Tag Archives: itsan

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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Thanks guys…

Before I begin on this post: A big thanks to who have supported me this week regarding my last post. I was clearly venting, and do not always feel so down in the dumps, but it happens enough to sometimes make my life feel a little hard. But all those comments and phone calls really lifted my spirit, and I had a great rest of the week! It sounds a little unbelievable to me that simply reading the words “hang in there,” or “I’m thinking of you,” can make a difference in my state of mind, but I’ll take it. I should ask for your cheerleading more often…. 🙂

In terms of how I’m feeling physically, I’m no better than I was on Monday. In fact, I’m actually a little worse (blech.) BUT I’ve changed up my morning routine a bit this week, and it’s made a difference in my daily productivity. It’s hard to explain without getting into too much boring detail, but it’s been a really positive, albeit simple, change. So even though my skin has been a huge pain in my itchy butt, I’ve had a better, happier week. Thank you for helping me through it.

One big thing that’s been going on around here are Charlotte’s first swimming lessons! She is in a parent-tot class so she can swim with Daddy. I’ve been watching from the bleachers and getting a real kick out of how funny she is. Unfortunately, we are not allowed to take pictures at the pool, but I did get this very pathetic video (because I didn’t know the camera was in movie mode) before I was informed of this rule (and then grudgingly put my camera away):

Yeah, that’s about as lame as it gets.

Oh well. Next year I’ll pull the I didn’t know act on the first day of lessons and try to get an actual picture.

Charlotte is a little iffy on how she feels about her lessons. She is very cautious when it comes to the water (and always has been), so she doesn’t like trying things that get her face or head too close. She says all done at least twenty times during the 45 minute lessons, but at least she never cries or complains when we don’t actually get her out of the pool. Even though she isn’t a fan of everything she has to try, she has been a real trouper about it. I think the reason she sucks it up every day is because she LOVES the five minutes of free playtime at the end of each lesson. There is a basket of silly toys and she’ll talk about playing with the t-rex or the seahorse or the fire engine for the rest of the day.

My favorite moment from lessons this week was when I came in late on Tuesday morning. I walked by her group in the pool when Chris was gliding her across the water on her tummy. When she saw me her face lit up, and with the biggest grin on her face she called out, “Look at me, Mama! Look at me!” She absolutely shows off for me, and it’s pretty darling.

We have one more week of lessons beginning Monday and our goal for Charlotte is to have her blowing bubbles in the water. They call it “motor boating,” and there is even a song they sing for it (of course). Charlotte will have a chance for some extra practice when we visit Amy and Bob at their hotel pool this week. We’ll try to recreate swimming lessons there so that I can get pictures and video. Crazy Mom Alert!

TSW Fashion

I have a closet full of clothes I don’t wear. I won’t wear. I can, of course, but I won’t because I don’t want to ruin them with my greasy, overly moisturized skin (which quickly returns to the dry dead zone). For the past year, I’ve been rotating the same ten or so outfits: jeans on the bottom and t-shirt/zip-up/cardigan on top. And I’m really picky about that t-shirt. It can’t be one I like even remotely. I have to hate it, which is why you’ll usually find me in one of Chris’s white Hanes tees (size large). You know, the ones that come in packs of six at Walmart. Chris bought them for himself ages ago to wear under sweaters in the winter, and I’ve adopted single every one of them to wear every single day. It only took me about six months to decide that I should do something about the fact that size large is way too big on me. So what did I do? I cut off the bottom of the shirts with some kitchen scissors. Now I really look awesome. The one I wore today was cut too short to tuck into my jeans, so it hung out the bottom of my City High zip-up sweatshirt (casual Friday!). I guess the kids at school are used to my “fashion” because no one even said anything. I was planning on telling them that I was just doing my part to bring back the eighties if they did ask.

So, I’m having fashion issues lately. It’s a good thing I don’t.care.at.all. Is that bad? Probably.

