So I’m writing this from the perspective of someone who doesn’t completely understand the medical and insurance industries, but I have years of experience with them.
So, prior authorizations.
Your doctor, who learns intricately about your medical case and uses all of their tools to determine proper treatments and medications, decides to write you a prescription. In my case, my neurologist recently wrote me a prescription for something that would “greatly improve my quality of life”. Exactly what anyone would want.
I take the prescription to my pharmacy. Then, I get a call that the medication needs a prior authorization. Instead of my doctor making my medical decisions, it will be my insurance company. People who do not have medical degrees, do not understand my medical situation, or much else. This medication that would be of great benefit to my life will now be weighed to see if it is cost effective for my insurance company to provide.
So the prescription goes from my doctor to the pharmacy, then a prior authorization is sent from the pharmacy to my insurance company, then once again to Express Scripts (a Fortune 100 company that exists to outsource insurance companies prescription coverage and benefits), who fax over the forms to my prescribing doctor. Then, my doctor fills out the proper information and faxes it back to Express Scripts. And now, Express Scripts sends back over a request to my doctor for MORE information, because presumably they didn’t receive enough during the first prior authorization request, or they want to try to cut me off from access to this beneficial medication by adding more qualifications to the approval.
Perhaps my doctor didn’t send the proper information the first time, but I’m inclined to believe that a Fortune 100 company that has profits over $100 billion a year, with a history of fraud and information breach allegations is looking purely to maximize profits, not to increase my quality of life. But that is just an opinion.
In a society where we allow multi-billion dollar companies to limit access in order to cut costs, save money, and make our insurance coverage cost effective for the industry instead of the individual, we do not value human life. At least, we do value human life, but only up to a certain dollar amount.
Those of you that follow me on Instagram may already know this, but about two and a half months ago, my close friend Chloe approached me and asked if I would like to be a part of her inspiring creation, More Than Lyme!
First things first, if you haven’t heard of More Than Lyme, we are a community dedicated to raising Lyme disease awareness, sharing your adventures, stories, experiences, and uniting all of those affected by chronic illness. It began with an Instagram, showcasing breathtaking photography that captures the wonder of the outdoors coupled by Chloe’s beautiful and occasionally heart wrenching writing that is so necessary and relatable for those of us with chronic illnesses. I have been following More Than Lyme since the beginning and her daily writings have been so uplifting. I mean, check out this amazing Instagram feed:
More Than Lyme grew into a blog, showcasing more of Chloe’s writings. Sharing your stories through features, her own adventures, serious real talk discussions, and more have been a major source of inspiration for myself! She also now sells clothing that is so comfy and perfect for spreading awareness. I’ve personally been rocking More Than Lyme clothing for close to a year now!
To make a long story short, I was searching for some more fulfillment in life (you may remember my New Years post) and just a few days later, Chloe got in touch with me! The planets aligned and she somehow knew that I was seeking this out!
I have been co-owner of More Than Lyme for a few months now and am working on some very exciting projects! There are lots of wonderful things in store for More Than Lyme, so keep watching!
On February 29, I pushed myself to do something truly awesome. I went deep sea fishing (for the first time!) with Sean and his family. The past two and a half years, I’ve missed out on parties, graduations, new + old friendships, traveling, careers, living independently, new experiences, and everything that makes life wonderful. I’ve been in some dark places over the last few years, but I’ve managed to have some trust in the process and use what this experience has given me. (Weird thing to say about a devastating illness, but you know. Do what you will, Lyme disease.)
As I recover, as slow as possible, and frequently face setbacks, I get to experience these wonderful bits of life that I’ve missed out on for so long. I’m proud of myself for that. I feel like it’s something that I deserve. I’ve endured the pain of the disease and I’ve put in the hours for healing. I’m nowhere near being healed or living a normal life yet, but I’ve come so far. And I’m proud.
I laid in bed for three days beforehand to prepare. Half because I had a constant migraine, half to rest my body for the strain of deep sea fishing. I wasn’t sure if I was going to be able to make the trip. I woke up at 5 am, peeling my eyes open and immediately feeling the pain in my head, in every joint, and all over my body. I was filled with the fear of what may happen being 50+ miles offshore with no cell phone service. I pulled myself from bed, pushed those thoughts out of my head, pushed my physical body as hard as possible, and went. That was the best decision I could have made.
