April 13th - May 6th, 2024
Monday April 13th - Monday May 6th
Medical Updates
Eyes
General surgery update: I continue to heal well from my eyelid surgery. The goal was to create more space in the scar tissue pulling the eyelid down by inserting a skin graft taken from behind the ear as well as a internal and permanent stitch at the outer corner to pull the eyelid up (called a canthal suepension). These changes would allow the eyelid to hug the eyeball better which 1) should assist with dryness, 2) should create a more symmetrical look, 3) possibly help with the vision challenges I’ve been experiencing related to extreme light and reflection sensitivity.
Progress in “hugging the eyeball”: I am seeing a lot of improvement in the way the eyelid looks, it is more symmetrical to the other eyelid and hugs the eyeball better than it did before though there is still a gap. At times, I notice seeing the inside of the lower lid and also more white space between the iris and lower lid than the left eye. The scab on the skin graft finally came off 4/30, and I’m even happier with how the healing is going now! You can see progress photos here, if interested.
Dryness: I am still needing to use eyedrops several times a day and have been experimenting with what to use at night (regular drops, gel, ointment). I sure hope this improves and I no longer feel the need to use eyedrops all day long, as promised…
Vision: I’ve had no change in my light and reflection sensitivity, it actually might be slightly exacerbated post-surgery as I notice even sun reflections during the day can be hard for my eyes to navigate.
Healing of skin graft donor site behind ear: Starting on 4/19, I noticed a minor infection at my donor site as it became very inflamed and painful, with small pimple looking areas where stitches were still trying to make their way out. I have since been able to get it to calm down with a prescription antibiotic cream I had on hand - I’m learning more and more how much it pays to keep things around, at least while I continue to have surgeries and unknowns. There were still scabby stitches at the top and bottom of the incision site, with the biggest stitch (I think!) finally falling out almost 20 days post surgery. I don’t think I have any more stitches in there and it is starting to feel generally more calm in the area. You can see progress photos here, if interested.
Stitch at outer corner (canthal suspension): The incision area has healed well, with a small visible scar, and the outer corner of my eye remains sensitive to pulling on the skin so I have to be careful. I still have small bruises there and underneath my eye.
Ongoing care: I’m massaging the scar tissue and graft site under my eye as the surgeon advised and have not yet started using scar gel as I’m not sure whether it has fully healed. I do this massage at least once a day and usually more like 3-5 times. I’m also making sure to keep all wounds well protected from the sun as they continue to heal.
Mouth
I don’t have any big updates, though I have had some advice about things to do to increase salivation before a meal, so will report back more as I try those. I am also seeing a rheumatologist on 5/3 to assess if/how my Sjogren’s disease is flaring up and affecting my salivation as well as joint pain.
Chewing: After hearing from the orthodontist on 4/10 that my bite has improved so much, I am now noticing and testing it more - I can actually bite pasta noodles and don’t have to be so careful, Patrick and I have had fun making new sandwiches (grilled chicken, pizza sandwich) and a steak for our anniversary 🙂
Starting the week of May 1, my left side of the jaw and face have trigger points and muscle tension causing a lot of pain and discomfort. It is difficult to brush my upper teeth on that side, painful to open my jaw and chew. I might need to get trigger point injections there when I see the injection specialist 5/11.
General
The week of 4/22-26 I had a whopping 8 appointments, luckily involving no travel outside of Taos, but with two new providers. This past week I had 5, with travel to Santa Fe, and starting more work on prep for the mediation so it feels quite hectic. This week I have 6, with travel to Albuquerque on Wednesday, plus two lawsuit-related meetings as well as a lot of prep to do for the mediation. I’ll sure be glad when that is behind me!
4/22 new acupuncturist who my chiropractor thought might be able to help me specifically with knee pain but in general as well. He was pleasantly surprised that my pulses were so strong and said that was a very good sign, I am doing amazingly well. We did a first treatment that I felt went well and improved my energy levels and general function, and maybe even resiliency. Hard to say especially with so many appointments and input exactly what is influencing what… but I do know it is all helpful.
