Wednesday, November 27, 2013

Moisturizer withdrawal (2 weeks in)

2 weeks ago I was in a bad place. I had areas on my face that would not heal (for months). It was red, itchy, flaky, oozing, and I could not sleep. I decided to quit using moisturizers. Turns out, it was the best decision I've made so far. Within 3 days all the oozing completely stopped. The places that would not heal are healed! I am still red, itchy and flaking, but nothing like before. I'm not lying on the couch all day and I'm sleeping at night. I hope this progression continues, but you never know with tsw. The first week sucked. I looked horrible and felt worse. I had to keep splashing cold water on my face and legs to help with the dryness and pain. I was shedding like crazy. It was like stopping steroids all over again. But, it was totally worth it. to see such a big improvement in 2 weeks is a welcomed change, The challenge is in taking showers. The warm water really helps to sooth, yet it does dry out your skin. Some days I don't care and I just take a hot shower and deal with the dryness afterwards. Other days I can talk cooler showers and feel better throughout the day. Either way, it really helps just to stay busy. Don't look in the mirror. Don't itch that itch if you can help it, and just live your life. Oh yea, and keep your head up (literally). If people look at you funny, just look at them and smile, and say hello. Try not to feel bad for yourself. Feel bad for all those poor people that have to look at you. Seriously, that must suck to be them and have to look my face. I feel sorry for them.

Friday, November 1, 2013

Skin addicted to lotion

So I'm 16 months into tsw and I'm.... managing, I guess. It's 7am and i haven't got to sleep yet so I thought id post something. I keep reading other peoples posts about their skin being addicted to moisturizers as well as steroids and it got me thinking. My skin has never liked moisturizers, never. I've always gotten into trouble when I tried to use them. However during the steroid withdrawal, it's been essential for me to use something on my face, because it gets ridiculously dry and flakey. I alternate between aveeno baby eczema and an ointment that's around 40% petroleum jelly. However, I can put lotion on, just out of the shower, and be flaking not 5 min later, and also be itching my face. Then I have to re wet my face and re apply the moisturizer, which always makes my face more red. I guess the flaking is somewhat related to using hot water. However using luke warm water just really isn't usually an option because it stings so bad when I get into the shower. The hot water is much more soothing and burns less. However, I can turn the temp down prior to getting out and try and cool off. This doesn't necessarily mean I'm not going to peal like crazy when I get out, but sometimes I do, and sometimes I don't (noting that hot showers are worse). So I thought, hey, maybe I should try the no moisturizer approach and maybe it will speed up my healing. I was at a point where I was pretty bad and decided, what the heck. If it's going to be this bad, I might as well go "all in". Well, I'm 2 days into it and it sucks. My face is just gross to look at. All around my mouth, chin and neck I've got the ooze going on and it's pretty depressing. I finally decided to take some time off work and I'm hoping I can stay with this program and hopefully it will speed the healing process. Interestingly enough, when I was on cyclo, I didn't need any moisturizers at all, and I felt great. That's where I want to get back to. It's like when you start using chap lip, it seems like you just got to keep putting more and more of that stuff on because your lips keep getting dryer and dryer. My derm says I have to moisturize several times a day! I asked him, "do you moisturize?", and he said "no, but I don't have eczema". Eczema or not, there's something not quite right about having to put on moisturizer every day of your life. We weren't born needing moisturizers, people lived for thousands of years without them. I just don't think it's natural (and I'm NOT one of those naturalists!), I'm just saying I don't think it's necessary, and it's probably counter productive to our bodies natural responses anyways. If my skin is dry, my body should fix the problem on its own. Me putting moisturizers on is interfering with the process. (That's my Non-medical opinion anyway). We'll see how it goes. Keep your fingers crossed for me, I'll be laying on the couch in misery for a while now.

Wednesday, October 9, 2013

16 months steroid free, 2 months off cyclo

Well, it's been a while since my last post. I guess i've been superstitious about posting. I have been doing fairly ok after my cyclo taper dose ended 2 months ago and didn't want to write about the subject, I was just hoping that I didn't get any worse. Well, I've gotten worse. They say first in, last out with steroid usage, and I hope it's true. I used steroid creams on my face for over 20 years, and my face is now the worst part of my symptoms. I still have slight rashes on my torso, and hands, but my face just sucks right now. I am red, flaking, and oozing almost 24/7. For some reason the oozing is keeping me up at night a lot. I toss and turn all night, then I wake up exhausted. I take 1-2 showers a day, and usually feel better for a few hours after the shower. I'm using advanced healing ointment which is 41% petrolatum. It's not as thick as regular petroleum jelly, and I can tolerate more on my face. I've also been using aveeno eczema relief on my face to help. Coconut oil on my body. Not sure why, but folliculitis seems to be another symptom of tsw for me if I decide to drink alcohol. It just makes the tsw and itching worse. Minocycline periodically has done a real good job of helping me with that.  I haven't been reading other people's tsw blogs in a while, but I probably will soon, just to see how long this oozing thing is supposed to last. I've been dealing with some pretty bad skin problems since 2009 (off and on depending on the immunosuppressant I was on), and I'm just tired. Im in my early 30's and am starting to get some white hairs. I may decide to take off work soon even though I don't want to. Ugh.