Between the pain, there was a feeling of real life. Sean and I were actually living. Doing normal things. We ate Publix subs and caught trigger fish and watched the deep blue sea glimmer in the sunlight. We felt the water splash on our faces, the sun pour on our pale skin, and the joy of not being surrounded by all things illness. We were lucky enough to have Sean’s uncle, a doctor, join us for his company and peace of mind. He even helped me when my sciatic nerve pain flared up. Everyone was smiling, laughing, and had a fantastic day fishing before the tourist season began. So the ocean was all ours.
The only time I had ever been fishing was as a young child, fishing for catfish in a pond in rural Georgia. I wasn’t very good at it. Over a decade later, with noodle arms, I was a pro. I have almost no muscle mass after years of illness, but somehow I pulled dozens of fish out of the ocean! Trigger fish, grey snapper, black grouper, red grouper, and more! We had to toss most of them back. Things got even better when we moved to a spot above a shipwreck where jack fish like to hang out. After a lot of work, heart palpitations, and wanting to give up a few times, I caught a 45+ pound jack fish! It was an amazing feeling of accomplishment. The ride home, I felt radiant and proud, resting my head on Sean’s shoulder and watching the wake of the boat cut through the deep blue ocean. These moments where illness is not in the forefront of my mind are the ones that I cherish the most.
But I felt really uncomfortable sharing this amazing day that I had. I have wonderful pictures of everyone smiling, holding up fish that we caught, and having an incredible time. But I didn’t think that I could share this on social media with my friends and family. I think this ties into my last blog post a bit; where is the line of portraying how sick I am? I didn’t know how to share the joy that I experienced without sounding too down about how hard it was to do in reality. I also don’t want to give off the false idea that I am healed. In reality, I laid in bed, in excruciating pain, for another three days after the trip. In reality, I have a long way to go. It was taxing on my my body, but uplifting for my soul. A pretty solid trade off. I even made a video to share one of my happiest days!
We’re only given one body. We’re only given one life. For me, the pain I went through after the fishing trip was worth the amazing experience. It was worth it to see how far I’ve come, how resilient I am, and how much more is out there for all of us going through a difficult time. Life is possible again and I will enjoy this slow trickle back into normalcy. And for now, I’m going to lay in bed, take my medication, and hope that another good day is in my near future!
I recently compiled a handful of clips from my last trip for Lyme treatment in Seattle to create a YouTube video. I captured the struggles, small wins, and tried to share the experience that I have to go through to regain my health. I made sure that the transitions were pretty, adjusted the lighting, and picked out a song that I felt captured my emotions. I put into words the joy that I felt when making that video. I also shared my own personal journal entries with the entire internet, which was anxiety inducing in its own way.
I poured my heart into that video.
And while I received an overwhelming amount of support from the Lyme community, it came with some hurtful backlash. I was told that I didn’t deserve sympathy because my video and social media presence weren’t full of pictures and videos of me laying in bed. I was called unrealistic. I was called a fraud. I was told I must not be that ill. I was told that I look clearly healthy from the video.
None of this is true. None of this diminishes the symptoms that I feel daily. Would it make you feel better to know that I spend most of my days with a migraine? Would it make you feel better to know that I spend most days in bed? Would it make you feel better to know that the only reason why I left the house in the past two weeks was to pick up prescriptions from CVS? That some days, I can’t wear clothing with buttons because my hands tremble too much? That I am constantly aware of the dull ache from the bulging disk in my neck? That my neck, shoulders, and back muscles almost constantly spasm, no matter how much medication I take? That I can’t stand up without my heart rate going over 130 bpm? That I have heart palpitations for hours every single night? That I haven’t driven a car in over six months? That my body radiates pain almost constantly? That I have spent nights forced awake to experience this disease instead of being able to escape into sleep? That I spend countless nights crying, worrying that my body will become a permanent prison?
Does it make you feel better to know that I am constantly suffering? Because if it does, I’d ask you to evaluate why.
I create for me. This disease has taken so much from me. And I’m beginning to reclaim what I deserve. I’ve discovered my creative side, started this blog, dabbled in iPhone photography, started writing again, am working from bed, and am now making videos. I’ve regained a slight bit of cognitive health in the past few months, and I will not take that for granted. I will not let it go to waste.