Here’s what I’m wearing on my arms tonight:

DSC_0036

It’s the double sock look. Cut the toes out of a pair of knee socks and a pair of ankle socks, and you can have this look, too! Frankly, I’m pretty proud of this idea because it means I don’t have to have Chris wrap my arms in gauze and ace bandages every morning. That was the pits. Toeless socks = way easier! And washable. Big bonus.

So, that’s my little Friday night update. I’m about to watch a movie with my man dressed in my cute little wife pajamas. Wait, did I say cute little wife pajamas? What I really meant was white tee, sock arms…- Yes, that’s exactly what I meant.

 

 

*Kind people have actually bought me comfy clothes to wear through all this. Clothes that I am supposed to not care about ruining, or whatever. But so far all those clothes are too cute! I keep telling myself that I’ll want to wear this or that when I’m better, which means I certainly can’t wear them now. Chris thinks I’m completely insane for this, and I’d have to say I’m beginning to agree with him. Ah well.

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!

 

Ouch

Month 13 off the ‘roids (ha) hasn’t been too kind. My skin took a few steps back in recent weeks.

See my arms:

DSC_0001

DSC_0003

Much worse than my last update, right? I KNOW.

These pictures show my arms recently “greased up” with all my moisturizers. Otherwise my skin is dry dry dry, even more so than usual (which hardly seems possible to me) . I don’t have pictures of the rest of my body, but you can get the idea.

Some people I’ve met on facebook and the ITSAN forum describe the withdrawal like a roller coaster, and I’ve heard others say that healing “takes us one step forward and two steps back.” Others are a bit more forthright: this itchy bastard fucking sucks. I’d agree with all those people.

When I regress like this, the first couple of weeks are the most difficult. This is because every single time I get even a tiny bit better I become used to it instantly. After the initial shock and discomfort, I start to grow accustomed to my new normal until it all clears up a little more again.

Despite how long this is taking and how frustrating the unpredictability of it is, I feel more and more confident that all this will end for me. Sometimes I think about the if onlys and feel mad at myself. For example: if only I’d started my withdrawal when all this started 4.5 years ago I’d be long done with this by now. Or if only I hadn’t taken x, y, and z drugs along the way, because who knows how messed up my body’s going to be when I’m fifty.

Oh well. Hindsight is always 20/20. At least I can say that I really didn’t know. I really, really had no idea.

 

 

TSW: One Year Update

Disclaimer!

This post contains pictures that some may consider graphic. If you are here to see cute pictures of my daughter and do not want to read about my withdrawal from topical steroids, click away and check back tomorrow for something more lighthearted. Yes, I am nervous to post such personal pictures of myself.

The middle of March marked one year since I’ve gone off steroids and started this long (miserable) withdrawal process. And since it’s the last day of this lion of a month, I think I better an update on my progress over the past year.

It’s difficult for me to put into words all the thought and emotions that go along with this experience so far because my thoughts and emotions are all over the place. On one hand I’ve felt exhausted, scared, worried, downtrodden, depressed, cynical, envious, guilty, and anxious (to name few). But on the other hand, and sometimes at the same time, I’ve also felt hopeful, excited, relieved, lucky, lighthearted, joyous, and optimistic. You name it, I’ve lived it this past year.

I knew I wouldn’t be healed after one year, and if I had to guess (based on my withdrawal so far and my history with steroids) I’d probably say that two and a half years is my number. But I am hopeful that the very worst is behind me.

My withdrawal started off slowly compared to most people I’ve heard about. This is probably because I was still on the immunosuppressant that was supposed to help my skin back before I knew about TSA. When I did stop taking the drug in May, my skin rapidly went down hill. My worst months were July through October. I had a bit of a break with calmer skin in November and December before going through a rough patch again in January and February of this year. In March things started to calm down again, and now we are on the brink of April already! I’m hoping my birthday month is extra nice to me. 🙂 

Here is my one year progress report through pictures:

BeforeArm

March2013Arms BAFace

 

BAChest

BeforeLegs

FeetandKnees

BAKnees

BAStomach

As you can see, I’m looking better, but I’ve still got some healing to do. Let’s talk about that first.

