So, if you're a friend of mine on facebook, I apologize for the Scleroderma overload, but I'm not done yet. Here is my blog plug for the upcoming Northern Utah 2014 - Stepping Out to Cure Scleroderma 5K Walk/Run.

Since being diagnosed with Scleroderma, I've decided that I want to do something at least once a year to raise money and awareness for it. I had no idea what I was going to do, and thoughts ran through my mind like hosting a 5K, or a volleyball tournament, but I had no idea how that would work. Luckily, in searching the internet, I found that there was already a fundraiser set up in Northern Utah. Perfect! Now I didn't have to stress about setting something up myself (though I do think it would be fun to put together a volleyball tournament or something!)

I had posted on facebook if any one wanted to do it with me, and got a few responses, but then when I was talking to my mom at Kennan's track me, she said she had spoken to my Aunt Laurel, and Laurel said that we should do it...with t-shirts and everything.

So here's what we've got planned: 

We are inviting anyone who is interested to join us in support of myself and others who are suffering with this disease. You can do this in any of the following ways.

Join us as we walk/run for the Northern Utah 2014 - Stepping Out to Cure Scleroderma 5K. Entry fee is $20 ($25 if you register the day of). You can choose to either run the 5K or do a 1 mile walk (which is what I'll be doing). Register by going {HERE}, clicking on "I want to attend the event and register," then click on "join a team" to join my team. Search for my team which is:

Sclero-what?

Question mark and all. You should see my team show up with me as the captain. If you don't, let me know and I'll try to walk you through it again.

We will also be having team shirts, which are $10 (separate from the registration fee). You don't have to purchase one if you are running/walking, these are just for fun and so "Team Bre" can stand out!

If you are unable to attend the walk/run, but would still like to donate directly to the Scleroderma Foundation on my behalf, you can go to my team page: http://scfo.convio.net/goto/sclero-what and click the "Support Scleroderma" button.

Or, you can just purchase a "Team Bre" t-shirt for $10, and all the proceeds will go to the Scleroderma Foundation.

If you want a specific size (adult or kids sizes), we need to know as soon as possible so we can get them ordered. You can either leave me a comment here, email me at bre11414@hotmail.com, or join my facebook event {HERE} and let me know there.


I really REALLY appreciate the love and support I've received so far. Special thanks to my mom for helping me organize this, and my aunt who kind of spurred this. Love you all!

I had my second PFT schedule for the 2nd of April. Greg was on his Spring Break, but I had to get off work a little early. When the nurse came in, she looked a bit surprised and said, "You're back already?" I was surprised she remembered me. I just told her that it had been about six months, so it was due.


Well, we get in there and she tries to use the oximeter, which of course doesn't work, then tries to use the ear clip which also doesn't read anything. That should have been the first clue for me of how things were going to go down. Well, she shows me the new machine they have and has me go in and sit on the chair. Knowing I was going to be there for a while, I asked her if I could grab my coat to sit on. It was a rock hard wood chair, and my butt just can't take that for long periods of time. Once we finally got that settled, I went to put my mouth on the mouthpiece. I don't even come close to fitting my mouth around it. So she grabs the one they use for kids. Well, my mouth doesn't fit around that one either. Of course not. And of course that is the smallest mouthpiece that they have, which actually surprises me because this is a test scleroderma patients do quite a bit, and I can't possibly be the only one who can't open my mouth....Right? Anyway, I started crying out of frustration, and the nurse was just a sweetheart. She kept saying things like, "I'm sorry you have to go through this," and just tried to make me feel better. She sent Dr. Walker a message letting him know I wasn't able to do the PFT, but I haven't heard from him about it, so it must not be too important.

After the nurse said, "Sorry you had to waste your time coming out here," we responded with, "Well, I already got work off, so it's okay." I was craving a seafood sub from Subway, so we went and got one, then Greg surprised me by taking me to Divergent.


Such a good movie! It could have followed the book a little better, but the main dude is might good looking, so I didn't mind too much.

Then we came out to this scene of snow. Despite not being able to do the PFT, it turned out to be a good day. We'll have to see what my doc says when I visit him next.

The same week I got shingles, I actually had my next appointment with Dr. Walker. By then I was feeling much better compared to the beginning of the week. When he walked in he said, "Really? Shingles?" I should have told him that I blamed him, but I didn't. We just talked for a little, then he had me hop up on that bed thing (seriously, is there a name for that thing?) while he did his exam. When he pulled up my pant leg and saw my shingles he just said, "Oh!" I started laughing and said, "Yeah, I know."

