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."

By now, you're probably wondering just what exactly is Scleroderma. Well, in simple terms (and in a cute typo-graphic)

So, basically, my body has decided that it doesn't like the healthy body tissues in my body, and tries to get rid of them. So much for trying to get in shape and be healthy right? In more in depth terms, this is what eMedTV says about it:

Scleroderma is derived from the Greek words "sklerosis," meaning hardness, and "derma," meaning skin. Therefore, it literally means "hard skin." Although it is often referred to as a single disease, it is really a symptom of a group of diseases. This group involves the abnormal growth of connective tissue, which supports the skin and internal organs. Therefore, scleroderma is sometimes used as an umbrella term for these disorders.

In some forms of scleroderma, hard, tight skin is the extent of this abnormal process. However, in other forms, the problem goes much deeper, affecting blood vessels and internal organs, such as the heart, lungs, and kidneys.

Scleroderma is considered a rheumatic disease and a connective tissue disease. A rheumatic disease refers to a group of conditions characterized by inflammation and/or pain in the muscles, joints, or fibrous tissue. A connective tissue disease is one that affects the major substances in the skin, tendons, and bones.

Here is a list of symptoms of scleroderma with the ones I've experienced in bold.

Skin symptoms of scleroderma may include:

• Fingers or toes that turn blue or white in response to hot and cold temperatures (Raynaud's phenomenon)
• Hair loss
• Skin hardness and thickening
• Skin that is darker or lighter than normal
• Stiffness, and tightness skin of fingers, hands, and forearm
• Small white lumps beneath the skin that sometimes ooze a white substance that looks like toothpaste
• Sores (ulcers) on the fingertips or toes
• Tight and mask-like skin on the face

Bone and muscle symptoms may include:

• Joint pain
• Numbness and pain in the feet
• Pain, stiffness, and swelling of fingers and joints
• Wrist pain

Breathing problems may result from scarring in the lungs and can include:

• Dry cough
• Shortness of breath
• Wheezing

Digestive tract problems may include:

• Bloating after meals
• Constipation
• Diarrhea
• Difficulty swallowing
• Esophageal reflux or heartburn
• Problems controlling stools

Awesome right? Okay, so it's broken into two main forms of Scleroderma, {localized} & {systemic}. Here's the difference between the two. (click on image to see it bigger).


Got that? So naturally I have the worse of the two. Systemic. A lot of the symptoms for both are the same, however systemic covers more of the body. Some of those wonderful symptoms are known as CREST.

• Calcinosis. The formation of calcium deposits in the connective tissues, which can be detected by an x-ray. They are typically found on the fingers, hands, face, and trunk and on the skin above the elbows and knees. Painful ulcers may appear if the deposits break through the skin.

• Raynaud's phenomenon. A condition in which the small blood vessels of the hands and/or feet contract in response to cold or anxiety. As the vessels contract, the hands or feet turn white and cold, then blue. As blood flow returns, they become red. Fingertip tissues may suffer damage, leading to ulcers, scars, or gangrene.

• Esophageal dysfunction. Impaired function of the esophagus (the tube connecting the throat and the stomach) that occurs when the smooth muscles in the esophagus lose normal movement. In the upper esophagus, the result can be swallowing difficulties; in the lower esophagus, the problem can cause chronic heartburn or inflammation.

• Sclerodactyly. Thick and tight skin on the fingers, resulting from deposits of excess collagen within skin layers. This condition makes it harder to bend or straighten the fingers, and may also cause skin to appear shiny and darkened, with hair loss.

• Telangiectasias. Small red spots on the hands and face that are caused by the swelling of tiny blood vessels. While these spots are not painful, they can create cosmetic problems.

  The main ones I suffer from are the Raynaud's, Esophageal dysfunction, and sclerodactyly. Love it!

Now, as mentioned above, Systemic scleroderma is broken down into Limited or Diffuse.

Whereas Diffuse is a bit more complicated.
Guess which one I've got. (And no cheating, since I told you in my last post.) But yes, I've got Diffuse Systemic Scleroderma, due to it affecting so much of my body, as well as having all of those awesome symptoms listed.

The damage caused by diffuse scleroderma typically occurs over a few years. After the first three to five years, people with diffuse scleroderma often enter a stable phase lasting for varying lengths of time. During this phase, skin thickness and appearance stay about the same and damage to internal organs progresses little, if at all. Symptoms of scleroderma also subside, which means that joint pain eases, fatigue lessens, and appetite returns.

The skin will gradually begin to change. Less collagen will be made, and the body will get rid of excess collagen. This process, called "softening," tends to occur in reverse order of the thickening process: the last areas thickened are the first to begin softening. For some people, skin returns to normal, while other people are left with thin, fragile skin without hair or sweat glands. More serious damage to the heart, lungs, or kidneys is unlikely to occur, unless previous damage leads to more advanced deterioration.

People with diffuse scleroderma face the most serious long-term outlook if they develop severe kidney, lung, digestive, or heart problems. Fortunately, less than one-third of patients with diffuse scleroderma develop these problems. Early diagnosis and continual and careful monitoring are important factors in this.

So, I guess there is hope that maybe this disease with become stable. It progressed really rapidly from about June-September, and since being on the medication, it has slowed down. Because of the kind I have, they have to monitor my internal organs pretty regularly to make sure nothing goes wrong there.

There is not a known cause for what brings this disease on. Scientists suspect that it comes from several factors, which may include:

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!

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. ;)