Movement During Surgery Recovery and EDS: Chapter Two: Why We Did It/Skin Care/What to Wear with a Cast on Your Arm

"We" includes a team; the one with the condition or injury, the ones suffering because of the injury (affected and affected's family), the health care professionals: primary doctor, alternative medicine doctor, chiropractor, physical therapist, surgeon, physician's assistant, and all of the other doctors and orthopedic specialists I consulted in the past. It's really a little embarrassing to think about. 

As someone who has a condition making every joint hypermobile, but who lived almost my entire life not knowing it was the cause of most physical problems I've ever had, the realization is still dawning on me bit by bit. This too??? The intention is not to whine, but to increase awareness of what people with EDS or on the hypermobile spectrum might also be experiencing. I see you.

-Over-extending elbows and ability to do the splits.

-Constantly sprained ankles and back pain that left me "stuck" often. (Both of these are much improved, hormonal shifts? Better exercise routine? Less sugar?)

-Sciatica pain- can still happen.

-Ends of pregnancy where walking became almost impossible from hip and groin agony.

-Knee flare-ups.

-Arthritis developing in highly inconvenient places like feet and thumbs.

-And, the worst part of all, knowing that I might have passed along these genes to my children. Should I have listened to the voice calling me to the convent after all? Life is far to short for regrets, but honestly!

In light of this, the decision to go in, break open and hopefully take care of one of these body parts seems almost ludicrous. But here's the thing...age is creeping towards us all the time, and how we want to spend that period of our lives is a decision we all have to make. I want to type and knit. I want to garden and ice-skate and ski.

I want to drive around the Midwest to interpreting assignments or along the highways of the world out exploring, climbing mountains, and leaping into waves. I want to weight-train to avoid further degeneration of my bone density. 

                And a working hand is key to all of that. 

As far as the feet are concerned, I can always wear old-lady  "comfortable, sturdy shoes," but for hand and wrist even the best support gloves have proven to have their limits, and braces have made things worse. (We have a whole Bag of Braces for different body parts we keep handy, along with walking boots and bath bags for casted bits.) 

When even the occupational therapist voiced the opinion that maybe surgery was a good option for me, after injections and therapy and regular exercises had failed, I made the final pre-surgery appointment to review my options with the hand specialist. After my initial visit, I had been leery of her decision  to recommend fusion. But after the follow-up MRI, conducted to explore what seemed to be cysts along my wrist, her choice of treatment was modified to joint replacement (because the imaging revealed more damage from arthritis than had originally shown up on an x-ray) and a mini-tight wire reinforcement, due to the added potential the EDS adds for joint laxity becoming problematic for the joints further up the chain of command. For some weird reason, this reassured me. "Fusion" sounded permanent, stiff, and final. Replacement sounds sustainable, workable, with a higher rate of mobility down the line. AND SHE LISTENED TO MY CONCERNS ABOUT THE HYPERMOBILITY/EDS. This, dear doctors, will do more for your scores on Ratemydoctor.com than any treatment, no matter how successful. 

Now for the wardrobe...left to my own devices early yesterday morning, I dolefully grumbled to friends that I looked like a bag lady, and wondered if this was how it all started for some of their ranks? 

 

You go home alone with an arm in a cast and find; you can't do your hair, so you pop on a hat that half covers the disheveled tangle. There is no one to hook your bra so a second layer is a must, but none of your sweaters will go over your cast, so it's a poncho on top of whatever sleeveless shirt you can scrounge up, and your yoga pants are in the laundry. so a skirt with an elastic waist band is the only other thing that  is not pyjama bottoms in your closet. Show up at work often enough in this get-up and you're likely to lose confidence and your job along with it and then you're left with...those very same clothes on your back.*

Responses from two friends;

(Zero commiseration, you will note, the hallmark of someone who knows you too well and is not taking your grousing for one second.)

-Embrace your inner Stevie Nicks.

-I happen to love the babushka vibe.

-I'm with E. Your inner French woman needs to learn how to let it hang.

Thanks, folks. That's friendship for you. Always moving you forward...or something. I mean, did you see the sorrow in that face? Not a single whoop given.

And then I got up this morning and decided I will have to find a way to make the closet full of perfectly nice items I have work for the next few weeks. Work is going to be a challenge, but that was also true when I went from semi-hippy-homeschool-mama to work with no transition. I used to justify every slightly insane outfit with, "It could be a French style, they will just think I am French." 

Here was today's Sunday "fit", as the kids say. In which I embrace not only Bohemia but the Japanese girl with skirt and socks look I've always admired but never imitated. I still don't see walking into court in this one, but I've decided to be happy. And that extends to the length of time it will take to fully heal and get this hand working again. And it also includes messy kitchens and bathrooms and clients who arrive an hour late. I am happy.

* I must add a note of gratitude for this beautiful skirt brought back for me by a friend from India and the equally scrumptious warm poncho my sister gave me for Christmas, I love both, but I was in a mood.

