On September 23, 2013, 10 weeks into TSW, I returned to work
after a 5 week medical leave. Today, 2 fucking
years into this and I am looking into taking medical leave again. Every single symptom has returned, some
better, some worse than ever before.
Class, let’s review the classic TSW symptoms:
Rashes spreading and developing in new areas of the body. My rashes have rashes. And they are everywhere.
Intense itching, burning, stinging. The itching remains the worst part and is out of control And the stinging, which has never been an issue, has now joined in. If I hop in the shower for relief (hot water helps calm the itch) I do not know if it will be soothing warmth or a million pins. I think the scratching causes a certain type of rash that is susceptible to the stinging.
Visible and measurable flaking of skin – appears to be ‘snowing’. I’m Pig Pen personified. I can’t tell the difference between the comma and period keys unless I blow off my keyboard.
Oozing exudate. Maybe worse than ever. It’s disgusting and stinks.
Skin cycling between oozing, swelling, burning, and flaking. These are not serial, but rather, parallel processes, which means that I can be enjoying all four at the same time!
Red sleeves: (arms/legs become red and inflamed, sparing palms/soles). The hallmark “red sleeve, white palm” is back
Thermoregulation altered (feeling too cold or too hot). It's so weird to feel hot and cold at the same time. My body is radiating heat again, even when I feel cold. My wife informs me that this is what menopause is like. I’ll never know for sure, but ladies, you have my sympathy.
Nerve pain, sometimes described as “sparklers” or “zingers”. Damn it, I really thought these were gone.
Enlarged lymph nodes. Woohoo! I have no swollen lymph nodes!
Edema. A couple weeks ago, I gained 15 pounds in a couple days with the legs and feet swelling up. This has thankfully eased and I am back down to my svelt “just over a couple hundred” working weight.
Eye dryness and irritation. This came back worse than ever but has eased as well.
Skin atrophy ( “elephant skin“). You haven’t lived until you’ve had elephant skin on your penis. I will cherish this memory forever.
Hair loss: (head and/or body). Yup. My hair has really thinned out again. I haven’t had a haircut in months and I’m afraid to get one as I might not be able to do the Trump combover.
Insomnia and altered body clock. I really don’t want to go back on Ambien and hopefully the insomnia will turnaround soon. We dumped cable TV in our house, but I have discovered “Buzzr” TV on over the air TV. They play classic game shows such as “What’s My Line”, “To Tell the Truth”, and “I’ve Got a Secret”. Superb dozable television.
Emotional fluctuations, depression, fatigue, anxiety. I am beyond sick of this crap, but I am not depressed in the clinical sense. It’s hard to think about going through this for what may be years longer, but I remain hopeful that this will be but a memory before I know it. And in the global scale of suffering, what I have is a mere mosquito bite. Unlike Robin’s MD there is a positive end in sight. Speaking of Robin, she has been unwavering in her support and love and I appreciate her more every day!
Big hugs to both you and your wife, you both have been through so much with your health. TSW is a roller coaster, but brighter days are always round the corner. I'd had a tough time recently, but my skin is now behaving itself again and I'm enjoying every minute. It will get better, you know that.
ReplyDeleteSending you both much love from the sunny (at the moment) UK. X
Thanks Louise! I'm really glad to hear you are doing better!
DeleteI had a very rough flare at nearly 2 years. Considering it was only my second major flare and it caused my face (of all places) to look like I had second to third degree burns, I took it hard. Very hard. Looking back, the severity was worse in a way (my face was atrocious) but the flare only affected half of my body and I still managed to get out of bed every day and move. When I started three years ago, it took me ages just to get vertical. It passed in about 4 months, from start to nearly finish. The bad thing about it is now I am even more paranoid than before. My skin seems even more fragile (and incredibly sun sensitive) now then it did during the first year. But at least the hell that was last summer is gone. I wish you strength. This journey is long, trying and should not have to be experienced by anyone. That said, even though every time i even minimally flare I despair of every healing, I always return to nearly normal. Hang in there.
ReplyDeleteThanks Mandy and thanks for stopping by! If I understand you correctly, you started TSW 3 years ago and the initial flare and healing happened pretty quickly. Then a year ago you had a major flare? What is your history regarding TS use? Are you on ITSAN?
DeleteHugs from Texas!
Hi Dave. Yes, I will hit three years on September 5th. My cream usage was all on my hands only for 15 years until the addiction happened, and then my doctor gave me more steroids for arms, legs and face. About 8 months after that I found ITSAN, wised up and began the journey. My initial flare was awful, full-body and lasted about 4-6 months. Then I got my life back for quite a long time (minor minor flares only). Which made flare 2 so hard to take.That's over now but I feel I am dealing with fragile skin. I get heat rash VERY easily and feel like I have more minor flares than previously. But, in really looking at it objectively, I just spent a month traveling in Japan between moving house here and my skin is only freaking out about 10%. Not too bad, I'd say. :) I was on ITSAN but I had to stop. I couldn't take the depressing posts from those of us still suffering so long into the process. I only rarely read the blogs now too. My mental health is better for it.
DeleteI wish you strength and patience. This is a beast of a condition but, at least for me, my skin is always changing. Whether for better or worse, it doesn't stay stagnant too long. And I do believe that eventually, this will all be but a blip on the radar.
DeleteThanks Mandy. I too got a glimpse there of a normal life, but I am going backwards. I hear you on things changing. I figure that since my skin is worse but that other stuff is better means I am going through some kind of healing cycle from Hell.
Your sense of humour is fantastic and your blog post has cheered me up, even though I am very sorry for your suffering! I am 19 months TSW and flaring very badly, as bad as i was at the beginning. Feeling so miserable and reclusive, just dragging myself to work and then dragging myself into my bed. Rinse repeat. It's depressing. Thanks for the smiles, particularly the one about the period and comma keys on the keyboard haha, i think there are enough skin flakes on my keyboard to form another fully functioning human being.
ReplyDeleteHope you get some relief soon
Sarah
DeleteSarah, thanks for posting! Sorry to hear you are having a rough time, but I'm happy you enjoy my blog. I find posting therapeutic.
I'm with you on the depressing thing. I am wishing time away. I want on of those Bed Bath & Beyond universal remote controls from the Adam Sandler movie "Click" where I could just fast forward life a bit.
Hugs from Texas!
So Dave, how is it going?
ReplyDeleteI have a very specific question, i got some excessive skin too on my penis, what happend to yours? By any chances has it got any better?
Hi Black US! My post you are responding to was made during my 2nd year flare, which was a real doozy. Mr. Happy went back to normal, and the elephant skin has not returned, even during the 3rd year flare. There was some pretty intense itching that felt like it was coming from the core, not the surface, but that has (almost) disappeared. I was afraid I'd end up with some weird itching fetish, but nope, all is well. You will be all fine again.
DeleteThank you, i hope you are doing fine and that i get better too.
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