Knee Update (and a treatise on pain management failure)

Well, hasn't this been an absolute adventure? First off, my knee is doing really well, despite some recent setbacks (call me the Setback Queen!). It is amazing how the body heals itself. 

And now I tell you about societal failure in three stories. 

Last Friday 6/2

Okay, so I already told you about the whole rigamarole I had to go through to get the proper amount of oxycodone, and how self-advocacy got me what I needed. Well, for the holiday weekend at least. Tuesday after Memorial Day the rest of the partial prescription came in (because of course there was an oxy shortage, and of course they had to split the prescription for 40 pills into 21 on Friday and 19 on Tuesday). So I had 19 5mg pills. At the holiday weekend I was down to 30mg/day, and by Friday 6/2 I was down to 25mg, which is pretty darn good if I do say so myself. But it came with writhing and horrible pain as the day wore on, with afternoons, evenings, and the nighttime devolving into a full-body contracting mess as I waited for my 5-6 hours to pass. 

Friday 6/2 I had the home healthcare PT come at 9, and she was like, "you are KILLING it!" -- I could straighten more than last time, and my bend was already at 76 degrees. GO ME. I had walking exercises and stretching exercises, and I was feeling real good about myself. I did start a new program on that range of motion bike, which added in resistance, and that was hard but I did it anyway. I was a WARRIOR. 

She asked if I had enough medication for the weekend, and I said "oh, I have to call in a refill (read: new prescription, there's no such thing as oxy refills) because I'll run out Saturday." She said, "CALL IT IN RIGHT NOW. BEFORE NOON. Don't mess around with that, you're doing great but you don't want to get stuck without." 

So I did. I called the orthopedic office, talked to the secretary, and she referred me to their pharmacy refill mailbox, where I left the required detailed message. And then...I waited. By a bit before 1:00 I was weirded out I'd heard nothing, so I called the pharmacy and asked if a prescription had been called in for me. They said no. I asked if they could call, and they said, "MA'AM, we cannot call about your narcotic prescription for you. You have to do that. It is the law." Oh, okay, I get it. So I called again. 

And again. 

And again. 

Every single line was busy. Bryce called too, busy, busy, busy. Something was wrong. I called the nurse hotline for home healthcare and explained what was happening, and she was like, "oh no... there's nothing I can do for you. There should be a backup. It sounds like the phones are down, keep trying!" 


Finally, at 2:00, Bryce said, "THAT'S IT, WE'RE DRIVING THERE." So we loaded into the car and went to the medical campus. On the way, he suggested I call my primary care doctor. I was hesitant, because I didn't want to look like I was doctor-shopping. Even though I was just trying to get the medication I needed to be reasonably controlled after an insanely traumatic surgery. I called and talked with the secretary, and she said that she'd talk with the doctor and then have him call me. 

When we got to the office, there were electric company trucks everywhere. Bryce went in and there were two secretaries sitting in the dark. Yup, power outage. Phones and computer systems down, down, down. Bryce said, "My wife had a total knee replacement last week, and she's out of pain medication. What can you do?" Apparently their faces went gray and they were like, "Oh no. We can't do paper prescriptions anymore, it's illegal, so there's literally nothing we can do. Try your primary care doctor?"

I was in full blown anxiety work up at this point, and in pain, and it was hard to tell what was feeding what. 

On the way home, my primary care doctor called back. He was like, "you had a refill on Tuesday though. That's three days ago." I had to explain that the refill was actually the rest of a partial fill of ONE prescription. Then he said, "But you've had 65 pills in less than 2 weeks." I lost it. I started crying and wailed, "YES, because when you have a total knee replacement, they use POWER TOOLS on your leg, they use HAMMERS and SAWS and DRILLS and I left the hospital taking 50-60mg per day and I'm down to 25mg per day, which is AMAZING, and I am in SO MUCH PAIN, and I am taking so much less than most people at this stage! It hasn't even been TWO WEEKS! It's been TEN DAYS!" Bryce put his hand on my thigh and whispered "careful, don't make it sound like you're begging." DO YOU KNOW HOW FUCKED UP THAT IS? The doctor did not at ALL want to do it, but he did an "emergency" prescription of 15 pills, which would get me through to Monday or early Tuesday until my prescription came through. I doubt it, but I sincerely hope he got on YouTube and watched a video of a knee replacement for context. 

