Update: Month 8

Hi Boys and Girls!

Another month down. Just to clarify, I am done with month 8 and into my ninth month of withdrawal. I went off Clobestol Propionate completely sometime mid-December 2012… not sure what day exactly. So I’ve said January 1st to simplify things. Technically I could be at 9.5 months!

August has been an interesting month. There has been major markers of improvement and feel lucky to have gone through only moderate withdrawal symptoms. I continue to visit the sunbed every 2-10 days for 2 minutes at a time. Yes, I’ve been inconsistent and have seen a positive relationship between improved skin condition and sun therapy. The 10 days I went without it, my perioral area worsened — more sensitivity to allergens, sweat, kisses, etc. Every 5 days seemed to be a happy compromise between my self that wants to avoid tanning at all costs, and my other self that wants to keep my mouth area looking normal.  Otherwise, if things were rashy, I would go more often though for a shorter time.

Anyway, I’ll start with the cons…

Downs:

The biggest downer was my perioral area regressed in the last couple of days of August. It acted up after giving Dexter (my Beagle) a bath. Raised bumpy red rashes and little oozing and crusting. Taking salty baths and getting “sun” has helped only some, though I’m thinking that it will be better in a 1-2 months time.

Scratching. Healing is progressing slowly, but surely. Not many open wounds this last month. I’ve avoided using my hands to scratch, which seems to be less damaging. Instead I use flat surface objects which seems to be moderately better because using my nails seems to break skin open quickly. This advice may seem… irresponsible. I should be telling you to not scratch at all throughout withdrawal, but I have accepted that scratching is inevitable. It gets me through the morning, afternoon, night.

The deep wrinkles and linchification from scratching in the early stages of topical steroid withdrawal are still very visible. And upset me time to time, but it is was it is.  Itching has evolved into a burning and shock-y sensation. Fellow TSW-ers have talked about a burning sensation that was alien to me until now. The only way I can describe it is… it feels like a large area of nerves are excited and feels like a fiery sensation. It hasn’t been very intense at all, but worries me because I’m only experiencing it later into my withdrawal (while others have it much earlier on). It makes me think that the infamous 2nd flare is around the corner.

Hair loss isn’t as bad anymore. I lose hair at a normal rate and my bald spots continue to fill in and grow with baby hairs. It’s crazy to think back to 3 years ago when I was losing hair in bunches when I was unknowingly going through withdrawal (and consequently, going back to steroids).

Ups:

No more antihistamines! Though I continue to struggle with scratching, the itching has decreased by a significant factor. On a scale from 1-10, itching was about 6/10 in August. (Month 2 and 3 was at 10/10 intensity, Month 4 – 8/10, Month 6 – 7/10) I was able to taper off antihistamines until stopping them completely. So I am no longer dependent on Benedryl to fall asleep at night. That’s right!!!! This is the biggest feat this month – hands down.

Taking antihistamines every night was troubling me as I read an article about antihistamines (and similar other drugs) having a negative affect on cognitive functioning over long periods of use.  I was using up to 3 Benedryls and reduced to down to 2.5, then 2.0, then 1.5, then 0.5 from the beginning of my withdrawal. Though in Feb and March, no number of Benedryls helped me fall asleep or lessened the intensity of itching, so I wasn’t bothering with Benedryl back then. I continue to take Licorice Root pills to alleviate the itching at night, which generally reduces my itching noticeably.

Healing on the outside. Despite the sluggish pace of progress that is accompanied by topical steroid withdrawal, I have noticed improvement in my worst problem areas (eg. neck, wrists, stomach, arms). Things are smoothing out some and are looking better than a couple months ago. Comparing my skin to how it was 2-3 months ago makes my outlook on withdrawal seem hopeful.

I avoid potentially unsafe situations like laying on the sand or swimming at the beach where my broken skin would parent an unwanted skin infection. Also, I only use stand-up sunbeds since there is no direct skin contact with the bed. This may seem overly vigilant for a heedless spirit, but it’s not worth the risk. A friend of mine – happy & healthy, no steroid addiction – contracted a skin infection whilst in a horizontal, laydown sunbed. Being more vulnerable to infection, I don’t get into trouble.

