The Hand-Hell Blog - If Your Hands Hurt, Welcome Home!

A glimpse of early Summer hope, then...

2021-09-01T17:24:00.018-07:00

New fingertips appeared briefly!

Time passes, and my ability to cope with life without fingertips improves, even if my fingers don't show much improvement! The fingers wax and wane in terms of symptom severity. In the early stages of my issues, I could look forward to annual remission in the summer months. That ended in 2018, when my fingers split open in October and haven't seen complete remission to date (today being September 1, 2021).

My fingers looked their best during an early summer road trip this May/June. We took three weeks to venture from Seattle to Eastern Nebraska (and back) via rural back roads. We took our little Chihuahua dog, camped and staying in little motels. The weather was just starting to heat up - and it got hot quickly.

Things got hot and stayed hot (over 100 F every day) in our part of the world, a place unaccustomed to such heat. I don't mind the heat. Actually, I like dry, hot climates above all else. Places like Moab, UT. But I digress, as I live in Seattle where it is not a dry heat. It's humid.

I can't explain with certainty what made my fingers improve, nor can I explain their undoing. It could be related to soaking in the natural healing waters of our beautiful country. Our road trip included visits to a number of mineral hot springs, including Moccasin Springs, in Hot Springs, SD and the public bath house in Thermopolous, WY.

But, for whatever made them improve, things changed I am now back in HAND HELL!

Lookin' crusty (August 2021)

On the upside, my attitude about my hand problems continues to evolve and improve over time. It's a blessing! I no longer care about the minor arthritic pains, which I now consider a sign of graceful aging. I have friends who died young and will never experience arthritic ailments - but I'm still here, and thankful for it.

Back to bad (August 2021)

I started playing music regularly about two years ago, and nowadays I try to spend at least an hour a day playing something - my accordion, a melodica or one of my vintage pump organs.

I'd love to play guitar, but can't handle holding down strings on the fret board. I do play on occasion, using a slide guitar that sounds surfy-awesome with open tuning and a slide bar - using finger picks on the right hand. I make do with whatever my hands allow, switching instruments as needed. If split fingers make playing the bass side of my accordion impossible, I just switch to the pump organ or harmonium!

Life goes on and I resolve to make the most of each day I get to live on this planet. I will follow up on the possibility that soaking in the natural mineral springs led to the improvement in my fingers.

I'd like to send out a greeting to blog reader Sara M, fellow sufferer of rheumatic issues and another denizen in Hand Hell. I hope your hands are feeling OK!

(2021) Hand-Hell Blog.

Lupus, Vasculitis and Living: I survive

2020-08-15T12:29:00.007-07:00

It's been almost two full years since the last time my hands had their fingertips. Prior to 2018, I could look forward to a summertime remission of symptoms. But, since October of 2018, I have lived every single day with raw, sensitive, pads of pain on my hands. I was once upset/worried about the bit of osteo arthritis that began to plague me in my early thirties.

My Fingertips Now

Arthritis, particularly the standard osteo-arthritis that settles into the joints of most humans sometime between the fourth and sixth decade of life, is a badge of a life well lived. Rheumatoid arthritis is more of a bummer, with erosive qualities that are both painful and disfiguring. Fortunately, most of my arthritis issues are of an inflammatory nature and are non-erosive. I can work through the pain of arthritis - no problem. It's a nice little reminder that I am still alive.

Once all the layers if the epidermis are gone, the smooth area under where the fingertips would be is thin and almost transparent. A simple magnifying glass provides a window into the mysterious world of human anatomy... little burst blood vessels and little white packets of something (?)

Life goes on, with or without fingertips.

Chicken Dinner with giblets in Hand-Hell

2019-03-08T05:00:00.000-08:00

I was excited to have a friend from my dad's days teaching at the law school joining us for dinner, so it seemed festive to roast a small chicken with a few potatoes. And it was nice - in theory, and practice a successful meal, but the preparation was an afternoon in Hand-Hell.

The chicken I buy usually come with their innards packaged in a small paper bag in the chest cavity. I discovered this handsome 5lb bird came still partially frozen (blue fingers!) with all the entrails lodged icily inside the bird, requiring fingertip raking to remove the nasty bits.

My fingers went numb, the blue and white crepe paper flesh looking cadavery and utterly unappetizing. Hopefully the company will think the healthy gal cooked - the one that comes in the afternoons to help with dad. Who wants to eat a meal prepared by fingers that look like this?

Gloves. They help for a while, but latex and any rubberized material where the skin can't breathe - well, it gets ugly. The flesh waterlogs and falls off, making the situation even worse. Cotton 'manicure' gloves are my 'go-to', but it isn't sanitary to handle raw chicken with them. Because eeeeewww.

Would you care to join us for dinner... in Hand-HEll? You're cooking!

(C) 2019 Hand-Hell

Why don't you stay home and wear oven mitts?

