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."

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!

I made it through the cold January-March, dealing with the Raynaud's, still just doing my thin. I was able to play rec league volleyball, even though I had to make sure to bandage up my sore fingers and make sure they were warm. Have you ever tried setting a ball with cold fingers? It's a bit painful. But it was fun, and it got my out moving. In April I decided that I wanted to get in shape. I had gained a few pounds, and even though I participated in a "Biggest Loser" challenge in a digi scrap forum, I needed something to get me out and get me moving. I slacked off a bit after the last BL challenge, so I needed to get back to it.

I found a semi-easy schedule to follow, and decided to just jump in. My hands actually did okay as I would run. They were super cold to the touch, but I think moving got enough blood flowing to them that they didn't turn the purpleish, however they would get super swollen, but it was okay. I was out running, working out to get into shape. I actually was doing really well. I could comfortably run 5 miles. I was mighty proud of myself. I was feeling good. I signed up for the Top of Utah Half Marathon, and was excited to have something to look forward to.

I wasn't very far into my schedule when I started feeling pain in my side, right around my armpit up to my shoulder (Sorry, I don't know the correct medical terms. Maybe I should draw stick figures and highlight the parts that I'm talking about. LOL) It felt like I pulled a muscle, which I thought was what it probably was, because I stretch and reach a lot at work. It didn't affect my running, so I just kept at it.

I was incredibly sore for the first weeks, which is completely normal when you don't work out forever then decide to. and I'll admit that I'm terrible when it comes to stretching. I hated doing it when I was in HS, and I still do. My sister-in-law Shaina was actually doing the training with (but not actually WITH) me, but we decided to do our 6-miler together. She kicked my butt, but kept me going, so I was happy with a 60-minute 6-miler. But afterwards, good heavens, my calves were burning. They just felt super cramped. and it really hurt to walk. Luckily I noticed I could run it off. Sure it was sore for the first little bit, but once I got going, I was fine.

I skipped my 7-miler the next week due to laziness, the day off of work, and a holiday weekend (Memorial Day), and decided to just go to my 8-miler the next week. I had my route all worked out which took me up on campus, down to first dam, back up to campus, then back home. Well, I got to campus from first dam when I get this horrible pain in my knee. I have never felt a pain so bad in my life. I thought maybe it was one of those that I could just run off. But oh my goodness no. It was not possible. I decided after that Saturday to slow it down, and not do as much. I tried stretching and yoga. I tried running over the next few weeks, and I started getting pains in my shins. Like horrible shooting pains. It wasn't like a constant thing, or something that happened when I stepped a certain way or anything. I couldn't figure out what was causing it that, or if there was a way to prevent it from happening. Needless to say, after a few weeks, I decided to stop training. It was hard. I REALLY wanted to do this, but I just physically couldn't.

The shooting pains continued throughout the rest of the summer. It would be in my shins one day, then in my knees another, then up in my biceps another, then my hips. I just couldn't figure it out. Like I said, it was never constant, but when it would happen, it would take my breath away it was so bad. Nothing hurt to the touch, so it's not like I could try to massage anything. I didn't know what it was. When I'd get them in my arms, it was like I could lift them to a certain point, and then they were just stuck. If I tried to go further the shooting pain would just kill. It was NOT fun. I dealt with this all summer, and into fall.

My joints started getting achy, my hands were still completely swollen, and I was starting to have a hard time gripping things. My stomach was also starting to hurt. I had pretty bad acid reflux, which I''ve never had before. It was hard to want to eat. Food started tasting bad to me, and I just didn't want to eat food.

Around this time, my friends Camille and Brittney asked me to play on their rec volleyball team. I didn't want to say no, so I told them I would. It actually felt good to kind of run around, and fun to get on the court again...until I tried to serve overhand and couldn't. The pain was definitely there, and I just didn't have much strength. I also had a bit of a hard time moving forward fast, but I did it. The girls were totally understanding, but it was kind of rough to realize that maybe this was something that wasn't going to go away. For the 6-7 months prior, I just kept thinking that it was going to just go away. It was hard knowing that it wasn't. Greg & I didn't have insurance at the time, so we just kind of dealt with it.

