As with anything, social media (and the internet as a whole) has its good features and its bad features. One of its very best features is its ability to make you realize that you aren’t alone. To allow you to find other people who are going through the same things that you are dealing with. And maybe, just maybe, show you a way to get through it. That’s why I thought it was so wonderful to see a recent Instagram post from Allison Rogers. Allison is a former Miss Rhode Island, and the current volunteer director of the Miss Rhode Island Scholarship Organization. She felt the need to go outside her comfort zone and share her private dealings with a not-well-known illness. Her hope was that others who are dealing with it may find some help in what she had to say. I share that wish, which is why I am sharing her story here with her help, in her words…
This weekend marked an important milestone for me. The last two Miss Rhode Island show weekends I have gotten extremely sick in a debilitating, down-and-out, do not know if I can make it through this weekend kind of manner -- May 2016 and May 2017. I pushed through and tried to hide it from everyone. And I believe I did a good job at that. Because let's be honest, who wants to hear about me being sick, I had responsibilities to see through, there were amazing young women who had prepared for so long for that weekend, who were counting on me and our full team, and the show must always go on. But I have come to find communication and vulnerability and real honest talk are always better than keeping things inside. Better for ourselves and better for others, for our spirits and our bodies. This is why I am sharing so publicly now.
I made it through both weekends in 2016 and 2017 but knew on a subconscious level something was very wrong, without knowing what it was. On a conscious level, I chalked it up to food poisoning the first year and extremely bad luck (and my body just revolting) the second.
This past weekend, our Miss RI 2018 show, I made it through without getting sick at all. Why? Because I've spent the last couple of years navigating the complicated, convoluted path of living with an undiagnosed, untreated condition, trying to work with various doctors to figure out what the heck was going on, test after test. Tubes getting shoved places you don't want them, biopsies, hypotheses that were inconclusive and more...and I've finally made progress.
So to make it through our entire show weekend in one piece? Seriously feels like heaven. To be surrounded by an amazing team of angels who have your back and all pitch in to make everything come together? Also, Heaven. To feel the energy of the amazing women who participate in and are a part of our program and to stand there in pride knowing these women are changing our world and our communities and they are our future? Also, Heaven.
Knowing what it's like to be truly knocked down and out by something I didn't even understand until very recently has given me the gift of standing in gratitude for each day I feel amazing. And for every day because seriously every day is a gift. Each day I become more and more grateful for my health, for doctors and nurses who help us find answers, for a healthcare system that eventually helps us get on the right management path and for dear friends who say, "Don't think twice. I've got this."
It's not like a Miss RI show weekend is unique. This 2018 show is a milestone for me because I finally feel I'm on the right path and I have two clear annual markers in 2016 and 2017 to compare it to. I've been getting sick on a weekly basis, or every other week basis, or twice a week basis for the last year plus, ever since my daily commuting time on the road increased living and working in two different states -- and on a less frequent but still regular basis for the years before that. For years I thought it was normal -- chalking it up to food poisoning (good thing I didn't call the Department of Health on all the restaurants I thought made me sick! 😬), or motion sickness, or a terrible commute, or a weak stomach and, again, just bad luck. I thought it was just me and that my "normal" was to just be a little abnormal for the rest of my life.
When I told my former nurse practitioner a couple years ago while we were trying to navigate why I was getting sick so frequently that I was worried about being exhausted all the time, his response was "Wait 'til you have kids. You'll be even more exhausted then." Responses like this over the years have made me think it's just me -- and to assume, well, everyone must just feel off a lot too -- and to not realize maybe there was an actual condition I was navigating unaware. Again, I chalked it up to bad luck.
When I switched to wearing dresses nonstop to work for two years because my suit pants were too uncomfortable, even though they technically fit, I should have realized constantly feeling bloated was probably a sign of something more than bad luck. Grabbing garbage bags late at night as I left work in case I got sick on my hour drive home? Something more than bad luck. Thinking it was the crazy bright lights of other cars making me sick on that hour drive home late at night and ending so many nights halfway incapacitated? And subsequently exhausted the next morning? Something more than bad luck. Missed flights, needing to book hotel rooms at the last minute because I was too sick to make it all the way home, financial costs for changed travel plans because I was sick, lost time with loved ones and friends, having to skip out on adventures, getting worried about making plans in case I got sick, depleted energy levels and so much more? Something more than bad luck. Going without healthcare for months because I quit my job and was in between jobs, thus delaying my path to figuring things out with a new set of healthcare professionals? Not bad luck, but a really bad decision. And sometimes, unfortunately, we make bad decisions when we are exhausted and not 100%.
