Living With An Autoimmune Disease: 20 Years and Counting – Part 1

The photo below was taken on Valentine’s Day 1997, a few months shy of my 31st birthday. Little did I know, 20 years later I would be sharing a two-decade long battle of feeling tired as hell with doctors telling me “your labs are in the ‘normal’ range”, struggling to get through the day, not sleeping at night and overall just feeling like shit. I will also put it out there, I am not complaining, as I know my story is part of my message to share with the hopes of helping someone else NOT have to go through what I’ve been through. It was serendipitous (or was it) this photo was in my Facebook memories today. All week I planned to write my uphill battle with not having a thyroid and how I might FINALLY have turned the corner to optimum health, and this little gem showed up.

The 2007 UP200 sled dog race...where my autoimmune issues began.

#TBT: I’m wearing the Eagle dog food jacket talking to a fellow musher before the start of the 1997 UP200 sled dog race. That winter I had lost more weight than I normally did in the winter but thought nothing of it. I totally ignored the other signs of my health; racing heart, shaking hands and more and thought being able to wear a size 3 and have them loose while weighing 115 lbs. was pretty awesome. The baggy clothes don’t show it, but I looked anorexic. Little did I know, four days after this photo was taken I’d be in the emergency room with sky-high blood pressure and a resting heart rate of 150. After numerous tests in the ER, I was going into congestive heart failure due to an untreated “extremely dangerous hyperactive thyroid” due to #GravesDisease. Thankfully the doctors were able to get my heart back to “normal” without damage and killed my thyroid before it killed me. Don’t ignore your body like I did, you may not be so lucky.

Symptoms of Grave’s Disease – An Autoimmune Disease

There is (kind of) a funny story of how I was finally diagnosed with Grave’s Disease. I am planning on this being a 2 or 3 part series, as I want to share as much as possible, in the hopes someone who might be suffering, recognizes something to get them to get the help they need. As mentioned in the Facebook posting above, for months leading up to the race, I was having symptoms of an over-active thyroid that I ignored. The first noticeable sign; weight loss. At the time my usual weight was somewhere between 130-135 lbs. in the summer, and 125 in the winter. As mushing season rolled around, both Mark and I would drop 10-15 lbs. during the busy season, and gain it back in the summer when we were less active (opposite of the rest of the world). The fall of 1996, I started to notice my pants getting looser, like normal, but I continued  dropping weight and hit my final low of 112 lbs. For me, that is EXTREMELY skinny, anorexic actually. At the time, I thought it was great! For the first time in my life I was under a size 7! That’s not great, as I was to the point where I was fitting into a size 3 Levis and needed a belt to keep them up!


A sign of thyroid-autoimmune issues: being tired all the time

Another sign of my thyroid being so far out of whack was being tired ALL the time. While this is more common with a hypo-active (under active) thyroid, my HYPER-active thyroid was running at top speed that would have me going, going, going for a while and then crashing, much like a race car redlining and having the engine blow up. My MO for those days; wake up, have a cup of coffee, go out and do dog chores, come in for a 2 hour nap. Get up around noon, eat something and maybe do some cleaning around the house, and then take another nap before getting ready to head into work at 4:00 pm as a waitress. Days off, I’d sometimes take as many as three or four 2-hour naps.

Jitters, Racing Heart and Night Sweats

Another symptom I totally ignored was having heart palpations and what my doctor called “hand tremors”. At the time I was a pack-a-day smoker, drinking LOTS of coffee and Diet Coke a day and brushed off these symptoms with having too much caffeine and nicotine. I should have paid closer attention when customers at the restaurant commented on my shakiness when I put their drink on the table and I started to leave a little room at the top of a glass when I mixed a drink, just in case. Yikes!

Night Sweats, another symptom of the autoimmune disease Graves Disease.

Another symptom I totally ignored was night sweats. I am usually a person who loves to be bundled up like a burrito under the covers (even in the summer when possible) and most nights that winter found me kicking off the covers and waking up with a sweat soaked shirt. More than once I would get up in the middle of the night, change my shirt, and lay a towel on the mattress before laying back down. One advantage to “running hot”; I didn’t need as many layers to keep me warm while running dogs. Starting sometime in the fall, I clearly remember out running dogs with Mark and when he stopped to put on a jacket asking me “aren’t you getting cold?”. Most times, my answer was no and more than once, I added an extra layer so he wouldn’t keep asking me! If I knew then what I know now, these three symptoms should have set off alarms for me to get them checked!

A Sled Dog Race That Could Have Been My Last

Sooooo…all these symptoms finally bring me back to the UP200 race. The start of this race is pretty cool. It starts on Friday night, 7:00 pm on Main Street in downtown Marquette, Michigan. Teams leave the starting chute, run a few blocks down the street, before going down a steep downhill, make a 90+ degree turn at the bottom and travel alongside the busy M-28 Highway on the way to the first checkpoint in Harvey. Drivers can choose to have a tandem sled set up for this portion of the race, for safety in controlling a hyped-up team. I was all for it! After leaving the start and NOT biffing it on the corner at the bottom of the hill downtown (teams are notorious for their incredible wipeouts there!), I tipped my sled numerous times on the way to Harvey, just 20 miles into the race. Mark even asked me “what the hell is going on” more than once, and I shrugged it off to nerves as this was the longest race I had attempted up to that point.

The Start of the UP200 Sled Dog Race in downtown Marquette, Michigan

After I dropped Mark at the first checkpoint, I headed down the trail fairly uneventfully even though I was having a hard time controlling the incredibly strong team. Thankfully the Upper Peninsula of Michigan is notorious for the buckets of snow that fall in the winter, creating soft, slow trails. Not only was I so light, but another symptom of a hyperactive thyroid is muscle weakness. When I reached the Escanaba checkpoint, keeping the dogs held back to have the handlers lead the team to the truck was a challenge. I had both feet on my brake, pushing down with all the strength I had and in an instant I was face-first on my sled. I heard Mark yell “what the hell just happened?”. I had the wind knocked out of me as my stomach smashed against the sled handlebar, and as soon as I looked up, I saw Mark and the other handlers on the ground. In pushing on the brake bar so hard, the claws caught a curb under the snow! We were lucky none of the dogs or the handlers were hurt. My wooden sled, was another story. Thankfully the builder was at the race as three of the stations cracked! (A dog team is incredible strong!). Chris jerry-rigged the sled so it would hold up for the rest of the race and surprisingly when I woke up from my nap, I wasn’t as sore as I thought I would be. My stomach hurt a little, but thankfully I didn’t crack any ribs! Late on a sunny Saturday afternoon, I headed out on to Little Bay De Noc on Lake Michigan with a full dog team.


Living with Autoimmune disease

I will end here with Part I. Next week in Part II I will share how resting on a frozen river saved my life.

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