My lovely wife wrote a blog post about being a caregiver for someone going through TSW and what it is like on the other side of it. Click here!
Skin seems to be recovering from the last mini flare I experienced. I shed off a layer of skin earlier this week – something that rarely happens anymore. My skin is looking better and better!
Some more good news over here… I’ve slept without boxing gloves three nights in a row!
Have a great weekend everyone.
Hello, January 14th was my 16 monthiversary. Things are pretty much the same, slow and steady improvement with a few minor bumps in the road. While the rest of the world is frozen over, we are dealing with hot, dry weather. It doesn’t look like it is going to let up any time soon. Saturday was about 4% humidity and in the 80s. My skin is a little pissed off about it and as a result, I’ve had really dry, cracked skin and some eczematous breakouts. My legs have been struggling a bit. I guess I had a “flare” last week.. I didn’t take any pictures, because it didn’t really seem very noteworthy. Basically, I got splotchy pink and my worst area (sides, shoulders and arms) got red in very small areas. I’m talking about maybe 2 inch areas. I did get some ooze for the first time in over a month.. there’s this little spot on my ankle that is oozing. I’ve been wrapping it up and it finally seems like it is drying up. I forgot to take a picture of it and it is all bandaged up now so I can’t really get to it.
Itch is still more like a dry skin itch. I imagine if a person not going through TSW who had sensitive, dry skin would be suffering through this too. C has alligator skin – nothing bothers her- so her skin has been fine, but she has been getting nose bleeds. The heat isn’t bothering me as much – I just can’t hang out in the kitchen for too long with the oven on. Over the summer, we couldn’t use the oven because it would cause me to overheat and panic.
Here are some lovely pictures C took of me this morning. My arms are still a little irritated. I was looking at old pictures of myself on Facebook and zooming in to look at my arms. For years before I started my withdrawal, I always had a pinkish rash all over my arms. At the end of this, I fully expect I will still have some eczema, especially when it is dry outside. I guess my arms are starting to look the way it did when I was still on steroids, just slightly more dry. Also, you will see I am wearing a watch. I just started wearing it again- my skin was too swollen to even get it on. Hooray!
I know a lot of people are having a hard time right now. Tears are normal and my advice is to let it all out. I rarely cried before TSW and all of a sudden I was in the depths of despair. I tried to hold on so tight, I tried to hold it together. One day, it was like a dam broke and I couldn’t stop being emotional. After a good cry, I often felt a lot better. Sometimes, the next day, my skin would even look better. TSW sucks, it is a bitch, and it is painful. It is ok to be sad. Let it out. Hang in there skin friends.
Things seem to be progressing over here with some small bumps in the road. Thank you for all of the lovely comments on my last few posts! I’m still just taking one bath a day and most days I’m very dry with red splotches. I can’t remember the last time I had a *flare*. I guess probably about a month ago?
On Saturday, I went on a hike with some friends and the little one, Star. I broke out into an insane sweat and my skin got a little irritated. I tried to just rinse off in the shower, which set off some moderate nerve pain in my sides. I started the bath and soaked for 30 minutes and the nerve pain continued. When I got out, I laid on my huge ice pack (Check it out here – I definitely recommend it! http://www.amazon.com/gp/product/B0013YCBK4/ref=oh_details_o01_s00_i00?ie=UTF8&psc=1). The pain subsided after about an hour, along with the redness. It seems like my sweating is still irregular as sometimes I don’t sweat much and other times it just pours out. It also still irritates me skin and causes temporary redness.
As you can see below, my back is doing pretty much the same. Mostly just splotchy red. The small spots on my shoulder seem to “flare” every week or so. They don’t ooze or anything, they just get red and itchy for a day, then really tough and rough for a day, and then they scale off. C says my back looks like it did when she would put clobetasol on it. I think my skin is getting close to where it was towards the end of my steroid usage.
I also wore SHORTS on the weekend!!! I shaved my legs.. which took about 30 minutes and two razors. My legs aren’t perfect- they are still pretty dry and itchy, but there is barely any redness. Hooray!
Hope you are all having a great flare free day!
Here are my legs over the weekend and a picture from a little over a year ago to compare…
I am happy to report a few things:
1. I haven’t had any ooze in weeks. Last night, I slept just on the fitted sheet, without my “oozy sheet” that I had to change every night!
2. I have had only one bath a day the past few weeks!
3. I went out for New Year’s Eve and stayed out until 4 AM! And it didn’t cause a flare!
4. I didn’t stay home from any social obligations because of my skin!
5. Someone told me my skin looked beautiful!
6. No nerve pain or deep itching in months!
7. Moving doesn’t hurt!
8. No Vicodin in over a week!
Things seem like they are FINALLY IMPROVING!!!! Of course, I am cautiously optimistic and secretly (or not so secretly) afraid that I am going to get bad again. I feel so much better and like I might (knock on wood) be at the end of this. Hopefully this year brings healing to all of us!