August 30th - September 29th, 2024
Friday August 30th - Sunday September 29th
General Updates and Happenings
My morning routine includes reading on the heating pad, meditating outside and stretching, and wandering around in my garden; it sure has helped me find more balance and grounding to start my day. I notice when I have an early morning obligation that my day feels more scattered and stressful when I don’t have the slow morning time that I’ve come to love.
I’m still pretty exhausted and fatigued all of the time. I know it is a combination of my body continuing to work very hard every day to heal, as well as the emotional and mental toll of everything I continue to have to navigate.
I’m continuing to play volleyball at least once a week, which is pretty amazing that I can do despite having so much pain. We’ve been playing indoor and I’m excited to have that continued activity and community throughout the winter season when I likely won’t be on the mountain with everyone else!
Patrick and I did a hike in the ski valley that was very challenging and slow for me, but was an amazing accomplishment! I was pretty sore and exhausted afterward and luckily had a couple of days of rest to recover.
Community: This last month, there has been a lot of fun socializing in Taos; it has been very heart-filling. There have been several dinner get-togethers with the volleyball crew, a pre-volleyball ladies' happy hour, and seeing Motet at the Taos Mesa Brewery. I had a dear friend in town for a few days and got to catch up and spend time with her; I sure miss her living here!
Our pup, Mac, healed well from his eye surgery and had to wear a cone for 3 weeks, requiring more care and attention to his general movements. He couldn’t go outside alone for fear of him scratching his healing eyeball. This extra level of need from him brought more moments of stillness to my days and was an unexpected benefit from the situation.
9/19-21 Went to Albuquerque and Los Lunas for Patrick’s brother’s wedding. It was a beautiful celebration and a wonderful time with family. We stayed in my cousin’s casita so had lots of yummy family time while there.
Our garden and yard continue to look wonderful and we scheme and plan new projects all the time; it’s a really fun and special space we are building here. I’ve started a flower drying project, experimenting with some flowers from our gardens and am eager to see how they turn out and what I can do with them.
Disability benefits: no update; I continue following up with my disability attorneys who don’t have updates and continue hearing from providers that they are receiving requests for more paperwork from either the disability attorney, Social Security administration, or attorneys for the civil suit. I am beyond frustrated with this whole process and also feel bad for my providers getting all these requests and having extra work to do.
Victim’s Compensation Fund: the back and forth between me/my civil suit attorneys and the DA’s office continues. This fund is not necessarily meant for people who are involved in a lawsuit where they will hopefully receive compensation for their losses but rather for victims of crimes where there is no lawsuit. They are still exploring whether it makes sense to support me from the fund, and I’ve heard it will be another month before they know. I’m not holding my breath for any news in a month as I’ve heard the same thing several times already.
HSD Benefits: We got approved for SNAP benefits! We have a pro-rated amount for Aug and will continue with benefits from now on. We haven’t received our EBT card yet though and I have had to call and ask about it several times. Let’s hope for this next week. Yay for some financial support finally!
Lawsuit: We’re preparing for trail in November and at the same time, not holding on too strongly to the belief that it will happen then and be over. There are so many variables! It could get delayed again, we could settle before, even if trial happens in Nov there is the chance that it will be appealed.
As we get closer to the trial date, there are more documents to review, requests to respond to, and long meetings. I can’t talk in too much detail about it all and that is a challenge given how much space it takes up in my heart, mind, and life.
Expert reports: we continue to receive many expert reports about my various conditions (and general experience) and it is fascinating and challenging to read them all. Of course I don’t agree with all of what they say, some provide new and helpful information, the methodologies and expertise are intriguing to me, it is quite complicated feeling all of these things and knowing it is about ME!
Medical Updates
Mouth
9/4 Orthodontist: she again reported great progress and said she still believes I’ll get my braces off by the end of the year! My front teeth came together quickly after her adjustment, and she filed some teeth to help improve my bite even more. I was instructed to continue wearing top to bottom rubberbands to keep working on my crossbite.
My teeth still don’t appear straight, with a slight incline from R to L across the top teeth; my lips are inclined in the opposite direction (R side of lips move up more in a smile than the L) which I think exacerbates the crookedness I see. It still sometimes looks to me like my skin was put crooked on my skeleton or vice versa, and it is hard to look at myself when I see that…
9/18 broken tooth(!): I was leaving an appointment and eating lunch while running errands, and realized after my first bagel bite that my tooth had broken in half and I swallowed it! It is the same tooth on the lower left that had been fractured in my initial injuries and was fixed with an inlay/filling. It was a bit anxiety provoking, as one might expect. Not super painful but just weird feeling and made me nervous about the health of the tooth, infection, etc. Plus, I was very hungry and then was scared to keep eating! I texted my orthodontist and oral surgeon, finished running my errands, and got a reply to get in with a dentist asap to see if they want to move towards a crown or fix it again. After calling around a bunch and mildly stressing out, I was able to get in with the ABQ dentist who did the original filling, and luckily, we were already headed to ABQ for a wedding. Yeeeesh, what timing!
