Tag Archives: wellness

A Big Deal

Today I wore a short sleeve shirt for the first time in almost seven years.

Yes, you read that correctly: seven years. For a very, very long time, my arms have been either too sun sensitive and/or too rashy/beat up/bloody to wear anything other than full length sleeves out and about. Today, they are not perfect, but I wore a t-shirt to work without thinking much of it. This is a big deal to me.

(Actually, my outfit today was a t-shirt, shorts, and flip flops, with my hair up in a pony tail. I got multiple compliments on my appearance from my students, which made me laugh. I never dress this down for work, and apparently they think I should more often. ha!)

Thanks to phototherapy, my life is much easier right now. My legs and feet are practically PERFECT. I can’t stop touching and staring at them. The rest of me still isn’t all that great, but I accept small victories and am cherishing these better days.

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Extra, extra! (Blogs to share)

I’ve mentioned recently that I’m struggling with my skin again. Really, really struggling. I look and feel like I did many months ago, which I thought wouldn’t or even couldn’t happen again at this point. Pfft. Silly me. Of course it can happen again. This is the most unpredictable thing in the world that isn’t over til it’s over. And I knew it wasn’t over.

Anyway, even though it may not seem like it to some of you, I really don’t talk or write about all this very often. After thinking about it and experiencing it all day every day, I find that I just don’t have the energy or desire to spend much time writing about it.

But, luckily, others do a much better job documenting their experiences going through topical steroid withdrawal online.  There are so many other blogs out there right now written all about this by people going through it now, parents of children going through withdrawal, and people already healed (the best!).  Along with the forum, these blogs have been a great resource for me, mainly to keep reassuring me that I’m normal, I’m not alone in this, and that it will end. I have read so many incredible posts that pinpoint exactly what I’m going through, as well as how I think and feel about it. In some ways, even though we don’t know each other personally, we are the only people who really understand one another. I’m grateful for the internet. 

I read this post tonight by Leslie from pinklikeabeacon, and I wanted to share it because I decided it’s exactly what I’d write, too. I think you should read it. 

This is another good one by Brittany from A Little Itchy. She wrote this a couple of months ago, but I just re-read it and think it’s perfect.

And there are so many others, really. I’m just sharing a couple I came across tonight.

If you want to check out some other TSA/W blogs, here is a big ole list.

 

And many more! More and more blogs and ITSAN members are popping up every day, too, which means the word is getting out. Yay!

 

Eight Months

On October 20th, I took this picture:

On October 24th, I took this picture:

Whoa, Nellie! This is what we call “the ooze.” It feels even worse than it looks.

And here is a picture of my face on November 14th (which is about what it still looks like right now):

The past eight months have certainly been a roller coaster (and I’m certain the ride is nowhere near over), but I am currently having the longest period of “feeling decent” that I’ve had since before I started my withdrawal. The other day, I even put on my wedding ring for the first time since May. My fingers had been too swollen for it to fit. While it is still tighter that usual, at least I can get it on! And one more thing: I hardly even think about my sun sensitivity at all anymore. I was telling Chris last night that I’ve already gotten used to not worrying about walking from the house to the car unprotected with sunblock or a hat, or from the house to work, or in the car, or while out and about on overcast days. (I’m still hesitant to go out in full sun without a hat, but that should be possible when all this is over, too!). It’s amazing how much lighter my life feels not having to worry so much about that anymore. And to think my doctors thought this was an allergy I’d just have to deal with. Psshhaw!

I’ll have to remember these encouraging signs if/when things get tough again. More and more, I am so confident I am on the right path to getting better SOON!

A Walk to Remember

[World’s cheesiest title after the world’s cheesiest movie (that I didn’t see…).]

For the past three and half years, my skin has been extremely sensitive to the sun. My face has been so sensitive, in fact, that even a thick application of SPF 60 and a wide-brimmed hat might not protect me from a sunny day spent outside. (SPF alone certainly would not, even on a cloudy day.)

And don’t even get my started on car rides! Do you know how much UV light makes its way through all those windows? I spent many-a-car-ride hiding under one of Charlotte’s blankets in the back seat. I did this out of necessity, folks, not because I wanted to look like a weirdo. I experienced too many burns post car ride before I figured out that was my problem.

When I say burn, a typical sunburn is not exactly what I mean. It’s more like an eruption. A bumpy, oozy red eruption on my chin and/or cheeks that took a day or two to calm down. It itched like crazy and took a heck of a lot of willpower not to claw my face off until the “burn” subsided.

Even though the doctors agreed the symptoms and severity I described to them were unlike a typical sun allergy, that is what they told me I had. They told me I developed an allergy, as anyone can to any thing at any time. I was told to load up on the SPF and cover up (Duh. I’d been doing that.), but that’s all the advice and interest they took in the matter.

For me, this was devestating. It was changing my entire life. It wasn’t just that I couldn’t take my daily walk or run (which I LOVED), but that I couldn’t walk around downtown, sit out in my back yard, go to festivals or football games, or even walk to my car without a nagging worry that I was going to pay for any of it later. And since I quickly learned that most often I did pay for it, I stopped doing pretty much anything outside for the most part.

This was the hardest part of it all – the realization that the simple things I enjoyed doing were slipping away from me. It wasn’t about feeling self-concious about the way my skin looked anymore, but rather how my skin was preventing me from living the life I wanted to live. I’ve spent a lot of time saying no to things, a lot of time indoors, a lot of time thinking that I won’t be able to ever to do this or that again. In the beginning, I mourned the loss of my former life with countless tears. As time has passed, I don’t cry as often. But I’ve never gotten used to it.

This brings me to the purpose of this post: My doctors were wrong.

Late Saturday afternoon I was feeling decent after an iffy morning. One thing I’ve learned through all this is that when I’m feeling okay, I better seize that and go do something. So I pulled on a hoodie, slapped a leash on Buddy, and walked him to a wooded nature park about a mile and a half up the road. Chris and Charlotte met us there, and we strolled along the path through the woods as a family of four. Charlotte walked the entire way, and we stopped to listen to the leaves rustling through the trees, dig our toes in loose gravel, and stomp across the bridges. (I even taught Charlotte how to do lunges, which I really should have gotten on video.) It was perfect.

Charlotte looked cuter than words bundled in her adorable winter coat, white mittins, and kitty hat. I almost couldn’t stand how happy I was. I was out without sunscreen. I wasn’t wearing a hat.  And I wasn’t worrying about burning because I knew that, this time, I wouldn’t.

Here’s why: I have slowly been becoming less sun sensitive since June or July, thus proving that the reaction I was having was not a UV allergy after all. In July, when Dr. Rapaport told me that my sensitivity would go away, I hardly believed him. But another thing I’ve come to realize through all this is that I’ve got to trust any opportunity I have for hope, because it makes a difference. Once again, the medicine I was using to treat and prevent my “sunburns” had actually been causing them in the first place. Now that I’ve been off that particular cream since May, my skin is slowly reclaiming some of its normalcy. I still have a long way to go, but this one improvement has given me the hope and encouragement to keep going and have faith that I am doing the right thing.

Not me. But soon, I hope!

(Read more about Topical Steroid Addiction here and here.)