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 was a sophomore, was called to play the organ in church, and have held various pianist callings. Until about 5 years ago. You know, when I was diagnosed with Scleroderma. I slowly quit playing due to painful ulcers on my fingers, then as my hands started to become "claw-like", it became harder and harder to stretch my hands to play chords. I quit playing for a good while, and only recently started to play again because I was asked, "Do you know how to play the piano?"

I never know how to answer that question, because, yes, I do know how to play the piano. In fact I was at one time really good at it. I can sight read pretty well, and could teach myself to play various songs in short amounts of time. I just have a hard time playing now days.

Today was a hard reminder of that. The song that we sang is "How Great Thou Art". First, AWESOME harmony in that song. The alto part is amazing. Second, this is a song that I used to play ALL THE TIME. Marvin Goldstein has a gorgeous arrangement of it. My last piano teacher let me borrow "Gift of Love" and I gave it back to her very well worn. It is a very difficult song, and took me quite a while to learn it. I would take it over to Gram's house, where I spent a lot of hours practicing and playing for her. This song was one of her favorites. Here is the version in the hymn book.


As I sat there thinking about how I spent playing this song, and the hours spent practicing, I was just reminded of the talents I once had. Playing the piano was one of my greatest escapes. I would play song after song on the piano, doing what I could to perfect each song that I played. The harder the song, the better. I have a couple of Marvin Goldstein's books, and wish I could still play them. Here is the arrangement by Marvin Goldstein. Just a slight different, right?
 
Luckily I can still kind of play, just don't expect many chords. My fingers only stretch so far, and the angle my hands are taking makes it difficult to play multiple keys at once. I can play most hymns, and unless you have a really good ear for music, you wouldn't be able to tell that I am not playing all the notes. I figure as long as I have the bass and soprano, we should be okay.

It's hard looking back on the things that you were once able to do. I try not to do it because it can be super depressing, but it is still hard, especially when you were good at something. I'm finding it harder to find things that I am still good at. I guess Sarcasm & Pessimism will have to do!

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 mine, and some of the best memories I have are from being on the court. To say I was obsessed is an understatement. Volleyball and even basketball were my life...once upon a time.


I haven't been able to play the sport I love in almost 5 years, and the last time I played, I could barely move, and had to serve underhand. It's been hard, to say the least. Watching others play and not being able to even hold the ball like I was going to serve it has kind of sucked.


A few weeks ago I had an interesting dream. It was similar to the dreams I have had in the past, but it was different enough to make me think.

In this dream I was a freshman, and we were at the Bear Lake Freshman Volleyball tournament. I knew that I had Scleroderma, but no one on my team knew. My dad (who was our coach) knew, but Coach Toomer did not. Toomer kept trying to put me in, and I just kept shaking my head, trying to avoid being put in. (Which if you know me, I would jump at any opportunity to be in. "Put me in coach, put me in!")

I would look at my Dad and shake my head and give him a look like, "Don't make me play." Needless to say, it didn't work very well. I missed a few passes because I couldn't move fast enough, and I missed my serve because I had no upper body strength. After the first game was over, I had a little talk with my dad, who then told me to tell my teammates.

That is all I really remember about the dream, but it has bothered me ever since. Like I said, it was all very similar to my other dreams, but this one had just enough of a difference that it has bothered me tremendously.


The difference between this and my other dreams, was in my other dreams, I was in the stage of life that I am now, meaning, yes I was a 30 year old (or whatever age I was at the time) playing on a high school team (I told you my dreams are weird!) In this dream, I was a freshman, and I was diagnosed with Scleroderma, and unable to play my high school and college years of volleyball.The one thing I could think about was that my Heavenly Father knew that I would not be able to handle being sick as well back then, as I am able to now.

I know that sounds silly, but he knew how much I loved the game (basketball included), and that I needed those experiences in my life. I know He knew what playing sports mean to me. I had never thought about how my life would have been so incredibly different had I been diagnosed a lot earlier in life. I would never have had the chance to play at State, or on the All-star team, make All-state, or play in college, win our region, and travel to Missouri for Nationals.

I am grateful for this disease, but even more grateful for the Lord's timing in it.

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 happens, you have two choices: you can laugh, or you can cry. I think Marjorie Pay Hinckley said it best when she said, “The only way to get through life is to laugh your way through it. You either have to laugh or cry. I prefer to laugh. Crying gives me a headache.”