He then asked if I had questions. I asked him if this was a set-back in the progression the Cellcept had made, and he didn't seem to think so. I was taken off of the Cellcept by Dr. Carlson, and Dr. Walker just told me to wait until the sores had started scabbing over before going back on it. I have to admit, I was a bit afraid to go back on it because I don't want those dang shingles to come back. But he said that most people don't get them a second time, so here's crossing my fingers. He also lowered my dose of the Cellcept, so instead of six each day (or 3000 mg) he dropped me to five (or 2500 mg).

I did ask him how I compared to the other scleroderma patients he has seen, and he surprised me by telling me that I was on the more severe end. Of course, that has more to do with the type that I have than probably how I actually am. I also asked him if we found the Cellcept to work if it's something I would/could take for the rest of my life. He told me yes. Score! Looking forward to taking meds for the rest of my life.

One concern he did have was my lungs. Greg said that I wheeze at night, and I have been coughing a little bit more, so Dr. Walker scheduled another PFT for me. It is something that I'll be tested for about every 6 months or so anyway, just for  precautionary measures. Especially where the diffuse kind of scleroderma can get aggressive with the lungs, we need to keep an eye on the lungs. I seriously have been SO blessed to not have any lung issues. My heart breaks for those who have those issues. They are tough people for sure.

It was another good appointment, though. I told him that I forgot all the questions I had, though. Dang shingles.

He sent me down to get blood tests and a urine sample (which was fun, but I'll spare the details!) As the nurses poked me for the blood test I told them I had to take a picture. I think they think I'm a total weirdo, but oh well. Unfortunately, that arm stopped giving blood, so they had to use the other arm. They always have a hard time finding veins, and ones that will give blood. So I got poked twice that time. It wasn't really that bad. I've got tough skin...(Okay, bad joke!)


So I have been complaining about the size of the Cellcept, but the pill on the left is the antibiotic for the shingles. It makes the Cellcept (right) seem tiny.
Another appointment down. Next one is in July. Can't wait!

On Wednesday, March 19, as I was sitting in my manager's office for our morning meeting, I kept feeling this pain that would throb in my back, and send pain down to my knee. It hurt a little bit enough to make me uncomfortable, but not so bad that I couldn't tolerate it. I took some Tramadol and some Ibuprofen, which helped a little, but not much. Thursday the pain got worse. I was still able to work, but by the end of my shift, I was really uncomfortable. It just got worse that night.

Friday I stayed home and decided to call my doctor to see if I could come see him. By now the pain was quite intolerable. I wish I could explain it. It was like when my back would throb, it would send a shooting pain around the front of my thigh to the back. It was so painful, and nothing seemed to help. It would like pulsate, and I would freeze because it hurt so bad. I was able to go in and see Dr. Carlson that afternoon.


He asked me about the pain, then had me stand (which I could barely do) and he pushed down my back. It hurt more when he pushed on my lower back, so he thought it was probably my sciatic nerve. He gave me some medicine and pain killers to try and help, as well as a shot in the butt. (That was a first, and was quite painful). He sent me home with instructions to call him Monday if I didn't feel better.


That night as I was bathing, my knee was stinging quite bad. When I got out of the tub, and ran to the bedroom to lay down, I asked Greg if I had cuts on my knee. He said it looked red, so I thought it was razor burn or something like that. Well, the pain got worse and I was basically bed ridden. It hurt so much to get out of bed and try to walk. Eating was hard, and even going to the bathroom was painful. I just really couldn't find relief.

As the weekend went on, the rash got worse. I started getting blistery things on my knee and up my thigh. They didn't hurt necessarily, just the other pain shooting through my thigh. I thought they might be hives. Oh joy.

Monday came and I stayed home again. The pain was so bad. I may just have been being a baby, but it really was bad. I called my doctor and told them the pain wasn't getting better, and that I had developed a rash that I  thought was maybe hives. The lady I spoke with said she would send Dr. Carlson a message and see what he wanted to do.

When she called back, she said that he wanted me to get an X-ray (still thinking it was my sciatic nerve), and go to physical therapy. She then asked me to describe the rash, so I did. A little while later she called back and said he wanted to see me.


I'm not even kidding, the pain was so bad I could barely walk. It was hard to breathe and hard to talk too. Ah, it makes me want to cry thinking about it. Greg came and got me and took me to the clinic. He checked me in, and when the nurse came to get me, Greg said, "It might be easier if we get a wheelchair." That's how bad it was. I went and had my back X-rayed, then went to see Dr. Carlson. As soon as he saw the rash he said, "I'm pretty sure that's shingles." Awesome. He asked me more questions and checked them out a bit more, then decided on the meds I'd be taking. Because I'm on an immune suppressor for the Scleroderma, I'm more susceptible to getting shingles (along with cancer, dying, etc.) It really sucks because I knew that all along, but I just figured it would be like a cold, or the flu, not something like shingles. Needless to say, it totally threw me for a loop. He put me on Lyrica to help with the nerve pain, told me to start out on it slowly, and build up until the pain was gone.

