Why You Should Confront Your Disease

My friends supporting Bella Soul and me at the gala!
My friends supporting Bella Soul and me at the gala!

In the summer of 2014 I was diagnosed with a rare kidney disease. This affected my life significantly, especially because I was about to start my freshman year of college. As I explained in a previous blog post, I didn’t feel comfortable talking about my disease with anyone… I felt so alone. With time I confronted my sickness, and I shared my story with the nonprofit organization, Bella Soul. Writing was my way of opening up and explaining my journey with the people who didn’t understand what was going on in my life.

If you have ever been diagnosed with a disease or disability, I hope you eventually work up the courage to face it like I have. Opening up and sharing your personal story is not an easy task, but doing so is some of the best therapy I’ve ever received. If you don’t feel comfortable talking about your disease, know that you have other options:

  1. Write about it.
  2. Record yourself.
  3. Make a podcast.
  4. Post a video.

Any of these options are great forms of communication. Do what works best for you and what you feel most comfortable doing!

Since I’ve gained comfort and accepted living with disease, I no longer feel alone and I can freely talk about my the status of my kidneys. I’ve gotten so comfortable talking about them that I sometimes bring them up at inappropriate times (we all have a little social awkwardness in us). But I’ve learned that you should never feel like you’re not allowed to talk about your disease or disability. Every time you speak about it, it serves as therapy. Sharing your experiences only makes you a stronger person!

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Giving my speech at the Bella Soul Gala!

If you write about your story, think about submitting it to Bella Soul’s website to share with the world. There are people out there just like you; you could inspire others to open up about their own stories.

Interested in the nonprofit organization, Bella Soul? Learn more, here.

You can tweet me @lauren_wilmet for more information, as always.

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Can We Talk About Something Else, Please?

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Yup, just like this. Photo Credit: fiftyfourandahalf.com

My freshman and sophomore years of college were a struggle for me. I HATED talking about my kidney disease, and I HATED when people would constantly ask me about it. Every time someone asked me, “How are you feeling, Lauren?” or the status of my kidneys, I wished that person could see the steam pouring out of my ears.

I know this sounds dramatic and like I’m a total “B” word, but everyone knows how frustrating it is being asked the same question over and over, especially when you don’t feel comfortable talking about it in the first place. I understand that it’s because people care about me, but all I wanted was to have normal conversations!

Consistently being asked these questions can make one diagnosed with disease or disability want to lock up their feelings even more. We are constantly in search of normalcy in our every day lives; it’s not enjoyable when we’re reminded of something that sets us apart from others.

My advice is this: Give your loved ones diagnosed with disease or disability time. Don’t try to pry out their feelings or push them to talk when they don’t feel comfortable doing so. You have to trust them. When they are ready to talk, they will let you know.

If you’re a parent of someone with physical ailments reading this, I’m in no position to tell you how to talk to your children. But coming from a young adult who suffers from a rare kidney disease, I’m pretty confident your loved one has felt this way at one point or another.

Today, instead of trying to pry people’s feelings out of them, I treat them how I want to be treated if something troubling happens in life. I simply show them that I care and give them the opportunity to talk if they ever feel like it. No matter how much you want to know what’s on their minds, you have to wait for them to come to you; they will come eventually!

Want to learn more about my story? Check out this blog post. Tweet me with the Twitter handle @lauren_wilmet for any questions, comments, or concerns. I’d love to hear from you!

 

 

5 Steps to Excelling in College

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Photo credit: uncommonglobe.com

College already isn’t easy, and if you add living with disease or disability into the mix being a student can be even harder. Every student knows that going to class, taking good notes and studying are key elements to doing well in school. Those aren’t the only factors to surviving college, though. Maintaining your physical and mental health is just as important, and following these five steps can help you excel in your studies.

STEP 1: Find time for “me” time. As students, we all know that we have to balance our time with school, homework and friends. Most importantly, you have to make sure you make time for yourself. Set aside time to do something that makes you happy and relieves your stress. This will help you maintain a positive attitude.  

STEP 2: Work out/exercise. I know. You’re probably sick of being told this ALL OF THE TIME. Working out may not be everyone’s priority, but it really is important. I understand that people’s medications affect them differently and that exercising can be difficult to do (I’m right there with you). Just make sure you’re getting your heart rate up and are doing exercises you can physically do. Easy ways to stay active are walking to class instead of taking public transportation, or playing your favorite sport with your friends!

My roommate and I taught a tap class on campus.
My roommate and I taught a tap class on campus.

 STEP 3: Take care of your health. Exercise, eat healthy, get the proper amount of sleep, and keep hydrated. You will feel, think and learn better.

 STEP 4: Relax. When you’re stressed out, take some time to recuperate instead of wearing yourself out more. Meditation is something I like to do. You can simply search for a meditation exercise on YouTube and you’ll feel better in 10 minutes! These relaxation techniques may not be for everyone, but they’re worth a shot. What’s most important is that you find a way to relieve your stress in order to maintain a positive mentality.

