Status: Recovering
This post-surgical recovery has been a night and day difference from the near-identical surgery on the other side.
I was so scared of this dominant side’s surgery, which you know if you read my previous post on it. Yet, it’s currently 11 days post-op when I’m starting this, and I’m sitting at Caffe Ladro in Capitol Hill with my oldest doing online school beside me. In pants (and a pull-on comfort bra!) that I got on myself, and the only thing I needed help with were my sneakers.
I can’t believe this.
After the right arm and hand (non-dominant) surgery, I was pants-less for almost a full month because I couldn’t pull them up by myself for the first 3 weeks. Then, only with significant pain for almost 2 months after. Meanwhile, on the 10th day post-op, I had my temporary cast removed, and the thumb splint fitted by the wonderful Hand Therapy Northwest in Redmond, Washington. (Thanks, Ryan!)
I thought it would be close to 2 months again before I’d be out of the house, but here we are—the day after my splint-fitting and follow-up with the incredible Dr. Ericson of Ericson Hand Center.
Seriously, people go to him from around the U.S. because he’s a leader in hand, forearm, and nerve knowledge and procedures. He’s rescued so many people’s botched surgeries, and improved thousands of folks’ quality of life.
He’s one of the few surgeons that can handle Ehlers-Danlos
patients, too. We tend to have super-delicate skin and blood vessels (vascular EDS, in particular), bruise easily, have joint problems, (etc., etc.) and tend to have extremely complex medical issues and needs. With previous surgeons, I looked and felt like I got hit by a truck post-op—bruised, sore, battered-looking. But with this surgery, I only have some slight bruising around my thumb (had to be internally reattached—another lovely EDS issue) and wrist (carpal tunnel surgery, median and radial nerve neurolysis, etc.). The other side had zero bruising post-op—I doubted that was possible.With only 6 tiny incisions in my hand and forearm, Dr. Ericson completed 8 different procedures, and left me feeling better than ever!
I was supposed to get 6 to 9 months of physical therapy for my shoulders, plus Botox injections in my shoulders every six months for the rest of my life due to injuries through work and sports, and from body building with EDS (I didn’t know back then…). I put off physical therapy and injections simply because it was “too much” for me to deal with at the time—I wanted to make sure I was fully healed from these surgeries before agitating those regions all over again.
I hate to admit that I didn’t even realize how dire my nerve, hand, and forearm situation was before having EMG nerve testing
done. According to the doctor who did it, it was the worst nerve damage he’d seen in his career… It was so bad that the nerve testing seemingly triggered the inability to fully use my right hand at the time. Although not guaranteed with the procedures I had, Dr. Ericson’s work freed me from those therapies as the bulk of my shoulder issues were because my body was overcompensating for the damage in my hands and forearms.Needless to say, I’m happy as can be right now!
Not only is this recovery “easy” in comparison to the last, I was so prepared for a deep depression with being unable to rely on my very dominant-at-the-time hand, yet I’m happier than I was before. Additionally, I now have time. I pre-wrote 8 posts for you, but now I can branch into doing more (and better edit those posts, too) since I have some cushion.
In turn, I learned that I can prioritize and handle a larger workload than I initially thought.
If I can continue this type of workflow, I’ll have time to work on other projects and write for other publications—what I’ve been working toward for years, it feels like.
(Go figure: During my recovery time, I’m finally feeling free enough to work the way I’ve always wanted to.)
Okay, now 16 days post-op, I discovered a few limits I stupidly didn’t expect. I’m tired.
The day I wrote the first section, my oldest and I went to my favorite lunch-spot restaurant, Nue in Capitol Hill, Seattle after the work session at the coffee shop. By the time we finished lunch, exhaustion infused every part of me.
Normally we bus back home, or when I’m by myself, I just walk. But I ended up needing to take a Lyft for the mile-and-a-half trip, I was that worn out.
I had all these plans to continue working after we got home. But even after writing that section, my post-op wrist grew sore quickly (skip this bracketed text if you’re easily squeamish, but the nerves in the backs of my hands had to be scraped back due to how EDS affects my wrists. Of course, they’re easily inflamed and irritated after all that….)
I took breaks, but my body was done for the day.
