When I was in high school, shortly before my 16th birthday I got tonsillitis. I was given some medicine, which resulted in me breaking out in hives. This was right before we were headed to UVSC for a team volleyball camp, so I got to go with a swollen face, and red splotches all over my body. It was miserable, to say the least. Plus, the guy that I liked was also down there for a wrestling tournament, and he stopped by to watch us. Talk about embarrassing! (Well, to a 16 year old anyway! ;)

Fast forward to shortly before Christmas. I went in for my regular check-up, and I told Dr. Walker about being bloated all the time. He recommended going on an antibiotic to clear out any bacteria that may be lingering in my stomach. He prescribed Amoxicillin, which I started taken. I made it about 3 days before my face started burning. I got up for church that next Sunday morning to a bright red, swollen face.


It was awesome.

Not.

My face eventually cleared up, but then the hives spread to the rest of my body. I called my doctor, and he prescribed me a different, more expensive antibiotic.

The hives, however, took their sweet time getting out of my system. Enjoy the next few pictures.


 


They were awfully itchy. I couldn't sleep at night because they itched so bad. I could not stop. It was not fun. It went all through Christmas, so that was fun too! They eventually subsided, and now Greg teases me about not telling doctors about things I'm allergic to, but how was I to know? It was like 13 years ago!

Side note: Around this time, (Christmas) I was also surprised with a package of socks in the mail. At my December appointment, Dr. Walker got made at me because my toes were purple. (I was wearing socks!) So this package was a nice surprise, with some super cute socks. Thanks to whoever sent them! You pretty much rock!

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.

After the success we had {last year} we were excited for the 2015 race. I can't even begin to express my gratitude for the love and support that has been shown towards me and my family over the last few years. I love seeing family get together, and people gather for a good cause.

This year (and by this year, I actually mean last year...2015) the race was held in SLC. It was a beautiful location, and the weather, though a bit chilly, was still beautiful. Greg and I got up bright and early, and headed on our way.



I seriously was so blessed to have so many people come out and support. I had my friend Jenna come all the way from Rock Springs with her new baby to walk with us, as well as Buck & Aub, and then tons of family. It was so wonderful to see everyone!

We had shirts made again, and it was awesome seeing everyone wear them.












Team Bre also won for most participation & donations! Thanks everyone. I love you all, and I'm glad that you're all so willing to help spread the word and awareness about Scleroderma.

(Much better than eating a jar of peanut butter)

...an update!

I know, it's been so long, you probably figured I was healed of all my Scleroderma...wrong! I have had many MANY thoughts over the last almost year, but have just not written stuff down. I will try to do better though, because before you know it, an entire year will slip by.

And here we are! Trying to decide where to start....

Here goes...

So I think the last real update I had just started going to physical therapy. What a joke. I know I need to do a lot of the stretches on my own, but literally, my appointments were about 5 minutes. I could have googled stretches on the internet, and not had to pay hundreds of dollars. (Actually I don't think they charged me for some of the appointments, but still!)

The stretches kill me, and I have a terrible attitude about them (even still). I just don't feel like they are very effective, and maybe part of it is just me wishing to see results within the first couple of days, but I don't. It just gets frustrating, and then I quit doing it. No wonder I'm not any better off than where I was a year ago!

One thing the PT did mention was to get a stationary bike. I figure that's something I can do with little exertion, but still get some exercise in. Unfortunately, I have a hard time getting onto the bike we ordered, so Greg has to help me.I was kind of hoping for something that I could do if I were home alone and had nothing better to do. Oh well. Such is life I suppose.


I felt all sorts of motivation a couple of weeks ago, so I rode my bike one day, and walked for 20 minutes the next. It killed me for the rest of the week. I'm telling you, it's a struggle between, should I exercise and feel like crap, or not exercise and feel like crap. Let's me honest, the latter wins 99% of the time.

I really need to do it, I know! I just need to. Maybe this summer will be the start of something new...After May is over of course. Oh, and then there's that week in June....kidding, but that's basically my mindset.

If I did have my strength and energy and flexibility back, it would help in so many ways. For one, I wouldn't have little 18-month olds knock me over. Funny story. My good friend Melanie WAS (she has since moved...jerk!) in nursery, and they needed someone to sub. I volunteered, so I headed down to hang out with her and the kids. There was one girl who wanted me to pick her up. so I tried. I was able to lift her to stand on the table so I could adjust, well, when I picked her up, I lost my balance, and basically slid down the wall, resulting in no injury to her, but some minor flesh wounds to myself. It was kind of funny though, when I was on the ground, the little girl was perfectly on my chest just looking down at me. Embarrassing? a little, considering there were 2 additional people in the room, but mostly frustrating. Let's just say I didn't volunteer again.


I stopped at the hospital (ironically) to pick up some medicine, and I forgot I had my work keys in my lap. When I got out of the car, they fell to the ground. I was all by myself, and I can't bend over and pick things up. So, I did what I could. I used one foot to balance the keys on my other foot, opened my car door, lifted my foot with the keys and kicked them in. I am a genius. Just wish I didn't have to be!

I also wouldn't have any issues applying for this teller position at a financial institution down in California (Yes, I looked!)

Luckily, I've been at my job long enough that if it comes to stooping, kneeling, crouching, or crawling, I just boss my newbie co-workers, and make them do it.

Moral of the story: How do I stay motivated to work on something that I feel no progression being made? Any thoughts, tips, suggestions? Any want to come be my personal trainer? I will pay you in friendship.

Also, I know that is not technically a "moral of the story". I struggle with my words sometimes.

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.