Entering month 6 and slowly recovering from a flare that hit about a month ago. Mostly good news this time, so we’ll get the bad stuff over first.
The BAD:
- My hands are bad, and are the worst part of my body. Cracked, dry, and itchy. My palms are extremely sensitive and will act up if I do anything with my hands. The flare caused the skin flaking everywhere to return. Not as bad as before, but I find a trail of skin flakes wherever I go.
- I do not feel up to travelling. I will be missing a Christmas family reunion that will very likely be my Mom’s last Christmas. I never made it to Lubbock this season to watch my daughter march.
- I read about this and was expecting it sooner: I am losing my hair. It has thinned considerably and what was just thinned before is nearly bald. I hope the hair returns, but at my age I am not expecting it.
The GOOD:
- In general, I am better in all regards. Primary issue remains the itching everywhere. The hot/cold/sweat thing is better, and the electrical/nerve twitches are essentially gone. I am not taking baths all the time, in fact it has been several days since I took one (thanks to a bathtub leak that encouraged me to skip it). When I get home from work I take a very long hot shower.
- I did make it to Cowboy Stadium mid-November to see my daughter march during the TT vs. Baylor game!
- I am hoping to fly to Seattle to see my mom and rest of the family in January.
- I am off Ambien! I have been taking it for several months and after reading some horror stories about getting off of it, I decided to try stopping. For a few days I took half of a pill, then went to nothing last weekend, and I still slept! This is a biggie. I am still back to sleeping on the lounge chair and the next step is to see how it goes actually sleeping with my wife.
- I continue to rely perhaps too much on hydroxyzine, but it seems to be my best option for controlling the itching and has fewer side effects than ibuprofen. I hardly take any ibuprofen now, and the buzz in my head and ringing in my ears has improved.
Hi Dave,
ReplyDeleteI've been enjoying your blog a lot..I'm at month 3, so your blog gives me ALOT of hope. It is so hard to not give a good scratch. I started MW on Wednesday. Going ok just bone dry and still itchy. Are you doing MW (moisturizer withdrawal)?? I'm so happy to read that month 6 is SO much better than month 3 was. Thank G!
Thanks for the blog…really enjoy it.
-Ruth
Thanks Ruth! Honestly, I'm on the fence regarding MW. I have tried it a couple times and the itching was unbearable. I understand that dead sea salt baths help a lot, so I am going to get some and give it another shot. In the meantime I have cut way down on moisturizing, basically applying Vaseline only after I take a shower.
ReplyDeleteThank you so much for stopping by my blog! It makes me feel better knowing it is helping you! We can do this!
Hi Dave,
ReplyDeleteThanks for the encouragement. I have unbearable itching too. Nothing really helps it, though I do think my friend Dan is right that the DSS baths DO dry up the skin faster so it can flake off. I'm on Atarax 30-40 mg per night now. Thank god I got some sleep last night. Up all night the night previous scratching..I try SO hard to not scratch and can usually talk myself out of it during the day, but nighttime is a fierce foe. Like you, I sleep in a different place than my spouse and I really miss him! It has been at least a year I've had to live in the guest room--and the was while I was still on TS.
I cannot use vaseline yet without incurring a major itch fest..so really everything makes me itchy; moisturizing or not. But, not moisturizing leads to almost no little tiny blisters so maybe it is better.
Month 3 has been g0d awful but I'm hoping for turning a corner in month 4. Thanks so much for your kind response to me!!
-Ruth