So, Monday morning finally rolled around, and my rheumy called me first thing in the morning. He told me that my echo hadn't changed much from last year, but there was still a bit of high pressure in one of my arteries. Because pulmonary arterial hypertension (PAH) is somewhat common, and a concern among scleroderma patients, he suggested that I have a right heart catheterization done. Then we could see if I need to go on medicine to reduce the high pressure, or just keep testing with echos every few months.

PAH is basically high blood pressure in the pulmonary artery, the blood vessel that carries blood from the heart to the lungs.It occurs when most of the very small arteries throughout the lungs narrow, which increases the resistance to blood flow through the lungs, which results in the heart having to work harder.

For a right heart cath they put a catheter in through your femoral artery (or through your neck) to the right side of the heart and passes it into the pulmonary artery so that it can test the pressure. It's weird to me to think about. Kind of crazy where we've gotten with medical sciences these days. I'm a bit nervous for it. Hopefully they can get some answers, and hopefully it goes well. I'll post more once it's done and over. Wish me luck!

Well, I had a big nice post put together and then it got deleted. Hate when that happens. Let's see if I can put it all together again.


I had a rheumy appointment on the 3rd. It was pretty basic. He asked how my stomach was feeling to which I replied fine. I mentioned that I have a spot on my leg that goes numb when I'm trying to sleep at night. It will burn and tingle and just go numb. I hate it. It happens when it gets too cold and when I get too hot. It doesn't make sense. My rheumy said that it sounded like meralgia paresthetica. He said he sees it a lot in overweight people, and tells them to wear looser clothes and lose weight. Since those aren't really options for me, he wasn't exactly sure what to do. It really isn't a big deal. Just another annoyance I have to deal with.That was about it, though.


Then it was off to run some blood tests and get a chest X-ray to check out my lungs (which came back normal.)


Because Scleroderma, and especially the form that I have, can affect the internals, it's important to run tests to check my internal organs every so often. Since our insurance is changing in September and our deductible is going up quite a bit, we also scheduled an echo-cardiogram to check on my heart.


Before I got to that, I had another fall. This time I was in my house at least, but it still made me so mad. I had just gotten done eating and went to set my tray on the table, when Is stubbed my dang toe on the table leg. I tried to recover and ended up going down and hitting the back of my head instead. It hurt really bad, and I had a massive goose egg on the back of my head. It really sucked.

I had to go get something at the Budge, so when we got out of our car, there was a shuttle waiting, so we decided to take a ride so I wouldn't have to walk a ways so soon after hitting my head. It was awesome.



I had my echo done that next Thursday, the 10th. It was super exciting. It was a lot better than the last one. I didn't freeze, and my hips weren't nearly as sore. It was kind of ironic because last time I had an echo done, I fell just a few days before. I don't recommend it. But the echo itself wasn't too bad.



I still haven't heard back on the results. Everything has always been normal, so I just figured that they'd call me if there was something wrong. Well, yesterday when I was at work, I got a call from my rheumy himself. Not one of his nurses. He called me and left a message saying he had the results from the echo and that he'd call me back. I'm probably freaking out over nothing, but I can't help it. I was pretty stressed waiting for him to call me, and he didn't, so I'm still slightly freaking out. It's probably okay and I am just worrying about nothing. All I know is that Monday can't come soon enough.


I finally got to start on my new medicine to help with my GI issues. Apparently I had to sign a consent form, but they took forever to get back to me about the EKG, then I could just not get into the office on time, or they wouldn't be there. It was quite a pain. Finally when I went in for my echo I was able to sign the form and started the new medicine. I don't feel like its as effective as the reglan, but I haven't had any major issues, so I shouldn't complain too much. Because domperidone can do damage to the heart, I had to get another EKG.




Of course I still haven't heard anything from them. For some reason m GI doc doesn't give me results. I guess I'll wait and see what my rheumy has to say about the echo first, then I'll see if I need to worry about the EKG.


I don't have any appointments too soon. My next is with my PCP on August 11. They upped my dose of fluoxetine, because apparently not showing emotion is bad, and showing emotion is worse. So he just wanted to follow up with me there. I have a few concerns that I may address with him. Its just hard to know whats important and whats not. I mean, in reality I could probably find something new to be concerned about each day, but I don't want to be the one patient who calls about every little thing. I guess that's what Google is for. Self-diagnosing is always a good idea, right?

