The last ten or so days before the middle of this week were pretty eventful and successful. I was able to not only make it to rehab several times, but also to do well there..and I left feeling fantastic. My energy was sky high and I felt more energized than I had in months.

Then came Wednesday, the 10th of February. The night before I was feeling very lethargic but in an alarming way. I later explained to my primary doctor that it felt less like being ‘sleepy’ or tired and more like trying to hold on to consciousness. But, weird things have happened in the past few years so I busied my mind with computer work and waited until it subsided enough to go to bed.

On Wednesday morning I was determined to make it to class. Although the campus and my professors have been absolutely fantastic throughout this ordeal, nothing would mean more to me than being able to walk down the hallway, sit in a desk and listen to a history lecture. I also feel that it would be a show of good faith on my part, that my effort is there and that I don’t believe this disease will hold me down forever.

Anyways, that morning I woke up feeling much like the night before. I chalked it up to the usual morning lag (mornings are particularly bad for me) and willed myself to my car. I parked next to the academic building and made my way to the office on that floor where I had left a knee scooter for use. I ended up using so much energy that I waited for nearly half an hour before continuing down the hall. I was already halfway there and was still feeling pretty determined, probably stupidly so at this point, but eventually I scooted on down the hall. Once I made it to the classroom door I spent another considerable amount of time sitting on the bench just outside. As my muscles felt damaged and my lungs burned for air I tried to relax and remember the instructions for structured breathing. I listened to the lecture just beyond the door, something about wall defense in the ancient Levant. I completely lost track of time. When I finally decided to step inside, I looked at my clock and realized that there was only four minutes left to go. I waved from the window, spoke with my professor briefly and gave my best look of confidence and determination possible for a guy whose heart rate was out of control and panic was starting to take hold.

I made my way back down the hallway, to my car and drove to the nearby pharmacy where I had some medicines ready to go. I ended up sitting in that parking lot for about 45 minutes trying to get the strength needed to walk again. Again it was surreal as I watched the people going by and wondered what their day is like. What challenges, if any, are they facing with their day as they head in either direction? How many classes have they attended? How long will they be able to trust their bodies at the gym? I lost track of time and was startled to see again how many minutes had flown. The feelings of nausea, weakness, pain, brain fog etc. that had started the night before were becoming more intense. I stepped inside for the medicine and took my leave.

 

Here is where I did something that my fiance absolutely despises. For anyone living with a chronic disorder, or some sort of disability, that has changed their flow of life will know this experience and thought process when I talk about it. Although I was clearly not feeling well and likely putting my health in danger, this was a day that I determined I was going to be a normal human being and do normal human being things. I was going to get up, go to class, pick up my medicine…and then go to the bank to talk about something trivial in retrospect. I indeed went to the bank, not because of stubbornness but because it involved something that was on my checklist for the day. On this 10th of February, I was not just going to be a sick guy at home. Alas, that’s exactly where I ended up.

 

After spending yet more time in yet another parking lot I decided to go by my primary doctor’s office and do a walk-in appointment. Something was very clearly wrong and I was getting the same feeling of fighting for consciousness, not simply to stay awake. If I was going to pass out or fall asleep anywhere, might as well be in the company of doctors right? I ended up meeting with a great nurse practitioner who was in contact with my regular doctor. I’m not sure how much time passed there because I fell asleep the second the nurse left the room, and again when the NP went to research something.

 

Sometimes in life we have moments where things seem resolved, but creep back up to bite you or affect you some time later. This was one of those times it turned out, according to the doctors. I noted on my blog just a couple of weeks ago that I had visited the Emergency Room in response to a coming infection I felt in my chest. I was scanned and checked out with bronchitis as the diagnosis. This was fairly routine, as with my immunity compromised I get medicated for even basic happenings just for safety. The treatment this time (again routine) was to take a ‘stress dose’ of a steroid called Prednisone. I take this medication every day anyways as a regular part of my treatment at 10mg currently. But due to the nature of my disorder, and the multifaceted properties of what Prednisone can treat, the dosing can fluctuate quickly and often. This time I was to start taking 60mg a day and then taper off back down to 10mg. In fact, the next day after taking 60mg I felt superb. Fast forward to Wednesday…and being back on 10…

It turns out that the difference between other stress doses in the past and this one is that I now only have one adrenal gland. As those who have read before know, I had surgery to remove one in October 2015. These glands are responsible for producing the cortisone that Prednisone replicates. When taking Prednisone, as with other medications, you run the risk of your body no longer producing that product on its own, instead relying on the synthetic version. The adrenal glands are also responsible for adrenaline and some other things. Without my second adrenal gland, the thought is that when I jumped back up to 60mg of Prednisone, I tapered too fast for my one remaining gland to keep up. Basically, the medicine gave it a big boost of help, and then took it away really quickly leaving me in a crash. This amplified my weakness, my pain, breathing issues, and my ability to stay awake. Unfortunately, I also for the first time in over a year have developed some symmetrical rash on my legs…an early sign of a major flare in Dermatomyositis. This, my doctor believes, was caused by the rapid change in the dosage of the medication.

 

So why was it allowed to happen? The short answer is that everyone is different, and there was really no legitimate way to know without knowing. The plan now has me back on 60mg of Prednisone for the time being and then taper much slower. Although it has been 2-3 days already, the recovery has been slow and my energy has lagged a bit. Each time I wake up though I am feeling a bit better, and looking forward to the weekend. Maybe sitting out on the patio and getting some fresh air. Above all I need to make sure I’m awake to see my Jayhawks take on the Oklahoma Sooners…part 2. I’ll watch it with my father who was able to help me get to the first matchup of these two teams live this year. We’ll be at home this time but the company, and hopefully the game, will be no less sweet.

To everyone out there suffering from DM or other chronic diseases, always try to remember changes to your regular routine, even if they seem regular and not out of the ordinary. The combination of a regular medicine change, a surgery from several months ago, a poorly timed bronchitis diagnosis and a stubborn determination to be normal for a day did me in this week. For every action there is a reaction…somewhere down the line. We learn from them and use those experiences to help us battle these diseases.

 

Have a great weekend, and Rock Chalk!

 

TJ Henderson