Have you ever had a night where you’re sitting and reflecting at the day, and think ‘I wasn’t expecting THAT in my plans earlier’. 

As I’ve been noting before, I am awaiting insurance to finish their hoop jumping and approve my Rituxan infusion, the current key to pushing my dermatomyositis closer to remission. It will happen, there are plenty of safety nets, but in the meantime I’m at the mercy of the phone call. In the meantime, a brutal combination of myositis flare and infections has left me in a daze of pain, weakness and frustration. I have been determined to maintain the lifestyle that I can. Go to rehab when possible, get to my desk and do some classwork, run a couple of errands a day to stay active. On Saturday I was able to get a shot of Solumedrol, a boost to the already high dose of corticosteroids holding the last month together. I felt ok for the rest of the afternoon.  The other night however (Monday), things came to a screeching halt. 

In a nutshell, my body just sort of gave out. My blood pressure spiked to 171/108, noted by my doctors to be the result of stress due to pain. My breathing became more shallow and left me immobile for a time because I couldn’t expand air. The weakness in my legs, arms and shoulders nearly had me in tears. April did an admirable job of helping me get calm enough to sleep, with plans to head back to my primary doc on Tuesday.

A series of things happened in my couple of hours there, but it can be summed up as such:

1. There was concern about my response to muscle resistance testing, issues with vision, the accelerated pace of the weakness/pain from the flare, diminished sounds when breathing and sustained higher blood pressure. 
2. It was decided to try another dose of solumedrol, but it actually wasn’t available. The decision was made not to try another formulation due to the lack of margin of error on how I’m feeling…not knowing how I would respond to an untried medication. 
3. I needed to contact the on-call specialist from my Rheumatological team at KU Med. This doctor is the one who handles the higher-medicine ordering such as the infusions. The on-call doctor and my regular rheumy decided that the best course of action would be to go to Kansas City as a direct admit to KU Medical Center. 

 

The problem is that at this point, even if I were to get the infusion, the initial dosage is four times over four weeks. The medicine may not even start working for around a month, and the flare is accelerating too quickly to wait that long. Something had to inevitably happen in the meantime in order to buy more time. Being asked to come here took a pretty big emotional toll on me. It’s tough to not see those particular moments as a step backwards, or a roadblock. I am thankful for having dermatomyositis for one thing though… it has augmented my ability to refocus whatever energy I have to make a run toward success. Everything happens for a reason. God has a plan for me. Frustration becomes the next challenge, and I will defeat it as I have the others.

 

As of right now the goal is to pinpoint the infections that I have been getting, as evidenced by my lab results. The goal is to get a better and more acute treatment plan for the infections in order to negate their effect on my body’s stress level. It’ll be much easier to reverse the myositis flare without the added complication of my body trying to fight everything. Next will be to look at ways to stopgap the myositis flare, possibly with an IVIG infusion and definitely with more solumedrol IV in order to get the breathing room needed for Rituxan to do is work. Meanwhile, I am going through scans and testings to rule out other possible problems and stressors, as well as adjusting medicine for pain, energy, blood pressure, etc. in a safe environment. I will be here at least through the weekend. Being here isn’t ideal, but it is smart. I have a fantastic support system and I’m handling it ok. The staff has been fun and the food isn’t terrible. Most importantly, they have CBS (Rock Chalk). 

 

I sat by the window with April earlier and told her about how myositis has changed my life. It took a lesson I was already in the process of learning in humility and perspective, and gave me practical experience. We watched the rain and I explained that I was glad I’m here. I think that took her by surprise. The truth is, I believe that life is not about what you pray to happen, it is about praying to make the most of what does happen.

If my insurance company hadn’t decided to delay treatment, then what may have been an inevitable hospital visit would have been complicated because I would have needed more help in the midst of a four week specialized treatment. This may have eliminated some treatment options during. If my body had not crashed so badly on Monday, then I wouldn’t have sought help on Tuesday, instead waiting for a call back on the infusion. Once at my primary, if they had carried the shot then I would not have made the call to my rheumy team at KU Med. Without talking to them, I might not have realized (sooner) that my situation was already passing a threshold of concern warranting immediate treatment. 

Whether you believe in God, signs, or otherwise, I am sitting here as a result of events..and I am in the right place, even if I don’t understand why yet. I see it is a gift of time for getting things done for school, and catch up on some readings. I believe that God is telling me to slow down, be safe and reload my body with the help it needs. While I’m here, I feel compelled to not complain to the staff and visitors that I see, because they are in their own seasons of life and they need their own inspiration. They don’t know my pain and struggles, and I don’t know theirs. But I know that there’s every chance that my story or smile can be the final key they need to defeat best their trials. 

Since 2013, my dermatomyositis has caused a great deal of fear and questioning for my family and myself. Not knowing what my life has in store has forced me to make the most of what we all take for granted sometimes. Not having the resources and strength to complete classes without deep planning has made me a better, more determined student. Learning about myself and how to cope with conflict and unexpected problems will make me a better husband. Having this story will allow me to show others that it can be done, whatever you choose for your story to be. 

Myositis has done this to me, and I am grateful.