Last weekend was a great experience. It was the Northern Utah: Stepping Out to Cure Scleroderma 5K walk. I posted information about it in this blog post if you''d like to read more about it.

I know I've mentioned this before, but as I'm slowly coming to realize that this disease is something I'm going to have to live with for the rest of my life, I've decided that I'm going to make the best of it and spread as much awareness about it as possible, and if we can raise money for research, I'll definitely do it.

I had looked and looked to see if there was anything going on close to me, and when I found the 5K in Syracuse, UT, I really wanted to do it. I jokingly posted on facebook to see if anyone wanted to join me, and I got some responses like, "I wish I could, but I'd love to donate." Awesome. People are so awesome! Then I saw my mom a few days later and she said that my Aunt Laurel had suggested that we all do it, and get T-shirts and everything. So, we started posting on facebook and really promoting this thing, seeing if people wanted to buy t-shirts, with the proceeds going to the Scleroderma Foundation. The response we got was unbelievable. People I didn't even know were purchasing shirts, and signing up to run/walk for Scleroderma. It was amazing. I think we sold over 100 shirts. Again, people are awesome!

Greg and I woke up super early on Saturday, June 28, to head down to Syracuse. And by early, I mean 4:30 am! But I was so excited, I didn't even care.


When we got there, there really weren't that many people. I saw a few Cokeville people, so I went over to say hi. Then people started showing up. They just kept coming. It was so fun to see people in their "Team Bre" t-shirts. Next year I'm doing bright colored shirts. That way we'll really stand out!

 
I walked, because obviously I can't run, and it was fun. There was a big group of us that walked, and a big group that ran. It was great to see so many people out, and to cheer them on as they crossed the finish line. I was so touched by the people that came. I was hoping to meet some other Scleroderma sufferers, but all of us kind of stayed with our own groups. Next year will be different....it just will be.


I did get to meet one guy who has Scleroderma, and a lady who's mom had it, but has since passed away. The guy was so nice, and was so positive. It was really great meeting him. I'm looking forward to seeing him next year. The lady I met was also super sweet and nice, and is actually from Logan. It as kind of funny because as we were walking (we started first, but slowly got passed and ended up being last!), Greg says, "That's _______. She's one of my 6th graders." Sure enough, it was, and she was there walking in honor of her Grandma, who was the mom of the lady that I met. It's just amazing to see people who have been so affected by this disease, whether themselves, or someone they love. They are so sensitive and empathetic, and it's just wonderful. I've found this lady on Instagram, and I love her comments she leaves. Whether it's things her mom did or ways they had to help her, or just saying that she's thinking of me. I really can't explain the feeling. It's quite amazing. I was so grateful to meet these two wonderful people.

It really was an amazing experience. I wish I were better with words, and putting my thoughts down on paper. Just seeing the support was wonderful. There were a few groups that were walking in memory of loved ones lost, and it just made me so sad, but for them to gather together in support of them and others was just so touching. This disease can be so devastating, but I truly believe it only makes people stronger.

Here are a lot of pictures of the people who came to support me and other Scleroderma sufferers.

Me & the Tyler family. Greg & I have been in their ward for the past 9 years. I have been the Young Women's leader of their three girls, Sarah, Sam, and Abbie. I have watched them grow up and turn into such beautiful young women. I love this family. The fact that they woke up so early to join us was so touching. Thank you Tylers! (And their uncle who I've never met, but came out to run! Thank you!)

Me with Janessa (left) and Jan (right) Moody. Jan was one of my young women leaders many years ago. She is so fun and happy and positive. I have always looked up to her. Thanks for coming out!


This Teichert family. I just love all of them. When I was younger, both my family and theirs would go on family camping trips together. Both families had kids close in age, so we had a LOT of fun, and have made some amazing memories.

Olivia is quite a bit younger than I am, but I love her to death. She is so pretty and happy, and just a great example to me. You have to read her blog. She's so cute!

Coach Teichert....I can't say enough about this man. Not only have I known him as a great father figure (from going on camping trips), but he has been a great coach in both basketball and track. Yes, he pushed me and sometimes I hated him, but in the end, I only gained more and more respect for him. He only wanted me to succeed, and I wish I had listened to him more, and pushed myself more, but I ultimately learned hard work from him. I love Coach Teichert. I appreciate him coming out and running and supporting me. I have to admit, I really wanted to go on the street and yell splits out to him. Grateful for his example, and for the years he put up with me as a player.

