Category Archives: Months 16-18

Month 18 – June

This last month has been very challenging, and by challenging I mean hellish. My hands have really been falling apart over the last few months, oozing a lot and not seeming to get any better. In fact, they may be the worst they’ve ever been. The backs of my knees and ankles have also started showing signs of TSW as they have been itching a lot lately and I’m starting to experience more oozing from them whereas before I never really had any issues with them.

But since I’m experiencing all this oozing I’ve decided to try moisturizer withdrawal again. I’ve tried it several times in the best to varying degrees of success. It seems to help heal up my trouble spots initially but after awhile it becomes difficult to maintain having my skin so dry and it’s pretty damn painful having the creases of my hands and knuckles constantly cracked open. It’s like having deep paper cuts all over my hands. So the only thing I’ve been using has been sudocream. I don’t even know if this is the wisest course of action but I’m just really tired of not getting any results from moisturizing every day; it’s expensive and seems to irritate my skin after prolonged use.

My hands seem to go in cycles too. They will start out really dry and cracked and painful but if I can leave the skin on they slowly heal underneath. The skin usually sheds off in the tub or just from me picking and scratching it off, then my hands usually look and feel normal for a few days before the cycle starts again.

It feels never ending and if this is just something I have to deal with in life forever I don’t know how I’m going to manage. Money is getting tight and the only job I’m able to work that pays me a living wage is in landscaping but even that I can only tolerate doing 2-3 days a week. The mix of dust, sweat and constant movement is not ideal.

Month 17 – May

This month was pretty hectic. My girlfriend and I moved into a new place so I’ve been very busy packing and unpacking. It was kind of tough because I would get kind of dusty from packing and go into itch fits, so the packing dragged over the last couple of months. Overall though my energy levels are pretty high, my sleep is fairly normal and I think my skin has been getting better. Still dealing with oozing on my face, neck and hands. My hands have been pretty up and down too; they seem to go through these cycles where the skin becomes very thin and then scabs over and is good for a few days before thinning again. There’s also some really painful cracks that form in the creases of my hands and knuckles that make life kind of dickish. I’m also going to see a rheumatologist tomorrow to see whether or not I have Lupus. I’m still not convinced that it’s Lupus but if we can rule that out then we’re another step in the right direction. Or maybe I just have Lupus, in which case, I should probably get a handle on that before my immune system attacks and kills me.

But I was looking up possible side effects of Betaderm, which is the topical steroid that I used and abused the most, and I have 24 out of 40 potential symptoms so I still think there’s a fairly high likelihood that I am healing from TSW.

Here’s the full list:

Betaderm Side Effects
increased skin sensitivity x
lack of healing of skin condition x
ongoing burning, itching and irritation of skin x
itchy rash with small, red, raised bumps x
skin discolouration x
skin infection x
“spider veins” or blood vessels visible through the skin
thinning of skin with easy bruising
acne or oily skin
backache
blurring or loss of vision (occurs gradually if medication has been used near the eye) x
changes in skin colour x
depression x
eye pain (if medication has been used near the eye)
filling or rounding out of the face
increased blood pressure  ?
increased hair growth, especially on the face and body x
increased loss of hair, especially on the scalp x
irregular heartbeat
irregular menstrual periods  n/a
irritability x
loss of appetite x
muscle cramps, pain, or weakness x
nausea x
pus in the hair follicles x
rapid weight gain or loss x
reddish purple lines on arms, face, legs, trunk, or groin
redness and scaling around the mouth
softening of the skin x
stomach bloating, burning, cramping, or pain
swelling of feet or lower legs
tearing of the skin x
thinning of skin with easy bruising x
unusual bruising
unusual decrease in sexual desire or ability (in men) x
unusual tiredness or weakness x
vomiting
weakness of the arms, legs, or trunk (severe)
white spots x
worsening of infections x

Month 16 – April

This month was pretty tough. I worked landscaping for a lot of it 3 or 4 days a week but even that amount was really challenging. Dealing with a lot of allergens and the sun made me claw at my face, neck and hands a lot. Really delays the healing. I thought getting a lot of sun would be good for my skin but now I’m not so sure. When I was doing UV treatments (which I don’t really have the time for anymore and since the sun is out now, I don’t want to overdo it) I was going in for 2 minutes at a time. Being in the sun for 5-7 hours a day is a lot harder to deal with and my skin was pretty reactive to it.

I’ve been putting a lot of Aztec healing clay on my hands though and I think that it has been helping. I usually just let it dry on my hands or face now to soak up any oozing spots. It also kind of acts like a protective scab and keeps from scratching at those parts (usually). I think I’ve made a lot of progress especially on my right hand, which has been a complete mess for months now.

I also had some blood tests done that revealed that I have some genetic markers for Lupus. My doctor said that it could be a false positive but I’ll need to see a rheumatologist to find out for sure.