I had my second PFT schedule for the 2nd of April. Greg was on his Spring Break, but I had to get off work a little early. When the nurse came in, she looked a bit surprised and said, "You're back already?" I was surprised she remembered me. I just told her that it had been about six months, so it was due.


Well, we get in there and she tries to use the oximeter, which of course doesn't work, then tries to use the ear clip which also doesn't read anything. That should have been the first clue for me of how things were going to go down. Well, she shows me the new machine they have and has me go in and sit on the chair. Knowing I was going to be there for a while, I asked her if I could grab my coat to sit on. It was a rock hard wood chair, and my butt just can't take that for long periods of time. Once we finally got that settled, I went to put my mouth on the mouthpiece. I don't even come close to fitting my mouth around it. So she grabs the one they use for kids. Well, my mouth doesn't fit around that one either. Of course not. And of course that is the smallest mouthpiece that they have, which actually surprises me because this is a test scleroderma patients do quite a bit, and I can't possibly be the only one who can't open my mouth....Right? Anyway, I started crying out of frustration, and the nurse was just a sweetheart. She kept saying things like, "I'm sorry you have to go through this," and just tried to make me feel better. She sent Dr. Walker a message letting him know I wasn't able to do the PFT, but I haven't heard from him about it, so it must not be too important.

After the nurse said, "Sorry you had to waste your time coming out here," we responded with, "Well, I already got work off, so it's okay." I was craving a seafood sub from Subway, so we went and got one, then Greg surprised me by taking me to Divergent.


Such a good movie! It could have followed the book a little better, but the main dude is might good looking, so I didn't mind too much.

Then we came out to this scene of snow. Despite not being able to do the PFT, it turned out to be a good day. We'll have to see what my doc says when I visit him next.

The same week I got shingles, I actually had my next appointment with Dr. Walker. By then I was feeling much better compared to the beginning of the week. When he walked in he said, "Really? Shingles?" I should have told him that I blamed him, but I didn't. We just talked for a little, then he had me hop up on that bed thing (seriously, is there a name for that thing?) while he did his exam. When he pulled up my pant leg and saw my shingles he just said, "Oh!" I started laughing and said, "Yeah, I know."

He then asked if I had questions. I asked him if this was a set-back in the progression the Cellcept had made, and he didn't seem to think so. I was taken off of the Cellcept by Dr. Carlson, and Dr. Walker just told me to wait until the sores had started scabbing over before going back on it. I have to admit, I was a bit afraid to go back on it because I don't want those dang shingles to come back. But he said that most people don't get them a second time, so here's crossing my fingers. He also lowered my dose of the Cellcept, so instead of six each day (or 3000 mg) he dropped me to five (or 2500 mg).

I did ask him how I compared to the other scleroderma patients he has seen, and he surprised me by telling me that I was on the more severe end. Of course, that has more to do with the type that I have than probably how I actually am. I also asked him if we found the Cellcept to work if it's something I would/could take for the rest of my life. He told me yes. Score! Looking forward to taking meds for the rest of my life.

One concern he did have was my lungs. Greg said that I wheeze at night, and I have been coughing a little bit more, so Dr. Walker scheduled another PFT for me. It is something that I'll be tested for about every 6 months or so anyway, just for  precautionary measures. Especially where the diffuse kind of scleroderma can get aggressive with the lungs, we need to keep an eye on the lungs. I seriously have been SO blessed to not have any lung issues. My heart breaks for those who have those issues. They are tough people for sure.

It was another good appointment, though. I told him that I forgot all the questions I had, though. Dang shingles.

He sent me down to get blood tests and a urine sample (which was fun, but I'll spare the details!) As the nurses poked me for the blood test I told them I had to take a picture. I think they think I'm a total weirdo, but oh well. Unfortunately, that arm stopped giving blood, so they had to use the other arm. They always have a hard time finding veins, and ones that will give blood. So I got poked twice that time. It wasn't really that bad. I've got tough skin...(Okay, bad joke!)


So I have been complaining about the size of the Cellcept, but the pill on the left is the antibiotic for the shingles. It makes the Cellcept (right) seem tiny.
Another appointment down. Next one is in July. Can't wait!

