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!

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. ;)