googadsparismina

Wednesday, September 1, 2021

A glimpse of early Summer hope, then...

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.






Saturday, August 15, 2020

Lupus, Vasculitis and Living: I survive


Bad thumb

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. 

Adios, fingertips!
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.

(C) 2020 Hand-Hell Blog.

Friday, March 8, 2019

Chicken Dinner with giblets in Hand-Hell

blue fingers with ulcers in front of bag of raw, whole, chicken with giblets
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

Friday, March 1, 2019

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

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.

Wednesday, February 27, 2019

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

Hand with open sores on fingertips in front of sewing basket
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.
Daiso sewing notions with hand-hell autoimmune fingers in front


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

Thursday, February 21, 2019

Yogurt Hand-Hell

yogurt in hand-hell
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.



Monday, February 18, 2019

2014 Blast from the Past - and a Wintertime Insight!

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. 
Raynauds, distal ulcers in SLE (lupus) patient from Hand-Hell blog
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.

(C)2019 Hand-Hell