Monday, June 10, 2013

Day 26 - Ooze monster

The oozing monster has caught me. Arms, back of knees, and anywhere I scratch... the skin will just start to ooze a clear or yellow liquid. 

Sleeping is horrible. I'm not a big fan of lotions, but I'm using them now. Sleeping is like having excessive lotion on certain parts of your body and you can't get comfortable. Its just gross as you feel your neck ooze. Hope this phase passes in days and not weeks.
My eyes are slowly coming back, but a bit squinty yet. A dead give-away that there is something I'm going theough. The skin around them seems to be settling down. My cheeks and face continue to be pretty good. I haven't washed my hair in weeks, but it soaks in the tub with me daily so it's not horrible. The shedding is continuous and no end in sight of that. 

I have some adrenal support supplement coming in and I hope a 30 day kick of that will help me get my sleep pattern back. Still sleeping in the basement with towel covered bedding to soak up the body fluids.

Thursday, June 6, 2013

Day 22 - Oozing my way along

For the past few days I'e been wanting to sit down and update this blog, but just never got around to it. This last week I worked on Tuesday (day 20) and today (Day 22). Monday and Wednesday were a loss... just couldn't put it together to get myself to work. My biggest issue with going to work is my vision. It's the skin around the eyes that is the issue. It's dry and warped skin that pushes on the eye and makes it difficult to do work. Thank goodness for being able to enlarge web pages and the "speak" features on my iPhone.

For the past week I've setup a single bed in the basement for sleep. Wife got some extra/cheap sheets which I cover with large towels each night. This allows me to move, itch, scratch, sigh, shed, and ooze in private and without worrying about making a huge mess. It also saves the wife from being kept up all night long as I wrestle with comfort and sleep.

How am I doing? Not well. My neck and ears ooze at night, I have red sleeves on both arms, my back is covered, my legs get covered more and more each day and the redness is turning dark... more of a burgundy in color. On the slightly better side, the ears aren't crusty during the day or have broken skin. My eyeballs are OK and the watering is limited to only when I go out in the bright outdoors (even with sunglasses).

Earlier this week I switched from apple cider vinegar baths to epsom salt (1 and 1/2 cups) with olive oil (about 2 tbsp). That olive oil really zeros in on your skin and helps moisturize it. You don't need very much for it to feel good... never would have thought. About every other day I'm doing a bath in the morning as well as before bedtime. The night bath really calms the skin. Some days I feel anxious and just want to get out of my skin. The bath really helps that.

I went hunting for pictures of my 2011 journey earlier today. From what I can tell, my journey back then wasn't this bad. By week three (about this same time I'm at now) my face wasn't affected very much at all. I didn't ooze nearly this much, but I do remember some. I never had to sleep somewhere else due to all the discomfort. It really ticks me off that I didn't put it all together back then... I would have been long over this.

Wednesday, May 29, 2013

Day 14 - Worst day yet

I took Benadryl for the second time on this journey to see if I could get some decent sleep before trying to go into work today. Got settled in by 10:30 PM and slept until 3:30 AM. Then, I was wide awake. Damn adrenal glands! A classic symptom of adrenal fatigue, which I probably have thanks to the topical steroid use.

When I did wake up at 3:30 AM I could tell I was an oozing mess. Both ears, back of the neck, front of the neck, collar line... it finally hit like it did in 2011. I tired to snooze a bit and got up at 5 AM and straight into the tub. Soaked for just over an hour and then got some clothes on and got my son up and ready for school.

I waited until 9 AM to decide to go into work. Took care of a small list of urgent things to get done and then went home. Four hours clocked in... not too bad. As the day went on my neck, jawline, and lower cheeks crusted over. That means on thing... major oozing. Must be the clear type since everything was still a lovely shade of red.

So now I sit here and wonder if I should take a bath tonight before I go on my nightly sleeping adventure. Skin is a little tight due to the crusting. Will a bath make it sleeping conditions worse? Open up everything so it can really ooze out? Or leave it alone and try to keep things plugged up? The white cotton T-shirt I took off this morning has puss all along the collar... I doubt if I left it alone it wouldn't ooze.

Damed if I do... damned if I don't.

Tuesday, May 28, 2013

Day 13 - Shouldn't complain...