 

Day 13 Progress and Movement Report:

Not much to report. I eased up on the amount of stretching I do, because the weight of the cast/splint (I guess I'll know tomorrow when it is removed) seemed to cause more pain and I was not sure it wouldn't pull too much on the joint in doing thirty minutes at a time.

We go for a walk every day and I putz around out in the garden in my flowers. I fetch my own things up and down the stairs and keep it raised much of the time. There is some discomfort, but it is not terrible.

My old nemesis, eczema has made a come-back, summoned no doubt partially from my belief that if I ever needed a cast for anything it would surely be a problem. My self-talk has been crazy positive, but alas, it has made my hand a crone's claw. Skin fragility is a big problem/main symptom of EDS.

Hey, speaking of crones, it is almost Halloween or Samhain. I wonder if I could pretend I got the date wrong and show up every day in skirt, shawl and pointy hat? I might start a trend among the legal profession. Actually, if I am in a splint for four more weeks beginning tomorrow, that will be day for day October 31. I would be seasonal. Or delusional. 

What have others come up with for both skin care for fragile skin in a splint or cast and outfits when you can neither pull up panty hose nor tug, zip and button pants? 

And for movement while healing; please send your favorite gentle activities and ways to move in any way while putting along until full speed becomes a reality once more. I know it will, but having patience is another story.

Please share in comments.

 

 

A Super-Bendy (Hypermobile/EDS) Recovers From Joint-Replacement Surgery; Chapter One

This is, in fact, Day Seven Post-op of having a joint replaced in the left wrist, or an arthoplasty CMC . ***If you cannot abide reading medical descriptions, skip to the next paragraph and cute dog pics. The trapezium bone was removed, replaced by a tendon graft and the bones hitched back together with a tiny tightwire. I always dreamed I'd do acrobatics and tightwire stunts. Fancy this being the first one.

I'll start here and in future chapters work back to when this hand first became a problem, but fresh things first. I am accompanied by a warm weight pressed up against my knees in the form of woman's most faithful friend (until the mailman shows up), Tuxy Pup. He desires nothing more of a morning than for his person to stay put for the duration of his morning nap.

 

We are back in a comfortable position, pillows in place under left elbow, ready to chronicle recovery as I live it. But earlier I did a very easy-going set of stretches. I am not going to get all stiff and old because of my left thumb. I am drinking as well, as much water as I can remember to drink each day. Recovery hinges on a balance of all three. Move. Rest. Hydrate.

Surgery Day, as you might imagine, was woozy, fuzzy, and tired until it wasn't. There was a good deal of meditation on gratitude and some silent cussing. My rambling notes, scrawled on a tablet with my Apple pencil went something like this, "Think of everything that is pain-free. Toes? check! left leg, right leg, torso, right arm, right hand, neck, eyes, nose, whole head? Check, check! I am so fortunate!" I even used pretty colors. And no cussing.

How could I complain when my husband had rearranged his day, his month around this to take care of every detail, meal, animal, and child? What's more, I was not going to whine about a choice I made freely. 

Nevertheless, the truth is, when the nurse tells you, "take a pain pill when you first start to notice pins and needles," it is a good idea to do just that. They know what they're talking about. I blame timing and a chronic low-pain tolerance for what happened. 

They said, "a nerve-block can last for up to 24 hours, if it hasn't worn off before you go to bed, take the meds to be safe." That was my plan. But, the pins and needles warning sign came two hours after surgery as I was being bundled into the backseat to head home. I thought it might just be the new positioning of my arm or imagination. I have a bright and vivid imagination that goes into overdrive for anything with the smallest hint of the catastrophic. When the pain began vaguely in the heavily-bandaged region of the joint that had been gussied up, I knew that this time it had to be my imagination. There was no way I could have any feeling at all in this arm when the nerve block was so clearly still at work. 

How did I know this? Remember when the fake wizard professor, Gilderoy Lockhart, casts a spell that eliminates all the bones in Harry Potter's arm? When it goes all gooey and limp right there on the Quidditch field? Yes, well, that was the exact appearance of my arm too. Like jelly, zero control over it, made you queasy to look at. The nerve was blocked. For real. Fingers could not wiggle. And...weirdest of all, I could not get a grasp on its coordinates. 

My arm was still in the position it had been in just before they jabbed me with the magical nerve block needle. This was the oddest encounter of the day, not the half-remembered conversation I had as I woke up still in the freezing cold operating room, nor the loopy happiness of seeing my darling still in my hospital room as though he'd never left, even though it had been almost two hours but felt like 3 minutes. No, what my brain could not wrap itself around was where it believed my arm to be and where my eyes said it was, stretched out and bandaged up, way off to the side.

But still it hurt in a dull, aching way. The wiggling capacity returned suddenly, and then it was too late. I accepted two ibuprofen. They did not seem very effective. One pain pill an hour later did not much help either, but I didn't know what other side effects the drugs might have...like vomiting. Who wants to vomit when clean up will be someone else's duty? I would have to breathe through it. Until around midnight when I gave in and chose to take TWO pills. Best solution ever.