2019-03-01T06:00:00.000-08:00

Yesterday, I roared in pain getting an item out of my purse while we were driving to the store. It was a quiet day with snow covering the Seattle streets, we didn't have music playing so my scream scared my sweetie and the little dog.

"Why don't you just stay home and wear oven mitts?" he suggested, halfway seriously. My sweetie is a saint of a tolerant man and I am grateful he tolerates my long winters.

If I could stay home, I would. But as 'women of a certain age' will understand, I am responsible for the care of others. My 83 year old father had a massive hemorrhage years ago, I moved in to care for him when my mother died three years ago. He dresses and showers on his own, but I am entirely responsible for meals/finances/medication, pretty much everything. Help comes part-time during the week, but she has been on hiatus for two weeks for personal reasons.

Sewing Time! a tender moment waiting to go sideways in Hand-Hell.

2019-02-27T07:00:00.000-08:00

Sewing Time? In Hand-HELL maybe!

Normally I welcome the opportunity to break out my old sewing basket and make a small repair. Fixing a missing button or torn edge is a simple way to extend the usable life of an object for myself or a loved one. A mundane yet tender activity, taken for granted until... your fingertips fall off and open sores linger in their absence. Domestic bliss morphs into HELL when firey pain interjects sharp jolts of rage into the protracted, frustrating charade of a once simple task.

Sewing is particularly nostalgic since I inherited my mum's old sewing chest. This was the box she whipped out in my childhood to mend treasured objects like my comfort blanket, blankie-boo-boo.

I collect sewing notions at shops like Daiso, the Japanese dollar store. It is satisfying to have the right tool when needed. During one winter without fingertips I fought and lost a battle with a loose drawstring duct-taped to a pencil, so I appreciate stuff like the thingie for threading lost draw-strings through lounging pants. Sometimes nothing helps, but the right tool can make life easier for those of us in hand-hell.

Work-arounds are nice, but I would love to solve my problem once and forever. I'm having fantasies about summertime and the possibilities of my fingers healing over in the heat that will surely come. But, as surely as the wheel follows the ox that pulls the cart, winter will come and my fingers will tingle, crust and the fingertips will just fall off.

Today I darned the edge of a hole my sweetie burned in a favorite sweater. I used yard and a big fat needle, only hurting myself and cursing out loud once. It was more of a simple bark, not a chain of profanity which comes from worse damage.

So there you have it, daily indignity #3, sewing time!

(C)2019 Hand-Hell Blog

Yogurt Hand-Hell

2019-02-21T06:00:00.000-08:00

For breakfast in Hand-Hell, we serve yogurt

Yogurt for breakfast? My favorite, particularly the real full-fat stuff. Ellenos Greek style is my personal favorite, it is not low-calorie or low-fat and it is delicious. Yogurt requires a spoon to eat, or a smoothie must be made (think buttons on blender). So, a spoon it is, every morning.

It usually goes without incident. I manage to take off the outer plastic cap, the foil lid (lick it clean) and then I manage to stir the yogurt. My favorite spoon doesn't reach the bottom easily, so I eat about 1/3 and stir again.

I manage, but it is significantly more difficult to eat without fingertips. On the upside, this has probably contributed to my recent weight loss, which has been intentional and the result of reducing calories and increasing exercise. Les weight to lug around is helpful for my joints and for the sores on my feet, which are not as bad as the ones on my hands.

Does anybody out there have strategies for managing to eat when your hand problems flare up? I'd love to hear them.

2014 Blast from the Past - and a Wintertime Insight!

2019-02-18T06:00:00.000-08:00

I found this photo from about five years ago in Richmond, Virginia. It was sandwiched between photos of snow flurries outside and different land-lording projects requiring vigorous hand abuse.

Hello, Friend, from Hand-Hell!

Trolling through hand photos on my camera roll gave me a critical insight to my problems. Virtually all the photos of bad fingers are from the winter months. I live about half way between the equator and the north pole, so the worst of it is December-February but the season varies and can extend. Extended cold weather, coupled with manual trauma, leads to finger damage that does not heal for months.

Summer time flare-ups were much worse when I lived in the American South, where air conditioning is ubiquitous. The jarring contrast from warm, humid, outdoor air to the frigid, ionized interiors was a trigger for my fingers to turn blue. Now I live in the temperate Pacific Northwest, where mild summers minimize my air conditioning exposure. During the heat of summer, we dine outdoors on our patio and stay comfortable without AC.

The insight isn't that the cold weather is bad for my fingers. No kidding. The insight is that my fingers do clear up long enough, and consistently enough for me to stop photographing them for months at a time, and it's always during the summer!

Wow - this effort is already reaping benefits. If I ever fix my wretched hands, I'll do what I can to share the way with others.

Hand Hell - buttons to push banking at the ATM

2019-02-15T06:00:00.000-08:00

Greetings, Readers!

Welcome to Hand-Hell daily indignity #4, a trip to the ATM. I am thankful to be in a situation where we deposit more money in the bank than we withdraw, so we have an ample emergency cushion.