As an aside, scratching has become a guilty pleasure. I physically feel better after a good scratch. Somehow more relaxed. Speaking of which… For the last month now, I’ve been able to to have a glass of wine without going into a flare-up. I last tested this in May with no success. I poured a glass — perhaps with foolish bravado — and regretted it deeply. But August has been good to me, so I’ve been enjoying a little bit of wine throughout the month.

Overall:

Slight regression in perioral area after handling Dexter in the bathtub. Itching  is reducing, though experiencing increasing burning and shock-y itch sensations. No longer using antihistamines is a wicked milestone to reach. I was thinking about it for a long time and finally felt ready to do it despite the incessant nightly itching. This new level of healing really tells me that my body is moving forward and repairing itself. I definitely still have many months of healing ahead of me, but hopefully have already seen the worst of it behind me. I’m not sure if I’m prepared to deal with the infamous 2nd flare if it is to happen. But if it would follow a lifetime of health, I’m ok with that.

Month 7.5

7.5 months down. It’s amazing how time can heal the body. The last pair of photos of my face/neck (below) are the most drastic change I’ve seen. My neck and face were incredibly raw. I had to keep it covered in various ways to avoid infection and allergens. Those red areas in the Before picture were oozy, open, linchified wounds now coming down and healing up. I was barely leaving the house back then – I was too itchy and raw. I try to use a light scarf around my neck to conceal my neck, which is my worst problem area. Something with a loose weave that’s breathable and non-abrasive. Kinda like this…

Loosely woven, soft scarves are nice for summer

HOT WEATHER. The weather lately has been so ridiculously hot (45C /112F) that I haven’t really bothered with a scarf in this heat, but I was sporting a scarf in late June when it was in the high 20’s (Celsius, or high 70’s/low 80’s F).  I was anxious about the outdoor concert (Tegan & Sara) I went to a couple weeks ago, but managed fine. I took off my very light long sleeve and wore a sleeveless tank. It felt a little weird at first but got over it quickly. Regarding body temperature regulation, I’m tolerating the warm weather more normally. In late May, I was heating up too quickly in 21C degree weather (69F) and flared. Though no human would tolerate 45C well, I was handling 27C (80F) fine. So no irregular body temperature issues. That seemed to be a thing of the early stages of TSW and addiction.

Remember: I used to use steroids only once (1 week course) every 3-4 months, so I was probably withdrawing as I was using it. I would overheat in 19C (66F) very easily and needed a fan on me whenever possible. I believe that the lack of body temperature regulation in the past is closely linked to steroid use and addiction, as I have seen a dramatic difference in how my body tolerates warm temperatures, and will be studied in the future when the bulk of the medical community recognizes (and acts upon) steroid addiction.

SUN BEDS. My face doesn’t seem to show obvious signs of TSW. Though I there was some minor ooze above my upper lip over the last couple weeks, as I stopped sun exposure for a month. I went into the sun bed for 5 mins and the wounds are closing up. Before you say anything, I am NOT recommending sun bed or tanning salons. I am using it to my own discretion. I’ve never used sun beds regularly and am generally anti-tanning. But given the medical situation I’m in, I am using sun beds minimally and cautiously. I was going 5 mins every 2 days, but this ended up being too much. I was becoming dark quickly after 2 weeks of that.

So I will be doing 2 mins twice a week for the next little while to see how that goes. Sun beds work for me because going out in this incredible heat for too long is just crazy, and I want to keep my perioral area in check as it has helped to close those open wounds and stop the oozing. I was going for UVB treatments at a dermatology office, though it was becoming inconvenient (a 2-hour bus ride roundtrip, every other day).

Dr. Rapaport recommends light sun exposure in the later stages of withdrawal. Listen to the ITSAN teleconferences or read the transcripts to learn about Dr. Rapaport’s view on sun exposure. I started getting some sun around month 4-5. At first, I experienced resultant itching afterwards though that is no longer the case – though it is difficult to pinpoint what causes some itching. I did not use sun exposure when I was raw and red, but when the redness was down.