After we got home, I set up at my desk and texted some friends while listening to Dr. Dray on YouTube’s old Vlog videos (she seemingly always has at least one solid gold nugget to take from each of her videos). Barely able to keep my eyes open, I unlocked my office chair’s upright position, had my “surgical pillow” on my lap, rocked the chair back and closed my eyes.
Just because I’m doing and feeling better than ever post-op doesn’t mean my body can handle life as I knew it yet. I still need lots of rest.
I understand it now.
Even my mental health has made its need for rest apparent.
As I made my bed yesterday morning, the bright spring sunlight through the shades triggered a memory of when our family evacuated our home in Florida during Hurricane Irma. We caravanned to a rural part of Tennessee with friends whose other friends allowed us all to stay in their second home—four adults and seven kids in a one-bedroom, one-bath, maybe 700-square-foot house on a half-acre lot. Later in the morning on the day we arrived, I was out reorganizing our belongings in the minivan. The sun beat down, but I could handle it, unlike in Florida. I was sweating, but I could breathe (this was before my MCAS got as bad as it is), and my skin didn’t look like I lit fire to it.
I returned to the house, excited and confused. But before we got too excited, our friends sat us down while the kids played in the backyard. They said we had to leave the house (the people who owned it didn’t want our dog there), but they knew of a campground with cabins that we could rent, and treat the evacuation like a vacation “for the sake of the kids.” The only problem was, we’d need to board our dog, Roxy. They presented me with an outdoor boarding facility not far from the cabins. As I flipped through photos of the dog-prison looking facility, my eyes welled and I had a full-on breakdown.
I remember feeling so ashamed and embarrassed that I couldn’t keep it together. But, go figure, the final crack in my façade was empathizing with our already freaked-out dog. She’d already been through so much, I couldn’t put her through boarding after driving 13 hours through the day and night and early morning—her whimpering and panting and having to stop frequently for her nervous stomach the whole time. Of course, I didn’t know I was autistic then. But I can’t imagine even a non-neurodivergent pet owner being able to handle all those balls being thrown at them. Then willingly lock away your beloved pet-family member in a prison-looking facility after you’d just left your home and life as you knew it behind.
This memory came flooding back while I made the bed, and I broke. Of course, Roxy passed away last year, and I’m sure that didn’t help my emotional response. But my entire body and mind are still recovering. Just because I’m physically handling this surgery better than the last (and any other before that), doesn’t mean all of my systems are on the same page. Nor can they all handle me trying to prematurely resume life as I knew it.
Going under anesthesia for several hours is a lot on the body.
Then, it’s cut into and manipulated, put back together and stitched up. Just because I’m not fully aware of how each system was affected, it’s not hard to imagine how traumatizing that is to the muscles, ligaments, blood vessels, tissues, and even to the heart, lungs, brain, and more.So, I’ve noted the plans I want to incorporate… when I’m through the thick of healing. Moving forward, I’ll balance what I want to do with what I need to do.
It’s not as simple as saying, I’ll work two hours each day right now. There’s more nuance to it. So, my approach will be to listen to my body.
Leaving the house right now is a big activity. Based on experience, one activity in addition to just leaving the house is what I can handle. If we go to lunch, we go to lunch. No coffee shop for a few hours, then lunch.
As far as I know, there’s no lesson or class in primary school that teaches kids how to listen to their bodies. (Although I think that would be useful, especially for Special Education students.) However, since learning I’m autistic, it’s been a mission of mine to figure that out. I’m not built with the ability to “be one with my body." Each system feels like its own entity, and my conscious mind is a project manager, trying to get each one to work with each other. It's an active effort, not a passive function. As far as I know, people without alexithymia
do this unconsciously (for the most part). I’ve never been able to. But especially with my health conditions, learning these internal communications is vital to my overall health and wellbeing. So, it’s been a priority for me. And although I was doing great before surgery, I have to make a conscious effort to remedy this temporary situation so that I can go back to the way things were after.Only better this time. Because this time, I know to incorporate rest in more than just times of recovery. This time, I know to be patient with myself. I’m never one to rest on my laurels—I always try, even at the expense of myself in some way.
I can be as good to me as I try to be to others.
Thanks for reading.
My best,
Sara
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Ehlers-Danlos Syndrome - Symptoms and Causes, Mayo Clinic
Electromyography (EMG), Mayo Clinic
Effects of Anesthesia - Brain and Body, American Society of Anesthesiologists
Alexithymia: Causes, Symptoms, and Treatments, Healthline