It’s taken me almost two weeks to write this update. In part because I needed some time to process what happened, and also because I’m still trying to figure out how to meet the day-to-day needs of my family with the elephant in the room. The elephant is my health.
Ten minutes before I needed to leave, I found out the person who I thought was going to watch Evan was not coming. It was a work-in appointment because I’d had an uptick in attacks, and given the recent revelations about periodic paralysis I felt it was critical to see my neurologist as soon as possible. Unfortunately, it was during Evan’s nap time would most certainly cover his lunchtime too, so I was frantically gathering everything I could think of to keep a tired and hungry baby happy and quiet for an indeterminate amount of hours.
The night before, I’d printed out a list of about a dozen questions (with follow-ups). I’d posted them one by one on the Facebook group of the hypokalemic periodic paralysis network, so I’d be sure all my bases were covered. I felt as prepared as I could be. When the medical student came in first, I told him I needed to know everything from what the protocol should be during an attack to how to notify first responders and the hospital staff of my condition. (Common practices for treating unconscious patients can cause harm and exacerbate an attack of periodic paralysis.)
Once I got through the bullet points, the medical student started the exam. I quickly noticed that my right side was not performing as strong as my left. The medical student noticed too. It’s one of the first signs that full paralysis is imminent, and I knew I had 2-3 minutes. He panicked. I did too because I realized that in my haste to get out the door, my medication hadn’t gotten transferred from my purse to my diaper bag. (Potassium can help ward off an attack or decrease the intensity and duration of one.)
The poor medical student ran frantically in and out of the room, as I muddled out instructions to get potassium, magnesium, or even coconut water. (The pharmacy was in the building downstairs.) He came up empty-handed. I managed to dump some snacks in Evan’s bib and lay down on the exam table before I lost all my strength. By the time the nurse and the neurologist (finally!) came in, I was almost completely paralyzed and unable to speak. They both proceeded to treat me like I was unconscious, yelling my name and doing painful sternum rubs. After a minute, the neurologist cooly instructed the nurse to draw my blood and walked out.
The yelling scared Evan who started crying as a result. The staff decided to remove him from the room, and that’s when he became hysterical. I could hear him screaming “mama” as I lay there, helplessly enduring more yelling, sternum rubs and a blood draw that left my arm hanging off the bed. For 20 minutes, I could hear the neurologist chatting on the phone about another patient while Evan cried in the distance. I felt every measure of pain. I heard every word that was said. I just could not respond.
When my strength started to return, I was still too weak to call out, so I waited a few more minutes hoping someone would come back. You see, muscles aren’t just in your arms and legs. They also make your mouth move. So it’s very difficult to speak when you’re going into and coming out of an attack. To add insult to injury, losing your words is also part of it. So at the very moment you want to say, “This is paralysis! I’m not going unconscious!” You can’t string enough words together to make sense. You also can’t defend yourself to insensitivity and ineptitude.
To make a long story short, this neurologist has known me and my diagnosis for years. Making matters worse, he heads up the clinic for the local chapter of the Muscular Dystrophy Association. Yep. Periodic paralysis is a diagnosis under their umbrella. I found that out when I got the genetic test back. So if there’s any doctor in town that should know what to do, it’s him. It should’ve been the safest place for me at that time.
Given the circumstances, I think the tears in my eyes were justified. Unfortunately, the neurologist used them to say that being emotional caused the attack. That I should manage my stress better and stop reading so much on the internet. Mind you, the information I was getting was only from mainline professional organizations dedicated to this disease; I just went deeper than Wikipedia. In vain I tried to discuss the questions I’d prepared with the doctor. I was frequently interrupted and spoken to in a condescending way.
I felt immense relief when Todd finally came in holding our now content baby with his tear-stained face. Not knowing what had preceded his arrival, Todd finished out the conversation, as I’d given up getting any answers. I played nice and tried not to make eye contact with anyone in the office as I was being wheeled out.
I was humiliated. I was angry. And I decided I was not going to play the role of a helpless victim any more. Later that evening, a brief update about the appointment posted to the thousands of people across the world who suffer from this disease or know somebody who does. One of them is on the board of the Periodic Paralysis Association whose mission it has become to not let something like this ever happen to anyone else.
In meantime, no more hiding. I used to give Ella a screen and put Evan in the closest safe and confined place until an attack passed. Now we need a plan, and it’s up to us to get one. One of the first steps is a visit to a neurologist in Philadelphia who specializes in periodic paralysis. Dr. Lewis sees more than 60 patients with this diagnosis, and I cannot wait.
Preparing for the 2-3 hour appointment is daunting. Dr. Lewis likes for his patients to bring all their medical records to go over together in person. Whew. If I’m being honest, I don’t know how I’m going to do it. I need to make a medical bracelet, a necklace, a lanyard and tags for my seatbelt and purse. I need a binder with the emergency and anesthesia protocols and those protocols have to be scanned into the hospital record system. Oh, and I desperately need a service dog.
I don’t have time to do any of those things, and I don’t have time not to. It’s my elephant in the room. Every day I wish it would go away. It’s not going to, and I’m determined to find a way to make peace with it. I can only do my best, and that’ll have to be good enough.
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