Following what has now come to be know as "the Fall", things changed a bit. I no longer wanted to go anywhere alone. Partly because I felt dizzy still, and mostly because I was afraid of failing again, and not having anyone there. So, now I don't shop alone, or really go anywhere alone, except work. I still have to make sure I stay right next to Greg or the shopping cart, just in case I start to go down. I don't get dizzy so much anymore, but I do have a tendency to stumble, and if I turn to fast, I lose my balance. So, I'd rather be safe than sorry.

The next Monday (10.7.13) I had my first test scheduled. It was for an Echocardiogram. I've never had one of those before, and if you haven't either, here is what WebMD says about it,

An echocardiogram (also called an echo) is a type of ultrasound test that uses high-pitched sound waves that are sent through a device called a transducer. The device picks up echoes of the sound waves as they bounce off the different parts of your heart. These echoes are turned into moving pictures of your heart that can be seen on a video screen.

Or in simpler terms, an ultrasound of my heart.

Greg had a conference or something that day, so he asked his sister Shaina to go with me. She was sweet enough to pick me up from work, walk me into the hospital, and sit for an hour or so while the echo was going on. I'm grateful for family members who are so willing to help out.

I stripped off my shirt and put on a gown, and the guy doing the test had me lay on my side. Oh my painful. My hips were so incredibly sore by the time we were done. I can't lay on my side for long periods of time anyway, so it was a test in and of itself. Next time I'm taking a pillow to put between my knees. It was also freezing so that didn't help me from shivering both from pain and cold. Lessons learned.

He put that goopy stuff on and got to work. He checked it from the left and right sides, then underneath and above. I was able to watch the screen as he did it. It was quite interesting. I had no idea what he was seeing, but he seemed to know, so I guess that's all that matters. Overall it lasted about an hour. It seemed to take longer because of the hip soreness, but it wasn't really that bad. It was a bit relaxing in someways.

Those tests came back normal, with a slight elevation in blood pressure in one of my arteries (? I think that's they said, lol. It was a while ago.) I just know my heart is good and still beating.

After the echo we went and got the chest X-rays I was supposed to get the previous week. It was quick and painless, and those came back normal as well.

That Wednesday (10.9.13) I had a Pulmonary Function Test. (Just click on that link to learn the technical terms.)

Before that I took a six minute walk. They couldn't get the oximeter to work on my finger (it never does), and had troubles getting the ear one to work. I don't know how the test actually went, to be honest with you. I literally just walked, as fast as I could for six minutes and had to rate how hard I was breathing. All I know is that part alone cost $135.

While I was waiting for my heart rate to get back down to normal, I snapped these.


He's always so good to go with me to my appointments. Thank you hospital for having free wi-fi.

For the PFT you put your mouth really tightly around this mouthpiece, and breathe in when she says breathe in, and out when she says out. There are a few different tests, but that's basically what it is, just repeated. The hardest part for me was getting my mouth around the mouth piece. She kept offering a smaller one, but I was too stubborn to say yes. Next time I'll for sure say yes. My mouth was so sore, and I think it made it a lot harder too. I wish I could remember what she told me about what was going on, but she said things looked okay, but that it did look like air was getting trapped. It was a fun experience.


Other than the slight air trappage, everything else seemed to be okay, but they wanted me to do a CT scan to make sure. I went in on the 16th and had that done. That, too was a new experience for me. Good thing I'm not claustrophobic or anything! JK, it really wasn't that bad. They had me raise my arms above my face while breathing in and out when told to as they took me in and out of the machine. Plus, I got a warm blanket. It was awesome.

Picking up a prescription. Dr. Walker said I was iron deficient, so he had me start taking an iron supplement as well, and then we headed up to Star Valley for a fun, relaxing fall break. Crazy it's been almost 4 months since then. So crazy.

Here is a picture I took of my swollen ankles. One of the side affects of the amlodipine is swelling. They got massive, so I was told to cut them in half. (The pills, not my ankles.)


Like I said, though, this was a month of new things for me. I'm grateful for the technology we have no days that can check things inside our bodies. I'm also EXTREMELY blessed that the scleroderma has not yet hit my lungs. I hear stories about people whose lungs are affected, and my heart just breaks for them. I have a hard time coughing as it is, so to have coughing fits would just be so hard. Keep praying that my insides will be strong enough to fight this blasted disease!