Laughter comes in all forms. There is the deep belly laugh, the cackle, the chuckle, the giggle, even the silent laughter. Whatever form it comes in, it tends to bring with it a feeling of satisfaction. I don’t think you can laugh and not feel some sense of happiness, even in the toughest times. No matter how bad your day may be, I can guarantee if you can take just a minute to laugh, you will feel a little better.

About four years ago I was diagnosed with a chronic illness that took away a lot of my mobility. No longer was I able to dress myself, do my hair, pick things up off the ground, and I grew quite uncoordinated. Throughout the years, I have had many embarrassing things happen, from taking a fall as I was leaving work, to trying to clean something off the floor and face-planting with no one around to help me. As I experienced some of these unfortunate events, I quickly learned that it is best to be able to have a sense of humor, and be able laugh when you are laying on the ground staring up at the ceiling. Without it, one can fall into a depressed state.

We do not have a lot of control over what happens in our lives, but we can choose how we react. I have seen the effects of both crying and laughing. Sometimes it is okay to cry. Sometimes we need to cry, but it is always okay to laugh. We always NEED to laugh. A good laugh will always help you feel better, and that is why I believe in laughter.

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 through helped tremendously.

            I spent a lot of time researching you, trying to figure you out. Words I had never heard before kept showing up, like systemic, sclerosis, Raynaud’s, CREST, and auto-immune disease, to name a few. It almost seemed like anytime I discovered something new about you, it brought up more questions. At the same time, though, I was able to learn how to best manage you.

            It took a while for me to warm up to you. You completely changed my life. You took things from me that I had worked hard for. It was not easy having you part of my life. You frustrated me, and you hurt me, however, the more you hurt me, the more I learned to love you.

            I think I learned more from you in 4 years than I have learned from the other 26 years. You gave me a strength I never knew I had. You taught me things about myself that I never even imagined. Because of you, I have grown tremendously. You have helped shape me into the person that I am today, and I will be forever grateful. Thank you for choosing me. I love you and look forward to the rest of our lives together.

Love,

Bre

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 was talking to my sisters about the possibility of doing a volleyball tournament fundraiser. It would be the same thing, to raise awareness for Scleroderma, however the proceeds would be given to a deserving family. I messaged my sisters and they were all on board.

Shortly after, my mom texted me and said that a girl that I went to high school with wanted to put on a tournament for my Uncle Stan, who was recently diagnosed with cancer. Stan said that he would like the fundraiser to be for me. My mom told her that I was planning on giving the funds away, so we decided to split any proceeds made from the tournament to go to two different families.
It was a really good tournament, and a great opportunity to spread awareness for this disease. There were 12 teams that participated, tables of  goodies and gift baskets that were auctioned off, and hamburgers and hot dogs were sold.
 It was really neat to see so many people show up in support of this. Even if they just wanted to play volleyball.

My sisters had a team, and while I would have loved to play, it just wasn't possible. Trust me. I tried to play with my nephew Alex. Because my arms doing turn, I struggled to hold the ball out to "serve" it. Even trying to toss the ball was a strange thing. It is so simple, right? I don't know if it was because I'm weak, or if it was my lack of coordination and super slow reflexes, but I really struggled even tossing the ball. It was a bit strange.

Anyway, my sisters had a team. There was Shari, Kandyce, McKenzie, Ashbee (SIL), Madi (Ashbee's sister), Sheila (cousin), and Lauren (friend). It was fun watching them and cheering them on.
 I still, and will forever, claim I'm adopted. Proof is below.



 Lots of memories in this gym. Lots and lots!

It was also really fun to see some people that I had played with or against all those many years ago, and seeing so many people wearing my "Team Bre" shirts (which, I need to apologize that they weren't as awesome of quality as years past. Going forward we will not be using the same place.)

One of my favorite parts, besides spending time with my family was meeting another Sclero-sister. Jennifer lives in Georgetown, only about 45 minutes from Cokeville. It's fun to be able to talk with someone else who knows what I'm going through, and knows how to awkwardly pose with me! ;) (PS, my arm does NOT straighten.)
I just have to say thank you again to all who showed up on this day. It was an amazing day, and so fun to see such support. Thank you just doesn't even cut it. Thanks to Savannah for putting this together. For finding the teams, items for the auction, and for just doing an amazing job and being an amazing person. Thanks to my family and friends for their continued love and support. You're all amazing.

Looking forward to next year already!

