At the half way mark into the month and wanted to check in and give an update about how I’m doing. The past 2-3 weeks have been really bad. Overall, my skin was feeling OK, but my sides/back have been absolutely horrible. My sides have huge cracks in them that have been oozing profusely. Everyday after work, I found that my camisole was completely saturated with dried ooze. I had to take a 2 hour bath everyday after getting home from work because my sides were covered in crust and were extremely painful. I have also been swamped at work- one day this week I had a 7:00 AM appearance in Orange County and had to wake up at 4:30 AM to get my morning bath in. I was stuck at the office until 7:00 PM and by the end of the day I was in so much pain, I was crying. The night before, I was so overwhelmed with work, I sobbed the entire way home from work.
Yesterday, something magical happened. My sides stopped oozing and started shedding. The shedding is very painful, but it is a welcome respite from the cracking and oozing. The skin isn’t just falling off – it has to be helped off and in some areas where the cracks are still healing, the scales are very thick and stuck on there. Last night I scratched a very sensitive area and it oozed a little, but that is nothing compared to the ooze faucet I have been dealing with the past few weeks.
Last night, I came home from work and we went out to dinner. NO BATH. Yesterday was the best day I’ve had in weeks. I feel like I was feeling before the “second wave” hit back in August. My skin is super dry, but there are many small spots that aren’t super dry. The redness is down overall. Itching has improved too. I think that for now, the flare is on the way out. Who knows what that means for the future? We will have to see.
A few nights ago, I was telling C that I feel like I’m no longer “sick”. I think about the first 6 months and that I was really really sick. I still have rough days and my whole body is still covered with TSW stuff, but overall, I am nowhere near where I was from September 2012-March 2013. Whenever I see someone now, they always tell me I look great, even if I feel like I look red. Overall, I’m just a lot better than I was back then. I do think that flares hit me a lot harder emotionally now. I also think that my stress level at work has hit the roof, which leaves me less time to relax and decompress at the end of the day/week. I use the few hours of free time I have a week in the bathtub and when I’m out, I just want to chill out and watch Hercules (my new obsession). So I have been going out less, seeing my friends less, etc. I’m starting to venture out more now that this flare is ending.
Anyways, I feel so relieved that things look like they are on the up again. I am cautiously optimistic about the future. I think a big part of the reason I’m feeling better is that the HEAT IS GONE!! The heat was really killing me and making me flare up. I am so happy and relieved that we are moving into fall. Los Angeles has such great weather, it isn’t too hot, but it is just right.
I meant to take some body pictures today, but I didn’t leave myself enough time.
Today is 13 months. Wow. One month into the second year of TSW. Im slowly coming out of this 2 ,moth flare. Or so I hope. As you can see, my legs are mildly flaring again. It seems like it happens every few months.
Keep on truckin skin friends. We will be on the other side of this in no time.
I have two types of pain: general skin pain from scratching and dryness and nerve pain. I’ve talked quite a bit about nerve pain in the past. It went away for a while – when I was on gabapentin it disappeared. When I came off, it came back. Now it is almost unbearable and I am considering going back on gabapentin because feeling crazy is better than feeling pain. It is a tough call.
The nerve pain is so bad in the morning when I get out of the tub that even 10 mg of Vicodin will not even touch it. I have been having horrific episodes that last for up to ten minutes. It feels like someone is stabbing me all over my back, chest, sides, shoulders and sometimes elbows. It is like thousands of needles with electric currents. Sometimes it is concentrated in one area and I repeatedly experience a deep, hard stabbing sensation.
So what do I do for the pain? I take drugs. I take Vicodin when it is bad because it numbs my body. But often that doesn’t work at all. I have been putting myself into a meditative state where I block everything out and just breath. Sometimes I give myself pep talks. I probably sound like a football coach with one too many hits to the head. “You can do it, Leslie. Just get through the next 15 minutes. The pain is temporary, just keep breathing.” Sometimes nothing works. Yesterday I was sobbing and shrieking at the top of my lungs and started screaming “I want to die, please kill me.” Do I mean that? Do I want to die? Of course not. But this level of pain… I just can’t handle it. It makes me feel the saddest, the lowest, the most despair I have ever felt. I have never felt pain like this and when it hits, it strips away everything I have and leaves me literally naked on the floor, in too much pain to even get in fetal position. I wonder how others deal with nerve pain.
It is weird- the worst two symptoms that I thought had passed are now back in full force. Oozing and nerve pain. I can handle the regular TSW itch. I can handle the fact that my skin is constantly falling off and landing all over the place. I can handle being hideous and being stared at. I can handle the dryness. I can handle one bath a day. But more than that, I just can’t handle. Getting worse, going back into this hard place, is just… I don’t know if i can do it. But what does that mean? I was talking to a friend who is a few months behind me. She said that injections stopped working for her and that she would flare up after a few days. So, even if she wanted to go on steroids again, it wouldn’t be long before she was back at that point. I have a similar experience – clobetasol stopped working for me. So what choice do I have??
I think that I have three choices. I’m going to explore them here.
Option 1: keep doing what I’m doing
Not much to say here, except keep working and just wait until it heals.
Option 2: the impossible option
Quit my job, eliminate all stress and just relax and focus on my healing.
Oh wait… I have no money because taking 1.5 months off unpaid in the last year, getting paid for “part time” work, and two hospitalizations depleted my savings. We are getting back on our feet, but if I quit my job, we would probably have to file for bankruptcy.
So option 2 is a no go.
Option 3: cyclosporine
Cyclosporine is a drug given to transplant recipients. It is a major Immunosuppressant. Some people going through TSW find that it alleviates their symptoms. Side effects include: lowered immune system function and increased risk of infection, damage to ovaries, sensitivity to light, rebound when you taper, lymphoma, hair growth, organ damage. You actually have to get blood tests every month to check whether there is organ damage.
I am most concerned about the risk of infection and damage to ovaries. I have not had an infection so far, which i think shows my immune system is doing marvelous job. Do i really want to screw that up?? Also, C and I want kids and will probably start talking about planning once I’m done with withdrawal.
So, looks like cyclosporine is out too.
So, that is the dilemma. Looks like I’m stuck sludging through this shitty period.
Sorry for the latest string of depressing posts. hopefully I will have a turn around and I can get back to the old me. thank you to all who have sent me words of support. Hope you are all having a flare free day!
Saturday was great. I was finally feeling good. Sunday I woke up feeling very sensitive. By Monday I was red all over and oozing all over. The itch became unbearble. Nerve pain is back. I took Tuesday off from work. If I take a day off, you know it is bad. Today is fading a bit, but still oozing and still in quite a bit of pain.
Back pics from this am… My sides are terrible, cut up, oozing, with awful nerve zingers. Unfortunately didn’t get a pic. Upper back is red and oozing nonstop. So much swelling and elephant skin in lower back.
And of course…dogs!