Sclero-what?

Some days are really great. Some days I actually feel like a normal person. It's those days I think I can do just about anything, like drive to Salt Lake early in the morning, pull an all-dayer at work, then go to dinner with friends, stay out late and do the same thing again the next two days. It doesn't hit me right away, which, I suppose could be both good and bad. But because it doesn't hit me, I tend to keep going hard. I feel normal, like I can do anything. But then it hits, and boy does it hit hard. The fatigue, the weakness, the exhaustion. I don't want to get out of bed. I get headaches, my stomach hurts, my emotions get all out of wack. I wish I didn't have to adult. Unfortunately, i do have to adult. I still have to get up, get ready, and go to work. I have to smile when I feel like crying, stand when I feel like sitting, move when I just want to curl up in bed and stay in one spot forever. If I took the day off every time I felt like cra...

Today in church we sang a hymn that really hit close to home. It was one I haven't sung in a while, and as we sang, I was flooded with emotion. Though my posts would never really indicate this, volleyball and basketball weren't my only loves. Music was/is another. I am obsessed with music. I love to listen to it, find new bands, discover different genres. I love to sing. I don't claim to be Taylor Swift by any means, but I can carry a tune. I even had a classmate tell me I had a "really nice alto", to which I thanked him, then promptly told him to shut up. I love harmonize, and love when I find a soprano at church whose voice blends well with mine. I also love to harmonize with Ed Sheeran, James Bay, Shawn Mendes, and One Direction (to name a few). I'm way too embarrassed to sing alone in front of large groups of people, but get me alone, and I will serenade you. I also love to play the piano. I have played since I was 8 years old, took lessons until I wa...

If you follow me on instagram at all, you will know that I have some very strange dreams. For example, one of my more recent weird dream was about my friend Melanie and I being asked to pass the sacrament at some multi-stake conference being held in Cokeville, or most recently about how the singer Shawn Mendes replaced my dream boyfriend not only in the band they were in, but also as my boyfriend, and those aren't even the weirdest dreams I have had. I have had many dreams throughout the years where I am playing volleyball or basketball, but I am not able to play like I used to. Either my feet seem to stick to the floor, or I can't serve the ball, or I can't dribble the basketball. For YEARS I have had those dreams. Even in high school. Now, we have to back up a little more before I get to my point. My dad has been a volleyball coach for as long as I can remember. I feel like I basically grew up in a gym, and I am okay with that. Volleyball has always been a passion of ...

For some reason all my papers for my English class have been related to Scleroderma. This one we were asked to write about something we believe in. I may have been in a hurry writing this, so it doesn't really emulate how I truly feel about laughter. Seriously, nothing is better than laughing, especially when it is quiet around, and you are the only one laughing, remembering something someone said. Being able to laugh about anything, from sharks, to One Direction, to Dr. Pepper, to pretty much the most random thing that you can think of. It truly is the "best medicine". Thank you to all the people in my life who make me laugh. I love you all. Now to the paper... Life is full of unexpected twists and turns. One minute you can feel like you are on top of the highest mountain, and the next you feel as though someone shoved you from your perch atop that glorious peak. Not only do you fall, but it seems as though you hit every rock and tree on the way down. When this happ...

For my English class this semester, we were asked to write a "love letter." Not to a person, but to something. The clear topic would have been One Direction, but instead I chose a topic a little closer to me. Scleroderma. I thought I would share it here. Dear Scleroderma,             I have had a hard time deciding how to address this. For many, it may seem silly for me to not hate you. I guess it isn’t exactly true that I haven’t had those moments when I would like to be done with you, but in reality, you have done so much for me that I can’t help but love you.             Four years ago is when you started to make your appearance, though at the time I didn’t realize it was you. All I felt was pain and discomfort, fear and anxiety. It wasn’t until I learned your name, Scleroderma, that I felt any comfort at all. Finally being able to put a name to what I was going thr...

This year, the Northern Utah Scleroderma group decided not to do a 5K, but instead did a comedy night. I wasn't able to go, and was a little bummed as I have loved the race the last two years. It was fun to have so much of my family gathered in one place. Because of this, we nearly didn't do t-shirts (that and the fact that I put it off forever, then my mom was going to have hip surgery, and it was all just last minute). For the last year, though, I have been thinking that I wanted to continue to do t-shirts every year, with the proceeds going to a deserving family, whether they had Scleroderma, or not. I had in mind the family I wanted to donate to this year, so it broke my heart when we initially decided not to do shirts. I just couldn't shake the feeling, so I asked my mom again if we could do it. She, thankfully, said yes, and we were able to get the word out and sell shirts. Last year after the 5K when we were all at my parents house for Kennan's farewell, I wa...