Knee pain continues to bother me daily, and I don’t think there was any change after the cortisone shots on 4/9. I am able to push through (and perhaps ignore) the pain when doing activities, and if it is really bad of course I stop, but the most frustrating part about the knee situation is that they bother me frequently at rest. For example, when I sit down or am driving I feel a deep ache and instability in my knees that I can’t get to calm down. I use different muscle creams and even just putting my hands on them sometimes makes them feel better but it is difficult to get completely comfortable. My right hip also continues to be unstable and causes a lot of pain on and off.
4/23 New OT/Certified Hand Specialist: we did a full workup on 4/23 and I’ve had two additional appointments so far; she believes my ulnar nerve is likely frustrated and the scar tissue has adhered to the bone in places, so she is working on loosening things up and creating more ease of movement. The past two appointments she has used tape to help ease movement and that does seem to help. We also noticed in my appointment on 5/6 that the area of the scar closer to the elbow actually feels like it is moving better and less lumpy, so that is exciting improvement!
4/24 Pain injections: we focused on right side neck and shoulder because it has flared up a lot since the last surgery. We also did an occipital nerve block which has helped to calm down my headaches. During injections, I experienced some weird nerve sensations, all around my behind ear scar that’s still healing. It felt like the needle was in the top of scar, some dripping sensations, which were not really happening of course. This has happened before with neck injections sending nerve sensations to my trache scar.
With increased activity like volleyball twice a week and getting back into yoga, I have increased pain for a few days after but then come back to baseline which is a huge positive. Unfortunately, my baseline is still a lot of daily pain, but very cool that it is not staying in an exacerbated state post-activity.
My chiro/myofascial pain expert believes it is essential that I get MRIs on my knees and right hip to understand what is going on; she is going to reach out to my orthopedic dr and relay this information. I did create a follow-up appointment with the orhotpedic dr on 5/21 to discuss my knees and believe I’ll need a separate appointment for my hip. On 5/1 I got a call from the orthopedic office that a knee MRI order (which I didn’t know was ever sent), had been denied by BCBS… I will explore further this week. Lots of moving parts!
5/3 I saw a new rheumatologist to see if she thinks my Sjogren’s is affecting my swallowing. She prescribed me a new medication that might help with salivation as well as ordered labs to check on the autoimmune markers.
General Updates and Happenings
4/17 Denver for Jungle at Red Rocks: first time not going in at the top, so we walked up and down A LOT of stairs. It felt great at the time, and kicked my butt later but calmed down enough to know I didn’t do any damage… yay!
Volleyball picking back up and nice weather has been wonderful! I love to play and am definitely hurting afterwards but it feels good to play.
Patrick and I celebrated our 8 year anniversary on 4/24. What a wild ride these past 8 years have been!
We’ve really been enjoying watching the NBA games, especially our beloved Nuggets!
A lot is going on for mediation prep, including working with family law to get a pre-marital agreement in place, working with a company to discuss a structured settlement when the time comes, prepping materials to present at mediation… it is all a bit triggering and stressful and is affecting my sleep. I’m eager to see what this next step brings and continue moving forward.
As of 4/29, Patrick has quickly and unexpectedly separated from running Hotel Luna Mystica for the past 7 years. He remains an owner but will no longer be GM. This is a huge change and we are still processing it, but ultimately it will be an exciting new chapter.
We (mostly Patrick) are working on a big front yard landscaping project, it’s going to look really nice!
We’ve had some quick family visits in the past week which is always yummy 🥰
Given our hectic schedules and many moving pieces, I continue to feel too full and either have a hard time making plans, or often cancel them. It is hard on the heart and also good to do what feels right!
Disability Benefits: no update, I think I will follow up soon… maybe after mediation is behind us.
On the Horizon
Continue weekly-ish appointments: PT, OT (for hand and arm), chiropractor/myofascial pain dr, massage, naturopath/energy work, therapy, pain injections
5/8 ABQ Orthodontist
5/11 Pain Injection Specialist
5/14-17 Denver for Settlement Mediation (2 full days with a mediator, 5/15-16)
5/29 Telemed with Co Springs Plastics/Reconstructive Surgeon (trauma doc who repaired my shattered face 1.5 years ago!)
6/2-11 Patrick and I go to Puerto Penasco, Mexico
6/12 ABQ Orthodontist