As I mentioned, my stomach started hurting a bit, which made me not want to eat. I also decided to go off of birth control, wondering if that was causing some random weird effects, and during that volleyball season, I lost about 15 pounds. I didn't know what to do. Food was gross to me, and I just hurt. I didn't want to tell people, and didn't want to answer questions, because I never knew what to tell people. I didn't know what was going on, I didn't know what to tell them. I just knew that I had to stick it out, again believing that it would all just eventually go away.

It was an interesting 2012 to say the least.

In December of 2011, I noticed that if my hands got really cold, they would turn white, and go numb. It just started in my middle fingers, and progressively got worse. I just thought it was really strange, but didn’t think anything of it. I'd just wear gloves and try to keep them warm.

In January of 2012, they started turning a purpleish/blackish color when they got too cold, and they were really hard to warm up again. It kind of freaked me out, and one day at work I showed my co-workers. They kind of freaked out, so that kind of freaked me out. I ended up going to Instacare, where I learned that it was really expensive to go there. I kind of teared up when she told me how much it cost, and I guess she though I was crying because of my fingers. Needless to say those few tears got me in a bit quicker. The nurse came in and did all the basics, and then I waited for a bit longer. Of course by the time the doctor got in there, I had warmed up a bit so they weren't as black as they normally are. After looking me over and hearing my symptoms, the doctor told me it was most likely Raynaud’s. What is Raynaud's? Well, if you don't want to click on that link, it is:  "a rare disorder of the blood vessels, usually in the fingers and toes. It causes the blood vessels to narrow when you are cold or feeling stressed. When this happens, blood can't get to the surface of the skin and the affected areas turn white and blue. When the blood flow returns, the skin turns red and throbs or tingles. In severe cases, loss of blood flow can cause sores or tissue death."

Now I had done some research on my symptoms before, and that is what I had come up with, so I wasn't too surprised by the answer. There isn’t anything they can do to test for it, but based on the symptoms, that’s what they said it was. They did also run some blood tests to rule out some other things (which I so wish I could remember what they were. When I come out of a doctor's appointment, I have a REALLY hard time remembering what they told me. Haha!). Those came back normal. So, I was basically told to keep my hands warm. I was a little frustrated with this guy because he acted like it wasn't a big deal (which I realize it really isn't, but it wasn't cool at the time), but even when I asked him when I should become concerned with it, like how long I should let my fingers stay numb if I'm unable to get them warm, and he said, "Well, it's not like you're going to lose a finger or anything." Right. Can you see why I wasn't happy?

(This isn't my picture, but this is the least gruesome photo I could find, and pretty accurate to what my fingers would look like)

So I just went on, wearing gloves as much as possible, dealing with the constant question of, "Are you really that cold?" which totally shouldn't bug me, but really, why else would I be wearing gloves, and trying to keep my hands warm. It wasn't too long after that appointment when I started developing ulcers on my fingers. I developed a really bad one on the middle finger on my right hand, on the edge of my finger, where the nail meets the finger. It started out being sore to the touch, and then it would look like there was puss under the skin, so I would try to squeeze it out. It was incredibly painful, and it was even worse when it got cold. I wish I could put into words what they're like, but it's kind of gross, and probably unnecessary. Ha! They also take forever to heal. I think that first one took more than 2 months to completely heal, and even after, the finger was never the same. It was still a bit tender to the touch. Even without the ulcers, my finger tips were super sensitive. I had to be super careful digging through my purse because if I hit my fingers just right, it would hurt like crazy. It is a rough thing. still get really cautious when I feel like a sore is coming on. If it's something I can squeeze the puss out of fairly early, they aren't as bad, but there isn't anything I can do to prevent them, other than keep my hands warm, which is kind of hard to do.

Even now, two years later, Raynaud's still really affects me, but honestly, had I known what was in store for me next, I wouldn't have complained so much about it. ;)