The rest of the way home I sobbed and sobbed. "WHY DO THEY THINK I'M TRYING TO GAME THE SYSTEM? THEY THINK I'M A SMACK FIEND! I'm on some sort of WATCH LIST now I bet! What the hell!" I was exhausted and full of pain and sadness and frustration. We got home and Bryce took my phone, said he'd answer any important phone calls, and was like GO TO SLEEP. That was a lot. 

Having to fight for basic pain maintenance has been awful. Also, what the hell? You don't want me on oxy? GIVE ME OTHER MEDS. I asked in the hospital about Gabapentin and Celebrex, and I actually HAD Celebrex in my rotation in the hospital, but they didn't send me home with any (non-narcotic, non-stomach irritating anti-inflammatory). And they said "everyone's pain medication is different" and sent me home with 25 measly pills. Literally, they cut my leg off and put it back together. They did CIVIL WAR SHIT to me. 

Over the weekend, I was a bit better but noticed more pain and more stiffness, which had Bryce nervous that maybe I was morphing into this mythical tweaker everyone was apparently worried I'd become. My range of motion shortened. I was in horrific pain at night. But I stayed at 25mg of oxy. 

Monday 6/5

Again at 9:00, my PT came to the house. She saw me and immediately said, "Oh honey, you have a big old hematoma! Oh no!" She did some massage manipulation and basically validated my pain levels. I had a massive amount of swelling around my knee, on the sides, and down my shin. Everything was super tender. I was at about a 7. and I'd had my morning oxy. 

She was all fired up when I told her about Friday. "This is RIDICULOUS. There is NO REASON you can't have Gabapentin and Celebrex. This is CRIMINAL. They don't want to give the oxy to you, a textbook case of WHY WE HAVE OPIODS because of the severity of your surgery, but they won't give you a cocktail where you can get off the oxy. SO STUPID. Also, honey, I think you might have a blood clot in your knee, so you need to see the doctor's office today. Yup, need to go today. We're not doing any exercises, just measurements and calling your office."

PTs rule the WORLD. 

So we went to the doctor's office (now open with lights on, and oh by the way my voicemail prescription was filled without question on Monday, so I guess if there's no outage the system works pretty smoothly, ugh), and saw the physician's assistant. I was in so much pain, easily a 9, and I couldn't sit, I just did laps with my walker around the halls because it hurt so much. Finally we were seen and he was like, "Oh, this looks okay, just real swollen, but you're only 10 days out. It's not hot, it's warm, so I don't think it's a blood clot." I advocated hard again and was like I WANT IT THOROUGHLY CHECKED and, by the way, can we get me a variety of pain management meds? 

OH HOLY JEEZUM. Just like that, I got all the meds sent to the pharmacy. 

But first, it just happened that my surgeon was in the office. He came and checked it out, made sure there was an x-ray so they could check on the structural integrity (all fine), and explained that the hematoma was just a giant pool of blood where it shouldn't be, but that if I drop down to one baby aspirin per day and take it easy for a couple days, then it should resolve. And of course I could get the Gabapentin and the Celebrex. He did do a test where I had to hang my leg over the edge of the table, and it hurt so bad and I panted like an animal and Bryce got upset and yelled "Don't you think that's ENOUGH! Can't you see she's in PAIN!" which was sweet. GOOD GOD MY REFERENCE POINTS ARE ALL SCREWED UP. 

Tuesday 6/6 (and on)

Oh. my. god. Having a cocktail of meds is a freaking GAME CHANGER. I cannot believe I was at the level of pain I was in for TWELVE FREAKING DAYS before it was under control. The Celebrex and Gabapentin have me down to 15-20mg oxy per day now, and while I'm super loopy and brain farty from the Gabapentin, it's so much better than writhing in pain and exhibiting baby reflexes and being just outright nasty by nighttime because it hurts so much. Good for me, good for Bryce. And it's good to keep Bryce happy because he is an amazing caretaker and I am just so fortunate that if I have to have power tools taken to my leg, he's here helping me move through it. 

I will be calling/writing a letter to the hospital about the failure in sending me home with the right meds, and how awful it is to treat someone who is in tremendous pain after an insanely traumatic surgery like a drug addict scheming for narcotics. I know there's a crisis, but this is WAY overcorrection. I should not have been in so much pain for so long. It was wholly unnecessary and it definitely set me back. Shame on our system. Literally, if you don't want me on all that oxy, give me the right balance of meds to manage the pain so I can do my PT like a rockstar and get myself back in business with my new knee. 

