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...
|I wake up looking like a version of this most days. Just lovely.|
|The flakes on my shirt..on my bed... on my couch... they're a common occurrence now a days.|
|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.|
|I woke up and within an hour my eyes were itching SOOOO badly. All I could do is ice them to stop the itch.|
|My neck itches SO badly. It went from dried to oozy in a matter of minutes. SO repulsive. SO annoying.|
|Really ready for that cut on my eye to go away. ALL of this because of steroids.|
|Basically no skin on my neck.|
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.
- 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.
- 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...
- 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