Achy Smile

09/03/2026

📣Today is National HEADACHE Act Call-In Day.

Over 40 million Americans live with migraine and headache disorders. Migraine has way more symptoms than just head pain, and it's often misdiagnosed. According to Mayo Clinic, studies show up to 90% of people who think they have a sinus headache are actually experiencing a migraine.

Congress has heard our stories, now it's time for them to act.

Here's how to help:

1. Find your U.S. Representative
house.gov/representatives/find-your-representative or call the Capitol Switchboard at 202-224-3121

2. Call and make the ask
Tell them to support H.R. 5536, the HEADACHE Act:

Support it — cosponsor if they haven't already

Move it — help get it considered and marked up by the House Energy and Commerce Committee

Pass it — support including it in a year-end health package

Scripts available at allianceforheadacheadvocacy.org/its-time-to-move-the-headache-act

Your voice matters. Make the call.

Alliance for Headache Disorders Advocacy

08/29/2026

Anyone I know with psoriasis or psoriatic arthritis use Broc Shot?? Does it help you?

07/23/2026

Marissa went back to Austin yesterday and I already miss her so much. She was an incredible care partner these last two weeks. Showers, home-cooked dinners, coming running the second I called her name, Netflix binges, a lot of laughing, and she even mastered her French braid. One lucky mama right here. 💜

Today was the highest pain day since surgery, and honestly the math adds up. Ran out of gabapentin and didn’t catch it until it was too late last night. Only 2.5 hours of sleep. Missing my girl. And I went back to work Tuesday, which was exciting but not as smooth as I’d hoped.

Looking back, yesterday probably set it up too. I sat at my desk almost all day with only an hour break, longer than I’d sat since before surgery. I also pushed up off the ground with my left arm without thinking, and later lifted a heavy pan making dinner. Two judgment errors in one evening. Noah took over dinner duty and made an amazing chicken broccoli alfredo.

My brain runs go-go-go all the time. This week’s lesson: slow down. Marissa put it perfectly today: be purposeful. 💜

07/19/2026

07/19/2026

11 days post-op today. My incisions are healing so well, I'm really thankful for that. I do want to be honest though: I've developed a surgical complication, fluid building back up in my lungs. My X-rays were clear when I left the hospital, but over the last week I started getting pain with deep breaths and coughing, and that's what it turned out to be. Actively working on it with my care team. Otherwise, I'm doing so good y'all.

Here's the part I'm still processing: Before surgery, my left hand was basically unusable for anything substantial. Carrying things, holding heavy items, washing dishes, cooking, cleaning, driving, all of it was off the table. This week I started PT, and during a session I held my left arm out just to see what would happen. Normally by 45 seconds to a minute, that would trigger a hemiplegic migraine attack, and a bad one. I held it out past a minute. No tremors and no pain!! So I kept going, just testing.

Not one single hemiplegic migraine attack all week. I have had mild migraine attacks here and there, but they were short-lived and didn't lead to anything requiring heavy medication. My surgeon believes these attacks are related to the surgery itself and what was done during the procedures. We're hoping that once the swelling goes down and things really start to heal over the next several months, it may become much harder to trigger my hemiplegic and other types of migraine.

I'm trying hard not to get ahead of myself. I've been let down by hope before and I know better than to plan a victory lap this early. But I can't fully talk myself out of hoping either. So for now I'm just going to let myself hold onto it.

More updates soon. Thank you all for walking through this with me.

I'm open to answering any questions about what thoracic outlet syndrome is and how it came to become my diagnosis. It's been a long journey... a long 22 years.

07/10/2026

Surgery is done. I'm on day 3 after surgery and doing well. I truly underestimated my capability to handle my pain levels. Thank you all who sent me well wishes and prayers. Having you in my corner has really helped lift me up. The last few days were difficult with nausea and pain, but today is a much better day and hopefully I can go home today. I left the ICU last night, and that was a good sign. 🩷

A huge thank you to my family, especially Stephen, my parents, and my kids, for being by my side through this. My sisters for checking in everyday, I love y’all!! Long recovery ahead, but I'm grateful for this progress.

07/06/2026

too good not to share

07/06/2026

TOS surgery is tomorrow and I am trying to make peace with it. Reminding myself why this is important. In my research and as told by the doctor and his PA, the recovery is going to be really painful and really rough. Others who have had this surgery say this was the most painful recovery they've ever had and it lasted months...that's saying something coming from chronic pain patients. According to my neurovascular surgeon, I have a wide set of ribs. I've also been dealing with this compression for YEARS after a car accident in 2004. I also have hEDS and a type of Dysautonomia (not POTS, but close), as well as Undifferentiated Connective Tissue Disease. Throw in Hemiplegic Migraine that is left sided. I tired scalene blocks and I've had so much PT over the years and nothing has helped. So surgery is the next step. I've had to cancel so many family events out of town because the drive is hard on my joints and muscles or I was already in a flare of some kind (just pick a condition, it flared). In order to distract myself from the surgery, I've been preparing for it. Organizing my life on paper, ordered several things from Amazon, labeling all my medications so my family knows what to give me and when, cleaning my room really well (which is the hard part because it's hard for me to clean). On top of this, I had to stop my Enbrel and my Celebrex, so of course I'm in more pain. My neck is on fire all day now, especially the left side (which is also going to be my surgery side). I think I have everything prepared and I'm logistically ready. I'm writing this as I sit waiting for my virtual appointment with my surgeon. We will be discussing additional testing he had me do last week to see if my subclavian artery is involved in all of this. Thank you everyone who has messaged me and put comments on my last post. You guys are amazing and your words have really lifted me up. I am very Blessed and so lucky to have you in my corner. 💜

TOS = Thoracic Outlet Syndrome

Send a message to learn more

06/30/2026

Y’all I need everyone’s positive vibes and prayers because I am terrified for my surgery next week. I’m trying to stay positive and it’s just not working. I will say, I should probably NERVER have joined a TOS group this soon before surgery because all you’re gonna see is the negative stories. Very rarely do you see the positive ones because people go on living their lives feeling good. And I know this…but still. I haven’t slept well and the anxiety is growing with each day that brings me closer to the 7th. Yesterday, late at night when I was spiraling, someone posted in the group that they needed positive stories because they were freaking out (like me) and that if anyone had any to please post in the comments. I’m really glad they did because there were so many positive experiences that you just don’t see in the group as a whole. It did give me some hope. But the anxiety is still poking me in the shoulder. Let this be a reminder to everyone in groups that when you’re feeling good and your treatments are working well to take a few minutes to update with the good stuff because those stories help people with a lot of anxiety, especially when they’re starting a new treatment or a procedure. Lots of love.

TOS = Thoracic Outlet Syndrome

06/24/2026

Love seeing the awareness!! Thank you Clusterbusters for walking for everyone living with cluster headaches yesterday. 💜