Monday night was the worst. I was in so much pain. The throbbing just would not stop, and nothing I did even helped. It sucked. Greg even slept in the living room I was making my pain known. I stayed home the next day as well. There was no way I was going to be able to work. I got up early with Greg and bathed (which was the little relief I received), then ran back to bed where I stayed basically all day.


My mom was in town and had some stuff for me, so when she texted me and asked if she could stop by, I said, "Yes, as long as you don't care that I'm not dressed." I did wrap a blanket around me though. I did feel a little better, and by a little I mean I was able to walk to the kitchen and sit down. It was still hard to talk, but Mom stayed for a little while, then I went back to my bedroom where Mom rubbed my back for a while. It was really great. She's the best. Thanks mom.

The rest of the week slowly got better. My days consisted of getting up early, bathing, going back to bed, trying to sleep, playing on my phone, eventually watching Pretty Little Liars on Netflix, eating as much as I could, bathing again at night, and then sleeping.

Here's a little timeline of how pretty the shingle were.


It was so incredibly frustrating to get shingles. I've been really trying hard not to complain about my situation, but it was a really hard week, and has been since. I just feel like I was going along, doing just fine, then all of a sudden, I've got yet another thing to deal with and fight through. I know it's all part of my mortal experience, and that I'm not alone in this. It can be hard sometimes to remember that your Heavenly Father is there and he understands what I'm going through, and He hurts that I hurt. I'm guilty of forgetting that and feeling like I'm alone. It's just been hard. The shingles themselves (the sores) haven't been that bad, the nerve pain totally sucked, and just the emotional toll that it's taken on me has been really hard.

But, I'm not writing this to get sympathy or for you to feel bad for me. I am doing fine. I will be okay. I only write it so that I can remember the feelings I had, and how eventually, the physical pain will go away, maybe the emotional pain will stick around for a while, but it will all be okay. My Heavenly Father knows that I'm struggling and can and will give me comfort when that emotional pain won't go away.

Right now the shingles have almost completely disappeared. I still have a few scabs, and some scars, but they're healing well. The nerve pain has almost completely disappeared as well. I have a little pain still in my back and hip, but it's tolerable, and that's all I can ask for. Like I said, it really threw me for a loop, and I'm still working my way back, but seriously. I'm doing well. I've been so incredibly blessed the last month, and I'm lucky it was just shingles, and not something worse. Plus, I got a week off of work, and got an entire season of Pretty Little Liars in. 

Just a warning about this post, the pictures can be kind gross, so if you don't want to see, then don't continue to read.

First a little medical information according to the Raynaud's & Scleroderma Association:

"It is unusual to develop digital ulcers in Primary Raynaud's but in secondary Raynaud's, (associated with scleroderma), repeated episodes of spasm of the fingers can cause pitted fingertip scars, and in some people this results in fingertip ulcers."

I guess that should have been my first clue, but I ignored it. The sores have got to be the absolute worst part about the Raynauds/Scleroderma. There is no possible way to describe how painful they can be. I got my very first sore on my middle finger in February 2012, and I've gottem maybe 3-4 bad ones since. Even without the sores, when they get cold, my fingertips get really sore and tender to the touch. The edges of my fingernails get cracked and are painful, but the ulcers by far top off the pain. I can tell when they're developing almost immediately because that finger is extremely tender, plus I can usually see a small spot on my finger that looks like puss or something nasty like that. At my last appointment with Dr. Walker I told him I thought I was getting a sore, and when he asked to look at it, he said, "Yep, it looks like it." I asked him what to do about it, because I would normally try to squeeze the junk out, but he told me not to do that. Bummer, since I have to pick at everything. Needless to say, I listened to him, and didn't mess it. It just got bigger and bigger. If it gets cold, and I happen to bump it, it is so incredibly painful. Oh so painful.

Anyway, here's a picture sequence of this lovely process.

"The best way to treat digital ulcers is to prevent them from occurring in the first place."