Speaking of decisions, this whole thing was not undertaken lightly. I have been present for too many limb surgery recovery visits as an interpreter (nine years worth) to believe in the always happily-ever-after of opening up body parts and making it all like new. It does happen and surgeons can be miracle-workers, but it is science, not magic. In science there are variables. 

My major variable is hypermobility (or super-loose joints), a form of Ehlers-Danlos Syndrome which has meant many things, as those of you who are familiar with it, (fellow zebras) can recount in detail. A few years ago, I wrote that surgery was not an option. What changed?

That is a topic for the next post. Suffice it to say that the arthritis pain could no longer be dealt with to my satisfaction in an alternative manner.

Today I will focus on recovery.

Day One following surgery, ugh, the barf I had avoided and feared appeared. Pain and nausea...typical post-op misery I knew, how many times had I seen patients in similar straights? Was it due to tacos for lunch or the pain medication? Hard to tell. I ended the day with tea and rice crackers.

Day Two, I sleep until 9, which is noon in my normal world.

-I read, clean up left-over invoices and emails, read and sleep.

-I get dressed, professionally, and work for two hours plus over Zoom. I thought I was going to be ready for this. It was a long and emotionally taxing interview. Once finished, I am wiped. 

My thoughts on Day Three, still mainly resting sitting still but off the strong stuff, down to a couple NSAs twice a day:

-Marvel at what a gifted surgeon can do today so that a person will be able to move; lift, drive, type and knit tomorrow. And wince, just a teensy bit, from time to time.

-Contemplating the terms Arthroplasty CMC and mini T-rope fixation, which serve as a reminder NOT TO USE THE THUMB. The only admonition from the doctor.

-Fortunate indeed to be free to swivel my head from side to side, to feel I lack no flexibility of body or inferior limbs (did this hypermobile human really say that?)

-Even luckier to have scrumptious food brought to my side at any hour of the day or night. Thank you, sweetie doing all the cooking and cleaning and thank you to the friend who showed up with a whole beautiful meal.

Day Four, in which I wake up and get up and moving.

-Yesterday I moved, allowed to go up and down the stairs on my own finally. OK, the instinct to protect me from myself is not necessarily out of line, I am ever-so-slightly pone to running into things. I also went for a drive to see the river because I know it was missing me.

-Today though, the garden beckons in the fall air and sunshine, it is irresistible and being outside feels healing. I garden, or rather, I spend an hour picking disgusting bud-eating caterpillars off my geraniums, one-handed, being extra careful not to splash the cast as I drop their squirming forms into a blue ceramic bowl of soapy water. At least I grant them a somewhat noble end. 

-Rest, tea, snack then a stretch. As usual, when there is pain, I go to a pain-relief Essentrics slow video. It feels good to gently, gently stretch every body part, minus the thumbs. 

-This is the end of not resting for the day. It feels better to have my hand raised and cushioned. 

Day Five

-We take two walks, one with Tuxy Pup held in place by my sweetheart, one alone, just to make the most of yet another beautiful autumn day.

 -I feel much like normal; I even wake up before 7. The pain definitely is more apparent with exercise in which my wrist is free and blood can flow into it rather than away. Back up we go.

Day Six

-There is no one free to supervise a walk until evening and it feels like a betrayal to go out without dog, so I work all day, with no fatigue, then break at 5:30 for another Essentrics video, this one is called a connective tissue workout.  After the first two minutes of warm up exercises, it slows way way down for the rest of it. I adapt for this heavy thumb I'm toting around by doing the warm-ups in halftime and instead of reaching for a feather, it becomes a fluffy white kitten. For others who have EDS, you might want to remind yourself that "pull your shoulder right back, stretch it way out" may need be be modified to "gently, ever so gently extend whichever body part we're stretching today," lest the helpful exercise become less helpful.

-Remarkable for today: no pain medication until early evening, no fatigue, a little achiness and twinges, both of which have been present since surgery.

Day Seven, Eight, Nine...

The week is a holding pattern of waiting to heal and have the next visit with the doctor. The pain is completely manageable with rest and one small dose of an NSA each evening. I always wait until the end of the afternoon so that the pain, if any, can be a reminder to slow back down and let this heal properly. 

I have a couple of remote assignments, but mainly I study to learn how to teach more effectively. This has been an exciting week as I go back through two online classes on better consecutive interpreting and do all of the exercises myself there and in Note-taking for Consecutive Interpreting. This freedom of having time to study and plan has been a great gift. I was looking forward before to teaching a class on interpreting for a local college, but now I am super-psyched about what we will be able to accomplish in that classroom and beyond, in our community.

What we all want to know is...how does it turn out? Will I knit, type, drive and lift weights again? We shall discover it all together. 

More details also on the decision-making that went into this and the options offered and tried.

In the meantime, let me entertain you with strange tales of travel and encounters as a French interpreter, à tout de suite!