...an update!

I know, it's been so long, you probably figured I was healed of all my Scleroderma...wrong! I have had many MANY thoughts over the last almost year, but have just not written stuff down. I will try to do better though, because before you know it, an entire year will slip by.

And here we are! Trying to decide where to start....

Here goes...

So I think the last real update I had just started going to physical therapy. What a joke. I know I need to do a lot of the stretches on my own, but literally, my appointments were about 5 minutes. I could have googled stretches on the internet, and not had to pay hundreds of dollars. (Actually I don't think they charged me for some of the appointments, but still!)

The stretches kill me, and I have a terrible attitude about them (even still). I just don't feel like they are very effective, and maybe part of it is just me wishing to see results within the first couple of days, but I don't. It just gets frustrating, and then I quit doing it. No wonder I'm not any better off than where I was a year ago!

One thing the PT did mention was to get a stationary bike. I figure that's something I can do with little exertion, but still get some exercise in. Unfortunately, I have a hard time getting onto the bike we ordered, so Greg has to help me.I was kind of hoping for something that I could do if I were home alone and had nothing better to do. Oh well. Such is life I suppose.


I felt all sorts of motivation a couple of weeks ago, so I rode my bike one day, and walked for 20 minutes the next. It killed me for the rest of the week. I'm telling you, it's a struggle between, should I exercise and feel like crap, or not exercise and feel like crap. Let's me honest, the latter wins 99% of the time.

I really need to do it, I know! I just need to. Maybe this summer will be the start of something new...After May is over of course. Oh, and then there's that week in June....kidding, but that's basically my mindset.

If I did have my strength and energy and flexibility back, it would help in so many ways. For one, I wouldn't have little 18-month olds knock me over. Funny story. My good friend Melanie WAS (she has since moved...jerk!) in nursery, and they needed someone to sub. I volunteered, so I headed down to hang out with her and the kids. There was one girl who wanted me to pick her up. so I tried. I was able to lift her to stand on the table so I could adjust, well, when I picked her up, I lost my balance, and basically slid down the wall, resulting in no injury to her, but some minor flesh wounds to myself. It was kind of funny though, when I was on the ground, the little girl was perfectly on my chest just looking down at me. Embarrassing? a little, considering there were 2 additional people in the room, but mostly frustrating. Let's just say I didn't volunteer again.


I stopped at the hospital (ironically) to pick up some medicine, and I forgot I had my work keys in my lap. When I got out of the car, they fell to the ground. I was all by myself, and I can't bend over and pick things up. So, I did what I could. I used one foot to balance the keys on my other foot, opened my car door, lifted my foot with the keys and kicked them in. I am a genius. Just wish I didn't have to be!

I also wouldn't have any issues applying for this teller position at a financial institution down in California (Yes, I looked!)

Luckily, I've been at my job long enough that if it comes to stooping, kneeling, crouching, or crawling, I just boss my newbie co-workers, and make them do it.

Moral of the story: How do I stay motivated to work on something that I feel no progression being made? Any thoughts, tips, suggestions? Any want to come be my personal trainer? I will pay you in friendship.

Also, I know that is not technically a "moral of the story". I struggle with my words sometimes.

Yesterday was a "typical" Wednesday. I woke up around 7:03 to get ready for work. It is earlier than my other weekdays because we have a work meeting Wednesday mornings at 8. This Wednesday we were going to breakfast at Village Inn because we met some referral goals. A normal person would think that it's awesome to get a free breakfast, and I guess it is, but it's not so awesome for me.

My stomach does not handle large breakfasts very, and using silverware I'm not used to can be hard, really uncomfortable, and hurt my fingers. Not to mention, eating sitting straight up is really hard. Then there's the fear of spilling on myself. I can't just run home and change quickly. It's not that easy for me.

When we go out for breakfast, I feel like I have to get something even though I know it will upset my stomach, because I don't want them to question or wonder why I'm not wanting to eat. So I order a my breakfast, even though my stomach is turning imaging the food I'm about to eat in it. I try to order the lightest, least greasy, non-eggs meal there is.

