Saturday, December 14, 2013
Friday, December 13, 2013
December 8 – Slow Improvement!
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.
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.
Tuesday, November 19, 2013
November 19 - More of the Same
I have tried to update my blog a couple times lately, but I find I am writing the exact same thing I did before. Right now I am not making progress. The following is from a post I made on the ITSAN forum in response to the use of hydroxyzine:
My itching is relentless and is only manageable with a hydroxyzine every few hours. What really gets me upset is my lack of self-control when I start a bout of itching. I know damn well that if I start to scratch anywhere I will go into a spiral that can only be brought back under control by talking a long bath (and more hydroxyzine). My body seems to have different types of itching. My arms and legs and torso are the type of itch that when I scratch it is nearly orgasmic. When I start scratching it feels amazing, but the crazy itch spreads like waves to everywhere else. Once I manage to stop, usually in a fit of rage and disappointment in my lack of self-control, my skin has become very wet, irritated, and red. The itching on my stomach/chest is different and has an electrical/nerve feel to it, and if I scratch it, will not spread. My neck and back are different yet with a normal response to scratching, that is it feels good and does not cause an out-of-control spiral. My hands and fingers itch too, and I will sometimes without really thinking about grab a finger and basically squeeze and twist it. It feels amazing, but the next day the skin will be all torn up.
The fact that I do not use moisturizer on my back and face and they are my least affected areas has me thinking about the moisturizer withdrawal thing, but that is another subject. I need to try something else though, as I feel like my progress is in a hopeless holding pattern.
My itching is relentless and is only manageable with a hydroxyzine every few hours. What really gets me upset is my lack of self-control when I start a bout of itching. I know damn well that if I start to scratch anywhere I will go into a spiral that can only be brought back under control by talking a long bath (and more hydroxyzine). My body seems to have different types of itching. My arms and legs and torso are the type of itch that when I scratch it is nearly orgasmic. When I start scratching it feels amazing, but the crazy itch spreads like waves to everywhere else. Once I manage to stop, usually in a fit of rage and disappointment in my lack of self-control, my skin has become very wet, irritated, and red. The itching on my stomach/chest is different and has an electrical/nerve feel to it, and if I scratch it, will not spread. My neck and back are different yet with a normal response to scratching, that is it feels good and does not cause an out-of-control spiral. My hands and fingers itch too, and I will sometimes without really thinking about grab a finger and basically squeeze and twist it. It feels amazing, but the next day the skin will be all torn up.
The fact that I do not use moisturizer on my back and face and they are my least affected areas has me thinking about the moisturizer withdrawal thing, but that is another subject. I need to try something else though, as I feel like my progress is in a hopeless holding pattern.
Monday, November 4, 2013
November 3 - A Relapse?
Well, I have been steadily improving until a few days ago, but I am going through what I am hoping is my first and last relapse. It's not that bad, I think it has set me back about a month, but work is again difficult and the hopes of making it to a Texas Tech home game is not looking good. The itching... OMG the itching... I think only fellow TSW warriors know what it is like. It is impossible for me to resist and sometimes find myself doing it my sleep. This time it is my legs and forearms and the result from scratching is a return of the irritation and redness. A few weeks ago I was so happy to return to my real bed, sleeping with a real wife, but last night I was back on the downstairs couch watching The Science Channel. Sigh.
I was taking a lot of ibuprofen to control itching, but when I told my GP that he told me to stop and had my blood tested. So, I tried hydroxyzine to control the itching and it was really helping. It is not effective anymore for more than an hour or two, and the doc has said I cannot take more than one 25 mg pill every four hours. Since my blood tests were normal, hopefully a combination of hydroxyzine and ibuprofen combined will help control the itching without OD'ing on either. As I type this, however, I have taken both and I am a mess.
One drug that works and has continued to do so is Ambien (zolpidem) for sleep. I can personally attest that it's reputation for sleep-walking is well deserved, but that seems to have calmed down. From what I understand, it's not really sleep-walking, but rather its amnesia. For example, when my wife's sister came to visit, she arrived after I had taken an Ambien and gone to bed. Apparently I came down to greet her, made myself some hot chocolate, then went to bed and I don't remember any of it. My wife tells me though that I was acting perfectly normal.
