Tuesday, December 19, 2023

My body is trying to kill me

Welp. 

So where were we? I was getting help for a “pulled muscle” and hoping to get back to running so I could race a half marathon to celebrate my newfound AARP status. 

That didn’t go as planned.

My pulled muscle actually ended up being a herniated disc in my lumbar spine, plus three more bulging discs. The pain I was having became excruciating. It actually scared the shit out of me.

I did not see this coming at all.

While I’m so thankful I found the right doctors and got the scans I needed for an accurate diagnosis and I have a great physical therapist helping me get back to being a marathoner…..holy Jesus, this is hard as hell. I have had five PT appointments so far, and today we actually progressed to more impact and added weight to the exercises. Positive forward momentum is what I am hoping for!

So the herniated disc is the worst of it all, but it’s not the only thing. Do you have popcorn handy? I feel like we need popcorn.

I have started referring to myself as the most messed up healthy person out there, because while I've spent nearly two decades focused on being healthy, functional, strong, and "young for my age" (for crap's sake, I was a personal trainer!), I have entirely too many frustrating physical issues. For the third time in 3 years, I have been sidelined from running for an issue not even related to running. A herniated disc might not be as big of an issue as that damn busted rotator cuff from 2020, but it's a pretty big deal regardless, enough so that I have to take recovery really seriously and be dedicated to daily physical therapy for the foreseeable future. Coming back to running without nerve pain is going to be a huge endeavor. I'm tired of huge endeavors, you know?

Anyway.....a recap of my history unrelated to rotator cuffs and herniated discs to get up to speed on everything I've been dealing with the last few months....

In 2009, I was diagnosed with eosinophilic esophagitis, which is a chronic immune system disease where white blood cells called eosinophils build up in the esophagus, creating strictures that can cause food to get stuck. It's a potentially deadly disease if left untreated, as you can choke to death due to the strictures. It can be triggered by allergens and acid reflux, of which I have both. I have actually had this disease my entire life, but didn't have a name for it. All I knew was that I could never swallow any pills other than tiny ones, and food often got stuck in my throat, causing spasms and an inability to swallow for hours at a time. I finally went to an ENT, who then referred me to a gastroenterologist. I had an upper endoscopy done, where my esophagus was actually stretched (and then repeated two months later) and I had an official diagnosis.

So all the people who made fun of me for never being able to swallow pills....screw you. I physically couldn't and not one doctor thought to look further into that. They all thought it was psychological. 

For the past 14 years, I've been on and off acid reducers, and have had several upper endoscopies done with my esophagus stretched each time. It was looking like I would need to repeat this process every two to three years for the rest of my life. I had come to terms that this was just the hand I was dealt, and I was thankful to always have great health insurance and the financial ability to continue to pay for the procedures. 

Late last year, however, I got hopeful news. My allergist mentioned a drug, Dupixent, that had just gotten approval to treat eosinophilic esophagitis and would be the very first drug that would treat the actual disease, and not just the symptoms. It's a drug that is typically used for eczema and asthma (basically, shit that happens when your body attacks itself), but had shown promising results of actually reducing the number of eosinophils in the esophagus. I was thrilled at the possibility of actually getting control of my disease vs. just managing it. I started the weekly injections in March (I inject myself...it's not so bad). 

My insurance was requiring me to get another upper endoscopy done (my last one was in November 2022), in order to see if the medication was working. It's an extremely expensive drug and I needed positive results. Right after being informed of needing to get this scheduled by January, I had an episode that landed me in the ER in September.

While on a walk in Seattle, I started having intense chest pains, had trouble taking deep breaths, and my heartrate skyrocketed. I made it back to the apartment, thankfully, but my distress was increasing rapidly, so much so that I had to call 911. I had no idea where an ER was and just needed help. I didn't know if it was my heart or something else, but the pain was rapidly increasing. I got to head to the ER in an ambulance....oh how fun (and embarrassing).

