I remember reading in the forum back in my early days of tsw and being so shocked by the things the “veterans” said. I remember reading people talking about rolling around on the floor, crying, bleeding, and clawing at themselves. I smugly thought, oh please, I’m strong! Ill never be like that! Wrong. I’ve been that low a few times. I think we all hope at the beginning of our journey that we won’t get a bad as other people. We are usually wrong.
I remember a guy wrote something like “one day you wake up and your skin is falling off of you and you think yes! Today is going to be a good day.” In my early days, shedding was terribly painful. I thought they were lying to us! But now that the shedding is smaller pieces of skin, rather than huge pieces, it is less painful. So now I’m at the point where a shed is good! Yesterday my shoulders, neck and arms started falling off at work. Not the ideal place, especially since I was wearing an open neck shirt. But I felt pretty good. A friend came over after work and I was actually in high spirits.
I took some pictures out of the tub yesterday. My feet continue to be a huge problem. The urge to scratch is just too strong.
Everything feels a bit swollen. In all of my hotspots I feel swollen lymph nodes. I think it’s time for a lymph massage. My mom was doing them on me and they seem to push the flare out. The problem is that for about two days, I have a terrible flare. Ooze pours out of my body and I am super red. I cannot do anything on those days except sit on the couch wrapped up in stuff to soak up the ooze. So it means planning ahead.
Here are the pictures:
Stomach still red
Arch of foot
Very light sleeve
Sleeve up close:
This morning I was thinking about the variety of emotions that TSW has evoked in me. Like I have said numerous times before, I am not an emotional person. I have never been one to wear my emotions on my sleeve. TSW has turned me upside down and I am quite the opposite. At 27, I am learning how to confront emotions and express them, rather than suppress them. It is not my intention to whine. I have decided to be as open as possible about this process- and show the ugliest moments, both physical and emotional.
I have always hated it when people say “It’s not fair” or “that’s not fair.” I believe life is not fair and that sometimes we get dealt a shitty deal. That is life, unfortunately. Nobody is going to have a perfect life 100% of the time without any hardship. Those hardships are what make us stronger.
Before all of this happened, I was on track to transition to the next stage of my life. My partner and I celebrated 5 years together last year. We were making plans to get married, buy a house, and have kids. My career was advancing and big things were on the horizon. We decided to seriously start saving money to make our future a reality.
Fast forward to now, just a few months later. Any financial goals I had are completely crushed and I know that I won’t be able to begin to get on track until maybe the end of the year. C lost her job in my second week of TSW, right after I was hospitalized, so in the beginning I was working full time, killing myself to support us. When things got bad, I had to take a month of unpaid leave. I have thousands of dollars in medical bills from my hospitalization. Not to mention the added cost of all of the TSW related stuff I need. I’m also only working part time and C is working, so we are able to get by, which I am grateful for.
My career is also on hold. I am working about 25-30 hours a week, which is barely enough to keep caught up, much less do anything that will advance things for me. We had plans to expand our office but now everything is on hold until I get better.
All of my relationships have suffered. C has turned into my caregiver. We don’t really have a romantic relationship anymore. Her days revolve around doing my laundry, picking up stuff for me at the drug store, cooking, cleaning, vacuuming, etc. My friendships have also suffered. Many people that were my closest friends are completely absent from my life. A few have tried to keep up with how I’m doing. Some friends won’t look at me when they do see me. That is a pretty terrible feeling- when your so called friends find you so blindingly hideous that they won’t even look at you.
Some days, I can’t help but feeling how unfair it is that this happened. That medicine I was given to treat eczema (what now I see as relatively minor) could do this to me. Maybe I’m angry at myself for not being more of an advocate for myself, not doing more research, for finding ITSAN when it was too late. At least a year of my life has been taken from me. It makes me angry. I want to stomp my feet, throw a tantrum and scream “This isn’t fair!” One of the first breakdowns I had was about 2 or 3 months in. I had worked all day and was in so much pain I couldn’t see straight. I had to stop at CVS (drug store) to buy Epsom salt. I started crying inside the store and then started sobbing in the parking lot. I asked myself, “What did I do to deserve this? What terrible things have I done?”
When I have these feelings, I have to remember that this is temporary. I have to remember that life isn’t fair and things can only really go up from here. I have to remind myself everyday that things could be worse. Aside from all of this shit, I am healthy. I saw the doctor a few months ago and had bloodwork done, which came back perfect. I will get better. I already am improving! It is just a terribly slow and painful process.
Skin update: saw Dr. Rap yesterday. He said he is proud of me and I am making great progress. I’m still not ready for sun, but hopefully soon.
Today I am flaring a little bit and in some pain. C says my bathtub pictures suck and don’t “do the real thing justice.” So I will work on having her help me take pictures.
Happy healing skin friends. Hope you are all having a flare-free day!
