I know it sounds like I have literally lost my hands, but the truth is they are still there but pretty much useless. One of the major things I hate dealing with is my hands or lack there of. They are very weak, swollen, and barely have any skin with deep fissures. When I go to fold laundry the material picks at each skin cell, I load the dishwasher and everything seems to get into all my open wounds and either splits them further or stings like acid in the areas without skin. I have had no skin on my fingers for almost 3 years. There were a couple of times while I was on prednisone and they were almost back to normal but those moments were fleeting. Here I am back to begging people to help me do the most basic of things. I HATE ASKING FOR HELP. One of the worse things in the world to me is losing my independence, but thankfully I have support and people willing to help. I should just be grateful for the help instead of cursing the loss.Sometimes when I can barely walk and then I have to be able to do something I just cry. I bet I am not the only one, but I try not to cry about this as much as possible simply because it gives me a headache. I mean who wants to feel like we do and then on top of that have snot running down our faces and an extra migraine, but even that feels like my body doesn't let me cry. How much can one person bare? I suppose throughout this life I will be finding out. I decided yesterday that I am going to sing and dance as much as possible. Now I do not want to imply I am a good singer or not, that is not the important part, but just to sing because it helps me feels better. I feel awful all the time but when I sing it helps me ignore it. I want to be one of those people who almost don't seems to notice the awfulness life threw at them.
Do not go where the path may lead, go instead where there is no path and leave a trail.
I am so sorry to hear about your hands, Plugginalong; that sounds so difficult. I hope that some new treatments will be developed that can help to give you a "second skin" and bring back functionality. Here are a couple of article that may be helpful to discuss with your doctor:
I can't imagine how that feels. I used to get "mechanics hands" where my skin would split open on my fingers and my hands and wrists would swell, but it went away after a while and doesn't sound as bad as yours. It sounds like the medication isn't helping keep that under control at all and that's terrible!!
Never feel bad about asking for help. It's not our fault that we are in this position. Do what you can on your own (safely), but I bet you've done your share to help in your lifetime so far, haven't you?
I bet you're a good singer you just would never admit it!
Hang in there and know that you are never alone...
I admire your strength! Unless you’ve walked in your shoes it’s impossible to imagine how you feel. You mentioned that prednisone had helped. Are you no longer able to take it? Leave a trail of musical notes and inspiration… Xo
I am so sorry about your hand situation. My idea is not really a solution, but may provide more comfort for your poor hands. My situation is not anything as extreme as yours, but my idea may add more comfort for you.
I have Psoraisis (+ 3 other a-i's) and was experiencing hand issues a few months ago when all the skin peeled off my one palm in a week, then there was a week of grace period, then another layer of skin peeled off the same palm. When I say peeled, it was like what happens after a bad sunburn when your skin can just peel off in sheets. So that one palm was almost skinless, bright red and so sore!
Back in the day, growing up in cold cold Chicago and Milwaukee, my hands would get so chapped that they'd bleed. Mother would put something, probably Vaseline, on them and then a pair of plain white cotton gloves to keep the ointment from getting all over the sheets at night. In the morning hands were so much better. Fast forward to my recent issue with the peeling palms - couldn't find any white cotton gloves in the local drug stores, so went online to Amazon & they have so many it's incredible. Seems marching bands use them, folks with hand issues like us - they even have some that look like the dress gloves Marines wear. I had to order a dozen to get a really great price - I think mine came out to about $1.50 a pair.
But if you get a dozen, you can put fresh ones on at any time. That would keep the laundry from pulling at your skin, cotton breathes so you barely notice they're on, and if anything splashed, cotton soaks it up. They're completely washable BUT they will shrink a bit with hot water and in the dryer, so if you want them loose (tight might bother your skin) go with the next size up. OR you could order one pair of a couple different sizes & styles to see which one you like the best. Also, if you avoid putting them in the dryer they probably won't shrink much at all - just hang them over the horizontal bar of a plastic hanger.