I met with a neurologist at Penn Medicine this morning, he is an expert in the field of myasthenia gravis. I don’t know what I was hoping for…a crystal ball, a genie in a bottle? I went into the appointment looking for some hope.
Here’s the rundown -
1. I have this rare autoimmune disorder now.
2. It’s manifesting itself as weakness in my eyes (ocular myasthenia) so I have double vision. Wearing an eye patch is my only way to see straight.
3. The prednisone should help to clear it up, in 95% of cases it does…but it’s still not working. There’s no way to know how much of it or how long it’ll take, it’s trial and error. I could be on this for life…or moved to other meds in the future.
4. General myasthenia manifests itself in several other ways - weakened muscles (face, neck, arms, legs), an inability to swallow or speak, or respiratory distress. I don’t have this yet and if I do, it’s minor, maybe just in my neck and arms.
5. I need to move forward with the thymectomy (surgery to remove my thymus) because it’ll give me better outcomes…over the next 5-10 years. That’s scheduled for June.
6. The next couple of years are going to be my biggest health challenge, trying to relieve the symptoms with medications, and trying to get this in remission.
That last one was the hardest one to hear. No cure (still holding out hope the surgery will make that happen). Just trial and error and trying to create a stable environment with no flare ups.
I was looking back through my blog posts before February 11th and I started to cry. I couldn’t hold back the tears, because there I was, completely unaware of what was coming my way…just like last June, before I read those words, breast cancer. I was already dealing with stuff and this came out of nowhere. And now my whole life just feels turned upside down again…at least with breast cancer I found a rockstar team that buckled down and laid out a game plan and it all made sense and I just had to walk the path and do the work. But this…this is nebulous. It’s rare. There are no straight answers. There’s no timeline. I have to just keep slogging along, with one eye, with little data, with little hope. To be told that the next couple of years will be challenging just hit me in the gut so hard…because I’m tired. I’m tired of not knowing what’s happening to me. What about work? What about driving? There are no fancy pink ribbons for myasthenia, no special 5K runs or local support groups. I’m isolated and alone with this ridiculous challenge, and it makes me mad and sad at the same time.
I have so much to live for…this is not an end of the road story. This is a road under serious long term construction story, like I95 just north of Philly, a never-ending onslaught of “Men at Work” except in this case, woman at work, trying to piece her life back together, one day at a time, one minute at a time.
Despite all of this news, I fulfilled a bucket list wish today and went to Longwood Gardens. It was hot and tiring, but so wonderful to be with my family surrounded by some of the most beautiful plants and flowers in the world. I took more pictures than I should have, but I was in awe of the beauty around me. Life is beautiful, even the prickly stuff, the not so pretty stuff. I’m getting there…hang in there with me, please.
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