, twice weekly Lactated Ringer infusions, and 3-4 days of moderate cardio to keep my system in check. I drink a whole liter of pedialyte before a dinner out with friends so that I'm less symptomatic and look more "healthy". I don't tell those friends that I'm out with when I'm feeling dizzy or lightheaded. It may look to others like I’m feeling great, but that’s all part of the illusion.
3. I actually don't hate the phrase "but you don't look sick!" (see #2)
It's a common rant in the invisible illness world; people complain about friends or strangers who say things like "but you don't even look sick!" (As if anyone with any chronic illness looks a certain way.....) So, this may rock the boat quite a bit, but I'd like to admit that personally, I take it as a compliment. I do so many things each and every day to achieve that exact persona, so I'm happy to hear its working well. I may show up to the birthday party looking just as put together as everyone else, but what you don't see is the IV infusion I got the day before, or the 3 times I had to take a break from putting my makeup on because my vision was blacking out - after laying on the bathroom floor for a few minutes with my feet elevated, I get back up and finish getting ready. This is all so that I don't look sick and show up to the party looking just as cute as anyone else. So, thank you. Glad to know the effort is paying off.
4. I don't pity myself, and I don't think you should either
Don't get me wrong.. do I ever wish I didn't have to take so many daily medications or weekly IV infusions? Absolutely! Am I envious when a group of friends goes on a hike or does an activity together that I just can't handle attending? For sure. Every time. Do I watch people my age do intense workouts and feel jealous because even a slow jog is hard for me to maintain? You better believe it! But I am equally aware of another emotion - gratitude. I am thankful for the access I have to healthcare and to medications, for my ever increasing level of activity, and for my ability to maintain a job that I dreamed about for years. Every single one of my pity parties ends in thankfulness, and I hope yours will too.
5. I don't want you to think my health is a taboo topic
If you are one of the few friends I have confided in that knows about my chronic illness, please don't shy away from talking about it! I don’t often bring it up but it’s only because I assume you are tired of hearing me complain. If you have questions, ask them. If you're curious about something, let me teach you! If you’re wondering how treatment is going, bring it up in conversation! By asking me how I'm doing you are reminding me that people actually do still care.
October is Dysautonomia awareness month. Learn more about Dysautonomia and POTS at Dysautonomia International.