9/19 dentist: she wasn’t overly concerned with how the broken tooth looked and did want to move towards a crown. They organized with my orthodontist for me to come on 10/2 (I already was seeing the ortho that day), get my braces off, go get the crown, go back and get my braces back on. That will be a long day! Glad to be getting it done soon and have a more permanent fix.
I am still mostly numb from the cheekbones down, which is helpful when you break a tooth and could have a lot of pain, but overall is quite frustrating and sad - and also, just is. I’ve gotten used to it, and then sometimes I am reminded of how different it is, and that reminder is triggering. I still sometimes have shooting pains in my eye sockets, nose, and ears, though they are less than they used to be. The ongoing movement of my teeth and alignment of my jaw causes muscle tension in my jaw and sides of head. It’s weird to be so numb and then all of a sudden have pain. Why can’t I have moments of pleasure, too? Like being able to feel kisses or a nose nuzzle.
Eyes
Vision: no change in vision issues and while I love the change to cooler weather, the shorter days also shorten my daytime hours of independence and limit what I can do without asking for help (i.e. a ride at night). It is hard to ask for help! And I have a lot of people who are very kind and don’t mind at all… I just have to ask!
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.
Skin
9/6 Dermatology Evaluation: I asked for a full body check, specific attention to my scars, and opinions on scar and hair removal treatment options. My skin looks healthy for the most part, which was very pleasing news; they would like to continue checking every 6 months. The scar on my neck from tracheostomy has freckles/moles that have changed slightly over the last 2 years, so that area needs to be watched in particular. Their office does not do cosmetic dermatology, so she suggested going to one of their offices in Santa Fe for a consult.
On the night of 9/6, I happened to meet a friend of a friend who is an esthetician opening a new practice with an MD in Taos. I have been in contact with them for a skin consult.
I also remembered a family friend, an esthetician specializing in scar reduction, offering her services to me a while back, so I reached out to follow up on her offer.
10/11 I’ll travel to Co Springs to see my original face surgeon, a specialist in Plastics and Reconstructive Surgery, so I will wait to do anything else in this area until after I see him.
Face
10/11 Co Springs Face Surgeon: Seeing him will be so nice! I haven’t seen him in person in over 1.5 years. I’m eager to see what he thinks of my facial healing progress, discuss additional plastic and reconstructive surgery he might suggest, and explore options with dermatologists/estheticians. The shape of my nose bothers me and I am planning to ask about a nose job… last time I asked he wasn’t too keen but that was over a year ago.
I’m experiencing a slight nose smell again and while I don’t feel like I have a sinus infection and I work hard to keep my sinuses clear and healthy, I also know that I have a higher risk of sinusitis and it is risky given the condition of my face/nose. The smell is coming more from the left nostril where my sinuses are more collapsed. I asked my PCP for a nasal culture to be collected so we can determine if/what is growing in there, and I will go to the hospital to get it tested tomorrow when I also go for bloodwork.
Orthopedic
9/9 Orthopedic Arm/Hand Specialist: Great appointment, despite being in the office for 3.5 hours and spending maybe 20 minutes with her and her resident. I wasn’t sure she really knew who I was, but she remembered me and was shocked by how great I looked since I last saw her (pre-eye surgeries and pre-jaw surgery). She asked if I had more facial surgeries on the horizon and I happily said no.
She is happy to remove my ulna plate and thinks it will decrease my continued pain. It may also make my nerves happier, which could improve the pain/stiffness/dysfunction of my fingers.
I asked if she would remove my left ankle plate, and to my surprise, she agreed without any fuss! Woohoo! She and my leg/ankle surgeon in Co Springs know each other and have a lot of respect and friendliness. I am very happy. My ankle has been painful and unstable for most of the summer and after removing the plate, I will be able to have prolotherapy injections to help stabilize the joint.
The surgery will include a nerve block in both the L arm and R lower leg and local anesthesia and will be pretty quick. I’ll have to gradually get back to normal activity and exercise over the first 2 weeks and after then should be back to no restrictions.
9/23 Orthopedic Follow-up for R hip and bilateral knees: As usual, at the beginning of my appointment I was asked what they were seeing me for today - their office is so disorganized! Then, they had to locate my MRI results which took about 30 minutes I didn’t get to see the head surgeon who I have seen several times before, but instead saw a fellow. He was very nice and thorough but I wasn’t as comfortable as I would have been with the Dr I know well and who has spoken to my other providers about my case. The fellow didn’t speak great English, and I had never met him before, which, upon reflection post-appt, affected my ability to be fully present and ask all of the questions I wanted to. But, we did get to talk about all of the MRI results:
Knees: he suggested doing cortisone shots again but given they didn’t help at all last time, I said no thank you. I asked his opinion about prolotherapy injections and he wasn’t sure what they were, so I explained it and he thought it was a good idea. If I’m still having pain in a few months, they could go in arthroscopically and clean up the Hoffa fat pad and see if that helps. But, it is hard to know where the pain is coming from and they can’t offer much from their specialized perspective.