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 vinegar, cinnamon, honey, and water. Simple, right? I mixed it all together having no belief that it would taste good, but certain it could help with the other stuff. Sure enough, totally not delicious, but manageable. I got about five or so sips into it, before remembering why I stopped drinking lemon water a few years ago, when I last tried.

Holy ACID REFLUX! When my acid reflux kicks in, it affects my entire body, making me feel achy, my stomach hurt, and pain all the way up to my head. It's no fun, but tolerable. When I was done with that, Greg decided we should go shopping. I still felt a little sick, but was okay. We went to Hastings, then to Sam's Club. As we started walking through Sam's, I started feeling extremely nauseous. I made Greg slow down quite a bit so I could keep my stomach from tossing it's contents. It worked, and I felt okay.

We then went to the Budge Clinic to get my prescription refilled. I sat in the car while Greg went in to get it. I felt okay, but didn't feel like I needed to vomit or anything.


Our next stop was Lee's, where we had to get our ice cream fix. I don't know what happened between the car and walking into Lee's, but the feeling that I was going to puke came on quite strong, even more so than at Sam's. I knew this time that there wasn't stopping it, so Greg and I went back outside, frantically looking for somewhere I might be able to release my stomach contents. The garbage cans right outside of the doors were covered, and try as I might, couldn't think of any way to make it work, then Greg noticed some open topped garbage cans further down the sidewalk, in a less trafficked area.


I walked as fast as I could down the sidewalk to those cans, trying to keep it all in. Luckily I did okay for the most part, and made it just in time. The only thing I had in my stomach was that lemon water, so it was a quick process. Greg stayed as far away as possible (he's so sweet! ;) haha, and there were not many people that really walked by, for which I was grateful. I was able to vomit in peace, and while I would have preferred to do it at home, I'm grateful for the location of those garbage cans, and for my husband who, even though he wasn't right next to me, stayed close to make sure I was okay.

I always feel better after puking, which is nice, but I was still a bit shocked that it happened in public. I'll have to start carrying around a vomit bag, just in case!


It really is shocking to me that this is the first time it's happened. Especially since I was vomiting so much about 2 years ago. I never had it happen to me in public. There was another incident that happened, but it also was one-time, and that one is less pleasant to talk about!

But with all the awesome side effects of Scleroderma, I've been cautious of being in public. I don't like to shop alone in the event that I drop something, or if I were to trip and fall, or vomit. I'm grateful that this is the first time that Scleroderma has caused such an awesome public display, but I sure hope it doesn't happen again.

Luckily, I don't get embarrassed really anymore, so even when I find myself hovering over a garbage can outside of Lee's Marketplace, I can look up, wipe my face and hands with their hand wipes (thank you for that as well!) and get our ice cream. But the initial panic of what to do is not fun, so, again, Scleroderma, don't let it happen again!

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 amazingly supportive, and helpful. Even the newbies. I don't actually tell them exactly what is wrong with me, but they pick up on things, and if they have questions, they will ask. It's been a wonderful place for me to work, and I'm grateful for all the people I've worked with that have been so willing to help me out.

Back Row: Kristin Davis, Chandler Midgley, Donna Andersen, Me, Steve Lucherini
Front Row: Colton Butterfield
Picture: Danny Brownell - our old branch manager who happened to stop by that day. Have to shout out to him too, since he was there when I was at my worst and didn't get rid of me.

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 turning imaging the food I'm about to eat in it. I try to order the lightest, least greasy, non-eggs meal there is.

When the food comes, and everyone digs in, I look at my food, trying to decide where to start. What will be easiest on my stomach first? What will be easy to cut into small pieces and fit in my mouth? If I try to eat this, will it spill all over me? Do I have enough water in case something gets stuck in my throat? Questions most people don't ask before digging into a delicious meal. Questions I never asked myself before the Gastroparesis started.

I've become a really slow eater as if I eat too fast, it just makes me even more sick to my stomach. So, as everyone is finishing up, I'm barely through half of my meal. Then comes the debate of, "If I stop eating will my stomach hurt more, or if I keep eating will my stomach hurt more?" Seeing as everyone is ready to go, I usually stop eating. I mean, let's face it, the longer and more I try to eat, the less appetizing the food is.



As this large breakfast ends, it feels as though the food is just sitting on the top of my stomach. I feel the effects of it throughout the rest of the day. When lunch rolls around, I head to the break-room not wanting to add more food to what is already not digesting very fast in my stomach. Peanut Butter and Jelly is my typical lunch. On days like this, I have to force myself to eat the sandwich. Greg cuts it into quarters for me, and I try to make it through at least 3/4. By piece three I'm struggling to gag it down.