STEP 5: Know your resources. Many universities have free health services, so take advantage of them! The counselors, nutritionists, and general medicine doctors are there to help and support you. There are also disability resource centers for students with diseases or disabilities. Having a local doctor’s name and information on hand is beneficial as well incase of a medical emergency.

If you are a UW-Madison student seeking out assistance because of a physical ailment, check out the McBurney Disability Resource Center for more information. You can also find University Health Services website here.

I hope these 5 steps benefit you as they do for me.  If you have suggestions on how you maintain great health in college, tweet me with the Twitter handle @lauren_wilmet!

5 Ways to Enjoy College While Battling Disease

Being a college student living with a disease or disability can be frustrating. You may feel like you don’t relate to anyone, or you’re missing out on the “college experience” you’ve dreamt of your entire life.

I know I felt this way during my first few years of college; I wasn’t allowed to drink and that’s often what my friends looked forward to every weekend. Therefore, socializing and meeting new people didn’t always come easy to me. I had to find alternatives to drinking so I could enjoy my time in school. Whether or not your story is comparable to mine, here are five tips on how you can have fun in school while battling disease or disability:

  1. Have a movie night. Gather up some friends and have a movie marathon! Warning: binge watching the Austin Powers movies may cause some of your roommates to say, “No, baby.” If you didn’t get that extremely corny Austin Powers reference, do yourself a favor and watch it right now.

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    Freshman year visiting Michigan Tech. There’s only soda in there, I promise!
  2. Go out with your friends. Regardless if you can or cannot drink, spend a night out with your friends. Branching out and socializing not only benefits you, it’s also fun! If you can’t drink, it can be really annoying constantly being asked why you can’t. I learned to bring a red solo cup along with me and fill it with soda. Worked like a charm every time!
  3. Go out for dinner, or order in. Going out for a nice dinner with friends is the perfect way to put your mind at ease. Don’t want to leave the dorms or your apartment? Ordering in can be just as fun. You may have diet restrictions depending on your disease, but it’s ok to splurge every once in a while… Everything in moderation, right?
  4. Become involved with a campus organization.   Not only do future employers like to see that you’re involved with outside orgs, it’s a great way to have fun, meet new people and form friendships. There are hundreds of college organizations and clubs on campus; find one you enjoy and become an active member!   UW-Madison has a cheese club. What more could you ask for?
  5. Get off campus for a day. As students, we don’t venture off campus very often. Take a break from your pile of homework and go for an adventure! If you or your friends don’t have vehicles, many campuses have buses that will take you to the destination of your choice. Get some retail therapy, visit the local humane society, rock out at a concert or treat yourself to a movie at the theater.

    Umphrey's McGee concert in Madison, Wisconsin (2014).
    Umphrey’s McGee concert in Madison, Wisconsin (2014).

There are endless activities you can do on or off campus for fun.  These are just five tips that I enjoy doing and hope you will, too!

If you’re on Twitter, tweet me (@lauren_wilmet) if you have any questions or suggestions for future blog posts. I’d love to connect with you!

Meet Bella Soul, A Nonprofit Org Like No Other

Over one billion people in the world are living with a disability. That makes individuals with disabilities the largest minority in the world.

As I explained in a previous blog post, I was diagnosed with a rare kidney disease a few days before my freshman year of college. Needless to say, the first couple years of school were NOT what I had dreamt them to be.

I think I can vouch for any college student living with a disease or disability: you feel like a complete outsider. Trying to make friends can feel nearly impossible, especially if you’re consistently being asked questions like, “why aren’t you drinking” or “why is your face so puffy?” All we want is to feel like we fit in.

Shannon Strader knows this feeling exactly. Since her freshman year, she felt alone, listening to her friends having a good time while she was stuck in bed with excruciating body pain. She spent 19 years urinating blood, vomiting from pain, and not being able to eat or sleep without hurting. After years of doctors telling her there was nothing wrong with her and that she was tooshan_believe “dramatic,” Shannon connected with a nephrologist that found something unusual: her renal vein was behind her aorta instead of in front where it should be. It was being compressed by her spinal cord and aorta, causing internal bleeding, congestion and little blood circulation throughout her body. If you ask me, that’s not being dramatic! Shannon underwent three surgeries to fix the troubles this rare kidney disease was giving her; not to mention the surgeries were the first of their kind.

Shannon suffered through all of this, as well as losing a best friend, her twin sister, Lauryn. At 20 days old, Lauryn contracted meningitis and was later diagnosed with cerebral palsy. These series of events led Shannon to createshan_youth Bella Soul, the first nonprofit in the world to support individuals, mentally and financially, living with physical disability or illness as well as chronic/terminal illnesses in college. Her vision was above and beyond the average 19 year old’s; not many people can say they started a nonprofit org at age 21!  Shannon is the real Superwoman, and I am so grateful and proud to have been by her side throughout this process.