When the food comes, and everyone digs in, I look at my food, trying to decide where to start. What will be easiest on my stomach first? What will be easy to cut into small pieces and fit in my mouth? If I try to eat this, will it spill all over me? Do I have enough water in case something gets stuck in my throat? Questions most people don't ask before digging into a delicious meal. Questions I never asked myself before the Gastroparesis started.

I've become a really slow eater as if I eat too fast, it just makes me even more sick to my stomach. So, as everyone is finishing up, I'm barely through half of my meal. Then comes the debate of, "If I stop eating will my stomach hurt more, or if I keep eating will my stomach hurt more?" Seeing as everyone is ready to go, I usually stop eating. I mean, let's face it, the longer and more I try to eat, the less appetizing the food is.



As this large breakfast ends, it feels as though the food is just sitting on the top of my stomach. I feel the effects of it throughout the rest of the day. When lunch rolls around, I head to the break-room not wanting to add more food to what is already not digesting very fast in my stomach. Peanut Butter and Jelly is my typical lunch. On days like this, I have to force myself to eat the sandwich. Greg cuts it into quarters for me, and I try to make it through at least 3/4. By piece three I'm struggling to gag it down.

Some days I really just eat because I have to. Not because I want to, or because it tastes good, but because I have to in order to survive. I am grateful that I can still eat, and I'm definitely not complaining about that. It just gets hard sometimes.

As the day went on, my stomach was slowly settling. I couldn't just go home and lay in bed, I had to keep working. Plus, later that evening I had a Relief Society Activity I was in charge of. I still had to go help set up, followed by the activity, followed by cleanup.

I got to the church to help set up, and by set up, I mean do what I can and hope I'm not just in the way. It's hard to watch those around me do everything because I don't have the strength to set up the tables, or the energy to pull out chair after chair. They put me on things that I can do, like put the pictures in the frames. I got four/eight done in the time my friend got all 8 tables set up, by herself. I feel as though I'm in the way more than I'm helpful. It's hard. We ended up getting everything ready and the rest of the night went well.

A long day like this would make anyone tired, but by the end of the night I was exhausted. I hurt everywhere, hips, legs, feet, head, etc., was feeling nauseous from the very little salad I ate, and my body was just weak. It's not like I know that I can just go home and crash, because I don't know if I'll even able to sleep later, or how I will feel the next day. It's not like I can just sit at home if I'm not feeling well. I have to work. I have to keep moving. I don't have a choice.

A "typical" Wednesday for me is definitely not a typical Wednesday.

There has not been anything too "exciting"going on, and my head hurts right now, so this is going to just be a quick update/recap. No deep thinking for me. Seriously. Head. Hurts.

So, ever since I was little I have been known for my long fingernails. I really just hate to clip them. It's not that I like them long, because I actually don't, but I just have issues clipping them. Now it's even harder for me, so I usually let them go until I can't take it anymore, or I attack myself and cut my thumb or other fingers up. It's silly, but anytime I get a scratch or sore on my hands, they hurt like crazy. I can't tell you how many times I dig into my other fingers with my thumbnails. This is weird, I know. (Remember about my head hurting!)


I have always had quite terrible fashion sense. So when I get new outfits, I'm all sorts of excited...until I put them on and realize how helpless I feel in them. This is a cute outfit, and a normal person may have no problem with it. Me...oh boy. Trying to get the slip right under the skirt was a nightmare, also made me a few minutes late to work.


Apparently Physical Therapy is only effective if you do the stretches on your own at home. I don't know why I have absolutely no motivation to do it. I just don't. I really need to work on it, because I'm a weak soul. and I hate it!


I had a pulmonary function test the beginning of April. I had a 6 minute walk, followed by the breathing test. If you recall, the last time I tried a PFT, I was unable to do it due to my inability to put my mouth around the mouthpiece. I struggle a little this time, but was able to do it! Woot woot! My results have improved a little since last time, which I blame on the Cellcept I'm on as it is used in patients with lung problems. I was happy to be able to do it, and happy for the improved results. Where I live in this body, it's sometimes hard for me to see any improvements, so when we can have some numbers to go off of, it can be helpful (though I realize it's not always accurate). But, yay! I was mostly glad I was finally able to do it.