SLEEPING. I’ve been sleeping regularly… as in my 36-hour long days are over. Yes, I was staying up for 36 hours at a time because the itching was so intense; I simply could not rest even after taking antihistamines. Benedryl seems to be my drug of choice. I was prescribed Atarax (a recommendation by my doctor and Dr. Rapaport), but didn’t fill the prescription for reasons unknown. Sleep has never seemed so precious after experiencing itch-induced insomnia. Existence was miserable. Now, if I sleep a regular 8 hours, I usually feel tired by early afternoon. Lately, I’ve been sleeping heavily and for longer hours (10-11) now that I can rest calmly. There seems to be a consensus amongst TSW-ers that they become fatigued easily and need rest more than healthy folk.

MOOD. I seem to be moving back into my same ol’ self. I’m starting to think about my academic future again and have been debating when that should resume. The infamous “Second Flare” that all my fellow red-skinners (others who are also experiencing Topical Steroid Withdrawal) experience seems to happen around the 8-10th month mark, so I am feeling apprehensive about going back too soon… My self-esteem is bouncing back from zero to some. I have a feeling it has to do with getting out more, seeing friends/family and frankly… being able to wear makeup again. It can camouflage my skin/face fairly well.

See!

My summer has been good so far. I’went to the local Sun Fest, which is a summer festival celebrating ethnic food and music. I saw Tegan & Sara in Toronto (though I would not recommend the VIP tickets for Downsview Park!) and had some good fun. I’ve been hanging out with friends and spending hot days indoors. 7.5 months feels like a comfortable spot. My need for baths are lessening – once a day for an hour, though that sometimes ends up being more like 1 bath every other day. I should be better about it, but the bathtub gives me the creepy crawlies.

Now for the update pictures. Some of these are pretty graphic, so Viewer beware if you haven’t seen what TSW looks like.

Kisses Again

It’s 2:30am, awake with the itchies… Thought I’d be able to pull another night off without taking antihistamines. The last two nights I did without. I was just too tired that I didn’t bother. I did have to get up a couple times because the itch was bugging me, but went to sleep soon enough albeit with less ease and more emotional distress. 

The bulk of June has been pretty good. I started getting a lot of sun, which seems to really have helped open wounds close up. The perioral area has improved vastly as a result. Compared to last few months of oozing, redness and hyper-sensitivity, the area above my upper lip has been the best it’s been for a very long time. The way I evaluate this ultimately is the Kiss Test.

I haven’t been able to really kiss Kris for the last 1.5-2 years  of our relationship because of the amount of sensitivity I’ve had. After even a touch of kisses, the skin will break with soreness and oozing, and will need at least 1-2 weeks to bounce back. Despite Kris’ efforts to keep his facial hair to a minimum, even the most minute scrape or touch against my skin would immediate tear my skin.

I’m happy to it’s changed and can kiss like a normal person in a relationship. Yay! I might experience some sensitivity like probably most people but NOTHING like how it was before. This is a new era of healing!

I remember last October 2012 was the worst point. I had rubbed that area and soooo much ooze resulted. I had a thickass crust of dried yellow plastic over my upper lip. It was distressing and terrible to look at. I almost wish I had taken photos of it just to show you have bad it was. I was crying, wondering if my existence would always revolve around my dysfunctional skin. I wondered if I’d ever experience a kiss again. I felt and looked disgusting. And am forever thankful that I found Dr. Rapaport’s medical literature on eczema.

It’s been nothing short of life-changing. 

I went away with my boyfriend for a day trip to Niagara Falls. We wanted to get away after his stressful week of work. So off we went to our favourite close-by destination. I survived the heat at 30-ish degrees Celsius. Luckily we were in and out of a/c’ed buildings but still am pleased that my body didn’t over react as soon as I stepped out in the heat and humidity. I was pretty warmed up but within my comfort zone. I wasn’t sweating either. Still  waiting for the sweating stage of healing to kick in and actually looking forward to it even. Here I come, sweet, sweet sweat.