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. 

I met with my rheumatologist on the 30th of September. I was a little nervous going into it, but mostly anxious. I had had a few people in my ward try to talk me out of going to him, because they weren't happy with him (though I never got an explanation why), but I decided I'd go and see what he was like, since he's the only rheumatologist in Logan and the next closest is in Ogden.


It was a good appointment. I actually liked the doctor. He has an interesting sense of humor, but the kind that I like. He asked me again the basic, "what's going on" questions that Dr. Carlson asked, and did a basic check of my ears, face, shoulders and skin. He confirmed that it was scleroderma, the diffuse kind. (I'll explain more about that in a different post.) He told me he wanted to do some blood tests, then scheduled some tests to check my lungs and heart to make sure the disease hadn't spread to them.

He gave me some more information, and talked a little about the disease and treatments, all  of which I totally can't remember. I just remember thinking the whole time, "Am I still going to be able to have kids?" So when he asked if I had questions, I asked, "Are any of these medicines going to kill my chance of having kids?" I know right? Of all the questions that I had over the last year and a half, that's what I ask. He didn't really give me a clear answer, but just basically said that I can't be on some of the medicine if I want to try having kids, which led to a conversation about contraceptives, sex, and that awkward stuff.


Of course after that I couldn't really think straight, and so the appointment wrapped up. Because it was all a little overwhelming, he only put me on baby aspirin, amlodipine (used to increase blood flow to help with the raynauds), and a low dose pain killer called tramadol. I was actually surprised he  prescribed that. I've had my reservations about pain killers, but he did say, "You don't have to be in pain all the time."

I think the most difficult part about this disease and these appointments is that I don't ever get a clear, definite answer on what is going to happen. Will I get better, will I not? But I also understand that it is what an auto-immune disease is. There are no definite answers. I just have to continue to have hope that "this too shall pass."

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.