A couple months ago, after getting back onto a wonderful new health plan, and having the great luck of getting matched with a wonderful doctor focused on an integrative approach, I was diagnosed with migraine disorder. Despite having a dear friend who battles migraines, I always thought migraines were really bad headaches. Wrong. I've learned migraine disorder is a tricky thing -- and I understand why it took so long to land on this answer I've been searching for for years, given it is tricky thing.
And, so friends, this is my PSA for the day -- in case you have a loved one also recently diagnosed, or in case you too have been stumbling around trying to figure out what the heck is wrong with you and trying to figure out what's making you continuously sick, and in case any of what I have shared sounds familiar, I offer this up with the hope it can help someone else out there. Because there are many, many people out there walking around undiagnosed with migraine disorder. And because Lord knows I wish I had figured this out way earlier.
Migraine disorder is a neurological disorder involving nerve pathways and brain chemicals. Contrary to popular belief, migraine is not just a bad headache. It's an incapacitating collection of neurological symptoms that usually includes a debilitating, throbbing recurring pain on one side of the head, visual disturbances, nausea, vomiting, dizziness, extreme sensitivity to sound, light, touch and smell, and tingling or numbness in the extremities or face. Every person -- and every attack -- is different. I am trying to convince that same dear friend, one of my BFFs who also has migraines, to start a blog together because let's be honest, real talk about navigating our health, finding solutions to living healthy, and figuring out the way our health impacts us on a deeply personal, emotional and spiritual level -- as well as on our closest loved ones and on our relationships with ourselves and others -- would take way more space than this post alone.
I'm still not 100% certain I've landed on the final answer, as I'm still piloting these new tools to manage everything, but given the fact I made it through this milestone weekend (woo woo!!) with the right tools to manage this thing I now know I have, it sure feels like that bad luck I thought I had for years has turned -- with the help of the right doctor -- not just into good luck, but, in fact, into a *total blessing*.
I've been kicking myself because an amazing nurse practitioner I had many years ago (she is really amazing) suggested I might have this -- and years ago, when I was referred to a neurologist who subsequently didn't think I had migraine disorder, I let the door close on this option for many years ... because at the time, I figured doctors must be right and I moved cities, losing access to my amazing nurse practitioner. Do I wish I could turn back the clock to have pushed for more answers years ago? Absolutely. Do I have any regrets about the way I got here? Not at all. To finally feel healthy again, my goodness, it feels like a miracle and I feel like a brand new woman.
To have regained my energy levels and feel completely energized once again, to not have to worry about travel plans anymore because I've got the right tools in my purse ready to use in a moment's notice, to once again feel the world is my oyster, to know what it's like to be unwell and to find a path to continuously manage your health (and at the same time to feel even more compassion for those also walking their own health paths), to have a deeper level of compassion for myself and my own body and my own limits, to be able to wear all those pants just fine again, to realize my abnormal had become my "normal" (a sneaky thing) and to now feel completely normal, for real, once again which feels so great, to go from thinking I just have continuous bad luck to realizing it's an actual thing I can name -- and by naming it I can manage and fight -- well now, that is about as an empowering feeling I've ever felt about anything. And I don't have the words to say how grateful I am for that. I feel energized, like a brand new woman and, most of all, I am grateful.
At the risk of oversharing -- because I hate talking about myself and especially about negative things like sickness -- I share all this today with the hope that if this can help even one other person navigating a path they're unsure of, then the oversharing is worth it. If you're feeling at a deep level something is off with your body and your health and you don't know what, keep fighting, keep watching your symptoms and don't ignore them, keep working with your doctors, find new doctors if you're not getting the answers you think are out there, keep your health insurance, and call out to your friends for help because you shouldn't have to walk this path alone. Migraine disorder remains a poorly understood disease that is often undiagnosed and under-treated, and despite its prevalence, migraine disorder is one of the least funded disorders.
If you've got advice from the path you've also walked, please share it. If any of what I've shared above sounds familiar and you think you might have migraine disorder, reach out and let's talk.
Wishing you good health everyday my friends. Health really is the true wealth.
I can’t thank Allison enough for allowing me to share this with you. I hope you found it as uplifting as I did. If you want to talk more about anything she posted here, I suggest you follow her advice and get in touch. Leave a comment here, or reach out to her via her original Instagram post. I know she’d love to hear your feedback.
Thanks again Allison, I’m glad you’re on the path to feeling well!
