It sounds rather odd to say that I'm grateful to have a disease, but in a strange way I am glad that I am the one to have lupus. Do I wish I didn't have lupus? Absolutely, but I would never wish this disease upon anyone else.
Being diagnosed with lupus forever changed my life. I certainly never expected to be 19 years old and receive such a diagnosis. For all intensive purposes life was just beginning. I was in college, in a new city, with a fresh start, but here I was being diagnosed with an incurable disease. Looking back I don't think I understood the magnitude of such a diagnosis because I remember being numb when I got the phone call confirming my diagnosis.
In the years since I've been diagnosed I've gone through a lot; a zillion trips to various doctors, hospital stays, surgery, countless medications, and the list could go on. I've gotten asked a number of times how I can be so positive when I live with chronic fatigue and pain (among other things). Truth be told I'm not always positive. I have my days where I'm utterly exhausted, my emotions are ragged, and I'm hot mess. But every day I have the power to chose to let this disease get the better of me or to chose to be joyful. I chose joy and daily remind myself how blessed I am to have access to a really great team of doctors who help me in this fight. I chose joy because I know there's lupus patients out there who can't run or lift or workout period.
I chose joy because when it comes down to it why not try to find the good in a not so good situation?
I know very well that at any point lupus could affect any of my other organs and ultimately take my life, but I'm not going to dwell on that fact. That's like getting in a car and wondering if you're going to get in a car accident today, you just don't think about it. You know the risks involved, but you don't live your life in fear. I'm not going to let this disease have power over me. Sure, there's days where it does limit me because of pain, exhaustion or whatever is going on, but it makes me more thankful for the days where I run pain free or stay out a little longer with friends.
I'm also grateful for the friendships that have been made because of lupus. In a strange way I was blessed because one of my best friends and I were diagnosed three days apart so we've been with each other from the beginning. We also met two other amazing women who have lupus and together we've formed an incredibly strong bond. We've been through hell together. We've been on doctors trips together, sat through chemo sessions together, laughed and cried together, and not even living on different sides of the state has been able to break our bond. We have a group chat that we talk on daily and there's nothing we don't talk about. These girls are my lobsters (if you're a fellow Friends fan you'll understand). If it weren't for lupus I wouldn't have these girls in my life and honestly I can't imagine my life without them, nor do I want to.
Lupus is a terrible disease, but this journey has made me a stronger person. I'm more confident, I'm not afraid to speak my mind, I no longer take health for granted, I make myself a priority, I'm not afraid to say no, and I've learned to love my body for what it can do. I could add a lot more to that list but I'm still on this journey. I'm still learning and figuring out what works for me.
I don't know where this lupus journey will take me. I know there will be good days and some not so good days ahead, but I'm going to take it one day at a time. Lupus awareness month gives me a chance to speak out about this disease and educate those who have never heard about it before or don't know what it is. I know that for as long as I live I will continue to speak out and raise awareness because knowledge is power.
To my fellow lupus warriors, we are so much stronger than this disease. This disease can take so much away from us, but it can't take away our spirit of determination to rise in the face of adversity or overcome medical odds. We are more than statistics. We are more than this disease. Know that I am always rooting for you and never forget that you are a warrior. You are lupus strong.
Thank you to everyone who participated in all the various events for lupus awareness month. Thank you to all who wore purple for put on purple on May 19th to show support for lupus patients and research. Thank you to for all the sweet messages, comments, and texts of support. I am so grateful for each and every person who took the time to read any of my posts this month (here or on instagram) and took the time to learn about this disease. I don't have the words to fully express how thankful I am to all of you.
Know lupus so we can have a future with NO LUPUS.
Happy Thursday from sunny SoCal🌸 I am so excited to be in California visiting my brother and checking out the sights. Getting to SoCal has been an adventure in itself seeing as it took two Airbnb disasters and a flight getting pushed back causing me to miss my connecting flight, thus getting in over 2 hours later than planned and arriving smack dab in the middle of rush hour. Nonetheless I'm here now and I'm going to try to soak up some much needed sun and enjoy. Let's jump into this weeks thinking out loud!
1. I've used Airbnb multiple times to find places to stay all over the U.S. and I've never had a problem, but for some reason this trip seemed to be doomed. I booked a place over a month in advance and one week prior to leaving the host contacted me and said the current guest wanted to stay longer so she had to cancel my reservation. Cue scrambling to find a new place. I find a new place and I think all is well. But it's not. Less than 36 hours before I am set to leave my new host contacts me and says he has to cancel. He was incredibly rude and at one point threatens me so I call Airbnb basically in tears. There's only a handful of places left and all are significantly more expensive than what I originally paid. After over two hours on the phone and now less than 12 hours until I leave I finally got a new place to stay, but had to shell out over $100 more because the prior host screwed me. Needless to say I'm not overly happy with Airbnb or the jerk of a host right now. My new host has been fantastic though.
2. This quote seemed fitting after the whole Airbnb debacle. There was a series of bad days, but I am thankful to be in Cali now and spending time with my brother and his girlfriend. One bad day doesn't have to make another day or week or year, etc bad. Wake up each day with a thankful spirit and a good attitude. Good things will happen. There's always good even in the midst of heartache or struggle.
