WARNING: This blog may contain some scary descriptions and images. If you're a Scleroderma patient and want to read on, please do so with an open mind. Hopefully my experiences can help you, please feel free to poke around and use what you can!
We went out for dinner tonight and I ordered a margarita. The waitress carded me. This isn't an odd occurrence. I get carded from time to time. What was funny was the way she carded me. She almost seemed there was no possible way she thought I was 21. Uh, yeah ... try 12 years ago! LOL!
2 weeks ago when I did my volunteer orientation at the animal shelter, I was talking with another volunteer. We were talking about another organization that I want to volunteer with that works with the court system. She said to me, "Are you OLD enough to do that?"
The "positive" side effect of having Scleroderma is the youthful glow it gives my skin. Yes, we'll cal kit that. A "youthful glow"
It cracks me up to think what some women pay to have collogen pumped into their lips, foreheads, etc. so they can look younger. Have that youthful glow.
I woke up today feeling a little stiff and achey. I'm sure it's from the travel and lack of activity while on the road. Granted, I was busy running here and there and visiting family, the time really was spent being sedentary. No exercise. No yoga. Can 2 weeks really make a difference? I'd like to say no, but I'm afraid my body is telling me different.
I am noticing that no matter how much I don't want to admit it, my middle finger on my right hand continues to curl inward. Nothing I can do about it. I stretch it and pull it to it's limit throughout every day, but the tightening is winning. Another digit, soon to be rendered all but useless. More modifications to be made and adaptations learned. After last year's easy left finger amputation, that seems like such an easy solution. I'm not using it. Cut it off. I can't do that though. If I keep following that plan of attack, I'll surely have no fingers left at all!
Wouldn't THAT be an adjustment?! Such is life! It's just a finger. I'll learn to adapt with it the way it is, without cutting it off. It could be much worse!
I'm currently headed home after a week in PA for a wedding and then visiting family.
I managed 1/2 of the trip without the hubby and am happy to report, it has gone well. I'm not beat down and exhausted. I still feel really good.
My hand sores are the only issue. They are healing, slowly. They just make things harder and are painful, but manageable. I do miss not being to yoga for over a week. I can "feel" the need to go back and get some PT and stretching back. Glad I've got 2 classes on the schedule for next week.
I had a couple of Raynauds episodes while in the cooler weather, but nothing some fuzzy socks and a blanket didn't fix.
I can also see the difference in my skin. It has gotten drier as the week has progressed. I think my body really loves the humidity and added moisture in the FL air!
Finger sores are still healing. Evening "cankles" are still appearing. The lung rub hasn't been noticeable in days.
Yoga kicked my butt today! My inner thighs and butt muscles are yelling at me tonight. In a good way! In the way that says, "hey, you're breathing some life back into me!"
I got some awesome stretching in and I am finding that my body is slowly becoming more flexible. Slowly, but surely.
Each week I notice that different things are becoming easier.
Over the past few weeks I've noticed that, though still difficult, picking some things up off the floor is easier. Flat things like paper or cards are still impossible because of my fingers. Other things like clothes, dropped silverware, bottle caps, etc. are getting easier. I didn't say easy. I said easier.
Today, I put socks on alone. In public. Without my "sock assist." I didn't look like I was trying do some circus trick and I wasn't a sweaty, tired, crying mess afterward. I have not put a sock on my own foot without using the "sock assist" in years. I honestly don't remember the last time I was able to put a sock on "normally."
IN YOUR FACE, SCLERODERMA! You and your muscle and tendon tightening got nothing on me today! BOO-YAH!
I forgot that the heat and humidity bring on the joys of puffy feet and ankles! By bed time each evening my feet and ankles feel like they might just pop. The "cankles" have started to kick in! For those that ask what "cankles" are ... it's where your ankles disappear. Your calves and ankles have miraculously joined together as one ... into a "cankle."
Oh, the joys of summer. These are not an intolerable occurrence. Just another annoyance. This one make any shoes look like I'm trying to be the step-sisters on Cinderella, shoving my big fat feet into that tiny glass slipper.
Other than that, it's been another good week.
Less noticeable lung disturbances.
Same annoying, painful ulcers on my fingers. The one on my arm is almost completely healed.
I think I'm getting more flexibility from doing the yoga. Not to mention the overall workout it's giving my body. Mind and soul, too.
Blood work was on Thursday. We'll see what the results are tomorrow.
The past week has been another pretty quiet one. No large joint aches or pains to speak of.
My right lung seems "irritated" at the end of every day. It's nothing that feels major to me. It doesn't hurt. Just makes me feel winded. Let's me know it's there and something is going on. A good night's rest calms it down and it goes away until I get tired again. Sometimes it pops up after a yoga session. Something I expect, as I am working my body and my breathing. Some days a day out make it more noticeable. Again, all to be expected. And easy for me to manage. Just stop and "take a breather." (Pun intended!!)
My feet are bothering me more lately. The balls of my feet hurt. I've had this "foot thing" in the ball of my left foot for a few years now. It comes and goes. It flares up if I wear the wrong shoes or have been on my feet too long. I've learned not to wear any sort of heel for very long. I can get away with a couple cute pairs of really squishy heeled sandals that I own ... but only for a couple of hours. Any longer than that and I'll be in major pain. I have them in black and white. Needless to say, my shoe collection is TINY. Less than 10 pair total for this chicky. That's not say I haven't spent a fortune on shoes. Trying to find some that don't hurt. I try them on in the store. Walk around in them. Jump. Run. They seem good. Then, by the time I finish wearing them for the first time, I want to cut my feet off and beat someone with them. So, to Good Will they go! UGH!!! So, anyway, the foot thing is getting annoying. Just one more thing to have the doc check out when I visit next month.
My knuckles hurt at some point everyday. That's nothing new. With my hands curled the way they are, there's just going to be some pain. It's all so mild though that I'm not sure I really notice it anymore unless I think about it. Now, let me bonk a knuckle on something and that will make me yell. Usually colorful language too. :-(
So, last, but certainly not least ... the digital ulcers. #$%&##^%!!! I had one on my pinky and one on my middle finger that have both been there for quite some time. A couple months, maybe. I finally got them all healed up and BAM, there's one on the other pinky! Now one on my left index finger. AND ... I just noticed a few hours ago, ANOTHER one on my middle finger. Right below the one that just healed. UGH! These are the worst. They come from the knuckle being rubbed against things when I'm using my hands. I keep them covered with bandages, which seems to help the healing process and protects them a bit, but they still get bonked on everything and cause some major pain.
Aside from those, it really HAS been a quiet week, health-wise. Just trying to keep on movin' on with the feet and fingers. Overall, I feel good. The weather is HOT, but feels so good to me. As long as I'm not out in it too long! Yoga is awesome and I think it's helping. Riding therapy was great, but is on break for the summer, so I'll have to find something else to do.