April 7th - 12th, 2024
Sunday April 7th - Friday April 12th
Medical Updates
Eyes - surgery healing update (progress photos here):
Pain has gotten gradually better over time, though I am still experiencing times of more pain than I’d like (aching eye socket, ear where they took the skin graft from, sometimes whole right side of my head) - that’s a funny thing to say, who wants to have pain. But, all in all I am healing well and on the up and up.
The stitch in my lower lid that was taped to my forehead was loose when I peeked under my bandage on Saturday the 6th; it was essentially draped over my eyeball, no wonder I was feeling a lot of pain/discomfort with keeping my eyes open! With Patrick’s help, I adjusted the stitch to be pulled more tightly (like it was last time), and re-taped it. The stitch continued to come loose overnight and throughout the day, so the re-taping had to happen multiple times a day until my follow-up 4/10. Frustrating. I could have tried to reach the surgeon and ask for advice, but with my previous experience having difficulty getting ahold of him, sometimes not hearing back for up to 3 weeks, and in the interim talking to individuals whom I felt minimized by, I decided to just go with my gut.
I was surprised that I didn’t get a 24-hour follow-up call from the surgery center as I had with my previous surgeries. In fact, no one called to check on how I was doing until the evening of 4/9 (4 days post-surgery), the day before I had to go back to ABQ for my follow-up appointment… sigh. UNM is a frustrating and not-well resourced system to say the least.
4/10 Surgeon Follow-up: My surgeon was surprised to see I still had the lower eyelid to forehead stitch in; I told him he set a challenge to “leave it in as long as possible” so here I was. He laughed. He is happy with how it is healing, took the stitch out, said the key now is for me to massage the lower eyelid up and towards the nose multiple times a day, I’m ok to use scar gel as soon as the stitches are out and all scabs fall off, and we will just “keep making progress”. This last statement felt like the most transparent he has been so far, which felt good - and also hard on the heart to once again recognize that this will not be the end of it. I have a follow-up appt in 3 months.
And I was surprised to hear that I’m ok to resume activity as tolerated already! I’ll take it slowly but this is great news.
TMI but I have struggled with constipation since this surgery, it hasn’t been this bad since I was in the hospital a year and a half ago. My system is finally trending back towards normal now.
Mouth
4/10 Orthodontist: My bite is the best it has been! We were both very happy and surprised, and she wondered if somehow the eyelid surgery released scar tissue that allowed my teeth to match up better. Hard to know the reason but we are happy. I’m still not “out of the woods” as we have more improvement to make with alignment, bite, and there are still several teeth at risk of needing to be removed and hopefully enough bone for implants (at least one where I lost a tooth in the accident). We adjusted the top-to-bottom rubberbands so I now only have to wear one at night going diagonally across my front teeth, and none during the day. Yay
I was shocked at the amazing progress my bite has made and especially that it is something I didn’t even notice. Another lesson in how many layers there are to everything - how I eat and feel that my mouth works in general is not just about my teeth and bite. There’s swallowing, chewing, breathing (all three of which I am working on with my dentist and new exercises), salivating (to be assessed soon by a rheumatologist), and sensation/feeling which I realize I am missing due to the numbness I continue to experience. There’s no telling if my numbness will improve and after 1.5 years, I am not optimistic and also not letting go of all hope.
General
4/9 Orthopedic Dr: I was scheduled to come in for additional evaluation of both knees and my right hip, per my long conversation last week with his staff member about how to get MRIs approved. I go in, and am asked what body part we are going to talk about because they can’t do more than one per appointment - are you f-ing kidding me?! I was kind and explained why I was there for all three and she said she would go figure out what was going on - she was not very nice. Then, I heard her in the hallway mocking me for wanting to get three areas x-rayed and evaluated that day. Not cool. Finally, she came back in the room and said we can do both knees but not the hip… ok. I get x-rays, and while I’m in there I can’t stop thinking about how inefficient it is to not simply do all of them at once and instead ask me to come back if I really need/want my hip evaluated. Urg. But it is what it is.
