TSW: Months 14-16

I’ve written this post in my head probably a hundred times since my last TSW post. Why I haven’t committed to putting the words on paper screen yet is simply due to avoidance. By the time I get to write at night, it’s my veg out time. Charlotte’s in bed, and for the first time all day I don’t have to worry about any of my shortcomings as a mom in this situation. The last thing I want to focus on is my skin, so I typically watch stupid shows like The Bachelorette or read pages and pages of lifestyle blogs about people I’ll never know. They’re the guilty pleasures I’ve stopped feeling guilty about because don’t we all deserve an escape? I’ve mentioned how I don’t blog as often anymore, and the deeper reason for this is because I don’t enjoy reflecting on my life as much these days. In a way it feels fake to post sweet and funny stories about our daily life when in reality I’m really struggling to be happy. (There is nothing fake about these posts, I assure you. It’s just that I feel like I am leaving out an ugly yet significant truth to our lives right now by never posting about it.)

I know. Get a grip, right? I have everything I’ve ever wanted – Chris is my dream, a teaching job I couldn’t have hand-picked any better, a house of our own, plenty of food to eat every day, a supportive loving family, and, of course, Charlotte: My everything. These things, these people do make me very happy, every day.

And yet, I can’t shake the blues. They’ll creep up on me on a night like tonight, after I had a good day, and then it just happens. I’m sobbing in the tub, the only place I can cry without my tears burning my face, while Chris has taken over making dinner or doing something else I should be doing instead of crying.

But I did really need that bath because my skin was a mess, like it is every day still. This is what is so hard: I expected to be better than this by now. I thought this summer would be better than last, and so far, it’s shaping up to be much of the same. I’m still trapped inside most of the day, chased away by the sun that is still agonizing me. Last fall, I thought my sensitivity was getting better, but now I’m not so sure any more. The sun, which has been such a great healer for everyone else I’ve “met” online, is my nemesis. I’ve been doing an experiment on my legs this week by spending just five minutes outside every day, and, from the looks of me, you’d think someone slashed my shins and ankles with forks. So what do I do? Never go outside before dark? Tell that to my two year-old. It’s all very confusing and hard to track my progress when it is so back and forth. One night a few weeks ago one of my arms felt really good. But then, the next morning, back to normal (bad) again. What the hell? This is making me insane.

I still believe I am going through topical steroid withdrawals, but now I doubt this is all there is to it. I’m concerned there is something else going on inside of me. Something complicated. Something we can’t figure out yet. I can’t do anything about this, so it’s scary. I don’t want that to be true. 

I am realizing that probably none of this makes sense since I haven’t updated about my skin in two months. Months 13 through 16 have not been kind to Katy. Maybe if we all chant together, get better get better get better, month 17 will be the corner I need to turn.

So anyway, here are lots of pictures I’ve taken over the past couple of months.

This was what my face looked like mid-April through early June:

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The area around my mouth is such a problem zone. It gets so flaky and then I pick it so it looks even worse. I have no idea why this area gets bad, but I’ve read that others experience similar problems around their mouths, too. Sadly, that makes me feel better.

The next series of photos were taken in mid-May, when I tried to get a few minutes of sun late one afternoon after work. Actually, I don’t think I flared any worse after being in the sun that day, but I have every day since then. This sort of answer-less questioning drives me CRAZY.

You can see that I’m red, red, red again. Scratched up and swollen ankles. Skin so dry it wrinkles when I move (see my back).

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Then, this weird thing happened to my inner thighs. It was like a severe wind burn or chafing (but it was not chafing) – so raw and tight and painful. I could barely walk. You can see the red lines on my skin like stretch marks. Thankfully, that went away after only a few days.

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Here’s a picture of Charlotte and me taken around that time. I was never going to post it anywhere because I think it’s a hideous picture of me, but after showing you all these photos, what could be any worse, right?

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(Charlotte, as usual, is adorable as ever!)

At the end of May I got shingles. Shingles! Isn’t that the disease that the 80 year-olds get on the commercials? Yeah, May was not a good month for me.

At least my shingles patch was small (about the size of a quarter), and the pain subsided after only a few days. I’m hoping you can’t get shingles twice, because if that’s true, then I’ll feel lucky that I had it and got it over with. Ha!

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After my shingles started to clear up, my skin rebounded. My hands in particular have been giving me problems this summer after being good for many months. They’re a bit swollen, very red, irritated, and dry. Sometimes the dryness makes my skin crack, like it did here on my hand. (I did not cut my hand. It actually just cracked open like that. This sort of thing sort of blows my mind.)

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The next three pictures taken in mid-June: my back (a big problem for me from the start), my chest (so dry here!), and my arm (lobster red after I probably scratched it).

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*Never mind about the arm pic. It showed up HUGE when I uploaded it, so I took it out. Just imagine a red arm here.

Yes, I’ve been scratching a lot lately. I do so without abandon because I’ve realized it’s not worth trying not to. I will fail trying not to and then feel guilty about failing. It’s impossible to ignore the itch most of the time, and in a matter of seconds, I can undo days of no-scratching. So I let myself scratch.

As a result, my fingernails have taken a beating. Last week, this fingernail split apart. The tip of the nail was still hanging on to the underside of my nail, until eventually it broke off, too. I’m glad I got a picture of this because in a gross way it’s kind of cool.

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So…..that’s my 14 through 16 month update. For all you ITSAN readers, I’m sorry I’m such a downer right now. It comes and goes in waves, so there are good times, too. (The rest of this blog proves that.) That said, the later months have been so much harder emotionally than the early months. But then, I’ve had these symptoms now for almost five years (before I knew I was addicted), so it’s suddenly been feeling like a lifetime for me. Don’t even get me started on “the lost years of my twenties.”

