Tuesday, August 25, 2015

Sunday, August 23, 2015 - Flare

Well, it's been a rough few weeks.  I'm not sure if I am feeling a little better, or I am getting used to the state I am in.   I am managing to work so I will hopefully not need to take any medical leave.  

I am freezing, so the blazing hot weather has been helpful.  I walk out of work, the heat hits me and I feel better.  When I get home it's into the tub.  I'm in a sleep/eat/tub mode and I am wishing time away. 


Monday, August 10, 2015

Sunday, August 9, 2015 – 762 Steps Forward, 686 Steps Back

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!