A Work in Progress

The overall dryness and flaking. For me, this has been the most unrelenting and bothersome aspect of the withdrawal. The severity of it ebbs and flows, but so far “my best” is still pretty bad and nowhere near normal. It’s not like a peeling sunburn with large pieces of dead skin hanging off my body at this point (though it certainly has been at times), but rather an utter lack of moisture that seems to originate in the core of my body. No moisturizer fixes this. My body is just not producing oils to keep my skin smooth. As a result, there are fine lines covering most of my body, and my skin has a dusty, ashy quality. When I take my clothes off, I can shake out teeny tiny particles of skin that have rubbed off. It’s disgusting and probably TMI for all you readers, but it’s reality right now. Let me tell you, I do a lot of cleaning and vacuuming these days, so you don’t have to worry that my house is gross. Anyway, for this reason I still have to spend a lot of time taking care of my skin throughout the day, and mornings are typically stressful and rushed. I wear frumpy clothes every day because I don’t want all my moisturizers to ruin all the clothes I actually like. I’m waiting for Clinton and Stacy from What Not to Wear to ambush me any day now….

Itching. It’s strange because lately my legs have been itching me like crazy yet the skin there is better in every way than it is anywhere else on my body. Could that mean this late-stage itch is a sign of healing…? I don’t know. Nothing about this makes any sense. Everyone knows that dryness causes itchiness, so there’s that, too. At this point, I don’t even notice half the time I’m scratching. If you’ve spent any time with me over the past few years, I’m sure you’ve seen me in action. Luckily, itching rarely keeps me up late at night or wakes me in the middle of the night anymore. THANK GOD. That sucked.

Bedtime. I still struggle with bedtime because it’s a major source of anxiety for me. Even though itching isn’t keeping me up, I still have a hard time falling asleep at night and an even harder time waking up on in the morning. This is a mental thing. In bed is where I do most of my deep thinking, most of my worrying, most of my wondering will I ever ever ever get better?  I’ve grown to despise and totally dread mornings because I hate the whole routine I have to go through to get ready. It’s not as bad as it use to be because my overall skin is better than it was, but waking up in discomfort and immediately having to deal with it in such a physical way is not a fun way to start a day. 

Getting back to being Katy. I’m realizing more and more how much all of this has affected me emotionally. It’s crept into more parts of my life than I’d like to admit. I’m more anxious, more OCD, more withdrawn, more “hot and cold,” than the real me was. The last ten years haven’t always been easy for me, but the past 4.5 have really sealed the deal that I’m probably still going to be dealing with this emotionally even after my skin has healed. I’ll address that issue when I get there though.

 

Okay, so now for the positives. It’s much more fun to get the good news last!

 My hands! Even when I was on steroids and all the drugs, my hands never looked much better than they do right now. Once the withdrawal process started, it was a rapid decline that ended up at their worst at the end of July. The ugly truth:

Beforehands2

 BeforeHands1

Look at the elephant skin! Look at the redness and peeling! Look at the swelling! I couldn’t wear my wedding ring for eight months due to all that swelling. But now my ring is back on and back to rolling loosely around my finger. (And my ring is a whopping size 4, so the fact that it’s loose again is a true testament to my healing.)

Here are my hands now, still looking dry and wrinkly, but no longer red, swollen, flaking, and itchy!

DSC_0044(While my before pictures don’t make me look as bad as I did in real life, this picture of my hands now actually make them look worse! Gah!)

Sleep. As I mentioned above, I sleep soundly through the night most nights these days. This has been true for a while now actually. I would say around six months into my withdrawal is when I stopped waking up multiple times throughout the night due to the itch. I know many people struggle with sleep much longer than I did, so I feel pretty lucky in that way.

