Please check out the new section to the right - "JHU Scleroderma Center Newsletters"
The Scleroderma Center has released their first newsletter and a copy can be found in this new section of the blog.
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!
Friday, October 22, 2010
Saturday, October 16, 2010
Uh-oh ... Raynaud's
Well, Raynaud's nights have hit the Tampa area. The weather cools down quite a bit at night now.
I found out just how much after leaving a Sugarland concert tonight.
I wore jeans, flip-flops, and a short sleeved shirt. Forgot my sweatshirt. Forgot my mittens. I remembered them all summer when we went to indoor events. All summer I remembered that the a/c is a sure-fire way to kick off an episode. That's a part of the reason I don't work right now. The cool office temps and/or a/c are not my friends.
When we left for the concert it was in the 80s. BEAUTIFUL weather. I did think to grab my Snuggie out of the car when we got to the concert. Just in case. I ended up using it, too. By the time we left the concert, it was 63. By the time we got to the car, my hands, toes, and 1/2 way up my fore-arms were cold. Not color changing cold, but right on the border. A few more minutes and they would have been purple.
So, I guess now I need to start remembering to pack an extra change of clothes whenever we leave the house.
Oh, and I guess I have to go buy shoes. Sneakers don't go with everything.
I found out just how much after leaving a Sugarland concert tonight.
I wore jeans, flip-flops, and a short sleeved shirt. Forgot my sweatshirt. Forgot my mittens. I remembered them all summer when we went to indoor events. All summer I remembered that the a/c is a sure-fire way to kick off an episode. That's a part of the reason I don't work right now. The cool office temps and/or a/c are not my friends.
When we left for the concert it was in the 80s. BEAUTIFUL weather. I did think to grab my Snuggie out of the car when we got to the concert. Just in case. I ended up using it, too. By the time we left the concert, it was 63. By the time we got to the car, my hands, toes, and 1/2 way up my fore-arms were cold. Not color changing cold, but right on the border. A few more minutes and they would have been purple.
So, I guess now I need to start remembering to pack an extra change of clothes whenever we leave the house.
Oh, and I guess I have to go buy shoes. Sneakers don't go with everything.
Wednesday, October 6, 2010
I'm o.k. with ALL that!
Appointments went fan-tab-u-lously. Yep, that's a word. It's my word.
Cardiologist appointment was great. EKG showed none of the irregular beats I was having just a year ago. Thank goodness! Apparently the new lifestyle really IS awesome! So, now we're just in the monitoring mode for the heart. I go back in 6 months for an echo and another EKG and to chat with the good doc!
Rheumatology went just as well. I feel the best I've felt in 8 years. We're staying the course with medications, as they keep the aches and pains and possible flares at bay. I've missed a prednisone and the aches and pains are very present by the next day when that happens. So, we've decided to keep it in the routine. Immune-suppressing meds get to stay in the cocktail too. Doc says we don't want to get overexcited, remove the med, and let the Sclero creep back in. I'm o.k with that.
PFT results are holding steady. The results show the past damage that we'll always see, but the function isn't decreasing more than it already has. I'm o.k. with that too!
We discussed the lung rub and how it creeps up after a long day, over exsertion, PFTs, etc. This is to be expected. It will likely always be there. Just another reminder of the damage that's been done. As long as it's tolerable and I know how to deal with it, we're good. As long as it doesn't start causing crippling pain again .... I'll be o.k. with that too! If it does, I know who to call!
Then there's my crappy-ass hands. They don't do a lot of the things they used to do. They slow me down a lot. But, they still let me do the things I need to. They won't ever get better. They'll never be straight again, but if I keep moving them, maybe they won't get worse. That would be nice. So, I'll keep on moving on.
If the doctor had to "predict the future" he sees a "long and happy life ahead with a 90% chance of no major flare ups." As sick as I've been since the beginning and his experience with the disease, hopefully, we're over the biggest hurdle and things will be mellow now.
Is that a guarantee? Nope. Do I hang all of my hopes and dreams on that? Nope. Do I trust my body? Absolutely not! I do, however, know that I feel good today. So, we'll plan for tomorrow, but live for today!
And, yep, you guessed it, I'm o.k. with that!
Cardiologist appointment was great. EKG showed none of the irregular beats I was having just a year ago. Thank goodness! Apparently the new lifestyle really IS awesome! So, now we're just in the monitoring mode for the heart. I go back in 6 months for an echo and another EKG and to chat with the good doc!
Rheumatology went just as well. I feel the best I've felt in 8 years. We're staying the course with medications, as they keep the aches and pains and possible flares at bay. I've missed a prednisone and the aches and pains are very present by the next day when that happens. So, we've decided to keep it in the routine. Immune-suppressing meds get to stay in the cocktail too. Doc says we don't want to get overexcited, remove the med, and let the Sclero creep back in. I'm o.k with that.
PFT results are holding steady. The results show the past damage that we'll always see, but the function isn't decreasing more than it already has. I'm o.k. with that too!
We discussed the lung rub and how it creeps up after a long day, over exsertion, PFTs, etc. This is to be expected. It will likely always be there. Just another reminder of the damage that's been done. As long as it's tolerable and I know how to deal with it, we're good. As long as it doesn't start causing crippling pain again .... I'll be o.k. with that too! If it does, I know who to call!
Then there's my crappy-ass hands. They don't do a lot of the things they used to do. They slow me down a lot. But, they still let me do the things I need to. They won't ever get better. They'll never be straight again, but if I keep moving them, maybe they won't get worse. That would be nice. So, I'll keep on moving on.
If the doctor had to "predict the future" he sees a "long and happy life ahead with a 90% chance of no major flare ups." As sick as I've been since the beginning and his experience with the disease, hopefully, we're over the biggest hurdle and things will be mellow now.
Is that a guarantee? Nope. Do I hang all of my hopes and dreams on that? Nope. Do I trust my body? Absolutely not! I do, however, know that I feel good today. So, we'll plan for tomorrow, but live for today!
And, yep, you guessed it, I'm o.k. with that!
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