3. In the midst of a lot of ongoing chaos my best friend and I went out for a girls night. We hit up one of our favorite restaurants, had a fabulous dinner, relaxed, laughed, and got dairy free froyo after. I'm seriously so grateful for Kate because she never hesitates to tell me exactly what I need to hear. She knew life had been stressful recently and she immediately said, "We're going out for a girls night." It was exactly what I needed. I'm so thankful to have such an amazing best friend💜
4. I'm also incredibly thankful to everyone who participated in Put On Purple for lupus awareness last Friday. Typically I am not one to open up about my struggles with the disease, but in the past few years that I have been sharing my story I have met countless others who also struggle with the disease. I've formed amazing friendships with people from all over because they understand and relate to what I go through on a daily basis. Now I'm proud to share my story because if it makes one other lupus warrior feel less alone then I'm more than happy. If you or anyone you know struggles with lupus don't ever hesitate to email me, I'm more than happy to lend a listening ear. Of course I also wore purple because raising awareness and educating others about lupus is so important in the fight to find a cure for this cruel disease.
5. In the past few months I have really gotten into self-care. I used to only think of my time at the gym or running as all the self-care I needed, but I got so burned out. I shared more about why taking time for self-care is important to me in a post earlier this week. One of my favorite ways to take time out for myself is by doing a face mask. It's really helped my skin tone even out (as much as it will anyway thanks to lupus) and it's made my skin super soft. My favorite face mask is a dead sea face mask from skyorganics. I got it on sale on Amazon. I'm not sponsored in anyway by them I simply love their products and I feel good using their products knowing I'm not putting any harmful chemicals on my skin.
6. Cora has gotten increasingly lazy. She always used to greet me when I got home from the gym in the morning, now most of the time I'm lucky if she opens one eye or sometimes I have to step over her to get in. She always plays way harder in the spring and summer since she can be outside so much more so in the mornings she is dead tired. Normally around 8 or 9am she starts to really wake up and of course wants to play again🐶
7. I came across this quote this week and it really struck me. I used to be so big on journaling and I've kind of fallen away from that habit, but writing stuff down is how I make sense of things. I've also find writing to be incredibly healing. You can spill all of your feelings onto the page and when you're done you feel empty, but clean and you can close the book, walk away and begin again.
I'm going to end things so I can head out and soak up some more SoCal sunshine☀ Have a fantastic weekend and a very happy Memorial Day!!
How do you like to make sense of things? Journaling, Going for a walk, etc.
What is your favorite way to practice self-care?
Self-care is something I have always struggled with. I love running, lifting, practicing yoga, hiking, and meal prepping, but I've always thought I was being selfish by dedicating so much time to myself. It's time I take out of my day that I could be doing something else- working, volunteering, etc.
I recently returned from vacation in Hawaii and the biggest lesson I learned was taking time for yourself is not selfish at all. I'm a perfectionist to the nth degree. No matter if I'm doing something personally or professionally I want it to be done just right. The problem was I had been running myself ragged striving for perfection.
Simply put there is no such thing as perfection.
You can work on something endlessly, but someone, including yourself, is always going to find a reason that it's not good enough.
For the first time in I don't know how long I put my phone away on vacation and ignored emails, texts, phone calls and most communication. I pulled out my laptop probably three times and even then it was only to back up my photos in case something happened to my SD card. Taking time away from technology was so refreshing and it was something I desperately needed.
I'm sure we've all heard the phrase live in the moment, but it's so true. Putting my phone away and just heading out into nature was so refreshing. I went for walks, hikes, and runs without every snapping a single picture. I sat on the beach and listened to waves and just soaked it all up.
Did I take pictures and videos? Of course because I want those things to remember my vacation by and to share with others, but that wasn't on the forefront of my mind. Instead I focused on soaking up all the vitamin D I could (with sunscreen on of course 😉) and just being present.
I can honestly say it was one of the best vacations I've ever been on. There were less than perfect moments but I gave my body the rest it needed, both physically and mentally. I still ran and lifted but I did so for pure joy. Running in Hawaii never once felt like a chore because the scenery was so beautiful and there were so many places to explore. I did yoga on the beach and watched the sunrise and left with an incredibly full heart.
Life is meant to be lived in the here and now. Life isn't meant to be lived through a phone screen while trying to portray life as perfect on social media. Life isn't perfect. It's messy, it's chaotic, it's a crazy, unpredictable ride, but life is pretty dang awesome.
There's nothing wrong with taking a break from work and social media to just unplug. In fact it's needed. Take a day and just disconnect. Spend time taking care of yourself and in genuine conversation with other people. I came across some really amazing people in Hawaii and I ran with the same people every morning because I genuinely enjoyed their company and conversation. Had I been on my phone or had headphones in I would have missed those moments.
Disconnect from your devices and connect to yourself and those around you. Since I've been back I've made it a point to take time out every week to take care of me. I don't feel guilty working out or going to yoga because those are moments where I am making myself better by making myself a priority. I've also been doing weekly face masks because it's incredibly relaxing and it gives me some time to just destress.
Self-care is not selfish. By taking time out to make yourself a priority you will see other areas of your life improve and you will be more productive. I know it's made me more productive and it's helped me to manage stress better. So go ahead disconnect and set some time aside for yourself, I promise you won't regret it.