Mornings. Yes, I did just rant about how much I hate mornings. I still do, especially on work days, but not as much as I used to.  When my skin improves, my mornings improve. As my skin is right now, it doesn’t take as long to care for each day and it isn’t painful when I wake up. I can move my face. It’s no longer unbearable. Annoying, itchy, frustrating – yes. Painful, tear-inducing, soul-destroying – no way. I’m getting better, and my mornings are, too.

Redness and elephant skin. I would say my skin tone has gone from tomato to pastel pink, depending on the body part. My upper body is pinker than my lower body, and this has always been true no matter what shade of red it’s been. People who don’t know me or just see me in passing probably don’t notice anything unusual about my skin. The elephant skin around my knees, elbows, and fingers is slowly going away, too. This is good because wrinkly knees made me feel 90 years old.

My legs. They are still a bit cut up, and like I said, they can itch like crazy, but the skin on my legs is smoother than anywhere else on my body. The moisture is returning there for sure (I am significantly less dry on my legs), and this gives me hope that it will spread to the rest of my body eventually, too.

Sun sensitivity. I’ve written about my extreme sun sensitivity here before, and I’m happy to say that those days are still behind me. I don’t break out in a rash the moment any light touches my face. If I have a reaction to the sun, it’s going to be a normal sunburn because I have fair skin rather than an oozing, spreading rash because I have a “sun allergy.” Dr. Rapaport says that the sun is wonderful for late-stage healing, so I am excited to use the sunshine for my benefit this summer. This aspect of my healing has truly been a life-changer for me.

Life, in general. My skin isn’t holding me back as much as it used to. I’m getting out, being social, and taking Charlotte to the park. I wouldn’t say it’s perfect yet, but compared to one year ago, life is good. If I never improve any more, I wouldn’t like it, but at least the thought doesn’t make me want to jump off a cliff or anything. I could still be happy person, at least most of the time.  🙂

DSC_0091(This was Father’s Day last year. As you saw in the pictures above, my skin was in an awful state, and I felt every bit of it. I definitely didn’t want my picture taken, but somehow Chris snuck me into this photo of Charlotte. I like it not because the distance prevents one from seeing what things looked like up close, but because my face shows that I had a really good day regardless of it all.)

 

Any questions about topical steroid addition and withdrawal or my experience? Leave a comment or email me! katherine dot bremer at gmail dot com.

Baby Steps

I’ve been home with Charlotte for the past two days snuggling on the couch, watching movies, reading library books, and taking three hour naps (her, not me, unfortunately). Charlotte has a cold that’s been knocking her out during the day, and I’m, well…you know. Boo.

So, there’s not much to report around here. Amy came for a visit on Sunday and stayed overnight, Buddy got his teeth cleaned by the vet, and Chris has been Super Dad taking care of pretty much everything.

Oh, and Charlotte pooped on the floor today. And peed. Twice.

We’ve still got a ways to go in the potty training department.

 

Thanksgiving Recap

We just got home late this afternoon after a wonderful five days with the Doran family. We had Thanksgiving with Chris’s dad and his wife, her sons, his brother Mike and girlfriend Steph, grandma, aunt and uncle and some cousins. Mike just moved into a brand new home, so we all got to enjoy making a mess of his perfect kitchen.

Yesterday we had a tasty pasta Thanksgiving with Chris’s mom and her husband, and Mike and Steph.

It was a very delicious five days. Also, I have a stomach ache because I didn’t eat nearly enough vegetables. Salad for dinner tonight.

I am very thankful for so many things in my life. My beautiful, healthy daughter. My best friend/loverboy/husband. The best ever family in the world ever, the fun, funniest, bestest friends in the world ever. A renewed hope for my future thanks to this doctor and this group of amazing warriors. A job that I love. A warm home and plenty to eat.

I am very, very blessed and do not take this for granted.

I hope everyone had a wonderful Thanksgiving filled with food, fun, family, and friends!

(Sorry, no photo! I have reached my max on free space here and am due for an upgrade! I guess I need to start paying up!)

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.)