Wrapping my my first two weeks of Topical Steroid Withdrawal (TSW). May 15th was my official last day of using any topical steroids on my body (arms and face were the last to get them).  After my first go-around with this in 2011, I shouldn't complain about how I'm doing this time.

Two years ago I though that by cutting all the sugar out of my diet that my body rebelled and broke out with rash. It was the stopping of the TS at the same that that caused the rash. Probably made it worse by the sudden diet change, but that's all history. At the 2nd week in 2011 I was pretty much non-functional. I remember on the 4th of July sitting in the kitchen while my family was off to a parade. I couldn't even think of going out in public due to my eyes being almost swollen shut and puffy face. It was horrible.

Today is Tuesday, May 28, 2013, the day after Memorial Day and the first official whole day off due to TSW symptoms. I took one more day to get my eyes rested before going back to work. Compared to two years ago, the symptoms are similar but so far have been more mild.

One odd note is that last Thursday I took some Benadryl to help sleep. By Saturday morning my fingers were raw again. Not sure if there was a connection, but I haven't taken any other medications since starting this process. Today, three days later, my fingers are healed over again. Thought that was interesting.

Let's talk about sleep. For the past two nights I've slept on the couch, which has a recliner built-in. The back of my knees are raw and oozing so it's been easier to sleep sitting up and extending the legs with air below them. It also easier for me to toss and turn without disturbing my wife. I'm at a stage where I'm cold due to my blood vessels dilating (hence the red skin) and radiating my body heat out. Putting on a blanket is great, but due to the radiating of heat you start to sweat! Ugh... it's terrible. I forgot how much of an adventure sleep was in back in 2011.

My legs jump while I'm trying to get to sleep. It's odd how I had the exact problem in 2011. You'll lay there and feel yourself drifting off and, pow... one of your legs jumps, like a big twitch. I think this gets back to your nervous system being out of whack along with your adrenal glands.

Yesterday morning I got on the treadmill for the first time since starting this process. Did two miles of a brisk walk in about 30 minutes. I had done P90X about three times prior to starting the GAPS diet in mid-April, but I stopped all exercise due to the limited intake of calories. The purpose now is to get my lymph nodes moving. If what I read is true, my lymph system is probably sluggish and my adrenal glands fatigued after supplying so much artificial cortisone. Time to get things moving again. Today, I jumped rope for about 5 minutes and then did 15 mins of walking on the treadmill (1 mile). I'm physically fit, but low on weight. At 6' tall I'm currently at about 147 lbs.

Supplements that I'm continuing to take from my diet and lifestyle changes from the last two years include a multi-vitamin and probiotic from Garden of Life and I though in a super vitamin-B complex that has 500% of the RDA. I am now including some limited breads and some cheese in my diet. I need to up my calorie intake to get some weight back on. I won't be adding any caffeine or sugars and plan to stay away from alcohol for a while. My adrenal glands need all the help they can get.

Thursday, May 23, 2013

Day 8... Can't go fast enough

I don't think I'm alone when I say, "let's get this show on the road!" I just want the days to go fast and symptoms to come sooner rather than later. One week behind me and lots more to go.

The eyes are similar to my experience in 2011. The eyeballs get to be pretty good, but the skin around the eyes is the problem. At different times it gets dry, tight, rippled, and irritated. Flaking comes and goes and they look like major "allergy eyes." Makes your appearance very ugly as you try to get through your work day.

My arms were the last parts of my body to get any topical steroid (TS) and they're spotty with red spots. No "red sleeves" and I didn't get that in 2011, either. The back of my left hand is all red and flaked badly yesterday.. today, just red. My face and neck is where I last used Protopic eight days ago. The neck is getting bad. No major oozing, yet, but my memory of those days tells me it's coming. Neck skin is getting thick and flaking off in big pieces. Face cheeks and jaw line is a darker red color.

My left ear is getting "thick." If feels enlarged and is flaking every day. It's cracked behind where the ear meets my head and it's oozing there. Today, the oozing wasn't bad, but it's there. I try not to disturb it too much. Right ear flakes, but not as bad. I have "cuts" at the top of each ear (where it meets the head) and they both scabbed over. Very painful if those scabs get hit if I scratch or try to get rid of some flakes. The skin around both ears is very dry, including the skin on my scalp. Major, major flakes which looks like dandruff. I've been wearing hats, but really don't need to since nothing comes off unless I itch the scalp... and damn, does that feel good to do that.