Right....And here is a little more:

"If you haven’t experienced these ulcers you can have no idea of the pain involved. Some ulcers occur in scleroderma patients for no apparent reasons whereas in people with calcinosis they are caused by calcium deposits breaking through the surface of the skin. You can bet that if you knock your hand it will be the finger with the ulcer on which gets the hit! the ulcers are always more painful when the hands are cold as it seems to get to the root of the ulcer and magnifies the pain. Best advice is early intervention as soon as an ulcer starts and to hang in there. They will heal eventually but it may take months or even years! "

I didn't have my next appointment until January 22. I honestly didn't notice much of a difference between the two appointments, health wise. Everything seemed a little worse, but not too huge of a difference. the biggest thing was my weight. The first thing my doctor said to me was, "You're still losing weight." Then proceeded to ask why. I told him it's just a hassle to eat. It really is. I hate it. It takes forever to eat anything, and nothing really sounds good, so I just don't eat. I've dropped below 100 lbs, which is clearly unhealthy, but I really just have a hard time eating. Greg has been so good to try to get me to eat more, and I do try, but it's just so hard. (I'm a total baby, I know, but seriously...give me a break!)

After that fun discussion, and him telling me I needed to eat more calories, he asked a few more questions and then did a quick exam. I asked him about my hands as they continue to tighten. I told him that my right pinky no longer works. I can bend it, but I can't lift it. It just kind of sits there. I told him I was scared that that was going to happen to my other fingers, and he told me the best thing was to just keep exercising my fingers. He said that the more we can prevent now, the better it will be in the long run. He said he could send me to physical therapy, but at this point, if there's stuff I can be doing at home, then I'd rather do that. Of course, I've been too lazy to do it. That needs to change.

The more we talked, the more I can to a realization that this isn't going to go away. Since the beginning I also had that hope that it was going to go away, I just needed time. But even though this was the best appointment that I'd had, I left feeling a bit uneasy. He offered to send a referral down to the U of U if I wanted a second opinion, but honestly, I trust him. I feel like he is giving me the best treatment. Now, of course, if things change drastically, I might consider it. I don't know. At this point, maybe I'm still in a bit of denial about this whole disease. Like I said though, I'm slowly coming to the realization that this thing is real, and I'm going to have to deal with it forever. Oh joy!

At work, I generally always wear gloves. Especially in the colder weather. There is not a time when I don't. My hands would just freeze and stop working. I get a lot of questions, and I never really know how to answer. I typically answer with quick replies and hope they don't ask more questions. Depending on how they ask their question also depends on how I respond.

"Why are you wearing gloves?" -- My hands are cold, is usually the easiest question to answer.
"Is it really that cold?" -- No, I just feel like wearing gloves for fun. This one I tend to get a bit snippy with, because yes, it really is that cold. Why else would I wear gloves? (I usually just say yes and move on)
"Do you have carpal tunnel?" -- No, my hands are just cold
"Do you have arthritis?" -- Kind of, a form of it, I guess, typically followed by, "You're too young for arthritis." -- Yes, yes I am.

For a long time I just would use the, "my hands are just cold" as an excuse. There are a few members who know what's going on with me, but most just drop it after I say that. I really just don't know how to answer. If I say I have Scleroderma, they're going to want to know what it is, followed by more questions, which I guess isn't a bad thing, it could raise more awareness, but I just don't want people to feel bad for me or ask a lot of questions.

November 29, I had a lady come into the credit union. I sighed as she asked the purpose of the gloves. I told her because my hands go numb if they get too cold. She asked if I had raynaud's, to which I replied, "Yeah, among other things." She then asked, "Do you have Scleroderma?" I'm sure the look on my face was that of utter surprise. No one knows what that is, let alone one of the few people who came into the credit union that day. I told her I did, and then she said, "My mama had Scleroderma too."

What are the chances? I just couldn't believe it. I wasn't going to greet her, either. I was going to let the other teller help her. It was crazy that this lady had an understanding of what I was going through.

We talked for some time about it, and it was just amazing to have another actual person in front of me who knew about Scleroderma. Just crazy. It made me so excited to talk to her. I wanted to ask her all sorts of questions, but where I was at work, I didn't have that chance. She told me she had written a book about her mom, and an experience that she had when her mother passed away, and then said she had one in her car. She went out and got it, then wrote me a little note on the inside.

It was so crazy to be able to talk with her. I know the Lord sends people our way when we need them. Whether it's someone who has experienced what you have, or has known someone who has, or who just needs to be there to brighten your day. I needed to see that lady. I needed to talk to her, and I needed that book.

I started reading it that night, and made it about half way through, then put it down and haven't finished it since. It just got so crazy being around Christmas that I kind of forgot about it. I'll have to get it out and finish it up. But it was a really great experience to be able to speak with her. Small world for sure.
I did promise her I'd let me friends and family know about it as well. I believe she said a portion of the book goes toward Scleroderma research, but her website is: http://www.bycaramarie.com/ and the book is called, "A Butterfly's Song: Watching Mama Fly Away."