Thank you for coming to my TED Talk. 

A Community Call For Information

Hi friends! 

A friend of mine is experiencing a rare hurdle to fertility treatment after a devastating loss, and she is looking for solidarity. Here is her message:

Very important question, not looking for sympathy here, but instead hoping to find someone who might have a similar experience] I've recently been diagnosed with Autoimmune Progesterone Dermatitis, a rare hypersensitivity to my body's progesterone--this diagnosis came as a result of me having difficulty tolerating fertility treatment. While the doctors discuss how we move forward, I'm hoping to find someone who has experienced what I've been going through. If you know of someone and they are open to connecting, please let me know.

If you have experienced this, or know someone who has, can you comment below and I will send you her contact info? Thank you SO much. There is so much power in community and solidarity.


Pronatalism and Anesthesia

When I had my knee replacement surgery, less than two weeks ago (!), they did not use general anesthesia. They used a spinal and two nerve blocks, and then sedation. The anesthesiologist said, "we'll make you sleepy, like a colonoscopy." I thought of my botched colonoscopy "sedation," stared him in the eye, and said, "oh god no. Make me ASLEEP. I don't want to hear any of the power tools." Because... They use power tools. Much more Home Depot than surgical supply. Drills, saws, mallets, etc. No thank you. I want no part of that auditory feast.

I was way more afraid of the spinal than the nerve blocks, although the opposite proved to be true in reality. The nerve blocks were terrible. There was numbing applied to my skin, but all the threading inside was horrible. So I was an absolute wreck about the spinal. 

The pre-op nurse said, 'it's just like when you have a baby!" That was weird because not everyone gets or chooses spinal anesthesia, but also NOT EVERYONE HAS A DAMN BABY. I said, "oh, well I didn't have one, but if I could have I would have had an epidural!" Ha. Ha. Ha.

Then they came to get my pee, and I heard the tech say through the curtain, "we can't roll her in until we do the pregnancy test." So I yelled, "I can save you some time, I don't have a uterus, had a hysterectomy a few years ago!" Seriously, why isn't that marked on my chart? I feel like I need a name tag for when I go in for x-rays or medical things: HELLO MY NAME IS JESS AND I DON'T HAVE A UTERUS.

I was told one more time when they did the spinal, in the OR, under some loopy looperson medication, that it was just like when you have a baby. ARGH stop it... There are SO MANY PEOPLE who haven't given birth for a zillion reasons, why make it sound like it is the default experience? 

When I woke up after surgery, completely lucid because no general anesthesia, they had that paper screen up to shield me from the horrors of what they'd done to my leg. I am grateful for the lucidity because my strong impulse was to yell, "WHERE'S MY BABY?!?" and then cackle madly, because it looked like every depiction of a C-section EVER. 

Don't worry, I didn't do it. But it would have been hilarious and a little tiny retribution for the insane pronatalist assumptions thrown at me up through that point. 

Mothering Day

I was way too busy with Bryce's PhD graduation and my impending surgery and leave to worry much about Mother's Day. It barely hit my radar this year. Mostly, I experienced mild consternation over ads that insinuated that only moms would love and deserve pajamas. 

Like others, I was impressed by how many companies had opt outs for promotional emails for the holiday. Unfortunately I missed a bunch in my burgeoning Gmail "Promotions" folder, but when cleaning that out while laid up, I was newly, if belatedly, appreciative. 

But. The best thing that happened was a text I received from a friend and coworker, someone I don't know super well but have gotten to know more each year. She is a calming force, a well of empathy. I enjoy her company and we are hysterectomy sisters -- she got hers the year after mine and I made her a "goodbye to your uterus" care package, that had tissue paper that was purposely shades of pink and red. You know. Like a lining. Ha. 

Anyway, she sent me this and I had to share with you because it is just so lovely:

"I am not sure how you feel on Mother's Day Jess. But Happy Mother's Day to you!! ๐ŸŒธ๐ŸŒบ๐ŸŒท๐ŸŒป๐ŸŒน๐Ÿ’๐Ÿ’❤️

Not all "mothers" are biological, and some aren't even female. 

You have had an especially trying year with your kids. But you have been a wonderful second mother to all of those kids. I hope you celebrate today! ❤️❤️

And as I said, I do not know how you feel about this day, but I was thinking about you, and this day, and it is my hope all caregivers who play a central role in assisting with the growing up of children share in knowing that they are appreciated. ❤️❤️"

Ummm... Wow. For the record, she is a mother. And an amazing human. Well done, you. 