Right. Okay. I’m not going there.

 

Thank you all for letting me feel safe enough to vent.

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27 responses to “TSW: Months 14-16

  1. Sweet Katy ~ You are in my prayers!

  2. I don’t know what to say except I have tears right now. Love you so much, dear Katy.

  3. This TSW sucks, and it sucks that it’s taking so much of your happiness and quality of life. The pain and the itch and the constant feeling ‘down’ is so very real, regardless of all the other nice things in life like family and love. I am keeping you in my thoughts!!

    • Absolutely. Owning and accepting my feelings has been one of the hardest parts of all this for me. Thank you for your comment and support. I love reading your blog and am happy to see that you are feeling so well!

  4. Tears for you Katy, and positive thoughts as well. Love you, sweetie.

  5. P.S. I had shingles too. No fun!

  6. love you friend

  7. tomatoskingirl

    I love watching mindless shows too for an escape. I’m having Geordie Shore marathons at the moment. I think that is a beautiful photo of you and Charlotte by the way, you have a lovely smile. Don’t be too hard on yourself. Xxx

    • Geordie? I don’t know that unless you mean Jersey Shore? haha But I “secretly” love that show, too…even though I’m a 30 year-old MOM. 🙂 Thank you so much for your sweet comment.

      • tomatoskingirl

        Haha we all have our guilty pleasures. My old boss is in his 40s was obsessed with Jersey Shore. Geordie shore is a Jersey Shore spinoff with a bunch of people from Newcastle in the UK. I tried to watch Jersey Shore but didn’t find it funny.. Geordie Shore however is hilarious albeit very rude, I think their accents and their own weird vocab just make everything more funny. 😀

  8. Hi Katy, I’m so sorry to hear about your suffering. I’m so sorry that you are still having such a rough time. I wish I had something to say to make you feel better. Keep on reading those trashy magazines, watching Real Housewives, whatever you need to distract youself! Hang in there… we will all get through this.

    • Thank you, Lesley. It makes me feel better to read any words of support! Especially from others going through this. You know, most of the time I DO believe I’ll get through it, but those small moments of doubt that sneak in are pretty evil. I’m still trying to figure out how to ignore them….

  9. Hi Katy, I’m month 18 (starting to lose count though, you know what I mean..) and your face is similar to mine. I never had lower face, around the mouth problems initially but did notice from some of the blogs that this can be a problem….tsw doesn’t leave much alone. So I can have an inflamed chin, wake up with the whole of my lower face in a shed, bloody lesions under white dry skin flakes, the works. There’s always something on the go there. My hands are a slow project. Please don’t get disheartened, just give it more of precious time. And dont get disconcerted with posts where other people are benefitting from the sun..my oozy face dried up nicely after sun for three days..but reacted poorly the next time. Mad itching last week everywhere, having been out in the sun. It’s just too early for any consistency there. And even if people are on the same time line as yourself, we do vary and have our own healing schedule. One size does not fit all here but we do all heal in our own time. Thanks for posting you face photo, it’s always a relief to see similar symptoms. And the picture of you and your daughter is gorgeous!

    • Wendy,
      You have no idea how much your thoughtful comment means to me. Thank you so much for writing and sharing your experience. I am constantly being reminded to have faith and be patient from those close to me (and from myself, too), but it is somehow even more reassuring to hear it from someone else going through the same thing. When I (rarely) blog about this, I am always surprised by how much better I feel afterward. Thank you so much for stopping by. I hope today is the day you being feeling better for good! 18 months…isn’t is crazy how that time has passed both so quickly and yet agonizingly slow?

  10. Oh dear! I hear you loud and clear! I too often try to compare to others at the same month I am in….but I get encouraged one minute and depressed the next. I just now focus on the overall process and know that my journey is mine alone – every one’s journey is so unique. After reading SOOOO many blogs and stories, I am now seeing patterns in TSW sufferers, but that doesn’t mean there will ever be 2 people identical in their journeys. Charlotte luckily will have few memories of this summer because of her age. Reassure yourself that you will make it up to her next summer! My kids are 7, 10, and 11 and are stuck here at home with me. They go outside every day but it is not the same as me taking them to fun places. I stay inside and watch them from the window wishing I could join them. Hang in there and know that this too shall pass!

    • You are absolutely right, Tracy — just because we have similarities does not mean our experiences will be exactly the same. Our idiosyncrasies can be pretty lonely, though, if we let them.Thank you for sharing your experience and for the encouragement. You are right about my daughter’s age. Since she is so young, she won’t remember much of this, especially if I do improve in a year (i hope i hope i hope!). And there are benefits to your kids being older – they can understand at some level that you are unwell and have the ability to be more independent. Either way, even though we have immense guilt for all of this, I think our kids will be alright. 🙂

  11. Awwww feel better katy. Im sure you will turn a corner soon. The pic of u and ur daughter is super cute.

  12. I admire you so much — not just because you’re strong enough to deal with this every day, but to share it with all of us so openly. I hope you continue to do so, I know for me sometimes just writing (or typing) it all out is therapeutic. We’re all here for you –love you, Katy!

  13. Katy, can I ask how you are with TSW at this time? Thanks

    • Hi Alisa! Yes, I really really need to update my blog! I am starting to do better, finally, after a really horrible second year. I started photo therapy about a month ago, and it is helping. It took me a long time to be able to tolerate any light, though, so I would definitely be cautious if you are thinking of trying it. I am still far from healed, but my life right now is mostly normal. My worst areas are face and hands, and my best spots are my legs and feet (looking close to perfect!). Thanks for asking. 🙂

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