It's actually surprising to me that it has taken this long for this to happen. I have worried that it may possibly happen many, many times, but yesterday was the first. Here's the backstory... For the last year or so, I have been extremely bloated all the time. So much so that I have people ask if I'm pregnant at least once a week. My doctor has given me a recommendation to do a colon cleanse, but I have yet to find time to do it. I work M-F, and every other Saturday, and my weekends have been full, so I haven't had time to do it. I decided to try something more natural, that wouldn't require me to spend time at home, basically living in the bathroom. I found a recipe on Pinterest for an "all natural "secret" detox drink recipe" that should "help bloating, increase energy, speed-up metabolism, stabilize blood sugar and boost your immune system." All things that would be perfect for me. It called for lemon juice, apple cider vine...

Last year, the day before the Northern Utah Stepping Out for Scleroderma 5K, I was told we were going to have a "casual Friday" where we could wear jeans & USU shirts. So I show up in my jeans and an Aggie shirt. When I walked in I noticed my co-workers wearing a light blue shirt, which I thought was odd since USU is dark blue, but I didn't really think anything of it until I got to my station, and there was a card and this T-shirt sitting at my station. All my co-workers were wearing them. Not gonna lie, I teared up a bit. It was pretty awesome that they would do that. We had quite a few people ask about it, which was awesome, because it's just another opportunity to spread awareness (plus let the members know that I don't actually have an eating disorder, and that I am not just naturally awkward in my stance!) It has been a hard few years dealing with this disease, but the one constant outside of my home has been work. My co-workers have been amazi...

It's time to sign up and register for the Northern Utah: Stepping Out to Cure Scleroderma 2015 race! The site to register for the Scleroderma 5K: http://www.scleroderma.org/steppingoututah To register under my team, or to donate, search from "Team Bre" Under the donate section on the right. It will pull up another link to click on that should take you to my team page. Follow the instruction from there! The walk/run will be held August 8 at Memory Grove Park in Salt Lake City. If you don't want to run/walk, or you are able to make it, you can donate to my team through that same link. All proceeds go towards the Scleroderma Foundation. Thank you all for your love and support. We had an awesome turn out last year, and I'm looking forward to this year's race!

Yesterday was a "typical" Wednesday. I woke up around 7:03 to get ready for work. It is earlier than my other weekdays because we have a work meeting Wednesday mornings at 8. This Wednesday we were going to breakfast at Village Inn because we met some referral goals. A normal person would think that it's awesome to get a free breakfast, and I guess it is, but it's not so awesome for me. My stomach does not handle large breakfasts very, and using silverware I'm not used to can be hard, really uncomfortable, and hurt my fingers. Not to mention, eating sitting straight up is really hard. Then there's the fear of spilling on myself. I can't just run home and change quickly. It's not that easy for me. When we go out for breakfast, I feel like I have to get something even though I know it will upset my stomach, because I don't want them to question or wonder why I'm not wanting to eat. So I order a my breakfast, even though my stomach is turn...

There has not been anything too "exciting"going on, and my head hurts right now, so this is going to just be a quick update/recap. No deep thinking for me. Seriously. Head. Hurts. So, ever since I was little I have been known for my long fingernails. I really just hate to clip them. It's not that I like them long, because I actually don't, but I just have issues clipping them. Now it's even harder for me, so I usually let them go until I can't take it anymore, or I attack myself and cut my thumb or other fingers up. It's silly, but anytime I get a scratch or sore on my hands, they hurt like crazy. I can't tell you how many times I dig into my other fingers with my thumbnails. This is weird, I know. (Remember about my head hurting!) I have always had quite terrible fashion sense. So when I get new outfits, I'm all sorts of excited...until I put them on and realize how helpless I feel in them. This is a cute outfit, and a normal person may hav...

The last few months have been pretty ordinary. I’ve had two appointments with Dr. Walker (my rheumy) which both went well. They were just basic, “How are you feeling?” appointments, which is fine since nothing has really been too different. I have really enjoyed working with Dr. Walker. I like his sense of humor, his personality, his knowledge. He’s been really great. He makes me feel comfortable and can joke around with me, yet still be quite caring. I’m glad I didn’t listen to others who told me not to go to him. If I felt like there was something others could do for me that he isn’t already doing, then I would request a referral, but I truly believe that he is doing all he can, and I really appreciate him. I mentioned to Dr. Walker at my October appointment that I wondered if there was anything I could do to build back my strength. He suggested physical therapy, so now I go to physical therapy every once in a while. My first physical therapy experience was interesting. Wel...