I would love to see Mother's Day become Mothering Day.  It could have the definition in her last paragraph. 

Mothering Day: a holiday made more inclusive by honoring and appreciating all caregivers who play a central role in assisting with the growing up of children

Wouldn't that be lovely?

Self Advocacy For The Win

I am home, with my shiny new knee inside a whole lot of swelling and bruising and pain. Surgery was 4:00 Wednesday, and I was discharged 11:45 Thursday. 

Fun fact: I thought the spinal was going to be the most unpleasant pre-op piece. It wasn't, it was the nerve blocks. Good gracious those sucked. But both allowed me to be totally numb below the waist, and to only have sedation to make me sleepy during the procedure, which I clarified MAKE ME ASLEEP PLEASE... I DO NOT WISH TO HEAR ANY POWER TOOLS. My wish was granted. 

And so, I woke up completely lucid with no pain at all. And it lasted forever. JUST KIDDING! It was amazing to actually be able to read after surgery and to gradually become loopy from pain meds as my nerves woke up. Which they did. With a vengeance. The nerve blocks lasted the longest, and when I left I still had "Rubber Foot" as I coined it. 

Imagine my surprise when as my nerves start lamenting what I've done to my body ON PURPOSE, I have to ask for more pain meds. I get put on 10 mg oxy every 3-4 hours, because it starts wearing off at 3 and then I become a purple, contracting, writhing mess. I go to PT and get my green light to go home. Still rubber foot. Progress when I can get my toes to uncurl and touch the floor. 

So when they tell me at discharge that I will be sent home with enough to take 5-10 mg every 8 hours, my jaw drops. They say I can't take my current dose (which is finally controlling the pain) at home because I'm not monitored.


This is what that looks like when I can't take more and my nerve block is gone gone gone:

Bryce wanted to call 911. I thought I was going to either pass out or rupture my incision. Luckily, I got ahold of a human, the on-call surgeon, and he said go ahead and take 2 pills/4 hours (10 mg). Between that doctor and the home healthcare coordinator and the pharmacy, I am good now. 

They always say "stay ahead of the pain" but that's hard to do when not given the proper tools. Ice and Tylenol will only do so much. I get the importance of preventing addiction, but that was BANANAS. And, incidentally, I am down to 30 mg/day from 60 mg, which not even a week in is pretty darn awesome, I think. I just want to manage the balance of pain and PT and movement and icing and stiffness.

I am glad I could advocate for myself so I can have the most effective recovery possible, without feeling like in 2023 the solution is "bite down on this stick."

My friend the walker with volunteer-made bag for essentials 

A happier picture of me post-first-shower. Clearly feeling alright here.

Farewell, Bad Knee

It has certainly been a busy busy time leading up to today. I have my total knee replacement surgery this afternoon (whyyyy afternoon whyyyy, so hungry and anxious!), and I had my last day of school for the year yesterday. I know that I could not get to everything I wanted to in order to wrap up, but I am working on the whole "let it go" piece and so I am going to trust that it will all be fine. 

The end of the year was lovely, I managed to get all my IEP meetings done and the paperwork sent off to the Special Ed office for filing. I got almost everyone to a point where they were just at the proofreading stage of their English essay. I tried to get all the things to my sub, who is very excited but also nervous. My kids were wonderful to me in the last week, but I'm pretty sure they were showing off the last two days when she came in, because everything was over-the-top and a show of "look how bad I can be!" Sigh. 

I got hugs and cards and requests to do a Google Meet (um, maybe once I'm off narcotics, haha?), and I'm hoping that I can do a drive by on the last day of school, which is the 8th grade Beach Party. Kids who really gave me a run for my money said, "Do you have to leave? I am really going to miss you." 

That saying really is true -- the kids who need the most love ask for it in the most unlovable ways. It was a really hard year (one student who has been a regulated rock all year said in her card, "It was a tough year, but you got through it!"), but memorable and I really do love all of my students. I did some reflecting and it's AMAZING how far so many of them have come. The cards from parents and grandparents all thanked me for being so caring and for loving their kids. To me, that is the ultimate in success. 

