May 5th - July 27th, 2025
Monday May 5th - Sunday July 27th (high level due to all that has happened!)
General Updates and Happenings
TWO HUGE UPDATES
Lawsuit closure: We are finalizing settlement negotiations for the civil suit and expect to be all done next week! It does not feel real and is hard to imagine what life will be like next. We came to an agreement very late in the evening on my dad’s death anniversary (July 20th) which was such a yummy way to reshape the heaviness of the day and feel his immense love and presence. Documents are in process as we speak.
I am having hip preservation surgeries on both hips, the right on August 4th and 11th, and the left on December 8th and 15th. It is going to be another long haul recovery! More details below under Medical.
What wild things to be happening at the same time… I am definitely still processing it all and I know it will take some time.
I’ve had a wonderful spring and start to the summer, with some travel in May to Vegas and Denver, and June-July spent in Taos.
Vegas with my girlfriend for a ladies weekend and to see Dead and Co at the Sphere. So much fun and amazing to get the time away with her. Neither of us are Vegas girlies so we didn’t do any big clubs, gambling, or casino time - just great food, hangin at the pool, getting our nails done, and going to the show
Denver to help my mom after her upper cervical surgery and to further own care (hip preservation specialists, eye specialist). It felt amazing to be able to take care of my mom, especially after all of her ongoing support in my recovery. I was very touched by what a wonderful, supportive community my mom has - so many people in our family, friend, and neighbor community continue to truly show up in support of her.
I received big news that I need four hip surgeries (more below under medical), so my end of may thru July has been intense with processing the heavy information and what it means for our lives, coordinating with surgeons offices and insurance, preparing as best I can physicially/mentally/emotionally, and trying to enjoy a bit of summer!
I’ve had great outings with friends, lots of indoor and outdoor volleyball, river and lake time, yard and house work. Its been nonstop!
We’ve had friends visit and stay with us
I celebrated friend’s birthdays and.went to a bachelorette party
I’ve enjoyed seeing music and dancing! Charlie Crockett concert on 7/5 was a great time.
Financial Status: I am currently taking money every month from my retirement accounts, which is extremely helpful and also difficult knowing I will deplete them all by November. Let’s hope for closure soon with the lawsuit!
Disability benefits: Appeal in progress but no updates yet.
HSD Benefits: 2025 food stamps have been approved to continue; what a huge help! We just had to submit our reapplication, so things may change with changes put in place by the current administration. I had to prove that I have applied for disability.
Medical Updates (Photos here)
Mouth
5/14 finished teeth: I got my finished veneers/bridges/splints and am so happy! They look and feel great. I am still getting used to them, its all so new… sometimes my teeth grind when I’m eating, making a nails on a chalkboard sound, or I bite my upper lip really hard. So, that triggers me a bit, but overall this is such huge improvement and I can’t believe this chapter is closing.
6/11 Orthodontist: she was so happy with how my teeth turned out and encouraged me to get a night guard but otherwise I’m free! I set up an appointment with the Dentist on 7/2 to get a scan for a night guard.
Insurance coverage for dental work: finally got approved through insurance which is a huge win. It is always surprising to see my own bill from a provider and the what insurance negotiates… often less than half the cost. I’m happy it is taken care of!
Eyes
5/30 Specialist Eye Dr: This Dr specializes in dry eyes, Sjogren’s syndrome, and neuropathic pain. I was so looking forward to seeing him to discuss my Sjogren’s related dry eyes that have been exacerbated by my facial scarring as well as what I thought was light/reflection sensitivity. He explained that what I really am experiencing is glare sensitivity, as light/reflection sensitivity indicates you feel pain, which I do not. What a helpful clarification that hadn’t previously been explained! He also clarified that because I never had a lip biopsy to diagnose my Sjogren’s, it is clinical Sjogren’s meaning I have symptoms but never confirmed with testing. Another helpful clarification! He overall was so great I am really happy to be in his care.
He explained that glare can be caused by dry eyes or large pupils and suspected mine is a combo of both but more related to my pupils dilating more than they should (this is likely a PTSD symptom that came on after eyelid surgery in Oct 2023). He prescribed me a new drop to constrict pupils and treat glare, with a better option expected in October or November. He also prescribed an eye drop to treat dry eyes, suggesting I use it twice daily for six weeks as well as drops that help my eyes produce more tears to use as needed.
Next steps: try new drops and follow-up appointment 8/7.
Vision: no changes, I am still not comfortable driving at night and often have difficulties with sunlight and indoor lighting reflections. I haven’t experimented very much with the new glare sensitivity drops as there’s just been too much going on to find a good time. I plan to when there is an opportune time, likely when recovering from surgeries and having less appointments.
Dryness has gotten slightly better with the new drops and I expect to see more improvement over the next few weeks. Yay!
Orthopedic
Hips
I’m having increasing pain and instability in both hips and it is getting harder to push through the pain and do my regular workouts to continue strengthening my body, as well as my desire to do more long walks and play volleyball several times a week. Lately, I am in pain most of the time even at rest, and activity creates a big spike in my pain levels and then it is harder to get it to calm down. It is also no longer just the right hip, but both hips that are causing a lot of pain.
