...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.

Since the episode from my other post. Greg has decided that I really need to exercise and lift weights. He has been telling me this forever, but I just ignore him. I don't want to do it. I'm almost always tired, and I feel like I just don't have enough time. I just want to be lazy, plus, in reality, I'm not sure how much it will actually help.

I decided to look online to see if I could find some stretches or something specifically for scleroderma patients. I found this one...

Let's be honest...If I could do that, I wouldn't have any issues. A: I can't get on the floor, and B: there is no way that I would ever be able to lift my legs and balance. NO WAY! Obviously the people who wrote this have absolutely no idea what it's like to have scleroderma.

To get myself "excited" about exercising, I created a chart for Greg and I to mark off what days we exercised, and what we did. I just need smiley face stickers to really make it fun!


I really don't do a whole lot. I walk on the treadmill at a speed of 1.5 mph for 15 minutes. I would so much rather walk outside, but that's really not something I can do by myself. There's always that chance that I will trip, fall, and won't be able to get up.


I also have wrist weights that I use when I walk, and occasionally do some arm lifts. It's hard since I can't lift both arms at the same time very well. Plus, while walking on a treadmill, it could be a disaster waiting to happen. Greg makes me wear the clip so if I do fall, the treadmill will turn off.


I think the most frustrating part of this is that I can't really do what I want to do. I seriously crave going for a 2 mile run outside. I miss it. I miss being able to do ab work. If I were to try to do a situp, well it may take years to happen. I really don't think this will help a whole lot, but at least I'm trying. Maybe soon I'll be able to pick myself up after I make a stupid decision to crawl.