As far as the knee goes, I am nervous nervous nervous. I was so brave and even watched a video of the procedure (which was, um, questionable in terms of judgment), but then this past weekend I started freaking out hardcore. All the prep around the house (the first floor bedroom! the ice maker! the ice circulating machine! the stack of books I will probably be too loopy to read! the downloaded podcasts! the pillow forts to prop my knee up! the body pillow! the gardening! the laundry! the laundry! THE LAUNDRY!) has worked my knee hard. It is so, so very angry today. Which I think is good, because it reminds me how much I need this and how the pain will be worth it short-term to have amazing outcomes long-term. 

The surgery isn't until this afternoon, which is stinky because while I can drink water until noon, I am fueled only by the gluten free buckwheat berry waffles and blueberries I ate at 11:45 last night. More time to perseverate on all the things they're going to do to me? Oh, awesome. 

Fun fact: they don't do general anesthesia. What they do is give you a spinal and then sedate you so you're asleep (presumably so you can't hear all the power tools and horror show noises). All I can think is C-section, C-section, C-section... and how I have never ever had anything stuck in my spine. I sincerely hope they loop me up for that. Maybe if I say on repeat how my anxiety is through the roof? I hope the IV goes smoothly too. After the Great Colonoscopy Fiasco, I want to make sure they can pump me full of all the drugs and I am aware of absolutely nothing. 

It's weird to have surgery on something not abdominal/gynecological. It's been 30 years since I had the first knee surgery, and I don't really remember that all that much. I'm thinking in some ways it will be easier because breathing/coughing/crying shouldn't impact it so much. 

I remember the physical therapist who explained exactly how traumatic my knee surgery was forever ago saying, "This is going to impact you your whole entire life." He wasn't wrong! But now I can get a fancy new bionic knee. 3-D printed titanium! Cobalt alloy! I will be a cyborg. At least in part. 

I think the hardest part is that Bryce is so, so nervous. He has never had surgery and hates hospitals, and has had to watch me go through surgery after surgery. I'm staying overnight tonight, so I'm sure he won't be sleeping. He is trying to think of every possible thing to make it easier and healthier for me. He bought us radios to use in the house -- we practiced them last night and I felt so silly. I think at one point when he was checking if I could hear him from the first floor, I said, "Roger that, Blue Canary." I can only imagine what this is going to look like when I'm all looped out. 

So, anyway, goodbye evil knee. You did your best, but it's time for you to go. I appreciate your service, and look forward to new management. 

See you on the other side of this! 

Had to pretty up the deck while I could...

Herbs to the left of me, flowers to the right! 

Nicotiana to make the seating area smell sweet in the evening

Container full of lantana, will be so pretty!

What Did I Do To YOU, April?

April  conspired to really make me look forward to having major surgery in May. IEP session is here and I am eyeball deep in paperwork and meetings, which is normal for this time of year. But, in the spirit of a micro post, here is a list:

- Got COVID over spring break, missed Bryce's dissertation defense (silver lining, didn't give Bryce COVID). Bright spot: it went great!

- Not being able to work over break meant I fell wayyyy behind on IEPs

- Behavioral dysregulation at school got to an all time high

- I cracked a filling in my molars and it felt like a nerve was exposed. It was so painful, and of course on a Sunday.

- Got an emergency dental appointment last Monday, an x-ray showed that yep, a molar filling chipped, but instead of an exposed nerve, the pain was because A SHARD OF THAT TOOTH STABBED ME BETWEEN MY TEETH DEEP INTO THE GUM. Are you kidding me? Luckily they didn't have to cut my gum to get it out, but I did have to get TWO crowns today to fix the cracked, horrid filling-filled molars that had been "shaved" to make space for the shard to be removed. EW. Gross AND expensive AND painful. Also, clearly I grind my teeth, and I have a night guard, but apparently my alignment is off and I have a "cross-bite," which renders my guard ineffective. Invisalign here I come...

- This one is hard and getting its own post when I can breathe. I saw my former student this past weekend, and hired her to help me clean and organize my classroom because she needs money. It's a bad situation. We went to get toiletries, and I got her a two pack of pregnancy  tests. My worst fear was realized when she tested in the Target bathroom and we watched the second line appear together. She's 16. As you can imagine, this was a multilayered moment of grief. Insanely hard. I am working to connect her with agencies and organizations that will help her, but it's just so sad. I am so, so sad for how much harder her future is now, and how vicious the cycle of poverty and trauma is. 

- Bright spot: by best friend was able to come visit super duper whirlwindy, about 18 hours, but it was fun and lovely. 

Good gracious, May. Try to be kinder. 

I tried but still not super micro... Want to read more Microblog Mondays? Go here and enjoy!