Friday marked 19 weeks of this madness. I had a pretty good week/weekend overall.
Saturday I went out to dinner for a friend’s birthday. I was feeling so great that we went out after dinner to a bar! I have only felt up to eating at a restaurant a handful of times in the past 4 1/2 months, which is something I loved doing in the past. So it really felt great to just hang out, sip wine, laugh and smile. I so rarely laugh or smile, that it feels like a treat when something makes me feel that way.
Friday was not such a great day. I’m definitely seeing a connection between exhaustion and flares. By the end of the week, my condition has deteriorated and my skin gets worse. At least one weekend day is spent in pain and I have to use painkillers to make it through the day. I had an 8 am court appearance on friday and had to wake up considerably earlier than usual to make sure I finished my morning ritual. Stupidly, after the hearing I went to the office and worked for a few hours. It was too much for my body to handle and I ended up taking painkillers and spending a lot of the night in the tub. I slept in late on Saturday and woke up feeling much better.
As for my skin.. Today it is looking pretty good. this morning a bunch of skin rolled off my back in the tub. I think there were areas that weren’t ready to shed off and so there are some red oozy spots on my back. It is of course super dry, but it is actually looking good. I did a number on my arms and legs and they were covered in cuts and scrapes. Two days later, most of the cuts are gone.
Here’s the latest pictures. I hate that the camera makes me look more red than I am, but what can I do?? I’m snapping pics of myself in the tub, so I don’t have the most sophisticated system.
Chalon says hello
I never used steroids on my face until a dermatologist tried to wean myself off clobetasol (super potent) and told me use derma smoothe oil (mild) all over, including my face and scalp.
I also want to clarify something here- I’m not totally against steroids. I understand they can be a wonderful drug. Dr rapaport says that doctors trained in the last 20 years have been taught that only steroids improve eczema. Doctors have to be more careful in prescribing topical and oral steroids. In my opinion, I don’t think prednisone should be used for eczema unless there is a life threatening situation. And all doctors should warn patients, teach them how to use them, and see patients every two weeks, ensuring they take time off.
Anyways, I have some face pictures that I have taken over the past few months. I have been too self conscious to post them. But as I venture out into the world, I realize that I must overcome my self consciousness. Many of these pictures are at my worst – the only people who see me like this are my parents and C. Yesterday I went to the mall next to my office to buy a few things and I felt the stares. So I decided to stare back. 🙂
Anyways here we go
Weeks before I started my withdrawal:
First day of withdrawal
About a month in:
About six weeks:
Around three months:
3 months also- during a terrible flare
About three months as well:
About three months
Right after Houston, almost 4 months:
A week ago:
And this morning
Things have been slowly improving. C said last night was the first time in months I was like my real self. I was up and moving around. I know it annoys C when I’m sewn to the couch and won’t get up except to pee and get in the bath. Last night I was up, doing things for myself, and trying to help a little with the housework.
This weekend was really good too. Saturday we went on a walk at a nearby park with our dogs. Only in Beverly Hills do you chat with a fellow dog owner and upon the obligatory “your dog is cute” comment, they respond “she’s been on tv, she’s known”
At the park, the itch hit me real hard, but it does seem like it comes in tsunami like waves and then settles down. Also, a little boy stopped dead in his tracks to drop his jaw and stare without looking away for about a minute. It really hurt my feelings. Yes, I know I look like a freak but if you have to look, try to catch a quick glimpse, don’t stare!
Saturday night we went out to dinner(!!!! ) with friends. I was fine and happy to be out. They came over afterwards and hung out. It felt great to sort of feel normal again. Unfortunately, I overdid it and stayed out of the bath too long and ended up in a lot of pain. But once I woke up Sunday, I was doing a lot better. Sunday more friends came over! I’m really feeling the love.
Monday was a holiday and I worked a few hours and had lunch with a friend. I think I’m getting comfortable with being in public, brushing off the stares.
My skin has been shedding like crazy. My back has been shedding twice a day. The red comes and goes throughout the day. Everyday I cut myself up and everyday those cuts heal over and then shed. I’m still tethered to the bath and need at least three a day. I’ve been trying to cut back to two , but I just can’t seem to kick it.
So as of now, we are cautiously optimistic. I WILL flare again, there is no doubt about it. I want to be as realistic as possible and not get a sense of false hope. Based on other sufferer’s stories, blogs and the forum, there is a common “second wave” flare that comes when it seems that you are almost completely healed. Obviously I’m nowhere near that, but I am definitely improving. I just want to remind everyone out there rooting for my progress that I will flare again. It really sucks to backtrack after making progress but I suppose it is just a means to an end.
Here are some morning bathtub pics. I apologize for the crappy quality but I hate posting without pictures so I usually end up just snapping pics in the tub.
Scratched foot with “elephant skin”