In my video, I showed you multiple IVs, injections, testing, appointments, long car rides, and my brave best friend getting surgery with no anesthesia. But I also opened up to you. I showed you the happy times. You saw healthy meals with friends, smiles and support in the IV room, me singing Semi Charmed Life to my boyfriend for probably the 100th time that day as he laughs and shakes his head. You learned that wheatgrass shots are pretty difficult when your face is half numb from oral surgery, you saw Melissa and I singing Santeria with our Uber driver when he could tell that we were having a bad day, and you saw an adventure in Volunteer Park. This is what I was able to capture on video and what I felt comfortable sharing on video.
Apparently it wasn’t enough.
Here are a few things that I didn’t include in the video:
Everything that I filmed at the airport was filmed from a wheelchair because I require wheelchair assistance.
I take Uber because I haven’t driven a car in almost six months due to the limitations of my disease.
I spent most nights crying from anxiety and physical pain.
I had in injection that made my thyroid swell up so much that I could hardly swallow for two days. Melissa had the same injection and lost all control of her right arm for days.
Almost every time I had to have a vein accessed, I had to be stuck with a needle multiple times because my veins are so scarred after being sick for so long. I had an uncooperative vein that decided to leak blood all over my arm and one IV infiltrate.
I had a migraine during nearly every second of that video.
Countless hours spent at home when we were too physically ill to leave the Airbnb.
And so much more that. So why is it that just a handful of negative comments in a sea of love and support can take us down? I am not the first to experience negativity towards my illness and not the first to talk about it.
I’m not sorry for not fitting your mold of what you think my disease should be like. I decided a long time ago that I’m going to be in pain whether or not I’m laying in bed or out enjoying coffee with friends, and I choose to do the latter when I can. More often than not, I’m stuck in bed, missing out on life. I’ve had to drop out of college, quit my job, lose friendships, miss out on my mom’s college graduation ceremony, and so much more. It’s heartbreaking. So, if I can get out of the house, I do it.
This is the tragic truth about chronic, long-term illness. Some days, I spend all day in bed, building up all of my strength just to make the trek to the bathroom and back.Some days, I look good. I put makeup on and swap my leggings for jeans and get out of the house. I look and function like a normal member of society. But I’m not. Beneath the facade, I’m in pain. I have to keep track of the pills, tinctures, injections, special diets, and so much more. But I don’t always want to show this. My suffering is not I want to be known for and remembered by.
Almost 1 in 2 Americans have a chronic, invisible illness. Always keep compassion in your heart. There is a struggle behind closed doors that you may never see. I do my best to let you in to see what I go, but sometimes I do not show it all, and I will never apologize for the creative methods that I choose to express myself.
“Be kind, for everyone you meet is fighting a hard battle.” – John Watson/Ian MacLaren
So, how to we walk this thin line of appearing ill enough for others to take us seriously while simultaneously remaining authentic to ourselves? I truly don’t have an answer for that. I think that there will always be people who are never satisfied, therefore we can only truly satisfy ourselves. Create for yourself, hope others enjoy it, but if they don’t, that’s okay. I reached out to the Lyme community on Instagram while I was upset and was built back up so much with love. Our suffering is real, whether people choose to accept and believe it or not. It’s easy to say that we should just ignore hurtful comments, but that can be hard. Understanding that what people say is more of a reflection of them than of ourselves has been beyond helpful to me in these past few days.
Positivity and optimism are what have kept me alive this long. I have been in so many dark places and if I allowed them to consume me completely, I wouldn’t have made it. I truly believe that there is an end to all of this, and I’m still on that path. So please, forgive me if I want to share my authenticity and love with others.
So however you choose to share your story, never, ever stop.
Two weeks ago, I returned from the Seattle area from my most recent round of healing, following Dr. Klinghardt’s methods. Suitcases packed, my boyfriend and best friend by my side, and surrounded by some of the most intelligent practitioners that I have ever met, we were unstoppable. Here is a short video that I complied to show firsthand the ups and downs (okay, mostly ups, because who’s going to film the downs?) of treatment. I hope you enjoy it!
I know this isn’t a food blog, but after I posted a picture of the paleo and vegan chocolate chip banana cookies on my Instagram a while back, there was too great of a response to not post the recipe. Plus, my boyfriend, mom, and I ate the entire batch in a matter of days. So we had to alert the masses.
I had planned to write a blog post about eating healthy around the holidays. Then a family friend delivered a gift basket of cookies to our house. Why you gotta harsh my vibe with your holiday generosity, man? My self control went out the window and I just didn’t feel authentic writing a blog post when I obviously wasn’t eating well myself.