The pain when visiting the ATM is the literal pain of having to push the buttons with ulcerated fingertips. Yes, it is true that only 8 out of 10 fingers are ulcerated right now. However, without a good thumb, having a good pinky and ring finger are only a start.

Before getting to pressing buttons, the ATM card has to be wrested from its position slid snugly in the wallet. All of which has to be drawn out of a purse (zippers!) while sketchy tweakers linger down the block.

The best option is to bend the finger and use the knuckle side to press the buttons. This tried-and-true workaround gets easier with practice and works on touch screen surfaces too!

Just imagine going through all this to discover an overdrawn account or other bummer. Ugh.

(C)2019 Hand-Hell

Hand-Hell - Another daily indignity, the dreaded scissors

2019-02-13T07:00:00.000-08:00

Greetings, Readers,

Ah, scissors. When they work well, they make their task a joy to perform, as long as you have fingertips! I'm right handed, but it is easy to switch to left handed for most tasks, but that's not the case for scissors. Scissors are chiral - 'handed', so it's hard to use my regular scissors as left handed ones.

I have arthritis, and it hurts a tad when using scissors to cut something hearty, say a thick fabric like velvet.

A touch of arthritis is a gentle reminder of graceful aging. Hitting the sweet spot on an open ulcer right on a raw nerve delivers a searing come-to-jesus pain, difficult to understand unless you are close enough to hear the banshee scream it elicits.

The blessing of the thick crusty areas which form around the areas fully lacking the epidermis (that's 5 full layers gone, down to the dermis) is protection. Crusty bits keep the tender bits from hurting, until it doesn't any more and it just hurts like holy hell.

Somehow, I feel a little better by having this place to complain. Does anybody hate the scissors like I do? I'd love to hear some scissor-hating stories from fellow denizens in Hand-Hell.

(c) Hand-Hell Blog

Welcome to Hand-Hell: Changing Toilet Paper Rolls

2019-02-11T07:00:00.000-08:00

Greetings, Readers!

Changing TP, Yep This Sucks

Let's talk about a daily indignity for those with hand problems that most folks probably take for granted - changing the toilet paper roll in their bathroom.

For my fellow finger-tip challenged and the rheumatologically desperate, changing the TP roll is a complicated endeavor which can lead to excruciating failure at any minute. The springy tube that must be compressed for removal - well, that requires a surprising amount of fingertip pressure and dexterity. Decent folks who find that they are the one to change the toilet paper *every single time* may write it off as Murphy's Law, a fondness for wadding or a hamster sized bladder.

I find myself getting paranoid and rationing paper so I won't have to face the changing-of-the-tube. Sometimes I wonder if others in the household EVER change the tube, or do they ration their squares to stick me with the job? Right now, the left pinky and ring finger have ok skin on the finger tips, the rest have open sores, or crusty pre-sores. It's awkward, but the roll got changed today.

Am I the only person who dreads this?

(C) Hand-Hell

Hand-Hell - Greetings fellow autoimmune sufferers and others in Hand Hell!

2019-02-10T16:10:00.000-08:00

Welcome, Reader! I suffer from Systemic Lupus Erythematosus, an autoimmune condition where the immune system attacks the healthy tissue of the body. 'Lupus' manifests in different ways, generally lasts a lifetime and symptoms flare up and go into remission for a variety of reasons. Many elements of lupus and autoimmune disease in general are poorly understood. At least it isn't contagious.

"F-U Fingey!!"

My biggest ongoing problem is my hands. These wretched little paws turn a spectacular shade of blue from Raynaud's syndrome. The tips of my fingers get crusty patches which fall off, leaving me without fingertips. It looks painful, and yes, it is. Dressing oneself- buttons, pulling socks on, shoe laces - it all requires delicate action from fingertips.

A further indignity took me a while to fully realize. Strangers sometimes think of crack heads/ meth users who burn their fingers on the hot pipe, and mistake me for such a tragedy. Ugh.

Since my diagnosis in 2004, I have gone through cycles of remission, flare up, etc. The symptoms of my autoimmune situation return again and again, with the worst thing being my hands. Again and again. Sometimes I yell 'F-U FINGEY!!' at my hands, but it doesn't help.

The arthritis and stiffness are well managed with NSAID treatment, so at least there's that. I am aware that people who lose their hands to land mines or IEDs would be thankful for what leaves me feeling defeated and pathetic.

I dedicate this to anybody else suffering with hand problems. Sometimes it feels good to know you are not the only one out there with bad skin problems on your hands. So if you see this, and it helps you feel better only because you think, 'at least that's not me!', I am glad this helped.

I will share my voyage of lotions, potions, treatments, ablutions, therapies - anything that might help me regrow my fingertips. Very little is off the list of possibilities, I am desperate, not squeamish and resourceful. Maybe I will try something along the way that will help your health voyage!