“No Beer For You!”

I started writing this post about a bazillion times in my head over the past month or so. Every time the words flowed, I got 4 sentences in and couldn’t go any further. Sometimes it brought tears to my eyes. Other times, I was just too overwhelmed to be fretting about making this post happen.

So maybe I’ll start here with my last Untappd Checkin on July 19, 2019. It was a splendid small pour of Garrison City Beerworks ‘Unicorn of the Sea’ Sour Gose. My last brewery visit of our 2019 Massachusetts/New Hampshire Beercation – which also doubled as our annual visit with Mom and John who we love catching up with.

“What?!” you might say. “That was almost 3 months ago. You’re lying!” Nope. I’m not. That is totally real. And, while a handful of family and friends know how this story plays out, I haven’t gone public with this until now.

I have been diagnosed with Sjogrens Syndrome. An autoimmune disease that many people know nothing about or even know how to pronounce – “Show Grins.” But there’s nothing about this disease to grin about.

For those who have heard of Sjogrens, you think “Oh! That dry eyes / dry mouth thing?” For some people that have it, that’s all it is even though those 2 things in itself can get quite severe and debilitating. For others, it’s much more hideous. Especially for people who have had it most of their life.

Your autoimmune system can go into hyper mode and attack perfectly healthy areas of the body. It can attack your organs, skin, central nervous system, peripheral nervous system, vascular system, hearing, eye sight, digestive system and more. Pretty much your whole body. It can manifest as IBS, brain fog (confusion & forgetfulness), anxiety, extreme fatigue, persistent low grade fevers, kidney failure, as well as damage your lungs, heart, bladder, stomach, brain, nerves, spinal cord, and liver – LIVER!!! I’ll stop there. There’s more things it can jack up in your body. Every time I think about it, it scares the hell out of me of what is possible. Especially because it has progressed past the dry eyes and dry mouth for me… both of these 2 common symptoms, ironically, are rather mild for me. Although I did have to give up wearing contacts last year because of my eyes being on the dry side.

But see that’s the thing. While I was drinking my very last full pour of beer while visiting Tree House Brewing Co. in July, I had no idea I had the disease. I had no idea that ‘Hurricane (with Peach)’ would be my last beer selfie that I ever took. That the beer I rated a 4.5 in Untappd and everything I had hoped for as a tasting experience would be the beginning of the finale.

Even though a few years back a friend of mine had been diagnosed with Sjogrens and I thought “Wow! I have a lot of these medical conditions and symptoms thoughout my life. But stop being silly! Your doctors would have connected the dots and tested you if they thought this was a real concern. Stop self-diagnosing.”

It wasn’t until after I landed in the Lahey Hospital ER in Massachusetts, that I realized something was very, very wrong. What started out as a flare up of many of my chronic medical conditions I’ve had for decades, now snowballed into weeks… months… of new and scary things happening to my body. It was the start of multiple blood tests. So many blood draws that, my body couldn’t even deliver enough blood each and every time they stabbed me with a needle. It was many more ER visits while I still didn’t know what in God’s name was happening to me. The piling up of doctor bills from what still seems like endless visits to various specialists each week – cardiologist, rheumatologist, gastroenterologist, urologist, neurologist, neurosurgeon, opthamologist, blah blah blah. Some of which were to rule out damage. Other doctor visits are to explore what’s going on with me – especially neurologically.

At the time that I visited Great Rhythm Brewing Co. in Portsmouth New Hampshire, it never occurred to me that I’d be told in a few days that I had to stop drinking any alcohol while on medications to treat my symptoms.

Or while Derek and John were off visiting Vitamin Sea Brewing Co. in Weymouth, Massachusetts the next day, I had no idea that in 2 months my Rheumatologist would tell me that my bloodwork results came back positive for Sjogrens. That I’d also have to see a neurologist, get 4 different MRIs on my brain + spine and start taking nerve pain medication. A medication which doesn’t fully calm the burning and tingling in my arms, hands, back, hips, legs and feet. Man, I wish I had mustered enough energy to go along with Derek to sip that IPA! He said it was fantastic. Maybe the next Tree House of Massachusetts.

There were some days, many days… so many days, that I have burst into tears. Tears of depression. Tears of feeling sorry for myself. Tears from the pain and weird shit going on with me. Months of Derek being the steady and supportive rock that I needed. Months of family and close friends offering prayers, uplifting messages, checking in on me, driving me to doctors appointments, etc. Months of me not being able to keep my house in tip top shape – which I pride myself in. Those who know me well, know how independent I usually am and hate to need others to do things for me.

When the article on Forbes.com about our beercations posted up, I didn’t know that I’d be embarking on a journey that would change my ‘new normal.’ A lesson in patience would be an understatement. A reminder to not take friends and family for granted. An exercise in slowing down and appreciating the joys in life no matter how small.

But I’ve come a long way since July 19th. I’ve come to terms with my diagnosis. While I curse this stupid Sjogrens Syndrome, I know I can’t change it. I know I can’t wallow in self pity. I know I need to fight this every step of the way with God’s help. I’m a fighter. I never give up. Tell me I can’t do something and I’ll find a way to prove you wrong. Heck, I have apparently been living with this for decades. Maybe even my whole life as I reflect on childhood illnesses and medical mysteries that couldn’t be explained by doctors.

Yeah. I probably won’t be able to achieve the 3,500 unique beers total by the end of the year as planned. I know it’s not the end of the world. Seriously, I might be most upset that I might have to give up chocolate or dairy or wheat or grains or, or, or. Seriously! I have a ridiculous sweet tooth. One might say an addiction to sugar. Ha ha! Time will tell as more tests are done to determine what triggers my immune system.

I’m feeling a little lost now that I had to give up being on the Harrisburg Beer Week co-organizers team. I miss our planning meetings. I miss being a part of an initiative that is purely about doing something special for the local beer enthusiasts all while raising money for charity. I am however thankful that I had the opportunity of being one of the founders of a movement that will continue on and grow over the years.

I may not have been able to drink even 1 of these spectacular beers we brought home from Tree House thanks to Sjogrens. But I’m thankfully for the brewery experience I had. I’m thankful for all the crazy good beers I’ve had over the years. I jokingly tell people that I’m OK with never having another beer because I think I’ve had ALL the good beers. While secretly, I hope some day my auto immune disease goes into remission. That the functional medicine practice I’m about to see to complement my traditional medicine treatment will allow me to have a beer here and there throughout the years. But for now, I’m focused on getting well – beer or no beer.