I've been able to go to work, so far, with a 30-40 minute bath soak each morning. Since everyone at work knows what I'm going through, and they saw me in 2011, it's business as usual even though I'm looking tougher and tougher each day. Have to love those extra looks you get. If I can just get over the hump with the eyes in the next week or two I can handle the rest of it and keep on working.

I have one more work day and then a three-day weekend. Usually I work on Memorial day to build-up more time off, but this year I'll take the extra day. I think I'm going to need it.

Sunday, May 19, 2013

Hands on the right track... again!

Didn't plan on blogging again this soon, but had to show my hands...

Had to work today (Sunday) which isn't typical. I'd rather have some down time to rest, especially the eyes. Got some coconut oil on the eyes to soften the skin up and then jumped in the tub to soak and take off a layer of skin. Yes... after 30 mins you can see the skin cells floating in the water, but it feels better to get it off.

One thing that I remember vividly from my 2011 during my three-month topical steroid (TS) vacation and back-ending into TS withdrawal, is the dilemma of whether you should shower, take a bath, or just wash up. Showers hurt SO bad during that time... something I'm not looking forward to this time around.

My face is shedding, but it's bearable so far. Could rub my hands on my face during the bath and feel the dead skin rolling off. Again, gross but need to get this stuff off before going to work. Applied moisturizer to most of my body post-bath. Vaseline "repairing" moisturizer... I like it so far.

One more thing that I remember from 2011 is how quickly my hands recovered, and so far it's happening again (yeah!). No open cuts anymore on any of my fingers. Even after the bath they were looking very good. Three days ago I had the thumbs, ring, and middle fingers on both hands broken out, flaking skin, and reddish looking. I wore bandaids on them almost every day just to protect them from getting bumped into something. They really hurt.

During the day today, as my skin moisture changes, a few fingers became very red and angry looking. By the time I got home at 3 PM they were back to more flesh colored. Just hope the fingers keep going that direction. I need my hands fully functional again!!

I'll call this a good day. I'm keeping my expectations low for the next few weeks, though. I know how bad this can get and don't expect to be spared.

Saturday, May 18, 2013

The Start... Second Time Around

I'm about to start a journey into Topical Steroid Withdrawal. This will be my second time going down this terrible road. Back in June 2011, after being on 0.025% triamcinolone cream for about 1.5 years, I stopped using the topical steroid (TS) when I stopped ingesting sugars. My eyes were watering and my fingers were all broken out. I couldn't go anywhere without tissue due to tears running out of my eyes. I could't wash my hands without extreme pain as soap got into the small cuts and broken skin.

I thought that when I stopped giving my body all that sugar that my skin just exploded in rash. I had rash in places that I never applied the steroid. It was so bad it was scary to me and my family. I happened to stop applying the steroid at the same time in hopes that once my body adjusted to the sugar withdrawal that I'd see the rash improve. I wouldn't know unless I stopped the TS, right?

Looking back now, I realize that it wasn't the sugar removal from my diet that caused the rash but instead a withdrawal symptom from no longer applying the TS. I even had the idea that I had candida (systemic yeast infection) and that it wasn't liking new low-sugar/carb diet I put myself on. Those first few weeks of my supposed "sugar withdrawal" were horrible. Rash was red and mean looking. They scaled over again and again and shed white flaky skin. I could lean over and drag my nails over my neck and make it snow dead skin cells. My ears would shed as well, and they cracked behind the ears and oozed puss long the cracks.

After three months and visit back to the dermatologist, who told me again that long term use of topical steroids wouldn't cause me any harm, I started using it again. He advised a 2 week course and it cleared the rash up with no problem. I was then back on a cycle of applying TS at least once a week to keep the rash at bay.

Now, after multiple elimination diets, supplements, probiotics, and environmental changes I've come to the conclusion that no matter what I have done nothing has made a difference. Looking back I see that the only constant during all of this has been the use of TS.

This time I go into topical steroid withdrawal fully aware of what I'm about to do to myself. I know it isn't going to be pretty and I'm going to be miserable. It's going to burden my family, but at least everyone knows what to expect this time around.

For the record, I stopped using TS on my body just over a week ago, except for my arms. I last applied to my arms on May 15, 2013. As I sit here,  three days later, my arms are now breaking out and will soon match the rest of my "rashed" body.