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.

A couple of weeks ago I was talking to my friend, and I realized that it has been 2 years since this all started. So crazy!

Anyway 2013 was a very interesting year. It started out with the freezing cold temperatures. I think in all the years that I've been here in Logan, I've never experienced such freezing temps. You'd think where I'm from Wyoming, I'd basically be immune to that, but no way. It sucked. It sucked pretty bad too because in the mornings at work I have to go to the ATM and get the deposits from the day before. Even just being out there for that five minutes just about killed me! My hands would just hurt, and it would take forever for them to thaw out and become somewhat useable again.

So there was that. The pain also continued. My joints became more and more stiff, and my fingers became swollen and more stiff as well. I also noticed a decline in what I was able to do for myself. At the beginning of the year I was having a bit of trouble reaching down and putting on my socks and shoes, or even clipping my toe nails or shaving my legs. I was able to do it, but it was hard. It was like I had no flexibility. My hips also became stiff and definitely was losing flexibility there.

During this time too, beyond the struggles with whatever it was that I had, I was also extremely stressed and frustrated and really needed my husband to get a job. Obviously this combined with my health was not a good combination, and it definitely made things harder and worse.

As the year went on, I found that I was soon not even able to put my socks and shoes on anymore. I had trouble getting in and out of bed, and once I was in bed, trying to roll over was a joke. I could definitely not roll onto my stomach, and even just rolling to the right was a struggle. I had a hard time lifting my head, and my neck was always sore. I was losing movement in my upper body as well. I couldn't reach much above my head at all, and I can't reach behind me either. Part of that is due to a sharp shooting pain that I get in my rib. If I tried to stretch too far, my rib would remind me that that was not a wise idea. It was so weird, because it never hurt to the touch, just every now and then when I would stretch. I had a very difficult time picking things up off the ground. If I dropped any money at work, I'd have to use my feet to get it to stick up far enough that I could bend over and pick it up. I had to be leaning against something when I did it though. It wasn't fun.

Sleeping was a struggle, due to not being able to roll over, plus my acid reflux was acting up something awful. It was nasty business. And of course lack of sleep never helps anyway.

I was also losing muscle in my upper body. I wish I could take a picture of what my shoulders look like, but that would be inappropriate since I'd have to take my shirt off. I was also getting super weak and tired really fast, and I lost more weight. Greg was good to get me out walking everyday, but I could barely make it around our tiny block before I would get too tired, or my hips/knees/legs/arms would hurt. It really sucked because I was so ready to be done with it all. I had dealt with it for over a year already, I was ready to feel better.

I had quite a few people approach me and ask why I hadn't seen a doctor, or if we needed assistance. Sure, free health insurance would have been awesome, but since that wasn't going to happen, I just would tell them that we were fine, and I was pretty certain Greg was going to get a job with insurance. (He was graduating with his Master's in School Counseling in May 2013). I also felt that if there was truly something wrong...like deathly wrong, I would know, but I didn't feel that sense of, "holy crap, I think I'm going to die from this." Yeah, it totally sucked, but I didn't feel like I was dying.

Luckily, the end of May we found out that Greg got a job here in Logan, and we would be getting insurance. WOOHOO, just not until September, BOO! I can't even tell you, those last four months were the worst! I don't know if it was just the anticipation of FINALLY getting in to see a doctor, or just being sick of dealing with it. Probably a bit of both, but I noticed a real decline in those last four months. Everything got harder, and seemed to be taking a lot longer. Getting ready for work was a chore, and even getting in and out of the bath tub was becoming near impossible (unless I wanted to just plop down and kill my tailbone again.) Eating food still wasn't fun, because nothing tasted good, and my fingers were really getting stiff (along with the rest of my body). I couldn't get up off the futon anymore by myself, so I had to move to the couch that was a bit higher.

I felt like an old lady. I still feel like one. All of these issues are still there, only a little bit worse. My knees hurt, my hands and wrists hurt, my hips hurt, my shoulders and upper torso hurt, I can't stretch above my head and I can't reach things down low. I can't grip very well, and I can no longer play the piano very well.

Like I said, the months leading up to us getting insurance were the worst. I didn't have a doctor yet, and the one that everyone at work had referred me to wasn't taking patients. When I tried to get in with another doctor in the same clinic, I learned that you could only call on Monday mornings, and they only took so many patients, so you had to be early. Well, one day I was talking to my boss, and he was asking about it, and I told him that I wasn't able to get in with Dr. Carlson because he wasn't taking new patients. He asked me if he wanted me to email  him (Dr. Carlson visits my place of work,, so we know him, and Danny has  helped him with stuff as well), so I said sure. Dr. Carlson was awesome and I heard back from his staff within a couple of days. Unfortunately the first opening wasn't until September 24. Another setback, but I took it. At least it was going somewhere. Well, I was talking to my boss again, and he asked me if I had heard back, and I kind of had a meltdown (I cried a LOT during those last few months), and told him I wasn't able to get in until the 24th, but it was okay, because at least I had a doctor, and one that I wanted to go to. Well, the next day I heard from Dr. Carlson's staff letting me know that he wanted to see me on the 5th. I started crying and sent an email to my manager saying, "I don't know if you said anything to Dr. Carlson again, but thank you." It was an answer to our prayers for sure. So now I just had a few weeks left to be able to see a doctor. Man was I excited!

Another reason I started this blog was so that I could write down small acts of kindness that I've received.

I have worked at my job for over 3.5 years now, and I've gotten to know quite a few of our members. I know the majority by name, and a lot of times can guess what they want to do. A few months back I was talking with my manager and he mentioned that he's had quite a few members ask if I was doing okay. My response was, "Really? That's so embarrassing." Now, you have to remember that I don't want this thing I'm dealing with to be something that's noticeable, or affect my ability to do my job, but obviously there are some things that I just can't control, and there have been some things that have had to change. Plus, when you where gloves all the time, people really notice.

Anyway, I didn't really believe him when he told me that. There have only been a few members that come in that I've told there was something wrong with me. Most people will ask about the gloves and move on (which is fine, because I don't necessarily like talking about it to strangers, because I don't want to have to explain), but a few have asked me deeper questions, so I've told them. They're always sweet about it, and always ask me how I'm doing when they come in next.

Today, I had a gentleman come through the drive-thru that I know, so I greeted him by name. He told me what he wanted, and then asked, "Have you lost weight?" to which I responded, probably with a hefty sigh, "Yes, I have." His next question kind of took my by surprise, "Are you okay?" It kind of took me by surprise that he had that kind of concern for me. This man is always very nice when I see him, but I just didn't expect him to notice much about me. (Plus, he's a male...Men don't notice that stuff! ;). I proceeded to tell him that it was because of health issues, but that we're on our way back up. It just made me feel really good that there are people out there who are watching out for us, that we don't expect, that do care about us and are mindful.

It also got me thinking that we need to be the same. We need to be observant of those around us, whether we know them well, or are meeting them for the first time. Don't ever miss out on a prompting to ask someone if they're doing okay, or to write a note, or just do something kind.

I didn't believe what my boss told me, but apparently it's true. There are people out there who care.