July 17th - August 29th, 2024
Wednesday July 17th - Thursday August 29th
Medical Updates
Mouth
8/9 Orthodontist: another good appointment with big adjustments to the top and bottom wires and back on the top-to-bottom rubber bands - with 3 in the day and 5 at night. I’ve been pretty sore!
She also had a conversation with my oral surgeon and shared some updates: They suspect one of my upper right teeth is ankylosed (rooted into the bone) and will likely need to get a bridge eventually as I won’t be able to have implants there; the teeth next to my front teeth will both need bonding or veneers as they are small; and my front two teeth may not move due to the extensive trauma to that area but we are going to try with this adjustment and I need to keep an eye on it in case they start looking sad or become painful. We really have to keep a close eye on all of my teeth because the continued numbness I have in my face and mouth makes it hard to tell if a tooth is dying or becoming infected.
Chewing is still more difficult than I’d hoped by now. I can eat most things but still have to go slow. My lips often get in the way and I frequently accidentally chew on my lips and cheeks, and I feel I am not getting enough saliva or moisture in my mouth. Some things, like corn tortillas for example, are still hard to bite all the way through; I continue wanting to cut up my food more than I used to.
Eyes
The skin graft is healing well, though the hairs continue to get longer and darker. Hehe, yikes. I am seeing a dermatologist on 9/4 and will ask about the cost of electrolysis. For now, I am plucking. There’s also a very noticeable scar where the graft was placed, not surprisingly, but I will see what the dermatologist has to say about possible pigmentation to help even out the coloring in all of my facial scars.
Vision: no changes, I am still not comfortable driving at night. I have a neurologist evaluation set for 10/29 so we shall see if he has any input or suggestions.
Dryness also continues to be an issue and I continue to use drops many times a day and gel at night to keep my eyes moist.
Orthopedic
MRIs were finally approved and happened all together on 8/1. It is kind of ridiculous and also expected, given my experience thus far with healthcare, how difficult it was to get this to happen and how many times I was told it wouldn’t be possible to get them all done together. Yeeesh. After getting them approved and scheduled, I spoke with my orthopedic surgeon’s office about scheduling the follow-up appointment. I asked if I would need to schedule a different appointment for each body part (again, based on my experience with healthcare thus far), she said probably, so I asked to do that and she would only schedule one and the dr would decide which area to focus on first before we could schedule appointments for the other body parts. Ok… once again we just keep moving forward, and I will do my best to advocate with my surgeon to discuss all three in one appointment. I have my follow-up set for 9/23.
I also want to ask the orthopedic dr about my left ankle as it is has been more unstable since playing volleyball and gardening more this summer; I am curious about whether getting the plate out might help and I know if I had it out I would at least be able to try prolotherapy.
Knees
MRI results showed that both knees have fibrosis of the hoffa’s fat pad and no other visible issues. The x-rays did show arthritis in the left knee.
I continue to be frustrated with daily pain in both knees but manage okay…
R Hip
MRI results showed a partial labrum tear and a suspected slight tear of the gluteus maximus. I’ll see the surgeon on 9/23 to discuss next steps for this and continue working with other providers on the pain and dysfunction until then.
My hip gets out of alignment several times a week, and I experience regular pain and weakness in the area. It’s very helpful that Patrick learned a re-alignment maneuver from my provider. She is worried that having this issue so regularly will further degenerate my hip and is eager to hear what the surgeon thinks of the next steps. She thinks surgery to repair the labrum might be worth it to prevent me needing a full hip replacement in the near future.
L arm and Hand
7/30 I had my final OT/Certified Hand Therapist appointment. We went over at home care techniques for mobilizing the scar tissue and nerve, including gua sha and cupping. I also have hand and forearm exercises to continue working on; I had been doing them almost daily and have fallen off some in the last couple of weeks but hope to get back into it. Just one more thing on my list of daily to dos!