People always say they understand what you’re going through, but they never will until they’ve experienced it first hand. That’s why Bella Soul is so powerful; not only does the organization provide scholarships to students battling tuition and medical bills, it serves as therapy and helps those around you better understand what you deal with everyday.

I hope Bella Soul changes students’ lives just like it did for me. Shannon should be commended for all of her hard work, bravery and passion she consistently puts into this wonderful 501 (c)(3) nonprofit organization. I can’t thank her enough for trusting me and making me the Vice President of her team. I’ve enjoyed watching Bella Soul grow into the wonderful organization it is today, and I can’t wait to watch it continually grow and influence others as it has influenced me.

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The Bella Soul Team pictured from left: Me (VP), Alex Ritger (Secretary), and Shannon Strader (Founder/President).

To learn more about Bella Soul, check out our website here.  You can also find us on Facebook and Twitter!  We’d love to hear from you.

There’s People Out There Just Like Me?

You spend your whole life picturing the day you move into college. There are no words to describe the feeling being told you may not be able to go.

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My first Badger football game!

Early August in the summer of 2012, I became really sick. For a week I was at the hospital every day meeting new doctors to try to piece together what was wrong with me; I can’t count on two hands the amount of medical tests I had done. It turns out my lab work showed I had 20 times the amount of protein and red blood cells in my urine than normal! I went to see a nephrologist (a kidney doctor), and before I knew it I was getting my first of two kidney biopsies. Yes, I was lying there wide-awake while the doctor took tissue samples right out of my kidney! Cool, right? (I think so, at least).

My doctor told me I wasn’t allowed to move into college until we got my biopsy results back. This was literally the worst news I’ve ever heard- I was 18 years old and wanted to make my college dorm Pinterest board a reality! I wanted to make new friends and meet boys! The morning of move-in I got my results back. Like Katniss Everdeen, the odds were ever in my favor… I was Lupus free! Instead, I was diagnosed with acute kidney failure and a very rare kidney disease called C3 Glomerulonephritis.

C3 Glomerulonephritis (C3GN for short, let’s make it easier for both of us) is an autoimmune disease that attacks my kidneys, meaning my body thinks there’s an infection in my kidneys when there really isn’t. We all have tiny “knots” of capillaries called glomeruli in our kidneys that filter blood, turn its toxins into urine, and reabsorb essential molecules that our bodies need. My disease makes my glomeruli swollen compared to the usual tiny network of capillaries, so I can’t reabsorb my body’s proteins and red blood cells. Instead, I excrete them in my urine.

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My mom and me at a hospital fundraiser.

As a result, I’ve had a pretty hefty list of medications prescribed in order to manage my disease and keep my body healthy. Although the meds were helping my body, I struggled through terrible side effects every day. One medication I wish upon no one is prednisone, a really helpful but demonic steroid. It made me gain over 30 pounds of water weight- I didn’t fit into my clothes and I couldn’t put boots on because my ankles were so swollen! I had chipmunk cheeks and got enormous, purple stretch marks all over my body that still look like leeches. Also, this drug made me eat as if it were my job. I felt like I could win three hot dog eating contests in a row and still be hungry! Growing up a competitive dancer I was always aware of my body image, so watching my body transform from one tiny pill made me extremely self conscious and disheartened. I became a total introvert my freshman year and I suffered from anxiety and depression. I felt so uncomfortable in my own skin.

Today, I feel as though I’m a completely new person. I’m off a lot of those haunting meds, and my kidney disease is under control. I’ve even worked up the nerve to speak out about my crazy journey. None of this would’ve happened without the help of the fantastic nonprofit organization I’m proud to be a part of, called Bella Soul. Bella Soul allows sick students, just like me, to share their stories. For two years I felt alone on campus, like there was no one to relate to. Through Bella Soul, I’ve learned that I pass students everyday that have their own bumps in the road. It’s hard being in college and not being able to live out the “college experience” you’ve dreamt of your whole life. It’s so rewarding when you meet students who know what you are going through; your craving for normalcy is fulfilled and the loneliness is gone.

Talking about your disease or disability is easier said than done, though. I know how hard it is; it took me two years to open up about myself! But if I hadn’t, I know for a fact I wouldn’t be as happy or healthy as I am today. That’s why I think communication is the key to overcoming physical and mental hardships. I hope that sharing my story inspires others to do so as well. Not only is writing therapeutic, it helps your family, friends, and community understand what it’s like to spend a day in your world.

While scrolling through my twitter feed one day I stumbled upon this quote: “If God brings you to it, He will get you through it.” I know, totally cliché of me to end my post with a quote. But this quote basically describes how I got to where I am today. Because I was diagnosed with C3GN, I know that I want to be a physician assistant working in nephrology. Because I was diagnosed with this rare kidney disease, I was led to a powerful nonprofit org called Bella Soul. I hope that everyone, not just those with chronic illnesses, find this organization as enlightening and beneficial as I do!

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Bella Soul founder Shannon Strader, Bucky, and me at the Bella Soul Gala.