Sclero-what?

So, I hate my teeth. For whatever reason I am the only one in my family who doesn't have naturally straight teeth (except Kennan, but he had braces, and now his teeth rock too.) I have always been a bit self-conscious about them, sometimes more than others, but I still try not to hide my smile. I always get annoyed when I hear anyone talk about girls and how cute they are, except for her teeth. Grr...Totally shallow. I mean, I have crappy teeth, but I'm pretty awesome, right? Since Scleroderma has caused my face to tighten, and once awesome lips to shrink, my teeth just seem to be even more pronounced when I smile or talk. Fabulous! The one area of my body I've been most self-conscious about is the one area that's really standing out. I know it sounds silly, but it's hard to talk sometimes because of the way my mouth has changed. It's crazy annoying, especially trying to say my B's, and since my name starts B, it sometimes comes out sounding like I say

Since the episode from my other post. Greg has decided that I really need to exercise and lift weights. He has been telling me this forever, but I just ignore him. I don't want to do it. I'm almost always tired, and I feel like I just don't have enough time. I just want to be lazy, plus, in reality, I'm not sure how much it will actually help. I decided to look online to see if I could find some stretches or something specifically for scleroderma patients. I found this one... Let's be honest...If I could do that, I wouldn't have any issues. A: I can't get on the floor, and B: there is no way that I would ever be able to lift my legs and balance. NO WAY! Obviously the people who wrote this have absolutely no idea what it's like to have scleroderma. To get myself "excited" about exercising, I created a chart for Greg and I to mark off what days we exercised, and what we did. I just need smiley face stickers to really make it fun! I r

Thursday was an interesting day. It started normal, me taking Greg to school by 8:00, chill at home for an hour, then eat breakfast. As I was finishing breakfast, I accidentally knocked my bowl of cereal on the floor. Thinking I'd be a good wife, I decided I would try to clean it up myself. I've learned that I can get to my knees by sliding off the couch, so I went to the living room and got on my knees. As I was walking on my knees towards the kitchen, I thought, "This will take forever. Why don't I just crawl?" So I lean forward to put my hands on the ground. Unfortunately, I have very little upper body strength, so instead of catching myself, my head just kept going and hit the ground. As soon as that happened, I said (out loud), "That was stupid Breanne." I stayed that way for a little while, with my butt in the air, head on the ground before trying to figure out a way to get up. I couldn't push myself into a crawling position, so I flattened

I don't know why I was so nervous for this morning, but I was. I woke up at 6:15 so we could get to the hospital by 7. We got there bright and early, checked in, then waited for the nurse to come get me and take me to the cath lab. The nurse, Rhonda, came and got me and took me back where I had to get undressed and put on the hospital gown. Then I sat on the bed and waited. She asked me a few questions, then tried to get an IV hooked up. She also had to draw some blood. Holy cow. I haven't had a needle hurt me so bad. After digging for a bit she got it enough to draw some blood, but it wasn't in well enough for the IV. One of the other nurses came over and he poked my other arm, which also hurt, but he was able to get it in fairly quickly. With my skin being so tight, and my veins small, it's a little bit harder to do that kind of stuff. Dr. Saul, the doctor who would be performing the procedure came in and talked with me a little able the procedure. He was ve

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 pulmon

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,

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

I'm not going to lie. Part of me is still in denial about this disease. I still often wonder how I could really have such a debilitating disease, and other times I think that it's going to go away, and I'm going to back to 'normal,' whatever that is. As I am slowly learning to accept the fact that I do have this disease, I want to share more and more about it and inform others about it. It's quite amazing to me how many people have never heard of Scleroderma. Let's face it, I didn't know it existed either. I want to really share awareness and help raise money for research in hopes that someday we'll be able to find a cure. June has been Scleroderma Awareness month, and I did a poor job of spreading the word, but today is World Scleroderma Awareness Day, so I'm making it a priority to not only "rock teal" (the color for Scleroderma), but to also spread awareness via facebook, instagram, and through my blog. Because, by now, you proba

The last few weeks have been a bit rough. It's kind of ironic because I was  going to do a post about my mantra, "This is gonna be the best day of my life," and how wonderful everything has been, and then...well, it hasn't exactly been the "best day of my life." Remember how, when you were younger, and you could eat whatever the heck you wanted, as much as you wanted, and it had no affect on you whatsoever? Whether making you gain weight, lose weight, feel sick, it just really had no affect. My junior and senior years of high school, my favorite snack was chocolate milk and Funyuns. I could eat that and be totally fine, and not gain an ounce. Of course it helped that I was super active in athletics, but I very rarely got sick. I could eat loads of ice cream, seriously, bowl after bowl after bowl. It was awesome. Of course when you quit being so active, when you try to do those same things, it has a different affect on you. For the first 7 years after Gre