Some days I really just eat because I have to. Not because I want to, or because it tastes good, but because I have to in order to survive. I am grateful that I can still eat, and I'm definitely not complaining about that. It just gets hard sometimes.

As the day went on, my stomach was slowly settling. I couldn't just go home and lay in bed, I had to keep working. Plus, later that evening I had a Relief Society Activity I was in charge of. I still had to go help set up, followed by the activity, followed by cleanup.

I got to the church to help set up, and by set up, I mean do what I can and hope I'm not just in the way. It's hard to watch those around me do everything because I don't have the strength to set up the tables, or the energy to pull out chair after chair. They put me on things that I can do, like put the pictures in the frames. I got four/eight done in the time my friend got all 8 tables set up, by herself. I feel as though I'm in the way more than I'm helpful. It's hard. We ended up getting everything ready and the rest of the night went well.

A long day like this would make anyone tired, but by the end of the night I was exhausted. I hurt everywhere, hips, legs, feet, head, etc., was feeling nauseous from the very little salad I ate, and my body was just weak. It's not like I know that I can just go home and crash, because I don't know if I'll even able to sleep later, or how I will feel the next day. It's not like I can just sit at home if I'm not feeling well. I have to work. I have to keep moving. I don't have a choice.

A "typical" Wednesday for me is definitely not a typical Wednesday.

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 have no problem with it. Me...oh boy. Trying to get the slip right under the skirt was a nightmare, also made me a few minutes late to work.


Apparently Physical Therapy is only effective if you do the stretches on your own at home. I don't know why I have absolutely no motivation to do it. I just don't. I really need to work on it, because I'm a weak soul. and I hate it!


I had a pulmonary function test the beginning of April. I had a 6 minute walk, followed by the breathing test. If you recall, the last time I tried a PFT, I was unable to do it due to my inability to put my mouth around the mouthpiece. I struggle a little this time, but was able to do it! Woot woot! My results have improved a little since last time, which I blame on the Cellcept I'm on as it is used in patients with lung problems. I was happy to be able to do it, and happy for the improved results. Where I live in this body, it's sometimes hard for me to see any improvements, so when we can have some numbers to go off of, it can be helpful (though I realize it's not always accurate). But, yay! I was mostly glad I was finally able to do it.


So, I am going to end now as I need to get ready for work. I know. I suck at this blogging business! :)

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. Well, actually all of them have been. I talked to the physical therapist for about 5 minutes, then he went and got a list of stretches for me to do, then told me to come back in about 2 weeks. Can I just say that those stretches totally suck. They aren’t even that hard, which is probably why I find them to be even more frustrating. One of them is to sit on the chair and bend over as far as I can. I’m quite pathetic at it. Very much so.






After the first two weeks I had another PT appointment. It literally lasted about 3 minutes. I went in, the physical therapist asked me if I felt the stretches were working, I said no, and he said, “Okay, we’ll have you keep doing them, and check back in another two weeks.” Not even kidding. That was that. So I kept doing them. Didn’t see a whole lot of improvement. When I went back, he gave me some strengthening exercises to do. They, again, are pretty simple, yet they totally kick my butt. I’ve done such a terrible job of doing them. I’ve been okay doing my arm ones, but my leg ones, not as much. It’s just hard to keep going when you’re not seeing any improvement. But I do it to do it. We’ll see if it pays off.



Other than that, nothing else has been going on. I had an EKG on the 19th of December to make sure my heart is still functioning properly, as one of the medications I am on can mess with my heart. I also met with Dr. Garg, my GI to follow-up on said medication (Domperidone). It was another quick and short appointment. I was kind of annoyed because when we got there, the nurse asks, “So what is the reason for this appointment?” Umm, well you guys called me, so why don’t you tell me. But Dr. Garg just asked me a few questions about the medication and swallowing.






It’s been quite an interesting experience. I really have a hard time deciphering how I feel. When people ask me how I feel, I don’t know how to answer. Like, how do I feel compared to when I was healthy? Or, how do I feel compared to this time last year? It’s a hard question to answer. I don’t know if some of the things I’m feeling are “normal” or are something to be concerned about. If I’m still able to perform my daily activities, I just chalk it up to a “scleroderma thing”. It’s never anything I feel to be life-threatening, of course, but when I read about others who go to different doctors for different things, I kind of wonder if I should be more concerned. But I’m not. I just go with the flow and take it.