R Hip: he also suggested a cortison injection which for the hip will hopefully help with pain but also be diagnostic as it will tell us if there is inflammation in the joint contributing to the pain and instability. For this, I have to go to the hospital as it is a fluoroscopic guided injection under a live x-ray. I will schedule at the hospital when insurance approves. They do think I’m ultimately going to need an arthroscopic procedure to repair my torn labrum, and will refer me to a specialist in CO for this.
After discussing the cortisone injection with several of my providers, I’m eager to get an initial appointment with the CO hip specialist to discuss what he thinks of this approach. I’m working on getting this referral and of course, it is slow and cumbersome but it will happen hopefully in time for my upcoming CO trip.
General
PT: continuing with weekly PT and working on back body, core, as well as a lot of proprioception and balance. I enjoy my sessions and the provider and assistance I work with.
Bodywork: I love my providers! They feel like family, always have wonderful insight, and I feel truly seen and appreciated by them.
8/30, 9/6, 9/13, 9/18, 9/27 Myofascial Chiropractor: She always does full body evaluations and spends about an hour checking and adjusting alignment, and releasing myofascial tension patterns. She makes maps for my other providers to use when working on me, suggesting areas that she thinks could use the most attention. As pain and instability patterns release in one area, they pop up in another. This last appointment she simply said, “No, it just isn’t fair at all.” So sweet and caring. My digastric muscle and hyoid bone in my neck are out of place causing weird tension patterns on my neck that haven’t happened before. My left ankle has been bothering me for months and the right has been doing great, now all of a sudden the right ankle is acting up too. Good grief!
8/31, 9/4, 9/25 Pain Injection Specialist: I don’t know what I would do without him! His treatments help me immensely and he is willing to see me more than the typical patient due to my widespread ongoing pain. We covered a lot of ground this past month with lots of muscle work in upper/mid back and neck, prolotherapy in 6 ribs on each side, with probably 30 injections total; shoulder prolotherapy and lots of muscle work around shoulders; bilateral knee prolotherapy and trigger point injections in thighs.
9/3, 9/17, 9/24 Massage, Cranio Sacral, Structural Integration Provider: We always have such yummy talks when she is working on me, I feel so supported. She has gentle and thoughtful discernment into what’s going on in my heart, mind, and body. This past month we’ve discussed where I can find agency in all this mess of no control; she’s shared imagery of the heart pumping blood and using air, which also brings light/energy and the opportunity for more joy, and while moving through the body, recycles the old, gets rid of yuckiness, and an opportunity with intention to really remove things we don’t want or need; and then strategies for dealing with all of my stress and frustration. We also share book, tv shows, and other practices we both love.
9/16 Core Synchronism, Ayurveda, Movement Therapy, Postural Alignment Specialist: I typically see her weekly, and we had almost a month of not seeing each other! We missed each other 😻 She has been working on my nervous system and helping calm it amid all the never-ending craziness in my life. She reminds me of my power and resilience and provides beautiful imagery, usually images my body sends to her that make us laugh.
Mental health: For the last few months I’ve been able to prioritize working on my mental/behavioral health and open the door to the trauma and emotions underneath. This has been extremely hard and I’ve had wonderful support. But now, with medical care and the lawsuit both ramping up, plus other constraints out of my control (Ketamine therapy scheduling challenges), I am here considering if/how to close the door again, for now. I am doing fine and have many tools to support me on my own as well as my therapist just a phone call away and several of my body/energy work providers there to support me, too, though it is a bit tender to think about the month ahead without being able to coordinate any behavioral health appointments or ketamine therapy sessions. It will continue when there is spaciousness and capacity.
8/31 Independent Medical Evaluation/Functional Capacity Evaluation: this is standard practice in personal injury cases and was requested by the opposing side (learn more here). What a weird evaluation! You basically test range of motion, strength, and ability to do various movements from bending, squatting, pushing, pulling, lifting, to literally having to crawl around on the floor at one point. There was no discussion of my pain other than pain levels, and the exam, therefore, didn’t account for how pain over time, or pain that comes on more strongly after doing certain activities and stays at a higher level, might affect my ability to do things.
I have a few providers who were concerned about me pushing myself to do all the things I’d be asked to do in the evaluation, so I let my legal team know, and simply had to say no to a lot of things. This was interesting finding the balance in being someone who likes to push myself, accept and exceed challenges, and also knowing my body and that I can actually say NO.
I was pretty wrecked afterward, and I am grateful, once again, to my community of providers for helping to lift me back up and piece me back together.
On the Horizon
Weekly appts in Taos: bodywork, pain management, chiropractic and myofascial, PT, OT, behavioral health
Weekly meetings with legal team for civil suit
10/2: ABQ Orthodontist
10/9: PCP Appt
10/11: CO Springs Facial Reconstruction and Plastics Surgeon
10/11-18: Denver
10/18-20: Manhattan, KS for cousin’s wedding
10/26: College friend’s wedding in Santa Fe
10/29: ABQ Neurologist
10/30: ABQ Orthodontist
11/12-22: Jury Trial in Denver
12/4: ABQ Orthodontist
11/26: ABQ Orthopedic Surgery to remove L arm and L ankle plates
