Last night, day 68, was bad. The oozing started once again on my neck and it was so itchy and uncomfortable that I couldn't sleep. Though, this flare was better than day 60 .. Day 60 has honestly given me a bit of PTSD. Last night (or early this morning) I sat in the recliner with a fan on me for some time and put an icepack on my neck. After about 10 minutes, I pulled the icepack off and my skin came with it. Yes, my skin peeled off onto the ice pack. Then it was so uncomfortable and itchy. FINALLY, at 6am, I fell asleep.... and on cue, leah woke up. I ended up getting some good sleep because Chad went in late, though.
Before I get into the garbage, Maddie (my almost 4 year old) asked Grammie to take her to get me something for mother's day. They went to old navy and got me some comfy pi's. This is the shirt she picked out.
I needed this.
Ok, here is a recap of the last week...
Day 65
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| I wake up looking like a version of this most days. Just lovely. |
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Day 66
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| The flakes on my shirt..on my bed... on my couch... they're a common occurrence now a days. |
Day 67
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| My neck gets SO stiff from holding it still and having no mobility from the dry useless skin. Causes headaches. Every once in a while I HAVE to turn it and pop my neck. This is the result. |
Day 68
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| I woke up and within an hour my eyes were itching SOOOO badly. All I could do is ice them to stop the itch. |
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| My neck itches SO badly. It went from dried to oozy in a matter of minutes. SO repulsive. SO annoying. |
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| Really ready for that cut on my eye to go away. ALL of this because of steroids. |
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| Basically no skin on my neck. |
Day 69
I'm seeing improvements and strength in my skin, but it still looks TERRIBLE. ALL OF THIS IS BECAUSE OF TOPICAL STEROIDS!!! THAT THEY DOLE OUT LIKE CANDY!!! It's criminal.
CELEBRATIONS/IMPROVEMENTS:
- It's not day 60!
- My girls are at their aunt and nana's this weekend, so i can rest and spend time with the hubs.
- I'm 2 months in!
- I'm either in a calm period of a flare or the flare is ending, so at this moment, I feel not terrible.
- Mobility My face is still stiff, but not like it was. My eyes were SO thickly crusted that I couldn't close and open my eyes appropriately. I also had to use a baby spoon because I couldn't open my mouth enough for a regular utensil. I still can't move my head fully, but more than I could. And I can make more expressions than I could.
STRUGGLES:
- The ooze is back...although, not at the moment.
- I don't see the end in sight. It's really difficult to wake up day in and day out seeing a new bad with the good. It's so frustrating.
- Sleep. Before 3 am WON'T happen for sleep without meds and they give me headaches after several nights.
- Energy... SO low. Feel exhausted all the time
- BO... So disgusting. Typically only when I'm flaring.
- Real clothes. I seriously want to get cute and go out! I want to wear something other than PAJAMAS.
- Playdates... Just want to go out with a friend and their kids...
- DATES
- Laying my head on the pillow... if I put my face on it I swear and itch. Truly, it's torture.
- Going to sleep without anxiety...because do the discomfort and waking up itchy, I don't want to sleep.
- Waking up to the same face
Happy healing...
Jen
Stay strong Jen, we are with you. Those pics reminded me of my withdrawals too.
ReplyDeleteTake care!
Yeah, it's dehumanizing in a big way...
DeleteChurchill said "When you're going through hell, keep going" it's my favourite quote at the moment. I'm in month ten, and still going. Those first few months are the most intense, my heart goes out to you xx
ReplyDeleteI'm hoping this is the most intense... It's relentless.
DeleteStay strong. I got a flare up last week. The itch was weird, feels like ants brawling between my skin and bones. It feels itchy but I cant itch the itch off
ReplyDeleteIsn't it delightful...
DeleteHi Jen. My eyes mouth are and ears cleared up around month 5 and made things a lot more comfortable! I hope it eases for you soon. xx
ReplyDeleteHers hoping!!
DeleteJen, you are one brave, selfless lady to post your pictures--in all the TSW glory-- in order to help show others the dangers of TS use! I love your posts and you just make me laugh (with you, not at you,) which is much needed in my home. You're a beautiful person. Stay strong, keep the faith, keep the sense of humor. :-) Rosemarie
ReplyDeleteThere was a time when I would NEEEEEVER do this, but I know how helpful the pics of other healed and hurting bloggers was for me, so I wanted to pay it forward.
DeleteAnd if I didn't have laughter and jokes, I would've surviving this! There was a time when I couldn't then my neck. My husband called me batman hahahaha. And when my face gets super tight I make faces to try and make my husband laugh... At which point we both laugh.. At which point I make a ridiculous face trying to laugh but not being able to move my face... And more laughing haha
DeleteI'm really sorry to see this over and over with so many and will always remember the agony of this trip. :( Hope you find ways to cope and keep the faith in that healing day. xx
ReplyDeleteI just wanted to say that I just found itsan and read some of your blog. My two sons 4 and 2 are going through this. The 4 yr old has it mainly on his face and your pictures show that he has the same thing going on. Thank you for creating your blog and I hope you heal very soon. You have helped me just by posting your pics.
ReplyDeleteOh, mama! Just as hard for you... Maybe harder. This comment alone is why I posted pics. I found so much comfort in seeing others. I also want to document what these drugs did to me: it's a tragedy.
DeleteHi stay strong. Had the same withdrawal when I used to live in Seattle. (The trees and pollen was to intense and not getting enough sun) Now in Sunny California. It helped a lot since I moved. I even stopped eatting chicken and eggs and extremely see the difference. Where do you live? Any pets?
ReplyDelete