So, I am going to end now as I need to get ready for work. I know. I suck at this blogging business! :)

I am so bad at keeping up to date here. As I lay in bed at night, I have a million awesome blog posts, but when it comes to putting them into words, I have a hard time. Mostly because I'm a terrible writer, and when I'm thinking about it I can fill in the blanks, but the words don't come when it's time to actually write them. But I will update really soon. I promise.

In the meantime, for your viewing pleasure: Nick Miller everybody. I love him!


Also, I've never actually been on a scooter, but if I had, I'm sure that I would have looked like the girl in my header. It has nothing to do with scleroderma, or me really, but it was cute and I wanted something different!

The last few months have been pretty ordinary. I’ve had two appointments with Dr. Walker (my rheumy) which both went well. They were just basic, “How are you feeling?” appointments, which is fine since nothing has really been too different. I have really enjoyed working with Dr. Walker. I like his sense of humor, his personality, his knowledge. He’s been really great. He makes me feel comfortable and can joke around with me, yet still be quite caring. I’m glad I didn’t listen to others who told me not to go to him. If I felt like there was something others could do for me that he isn’t already doing, then I would request a referral, but I truly believe that he is doing all he can, and I really appreciate him.



I mentioned to Dr. Walker at my October appointment that I wondered if there was anything I could do to build back my strength. He suggested physical therapy, so now I go to physical therapy every once in a while.

My first physical therapy experience was interesting. Well, actually all of them have been. I talked to the physical therapist for about 5 minutes, then he went and got a list of stretches for me to do, then told me to come back in about 2 weeks. Can I just say that those stretches totally suck. They aren’t even that hard, which is probably why I find them to be even more frustrating. One of them is to sit on the chair and bend over as far as I can. I’m quite pathetic at it. Very much so.






After the first two weeks I had another PT appointment. It literally lasted about 3 minutes. I went in, the physical therapist asked me if I felt the stretches were working, I said no, and he said, “Okay, we’ll have you keep doing them, and check back in another two weeks.” Not even kidding. That was that. So I kept doing them. Didn’t see a whole lot of improvement. When I went back, he gave me some strengthening exercises to do. They, again, are pretty simple, yet they totally kick my butt. I’ve done such a terrible job of doing them. I’ve been okay doing my arm ones, but my leg ones, not as much. It’s just hard to keep going when you’re not seeing any improvement. But I do it to do it. We’ll see if it pays off.



Other than that, nothing else has been going on. I had an EKG on the 19th of December to make sure my heart is still functioning properly, as one of the medications I am on can mess with my heart. I also met with Dr. Garg, my GI to follow-up on said medication (Domperidone). It was another quick and short appointment. I was kind of annoyed because when we got there, the nurse asks, “So what is the reason for this appointment?” Umm, well you guys called me, so why don’t you tell me. But Dr. Garg just asked me a few questions about the medication and swallowing.






It’s been quite an interesting experience. I really have a hard time deciphering how I feel. When people ask me how I feel, I don’t know how to answer. Like, how do I feel compared to when I was healthy? Or, how do I feel compared to this time last year? It’s a hard question to answer. I don’t know if some of the things I’m feeling are “normal” or are something to be concerned about. If I’m still able to perform my daily activities, I just chalk it up to a “scleroderma thing”. It’s never anything I feel to be life-threatening, of course, but when I read about others who go to different doctors for different things, I kind of wonder if I should be more concerned. But I’m not. I just go with the flow and take it.

I fully intend to post again. Just haven't had any major catastrophe's to blog about. I get great post ideas when I'm trying to sleep, but they're the type you have to write up as your in that mood, otherwise, you just can't do it! But quick update, I feel "FINE". I don't really know how to answer that question, so unless I say, "I feel like crap." Just know I'm doing fine, good, great, grand, wonderful. I really am. I promise. (Just trying to avoid sleep at this point....)


Oh hey, that was my first instagram post of the year. #awesome!