In my last post, I discussed my New Year’s affirmations, and one of them was to eat for healing and to eat with intention. But after the over-indulging in the holidays, it’s hard to go cold-turkey. Having diet and allergy friendly treats on hand is the best way to combat these cravings. I wanted to create an easy recipe for chocolate chip cookies, but these turned out to be more like chocolate chip banana bread cookies. Either way, they’re awesome.
2 large, ripe, organic mashed bananas
1/3 or 1/2 a cup of organic almond butter (I’ll be honest, I just scooped out about half of a 12 ounce jar and didn’t measure.)
4 teaspoons vanilla extract
2 teaspoons baking soda
1 1/2 teaspoons cinnamon
2 1/2 cups almond flour
a dash of pink Himalayan salt
1/2 a cup Enjoy Life chocolate chips
Preheat your oven to 350 degrees.
In a large bowl, blend all of the ingredients. The mix should look evenly distributed and not clumpy at all.
Place flat, cookie-sized balls onto a cookie sheet and bake for 10-17 minutes, or until golden brown on the edges. Allow them to cool and enjoy!
For the leftovers, I recommend freezing them and eating them frozen. My boyfriend and mother prefer them at room temperature or refrigerated, so you can mess around and see which way you like them best, if they last long enough!
I struggle with New Years resolutions. They’re always self destructive for me. However, as a perpetual list maker, I love making them. Each year, I dream big about what I want to accomplish and come up with an extensive, idealistic perspective of what I think my new year will look like. At the end of the year, I often end up disappointed with myself. Most of the time I forget what my resolutions were and shrug it off. It kind of ruins the point.
Perhaps I’m looking at New Years resolutions all wrong. Maybe they’re not those to do lists that I love so much, which need to be checked off at the end of the year. It may be a much different paradigm. We already know the end of the year is a time for reflecting on our past behaviors. But is it really about setting a to-do list that we’re just going to feel bad about in 365 days?
You may not have done everything on last year’s list, sure. That’s a given. But are you the exact same as you were last year? Are the things in your life the exact same? I’m not saying that they’re perfect, but I’m sure you’ve made steps to get to where you want to be. Sometimes goals take longer than a year. And that’s okay. Growth and change are a slow and beautiful process of life.
So let’s stop looking at New Year’s resolutions as a checklist. Rather than looking at our lists as a source of guilt, I invite you to look at them as a source of growth. Let’s ask ourselves what steps we need to take to reach these goals and allow ourselves time and grace to reach them.
With that being said, I’d like to share with you some of my goals for 2016:
Making my mental health my highest priority. I’m getting back into weekly counseling. I’m also making sure to keep taking my depression and anxiety medication daily. My anxiety and depression have become almost as debilitating as my physical symptoms. There is nothing more important to my life than my mental health and no greater way to show myself love than to go to counseling regularly. I believe that one cannot fully heal from Lyme without addressing and treating the mental pain that comes with long term illness.
Fully dive into healing with diet. I’m great with every aspect of my healing protocol, besides diet. I struggle with food allergies and finding a proper diet has been no easy task. I eat well frequently but cheat on my diet. Instead of looking at this change as a diet, I’m viewing it as a lifestyle change (have you heard that phrase a million times yet?) and getting really excited about all the things I can create!
Be gentle with myself. Each possible moment, I want to be more understanding to myself. This ties into my “to-do list self”, but I need to understand that I cannot do it all. Not every day will be productive in the traditional sense of the word. I need to understand that resting is healing. I will use kinder words with myself and understand my abilities.
Find one thing a day that fulfills me and do it. That’s it, just one thing. That’s all I need. It might not be what I need to get done, but if there’s going to be something that makes my soul happy, I’m going to do it.
Increase my online presence. I plan on writing more blog posts and sharing more on Instagram. Making connections, creating, and having a purpose is beyond healing to me. This is a goal that I’m very excited for, but am realistic about because it might not happen due to my health. Either way, I can’t wait to see what I’m able to do in 2016! I’m very stubborn.
So there it is! My “resolutions”. But are they resolutions? A quick Google shows us that a resolution is making the decision to do or to not do something. An affirmation is emotional support or encouragement. A goal is the object of a persons effort and ambition. So instead of setting these cut and dry resolutions, maybe what we need to do is be gentle with ourselves and set affirmations and goals instead. What sounds better to you? A rigid checklist of obligations or a set of encouraging guidelines? Either way, here’s hoping to a brighter and healthier year!
What are your plans, intentions, and affirmations for 2016? I’d love to hear in the comments!