Virginia Mason Hospital in downtown Seattle took great care of me. I had EKGs, a cat scan, tons of blood work done, and I got to rest a bit. The pain decreased but never dissipated completely. I had some scar tissue that showed up in my lungs (probably from my recent bout of Covid) and they could tell I had eosinophilic esophagitis, but nothing was totally alarming. It basically all pointed to a major acid reflux attack. I needed to chill out and go see my gastroenterologist for an upper endoscopy, which got scheduled for December 15. In the meantime, I needed to again be on an acid reducer in the hopes my stomach issues resolved themselves. I had a several more weeks of constant stomach pain but eventually it did substantially dissipate. 

Unfortunately I had one more intense physical ailment that scared the crap out of me before I had the opportunity to have my procedure. On December 4, while in Seattle (why does this city try to kill me?), I had a very sudden, very unexpected allergic reaction. About two hours after I had eaten, and right after an easy elliptical workout (during which I felt like absolute crap), I felt my bottom lip start to tingle. Within minutes, I could tell it was starting to swell. It very quickly reached an alarming level and I did a video visit with Teledoc. The doctor was concerned enough to tell me to head to the ER as it could move to my throat and cause anaphylaxis. 

Ever taken an Uber to the ER? I have!!

Greg met me at the ER (it's only a half mile from his office), and they saw me very quickly. At that point it wasn't getting any worse (the two Benadryl I had taken as soon as it started finally kicked in) but I needed to be monitored for about two hours to be sure it didn't spread. They got me set up by the nurse's station to hang out, I sent Greg back to work, and I got settled in to hope the swelling dissipated and I could just go home. People pay good money to get lip filler to look as ridiculous as me and I really don't understand that at all. 

While I was there, I got to witness a drug overdose, someone convulsing, someone vomiting in front of me, a screamer, a drunk lady in very bad shape (doctor quote: "were you drinking to celebrate or because you're really sad right now?"), and a dude on drugs who threw his shoes at the nurses next to me. Downtown Seattle on a Monday afternoon is pretty exciting, people.

My lip finally reduced in size within two hours, and they gave me even more meds, so I was ready to head back home. I even made it to Greg's work event on our rooftop that night for a little while, although I was drowsy from the drugs and didn't stay long. 

Now, mind you, this is all happening while I'm trying to do physical therapy for my back. Frankly, I'm getting tired of all this shit. I want a normal week in the life of a healthy Steph. Too much to ask?

So now we are at December 15, I have eliminated some things from my diet so I don't have another allergic reaction, and I am ready for my procedure to check on my esophagus and my stomach. It all went very smoothly, I even let Greg videotape me coming out of anesthesia because I was damn hilarious (Me: "can they give me more drugs?", Greg: "maybe we can get some to go!", me: "that's illegal. It killed Michael Jackson"....intriguing stuff right there). And now for the first bit of positive news in a really long time....

The drugs are working! Dupixent is actually REDUCING the eosinophils in my throat, it looks great, there's no sign of the gastritis that likely prompted September's ER visit, and I can continue taking the medication and don't need to see my gastroenterologist until June. It was honestly the absolute best case scenario.

After several months of frustrating ailments that seemed to keep happening one after another, this was welcome news! 

I know that some of my gastrointestinal struggles likely stem from chronic emotional stress. It's been a challenging couple of years and our routine as a family has taken a bit of a beating. As much as I try to manage my stress, I've had several bouts of being "too" stressed, it's affected my body and my frustration has increased. I need to continue to find ways to practice gratitude, to pray, to look for the positive, and to center myself. There are so many things that have been out of my control, but I am the only one in charge of my reactions to what life throws at me, and I need to better own that and to look for ways to steer my life in a better direction when I can. 

There are so many things to look forward to in 2024....starting with a 50th birthday trip to Napa with Greg, my in-laws, and some friends next month. Knowing that I'm physically healthier on some fronts, and working towards being more physically functional (and a marathoner again!) definitely reduces my anxiety. I don't want to get stuck in the funk...I want to LIVE. 





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