I am trying to maintain a positive attitude. Knowing that relapses are certain, having one is a milestone and simply a pothole on the road to recovery.
I was taking a lot of ibuprofen to control itching, but when I told my GP that he told me to stop and had my blood tested. So, I tried hydroxyzine to control the itching and it was really helping. It is not effective anymore for more than an hour or two, and the doc has said I cannot take more than one 25 mg pill every four hours. Since my blood tests were normal, hopefully a combination of hydroxyzine and ibuprofen combined will help control the itching without OD'ing on either. As I type this, however, I have taken both and I am a mess.
One drug that works and has continued to do so is Ambien (zolpidem) for sleep. I can personally attest that it's reputation for sleep-walking is well deserved, but that seems to have calmed down. From what I understand, it's not really sleep-walking, but rather its amnesia. For example, when my wife's sister came to visit, she arrived after I had taken an Ambien and gone to bed. Apparently I came down to greet her, made myself some hot chocolate, then went to bed and I don't remember any of it. My wife tells me though that I was acting perfectly normal.
I am trying to maintain a positive attitude. Knowing that relapses are certain, having one is a milestone and simply a pothole on the road to recovery.
Wednesday, October 9, 2013
October 9 - 3 Months Off Topical Steroids!
THE GOOD:
- Three months have passed since I last used topical steroids! One month closer to being cured!
- My skin continues to improve, as does my body's ability to regulate temperature.
- I have managed to productively work full time this week.
THE BAD:
- The itching remains out of control. It's a tremendous psychological battle that I cannot conquer. When the itching starts, I know that if I succumb and scratch that it will become much worse very quickly. Yet I scratch anyway. This really pisses me off... I am simply incapable of not starting this insidious cycle. Once I start, the intense itching races around and as I chase it my body starts sweating, everywhere. The only way to calm it down is to hop in the bathtub. I don't know why this works, but immersing myself in not-quite-hot water normally stops the itching. If I am at work, however, a bath is not an option. I will pop 3 or 4 ibuprofen and hope they will kick in before I go insane. I try distraction techniques, such as walking around, making a phone call, or like I am doing now, write a blog entry. If the itch is localized, the Allegra cream helps too.
- Although my rash is better, little skin-tag-bump-pimple-things are popping up everywhere, especially on my neck. There’s, like, hundreds of them. I really hope that these will go away.
- The edema in my feet comes back at the end of the day, although nowhere near as bad as it was.
- I have been getting a strange feeling inside my head, a sort of anxiousness, that is hard to describe. My head feels like there's some kind of electrical storm going on inside, almost like my brain itches, It feels good to rub my forehead and area around my eyes and ears, but that doesn't make the feeling go away. I wonder if it is from taking too much ibuprofen?
Saturday, September 28, 2013
September 28, Week 12 - Back to Work
I went back to work last week, and it went about as well as I suspected. I drive a computer mouse for a living, and was able to put my feet up while doing so, and happily my edema in my feet has not returned. My problem is that I am in about a 5 hour cycle where itching will return in force and the only way to calm it down it to take a bath. Sure enough, about at lunch time my body would go crazy and I'd have to hightail it home for a bath. So, I was able to get in less than half my usual hours. I am a bit encouraged that I was able to even do that, and am really hopeful that the itching will ease a bit before Monday.
My skin, feeling hot/cold, foot pain, and nerve tingling continue to slowly improve and my primary challenge is the insane itching. It is simply not getting any better and sometimes is almost unbearable.
I am really happy that the rash that started to appear on my face did not materialize!
My skin, feeling hot/cold, foot pain, and nerve tingling continue to slowly improve and my primary challenge is the insane itching. It is simply not getting any better and sometimes is almost unbearable.
I am really happy that the rash that started to appear on my face did not materialize!
Thursday, September 26, 2013
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