In December 2003, I got a new job at the Medical College of Wisconsin, my first full-time job in years. I’d been lucky to work a minor part time job (mostly on Saturday mornings) for a friend, and stay home with my kids the rest of the time. Then in the fall of 2003, my husband left his profession to start a new phase of life working for himself, making it necessary for me to pick up the responsibility for benefits and regular income. My youngest child of three started school that year, and having Dad at home to drop off and pick up from school made it much easier for me to leave that stay-at-home life behind.
That December also brought the horrible news that one of my nephews, then age 18, was diagnosed with leukemia, and not just any leukemia. He had a juvenile form that is dreadfully difficult for anyone over age 12 to overcome, and it was a “special,” mutated form that was resistant to many treatments. My life was rocked by this news, and I found myself emotionally and physically taxed by all the stressful events happening in my life. My GI function was all over the board. I was getting weaker by the day. I had a difficult time swallowing without choking (and as a singer, the vocal weakness became a source of constant irritation and frustration), and I had abdominal pain and nausea constantly.
The surgeon I worked for made a phone call for me and got me into the GI clinic with his choice of physician. They tested me for GERD and found nothing. But my GI doctor is a brilliant man who had once treated a patient with problems similar to mine, related to damage to his C6 nerve. This doctor saw my history, including the 2 bad car accidents I’d been in that had caused whiplash in the same place on my neck. He ordered an MRI of my cervical spine and, yep, you guessed it—they found C6 nerve damage. He immediately referred me to Dr. Safwan Jaradeh, who did an EMG, then a small-fiber EMG, and diagnosed me with myasthenia gravis in the fall of 2004. Blood work also showed very low B-12 levels, so I started on oral (sublingual) B-12 and Mestinon (pyridostigmine).
While both of these helped me, I still had periods of severe dizziness, and the abdominal pain and nausea came and went. I had a tilt table test done, which showed nothing—no POTS. I also started going to our SpineCare clinic for back and neck pain, mostly related to sitting in a horrible office chair all day long. While the PT and chiropractic care helped, the pain never completely went away, and my boss finally ordered a good chair for me. I still had pain but not nearly as much. I got on with my life. The muscle twitching and excessive foot, leg, hand, and facial muscle cramps started to ramp up, but were mostly bearable.
Dr. Jaradeh referred me to Dr. Alexandru Barboi, who was starting up a new specialty clinic for people “like me” with myasthenia. We had a wonderful first visit where we went over, in detail, the past few years of my life and what had led to my diagnosis. Then he asked questions about my childhood and adolescence, ordered a “re-do” of my tilt test, and then had a discussion with me about dysautonomia vs. myasthenia. The light went on! All those symptoms that seemed so completely unrelated suddenly coalesced into a “real” diagnosis—sort of. I know you all understand what I’m saying.
Soon after this, I got a new position in a different department, and it was a job I was very excited about. The job was wonderful, but the physician I worked for was a nightmare. I was sick daily—nausea, diarrhea, abdominal pain. I started losing weight (not entirely a bad thing, just the wrong way to do it). The stress was really getting to me. The fatigue became overwhelming, and Dr. Barboi prescribed Provigil, which is usually prescribed for people with narcolepsy. It’s helpful, and I can’t function if I miss a day of it. The weakness, lightheadedness, and abdominal pain continued, and I changed departments again, this time to a great situation. With the constant fear and stress engendered by the previous position gone, I expected to feel better. Not so. Despite the release from the worst of the stress, I still had abdominal pain, nausea, dizziness, and exhaustion.
However, I’ve learned a few things over the last year, in particular, that have sustained my good attitude about life in general. I’ve discovered that I’m one of the luckiest people with dysautonomia in the world because I have Dr. Barboi in my corner. I’m an employee where he is employed, so I have the distinct advantage of direct communication and easier access to my physician than most people. I have a husband who is patient with my roller coaster life, even though it often frustrates him, and he can’t really empathize. I have a manager who is kind and understanding when I have a bad day, and I work for a physician and a nurse practitioner who are trying to learn more about dysautonomia just so they better understand what I’m going through. I am able to work, play, and do yard work like most people (with more physical repercussions, but I can at least DO the things that are difficult for many with this condition). My kids see a mom who cooks and cleans, who takes them to the beach and out for frozen custard afterward, who throws the baseball around at the park, and who rides bikes with them sometimes.
There are days when it’s so hard to roll out of bed, get ready for work, make it through the day without making a major error that could affect a patient’s health, and go home to face making dinner, helping with homework, walking the dog, etc. But I can do those things, so I make myself do them because I’m afraid that if don’t, I would be doing less than I should be. I sometimes push myself too hard to be too perfect and to be too healthy. Sometimes it’s okay to just sit down and be sick, to huddle under a pile of blankets because I can’t get warm, or to cry or lash out at the limitations my body dishes out on a seemingly random basis.
Dysautonomia is different for everyone. I feel so bad for the people who can barely get out of bed or the recliner most days. I don’t have that limitation often. But I still understand the pain, the frustration, the weakness and the fog that envelopes us all on different levels at different times. My message to all of you is this: take it one day, one hour, at a time. Live in the moment now rather than waiting for a better one. Don’t waste time fighting this because you’re just fighting yourself. It is who you are, so embrace it, get past it, and get the better of it. Live for today, and live well.