Results: The appointment turned positive when I finally got to see the Orthopedic Dr, who I like very much. He said the x-rays showed arthritis in the left which is understandable given, as my Dr put it, “that knee went through hell.” This left knee also has a screw that is sticking out a couple of millimeters and may or may not be contributing to pain, both IT bands could use extra support and show signs of inflammation/bursitis at the Pen Anserine region. We modified my PT referral to work on the IT bands and bursitis and also did Cortisone injections in both knees (ow!).
We did not discuss MRIs as a next step or what to do about my hip… and I was a bit out of it from 1) still healing from surgery and this being my first outing, 2) feeling frustrated and disrespected by his office staff, and 3) the pain of the injections. I will call and follow up about next steps including a follow-up appointment, and also check in with my chiropractor and PT for advice.
He said to expect reduced knee pain after a few days, and here I am on Friday (3 days post injections) still withstanding a lot of knee pain… I was gearing up to do my floor PT routine which includes squats, lunges, deadlifts, bridges, etc. and then started to have a lot of pain around my eye socket, ear, and general whole right side of my face and skull, so decided to wait and see if it resolves before trying to push through and do a workout. I was eager to test out the ole knees and to get back into working out (I was sick for the weeks leading up to surgery, now healing, then traveling, blah, it is easy to get in my head about not feeling like I am doing enough or that I will lose my gains, momentum, etc etc) - then I remind myself I haven’t even been out of surgery for a full week and to be patient and kind and love whatever is now.
4/12 Chiropractor/Myofascial Pain Expert: once again my body is showing a trauma response post-surgery in that several areas are exhibiting more tension, restriction, and dysfunction. This is not a surprise and still, is frustrating. My hip was also out of alignment again and it makes me wonder what to do about next steps with the Orthopedic Dr… probably worth an eval and additional records with the ultimate goal of an MRI to assess a possible labrum tear. We also discussed that the cortisone injections will hopefully help with my knee pain but given the pain shifts and is in different areas on different days, it is likely multifaceted and treating the bursitis is not the end all be all.
I made a comment about wanting to tell my body she is safe and we are ok, we don’t need to tighten up in effort to protect ourselves. We discussed the idea of sending love and a feeling of safety to every cell in my body and what that would look like - lovely imagery. I want to create a vision board of what this means to me.
General Updates and Happenings
I received the photos from my 4/4 scar and portrait photoshoot, they are beautifully done! Since going through them, and even creating some side-by-sides with the portraits we tried to replicate, I have felt a whole host of emotions as well as a lot of numbness. I do know that I am triggered and believe I need a big release of emotion, I am waiting for it to come and giving space for whatever needs to happen. I also know that sometimes being stoic and numb help me continue on. No judgment for any of it, just allowing.
Patrick and I love going to see live music and have several concerts on the horizon which I am very excited for and glad we are creating space where possible to get in something that brings us joy.
We might take our camper van to the river this weekend, it is going to be in the 70s - yay for spring and warmer weather. Love this time of year, minus the wind. Hopefully I am feeling up for it, today has been a heavy pain and raw emotional day so we will see.
With this recent surgery, I once again felt like I sort of knew what to expect, what the recovery would be like, as I had done something similar not too long ago. It is not at all the same. Another lesson, as my brother and I discussed, in the fact that you can never walk in the same stream twice. In ways, I am more prepared for additional surgeries as I have had so many over the last year and a half - and in ways, I am never ready, it is still scary and traumatic. The more I experience, though, the more I do know that I can handle whatever comes my way - and I am always getting stronger.
On the Horizon
Continue 3-5 weekly appointments in Taos
4/16-18 Denver to see Jungle at Red Rocks!
4/23: OT/certified hand specialist and PT
4/24: Pain Injection Specialist
4/27: Khruangbin in ABQ
5/3: Rheumatology Evaluation in Santa Fe
5/8: ABQ Orthodontist
5/11: Pain Injection Specialist
5/15-16: Settlement Mediation in Denver
