Well, I had a big nice post put together and then it got deleted. Hate when that happens. Let's see if I can put it all together again.


I had a rheumy appointment on the 3rd. It was pretty basic. He asked how my stomach was feeling to which I replied fine. I mentioned that I have a spot on my leg that goes numb when I'm trying to sleep at night. It will burn and tingle and just go numb. I hate it. It happens when it gets too cold and when I get too hot. It doesn't make sense. My rheumy said that it sounded like meralgia paresthetica. He said he sees it a lot in overweight people, and tells them to wear looser clothes and lose weight. Since those aren't really options for me, he wasn't exactly sure what to do. It really isn't a big deal. Just another annoyance I have to deal with.That was about it, though.


Then it was off to run some blood tests and get a chest X-ray to check out my lungs (which came back normal.)


Because Scleroderma, and especially the form that I have, can affect the internals, it's important to run tests to check my internal organs every so often. Since our insurance is changing in September and our deductible is going up quite a bit, we also scheduled an echo-cardiogram to check on my heart.


Before I got to that, I had another fall. This time I was in my house at least, but it still made me so mad. I had just gotten done eating and went to set my tray on the table, when Is stubbed my dang toe on the table leg. I tried to recover and ended up going down and hitting the back of my head instead. It hurt really bad, and I had a massive goose egg on the back of my head. It really sucked.

I had to go get something at the Budge, so when we got out of our car, there was a shuttle waiting, so we decided to take a ride so I wouldn't have to walk a ways so soon after hitting my head. It was awesome.



I had my echo done that next Thursday, the 10th. It was super exciting. It was a lot better than the last one. I didn't freeze, and my hips weren't nearly as sore. It was kind of ironic because last time I had an echo done, I fell just a few days before. I don't recommend it. But the echo itself wasn't too bad.



I still haven't heard back on the results. Everything has always been normal, so I just figured that they'd call me if there was something wrong. Well, yesterday when I was at work, I got a call from my rheumy himself. Not one of his nurses. He called me and left a message saying he had the results from the echo and that he'd call me back. I'm probably freaking out over nothing, but I can't help it. I was pretty stressed waiting for him to call me, and he didn't, so I'm still slightly freaking out. It's probably okay and I am just worrying about nothing. All I know is that Monday can't come soon enough.


I finally got to start on my new medicine to help with my GI issues. Apparently I had to sign a consent form, but they took forever to get back to me about the EKG, then I could just not get into the office on time, or they wouldn't be there. It was quite a pain. Finally when I went in for my echo I was able to sign the form and started the new medicine. I don't feel like its as effective as the reglan, but I haven't had any major issues, so I shouldn't complain too much. Because domperidone can do damage to the heart, I had to get another EKG.




Of course I still haven't heard anything from them. For some reason m GI doc doesn't give me results. I guess I'll wait and see what my rheumy has to say about the echo first, then I'll see if I need to worry about the EKG.


I don't have any appointments too soon. My next is with my PCP on August 11. They upped my dose of fluoxetine, because apparently not showing emotion is bad, and showing emotion is worse. So he just wanted to follow up with me there. I have a few concerns that I may address with him. Its just hard to know whats important and whats not. I mean, in reality I could probably find something new to be concerned about each day, but I don't want to be the one patient who calls about every little thing. I guess that's what Google is for. Self-diagnosing is always a good idea, right?

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!