Monday, June 10, 2013

Taper Dose, Folliculitis, and Sateen Sheets

So I went off Cyclosporine for a about a month and my skin got so bad I decided to get back on it. I'll post a picture when I get a chance, but basically my entire body was covered in open cuts from scratching. I was not sleeping and had all I had all the other typical TSW symptoms. It was definitely a low point for me. Now I'm on a taper dose of cyclo and I expect to stay on it for about 2 months (until around the end of July). At that point I will go off cyclo for good. I am prepared to take some time off work because every time I get off it I get really bad. I decided to stay on the taper dose because I can still function while on it, and I have a lot of important stuff that I need to do during June and July. It's also better for me to push back taking time off work as long as I can. I'm still Itchy, Red, and Miserable on the taper dose, but at least it's manageable.

During my low point I noticed that I kept getting more and more pimple like bumps all over my body (chest, belly, back, arms, legs, butt, head) and I could not get rid of them using shampoos and cleansers (silicic acid, selenium sulfide, benzoyl peroxide, hibiclense). I finally realized it was folliculitis and went to my Dr. and got an oral antibiotic Rx which helped calm that down.

I had a miserable experience with sateen sheets that I though might be helpful for others to know... I bought these fancy calvin klein sheets not knowing they were sateen. They felt really good, but when I slept on them I would wake up in a pool of sweat! Yuck! I figured that it was just me and my tsw, and it couldn't be my nice new soft sheets, but when my wife finally got home a few days later, she had the same reaction. We did a google search and realized that a lot of people have this same reaction when sleeping in sateen sheets! Who'd a thought? I pretty much NEED to have just plain old cotton clothes and sheets or else my body freaks out.

Well, that's it for now. Next month will be a year without steroids and it sucks that I'm still just as bad as day 1 of withdrawal. Hopefully things will get better for me and I'll keep you posted as things progress.

Monday, April 22, 2013

Stressed to the max!

I've only gotten worse since I've gone off cyclo. It's now 4am and I just took a shower because I was itching to much and couldn't sleep. I've only slept 3-4 hrs the last 4 days and I'm finding going to work is proving to be almost completely unbearable. Especially when my work days turn into 12 hour days. In addition to insomnia, redness, shedding, and crazy itching, my legs and feet have started to swell and rash up more. I don't know what I'm going to do. I am definitely at a low point. I feel lost, sad, tired, disgusting, and fed up. I think I may try and get some time off work in May if this madness continues. I just want to lay on the couch all day, but my schedule has been very busy and i'm forcing myself to get outside the house. Im just tired.

Monday, April 8, 2013

1 month off cyclo

So it's been 1 month since I quit using cyclo, and I'm right back to where I was before I started using it (unfortunately). Right now it's 3am and I can't sleep, so I decided to make a new post. I don't know if cyclo postponed the healing process or not, I'll just have to wait and see how long my recovery takes and then make an educated guess. But basically, I cannot get to sleep usually until sometime between 4:30am to 8am. If I can sleep until noon I'll be really happy about that! The other night my face was oozing really bad, and for the last week I've been waking up in a puddle of sweat. I'm taking about 3 hot showers a day, as this really helps me to stop itching for a while. I'm itching and shedding like a crazy man, and positioned the sweeper near by for its hourly usage. My torso, neck, and ears are raw, oozy, and flaking a lot. My legs got really red the other night which was the first time that happened, but their back to their normal red now. I'm just really miserable. I'm using vaseline everywhere to help with the burn and itch. Today was especially tough, but my wife made me get out of the house and walk a little, as well as go to the grocery store. It hurt, but it's always good to get some fresh air and sun. I really hope I'm one of those people who can get breaks from the withdraw process, but so far I've been flaring every day. I think I'm going to try and find some shea butter tomorrow because I keep reading positive reviews on it. I do use coconut oil sometimes, but it also can make me really itchy as well. Tonight the coconut oil provided much needed relief during an itching fit. It's so hard to stay positive during bad days. I'm taking ibuprofen, vitamin d3, fish oil, and anti inflammatory supplements daily. Ugh. If I could turn back time.

Monday, March 4, 2013

Going off cyclo :-(

Just a quick update. I added some more photos that i'm sure will be helpful for you to compare with your skin. Today is my last day of Cyclosporine. I'm pretty bummed about going off the medication because life has been close to normal while I was on it. My liver and kidney reading spiked a little on my last blood test so I figured it was time to come back to reality and get off the meds. Had I not been on them, I definitely would have had to take some time off work because I was getting NO sleep at night, and a couple of hours of shut eye during the day. I tried to taper down my dose over the last month or so, but we'll see what happens. I'm pretty scared, but I know having a bad attitude will not help me, so I got to try and stay positive. As I tapered down my face has been getting more red, i'm a lot more itchy, and the rashes are coming back. I'm only 8 months into tsw so I know I've got a long road ahead based off of my long use of steroids. I'll probably post another update in a few weeks. Wish me luck, and say a prayer for me if you don't mind. I going to need all the help I can get.