I continue to have regular pain in my forearm along the line of the plate, in my wrist at the ulnar attachment, and pain and stiffness my pinky, ring, and middle fingers.
I’ll see the hand orthopedic surgeon on 9/9 to discuss the pros and cons of removing my ulna plate. They’re treating this as a pre-op appointment which I appreciate in case I decide to move forward with scheduling surgery. From what I understand, it is minimally invasive; it is more a matter of weighing the possible benefits with any possible negative consequences (for one, my body tends to get retraumatized with surgery and increases general levels of pain, dysfunction, instability, etc.).
PT
I continue PT sessions almost weekly to strengthen my back body and hip stabilizers and work on proprioception and balance. In our sessions, I start with cardio and often run on the elliptical, then do some exercises or work on the tissue in my thighs, knees, butt. My exercises have been pretty stable for the last few weeks, so hopefully, we can progress or modify some of them; I feel a bit stagnant! And then am also wondering if I need to shift my mindset about my home workouts… when people go to the gym, they often do the same exercises, right? I don’t need to always keep progressing, or is there more to move on to?
General
KT Tape is a new addition to my lower limb support; I’ve been taping my wrist and forearm for several weeks now but recently added tape to stabilize my left ankle and knees. It is all very helpful!
Bodywork:
I have wonderful bodywork providers that I see weekly and always receive thoughtful feedback and insight into what is going on for me. Here are some examples:
knees = needs
My body pain patterns and energy show that I am giving too much to others and carying weight I don’t need to. How can I consider giving more to myself first…
Twitching during treatment as release of trauma, also could be seen as fight or flight response making up for things I couldn’t exactly fight (my dad passing away quickly and unexpectedly, a semi crashing into my car)
Could I release some pain in my heart by screaming under water? :)
New treatment ideas: upper cervical imaging-guided injections to help stabilize, perineural injection therapy for pain and numbness, neural injection therapy for scar release, feldenkrais to help with my core issues that keep coming back and subconscious holding patterns or patterns or movement (instability of rib cage, upper cervicals, ankles/feet) - Most of these are likely be out of pocket costs so I need to explore whether I can make any work right now but I am interested.
I was supposed to see my original facial reconstructive surgeon on August 28th in Colorado Springs, and when I arrived I was told my appointment had been moved to Friday August 30th. I simply couldn’t make that appointment happen darnit! I haven’t seen him in person in almost a year and a half and was excited to reconnect, hear his feedback about how things are healing, and discuss possible next steps to continue improving my appearance. I will find a time to reschedule when I can travel to Co Springs.
Pain: I said this last time and it remains true: I continue to experience significant levels of pain throughout my entire body and face and feel like I have plateaued. It is amazing how far I have come and is still hard to sit with this much pain all the time. I am constantly working on my health and wellbeing, seeing providers regularly who help A LOT.
Mental health: I have been really struggling and also trying a lot of things to help me! Sometimes I feel so overwhelmingly alone with my experiences - both what happened and appointments I have - and I want to hide or run away from it all.
My behavioral health therapist has been helping me process and move a lot of trauma lately. I have been having unexpected bouts of nausea and vomiting, and I suggested that it feels like an anxiety response to having too much - her idea is that when we are taking in too much that doesn’t resonate or doesn’t feel like our truth, our body expells it. All of this makes sense to me!
I started doing ketamine group therapy for PTSD through my PCP and was able to have 3 sessions before the group ended. She unfortunately isn’t doing more groups, but I can continue with individual sessions with her. It is recommended to try at least 8 sessions and I’d like to do that and hope to get some help from it!
My first session was really wild… I had a flash back to what I think was sometime soon after the collision and I was receiving a lot of medical attention to my face. I felt claustrophobic and saw hands coming at my face. I realized, while in the K session, that this was a flash back and it was certainly scary but I was able to tell myself in both places (in the group therapy room doing ketamine and in the flashback), that I was safe. It is pretty magical and healing. I didn’t realize I needed to connect to that version of me and to feel safe in both places.