While Olivia was a bit younger, Taffy was a bit older than me. I didn't know her really well growing up, but over the past few years, from reading her blog and being friends with her on facebook, I have come to really admire her. She is a hard worker, and a great mother. Plus I've been so touched by her and her husband's example of a loving, respectful, caring marriage. Thanks for your great example Taffy.

Clyda is another great example of a hard working mother. I have always looked up to her, and love her personality. She is a beautiful woman, and I am so blessed from having known her.

Thanks so much Teichert's for coming out to support me!

Coach Toomer & Karla. Coach was my volleyball and track coach. He also taught me the value of hard work. I'm sure I frustrated the heck out of him, and he probably swore quite a bit because of me, but I was blessed to have such a great Coach who pushed me and wanted me to succeed.

His wife, Karla, was one of my Young Women leaders as well. She was a great example, and taught me to be kind a respectful. I also frustrated the heck out of her, I'm sure, as I have a memory of being dropped off about a mile out of town after girls camp....haha. I'll never forget the lesson that she taught me there.

Thank you both for coming out. I appreciate your support. The fact that you were willing to sleep in your car in the Wal-Mart parking lot, and donating the money saved by not staying in a motel, means so much!

These grumpy little stinkers are my adroable niece and nephews. Aidan, Lilli, Alex and Liam. They got up a little too early, and it took quite a bit of convincing to get them in this picture with me, but I love them all so dang much!

Uncle Robert & Aunt Gayle. They are definitely in my top ten of Aunts & Uncles (if I had a list!) Thank you for coming out, and for waking up early! Love you guys.

As I mentioned above, there were some people who donated and bought shirts that I didn't even know. These are two of them. Tammy Plowman (right) is a friend of my mom's, and her mother is on the left. I appreciate the kindness of people who don't even know me for their support.

This is a funny picture to me. We've got Kenny & Andra Petersen on the left, Aubrey Birch is one of my friends from High School, and also Andra's little sister, then Ashbee Petersen Thompson on the far right is my sister-in law, Aubrey's niece, and Andra's daughter. We're all related, haha. But Andra was one of my favorite young women leaders, and she also was the director of our high school musicals. She is so much fun, and her confidence rocks. I have ALWAYS admired her for that. She is such a beautiful lady, inside and out, and I am so grateful that we are family now! :)

Aubrey has been my friend since we were really little. She is always so kind, and happy, and bubbly. I also admired her for her confidence and for just letting things roll off her shoulders. It was rare to see her upset, she just had a great attitude. I love you Aubs!

Ashbee is my newest sister, and it's kind of weird to call her that. (in a good way!) It's still a bit crazy to believe she married my brother, but I also love her so much. Again, her confidence, and her beautiful personality, it's hard to not love her. I have always thought she was such a cute girl, and I'm glad that she is truly part of my family!

Of course, there are my parents. They have been such a great support to me over the years. They did a lot to get ready for this walk, and organized the selling of the t-shirts. I love my parents, and I know I don't show that enough, but I was really grateful that they were there! Love you guys!!

And then there is my Davies family! I was SOOOO grateful to see them all there to support me. We don't get together near enough, so it was fun seeing them.

Mom, Laurel, Luke, Larry, Pat, Hunter, Kathy, Ethan, Emily, Heather, me, Haley, Cassidy & Cassidy's boyfriend (I think! lol)

Then there were the people that weren't able to make it to the walk that still showed their support.
My in-laws are spread out all over. Virginia, Utah, Wyoming, Arizona, and Vegas. I love being married into this family. I love them all, and appreciate their support through this!

Tyson Teichert - Texas - High School friend, and fellow Distance Crew member (also part of the wonderful Teichert family I mentiond above)

Tessa Teichert - Alaska - I love Tessa. She is the happiest, sweetest, cutest girl ever...also part of that family!

Aunt Amanda - Wyoming - Ran 9+ miles the day of the race. Thank you!

Buck Boyer - Utah - Best friend from HS. Married to my friend Aubrey.

Violet Teichert - opposite side of Wyoming - Another wonderful friend, teammate, and Teichert!

I am blessed people! I will share more pictures eventually, but I think this post is long enough. I really REALLY appreciate everyone who showed up to support me. I am already looking foward to next year...SERIOUSLY. I can't wait!

We placed 2nd in raising the most money. We raised over $3000! Next year my goal is $5000. I love the support. Spread the word!!!!!