Lots of appointments:
5/9 L hip MRI in Santa Fe confirming I have a torn labrum
5/20 initial appt w 2nd/Denver Hip Preservation Specialist: he needed more information and ordered a pelvic CT scan to further assess my hip joints, femur rotations, and make a game plan. I left this appointment worried that he was going to need to rebreak my right femur in order to stabilize the joint.
5/21 Boulder Hip Preservation Specialist f/u and 5/27 Denver
Diagnosis/discussion:
I have two underlying conditions that affect the stability of my hips including
dysplasia (the femur head is not covered sufficiently by the hip joint)
hypermobility (on the spectrum of Ehlers-Danlos)
As a result of the semi-collision
my femurs were broken and when repaired with rods, a slight rotation of the femur occurred; R hip femur is anteverted, L hip femur is retroverted
bilateral torn labrum (this is like a cartilage suction cup that holds the femur head in the socket)
The femur rotations, dysplasia, and hypermobility are exacerbating the torn labrums, further degenerating my hips over time, which further impacts the hip’s stability.
Recommended treatment:
Both hips need surgery to include 1) arthroscopic labral repair and femoroplasty, and one week later, 2) a periacetabular osteotomy (PAO) procedure.
The healing time would be 6-8 weeks of a gradual return to weight bearing, a strict PT protocol for 6+ months, and about 9-12 months to impact activities like jumping. Yikes! And that’s just for one hip.
More info on these surgeries can be found here.
I am so very happy that they are not recommending rebreaking my femur and can work with the femur rotations when they fix my hip joints.
Goals
Prolong the life of my current hips, pushing out the need for total hip replacement at an older (more “normal”) age
Allow me to engage in any activities I am able to, without pain or instability
Possibly reduce pain in my knees (we shall see!)
Next steps:
August 4th and 11th: right hip surgeries
December 8th and 15th: left hip surgeries
Ankles
L ankle: unstable but prolotherapy has helped, still having a lot of nerve problems and it is causing tightness at the bottom of my foot which is translating to back pain. This continues to evolve and I sure wish it was improving, but it does not seem to be… I’ve been working on strengthening my ankle and wearing a brace when I play volleyball.
I unfortunately wasn’t wearing it 7/21 playing at the park and sprained my ankle pretty badly, I’m super bummed. No more volleyball for me before hip surgeries, darnit.
When I’m not playing volleyball, it helps my entire body feel better when I remember to wear shoes all the time with good arch support. There aren’t sandals that my chiropractor approves of for this type of support, which is hard for me as we get into warmer weather. I love being barefoot!
Left Arm/Hand: I continue to have pain and stiffness in my hand and fingers but my arm is pain free :)
Neck/Back/Shoulders: I’m still working on getting my shoulders to behave properly, I think a lot of it comes from grief and subconsciously protecting my heart. The function of my ribcage continues to be problematic, as it relates to my spine and pelvis - I suffer from back pain on a daily basis and neck pain nearly that regularly too.
Knees are still hurting regularly without much change. All of the bodywork I do with providers and at home helps manage the pain levels. They haven’t gotten worse but also haven’t gotten better. I’m coming to terms with the fact that I’ll likely have knee pain for the rest of my life.
PT: continuing to do 2x/week appointments pre-hip surgeries so I can be as strong as possible going into it.
General
Bodywork: I continue to have immense gratitude for all of my bodywork providers who keep me feeling as best I can. My regular appointments of full body myofascial chiropractic care, nervous system regulation, postural support, structural integration, feldenkrais, and massage are immensely helpful and still needed weekly. I leave most appointments with something new to be mindful of or try, and with so much going on all the time, it is often hard to fully settle in and integrate what I’m learning and working on. It is easy to get overwhelmed and feel like I’m not doing enough - but I am doing my best!
My sleep continues to be pretty disturbed but thc, cbd, cbn along with L-theanine/melatonin/magnesium gummies continue to help significantly. I have a much easier time falling asleep and while I still wake up several times a night, I am able to fall back asleep much quicker than before. The only downside of using THC on a daily basis is the dry mouth effect that really ramps up my Sjogrens! And somehow, I’m still so tired all the time and can easily nap for 2 hours/day if I have the space!
Mental health:
I remain easily triggered into sympathetic mode (fight or flight), especially with all the recent stress of more surgery, lawsuit negotiations. etc. At times, I have the feeling that I cannot escape my body and ongoing pain/dysfunction, there’s always something to be aware of, or afraid of, or create more mindful movement, and it is exhausting, it invades my every thought, I feel claustrophobic. I have many practices to help with these feelings and thoughts, and I continue working on them…
My ketamine group therapy has been amazing; I had my last session on 7/18 and unsure if the group will be continuing in August. We’re looking for a new provider.
I’m also continuing my behavioral health therapy every week or so where we focus on somatics and releasing trauma from the body. She’s truly wonderful.
My digestive system continues to be super wonky and hard to regulate! I’m using all the tools I know well to try and stay regular, but it is a challenge! I know it is only going to get harder the next several months with surgeries and pain meds. I’m prepared for it!
On the Horizon
Weekly appts in Taos: bodywork, pain management, myofascial chiropractic, PT, behavioral health
7/31: Drive to Denver
8/4: Arthroscopic Procedure on R Hip
8/6: Specialist Eye Dr Appt
8/11: PAO Surgery R Hip
8/16: Drive Home to Taos
8/18: Start PT!