My second two sessions have been much less vivid but the imagery and message have been that I am stuck and being pulled forward at the same time… that sure resonates.
I’m eager to keep going and see what comes of this…
8/2 Neuropsych Eval: quite an arduous process. I spent 6 hours in person doing testing, and then 3 more hours the following day at home on the computer. I liked the evaluator very much and got along with him well, felt respected and seen, and think he did an amazing job with the report. Not surprisingly, it showed that I have PTSD and somatic symptom disorder, persistent, severe. The somatic symptom disorder diagnosis really spoke to me because it explains that my extensive health problems cause excessive thoughts, feelings, and behaviors, and exacerbate my PTSD. The report also speaks to my previous TBIs and that with the additional head trauma from this collision, I am at an elevated risk for developing CTE (something I’ve suspected for a long time). There’s not much to do about this CTE risk, other than receive regular neurological evaluations, which I was already working on with my neurology appointment scheduled for 10/29.
General upkeep: Sometimes, I am overwhelmed by the number of appointments and the fact that I leave nearly every one with at least one more recommendation for something I could be doing more of or start doing. It’s hard to balance! At the same time, I have such thought-provoking, open, and honest conversations with most of my weekly providers; it is really lovely - and, a lot to process! We just keep moving forward and seeing what we can do! There are more therapies and explorations to be had, and it is always a balancing act to determine the right number of appointments/providers to juggle at a given time.
8/31 I’ll do an Independent Medical Evaluation for the lawsuit, which is common in personal injury cases. One of my providers is worried about the methods typically used in these evaluations - functional capacity exams - where the patient is asked to, for example, repeatedly lift 50lb from the floor until they can’t anymore. So, I will have to be on guard and protect myself, saying no when I need to.
General Updates and Happenings
Grief: Lots of grief this past month! 7/20 marked 3 years since my dad died, and 7/30 would have been his 86th birthday, and on top of those very real and heartwrenching milestones, I continue to grieve how deeply my life has changed due to this collision. There’s also all the constantly evolving information related to the lawsuit and medical trajectories that definitely feed into my grief.
Disability benefits: I hired an attorney to help me navigate the application and appeal if/when I am denied. I thought this would help streamline the process and take the burden off of me but it actually created a bit of a shit storm of communication to/from providers as they now have another source asking them for documentation. It is calming down finally but created a stressful few weeks for me and added a bit to my anxiety and guilt about being a burden. We will see if this helps smooth the process along… I can’t believe it has been 1.5 years since I applied and my application has still not even been fully processed! I’ve had close to 30 providers since the collision and while not all of them have information that helps my application, when you think about the somatic symptom disorder diagnosis mentioned earlier (neuropsych evaluation), it makes sense that it is all relevant and might overwhelm the system.
I came home from my Denver trip 8/28 to a big packet from SSA with a disability questionnaire that I need to fill out and submit by 9/1. What a timeline! It is 10 pages. It never ends… but, I have never received anything from them thus far so it is progress!
Victim’s Compensation Fund: I may be able to get some financial support and they’ve agreed to make an exception for me applying over 1 year past the date of the incident, but now the DAs office wants more information about the civil suit before they will process my application. The back and forth continues…
HSD Benefits: trying to get SNAP now that we have less income as a household, it is still quite a process and we need to submit more paperwork but hopefully will get SNAP benefits soon.
Lawsuit: We’re still hoping for trial in November, though there is always a possibility that we will settle before then or that the trial will be delayed. Two weeks ago, I listened in on my attorney’s deposing the other side, so things are moving forward, and I’m hopeful that it will all work out without additional delays. The unknowns associated with this process certainly contribute to my hypervigilance and anxiety, as do the constant schedule changes! It is also hard to have so many secrets or things that Patrick and I can’t really talk about with other people…
Living life: I had a month of being able to do some travel and fun events, and then I had a realization that I was trying to do too much - for the sake of my health and well-being, my finances, my mental health, keeping up with my appointments and recovery. August has been a month of cancellations, UGH. It feels horrible to keep having to cancel plans and while I know it is the right thing, makes me feel unreliable and worry about what others think of me.
I was supposed to go to Chicago for a friend’s birthday and also to a bachelorette party this month and had to cancel both.
I was able to go to Denver this past weekend, AND DID THE DRIVE FOR THE FIRST TIME ALL BY MYSELF! I did a little ceremony at the site of the collision (see here) - it was very special. The pre-drive anxiety and loss of sleep got to me, but then when actually doing the drive it felt pretty smooth. After spending my time at the site and driving on, I felt lighter and happy. I enjoyed several days spending time with my mom and then a night with some close friends. It is always so yummy to be in Denver and a tad bittersweet to come back home to where I don’t have my closest family and friends. Wednesday 8/28, I got up early to head to Co Springs for my reconstructive surgeon appointment that ended up being cancelled. Blah!
I wrote last month about how all the travel and fun was contributing to my overwhelm, and it still rings very true. When spending more time away from home, I am either missing appointments and home workouts and/or cramming them in when I am home. It makes it hard to be present when I’m running around all the time. I feel like I have too many things on my plate. With all this fun I am having, I sometimes even mull over the questions of whether I deserve to have fun, how do I pay for it, am I putting myself in a bind, should that time be used for trying to work, aaaaand it hinders my ability to keep up with my appointments and everything else I need and want to do to heal. I also know that having fun and connecting with people is important for healing and it is all about balance. Summer tends to be a busier time for everyone and how lucky am I to get opportunities to do fun things with family and friends.
Olympics have helped me move through some of this - easy to watch while motivating to do my workouts, a nice distraction from the present moment
I’ve had some back to back unexpected and frustrating life situations! My (new-ish!) car broke down on 7/24 and didn’t get it back until 8/12, ended up being a squirrel that ate the wires so we trapped it and let it go at the park, then while I was driving the camper van it also broke down, and I missed many appointments due to these unforeseen events; now our sweet doggie, Mac, has an eye ulcer and just had surgery today. Poor baby. … and all of this costs money!
Community: I have a hard time even keeping up with communication and getting the connection that I want, often having little energy, and then feel down on myself about it. I frequently can’t get to all the things on my list (especially house chores) and feels often like everything is crashing down. Wahh. Thank you all for understanding if/when I’m a poor communicator or don’t follow through on plans!
I’m continuing to play volleyball at least once a week, which is pretty amazing that I can do! It increases my pain, but as long as I go back to baseline, my providers think it is safe for me to do. Yay. I even played in a tournament recently, which had a lot of breaks built in thankfully - I am still hurting a bit from all the effort but it was a blast. We also have a growing volleyball community that always feels really yummy to connect with and be outside, exercise, catch up, etc.
Our yard and garden continue to look amazing!
Patrick and I went paddle boarding for the first time last week! We did just a short outing for me to try it out, and wowee it was very hard for me standing up with poor balance and my legs just trembled but it felt really good to be out there. I told my PT about this experience and we are adding more proprioception exercises to my routine.
On the Horizon
Weekly appts in Taos: bodywork, pain management, chiropractic and myofascial, PT, OT, behavioral health
8/31: Independent Medical Evaluation
9/4: ABQ Orthodontist
9/6: Dermatology Evaluation
9/9: Arm orthopedic surgeon to discuss removing arm plate
9/20: Patrick’s brother’s wedding in Los Lunas, NM
9/23: Legs orthopedic surgeon to discuss knee/hip MRI results (and hopefully L ankle) and next steps
10/2: ABQ Orthodontist
10/9: PCP Appt
10/19: Cousin’s wedding in KS
10/26: College friend’s wedding in Santa Fe
10/29: ABQ Neurologist
10/30: ABQ Orthodontist
November: Trial in Denver
