Onward and ...Downward!
Today I had my cardiology follow-up, and it's actually good news. All of the various tests of my heart have come back normal, so the cardiologist feels reassured that things there are fine. He believes the finding on my MRI may have been a shadow, and nothing to be concerned with. I will follow up with him in one year. In the meantime, we discussed the high heart rates and the event in ER. At this point, he doesn't feel it's connected to the autoimmune issues I've been having. He increased my calcium channel blocker dose, and recommended some dietary changes to address it. He also ordered a magnesium level, just to make sure everything is in line. Overall, this was far better news than I could have anticipated! I can't believe we have two out of three major issues laid to rest.
One remains, and it's still a doozy. Tomorrow I am scheduled for my EMG, and then I will follow up with the rheumatologist next week. I don't have any new lab or test results as of right now, but I do have some new symptoms. I've been struggling off and on with a sensation of a lump in my throat, and have choked from time to time. Those two symptoms have increased over the past couple of weeks, so I emailed my doctor to have it on her radar when I follow up next week. She wrote back right away and has ordered a swallow study, which didn't surprise me. If I am having trouble swallowing, there are a number of things that can help. The important thing in the meantime is to make sure I am not aspirating when I eat and drink. This opens a new can of worms in some ways, but at least we're not dealing with a new, completely unrelated problem. Swallowing issues seem to occur in about 1/3 of patients with myositis, so this was already on our radar.
In the meantime, I am taking some time off of work. As the symptoms continue to progress and I have more and more appointments and tests, it's become increasingly difficult to keep up with working full-time. Stress can also exacerbate a lot of the symptoms I'm having, so a little time away to rest and not manage work stress can only help. It also allows me some time in private to come to terms with all of this. So much has happened so quickly that I'm still kind of reeling. Micah has come home a few days to find me upset and saying something along the lines of, "I just need to not be OK for a little while. I just need to not have it all together and keep a smile on my face." This time off will allow me a little time to pull back and process, to have days when I'm not OK, and, hopefully, to come back rested and with a few more answers than I have currently. I think this will be a really helpful time for me.
All winter we've been looking forward to spring. It seems like some of our most difficult seasons often coincide with winter, and we always anticipate spring and a change in our circumstances. Almost always that's been the case--once the sun comes out, our metaphorical season also comes to life. This time feels a little different. We had some warm, sunny days this past week that felt like the promise of spring. I was excited to see it, but it brought a bit of an unexpected pang and a new layer of sadness. Those days, in the past, have been full of bike rides and hikes and hours spent in the garden. I celebrate the first bits of sunshine by being outside and active. I realized with the glimpses of sunshine this past week that this spring will be a little different. I don't have the stamina for long hikes and bike rides, and my time in the garden will have to be paced and planned carefully. Today I made a quick stop at the grocery store for some essentials, something I haven't done alone in weeks. As it turns out, I shouldn't have done it alone today, either. By the time I checked out, I was struggling to push the cart. Loading groceries into my trunk was a whole-body effort. I climbed into the car and sat for several minutes before I even attempted to drive home, and the groceries are still sitting in my trunk now. There will be opportunity to do the things I love, and treatment and therapy should improve my ability to function. But in the meantime--in this time--spring is going to mean prioritizing the things I love most, doing as many of them as I can in small ways, and letting a lot of things I love go. It's a new kind of bittersweet feeling about spring that I didn't anticipate.
All in all, I'm very grateful for the possibilities that are off the table, as each one helps us hone in on the things that are left unanswered. We will find our new normal, and eventually it will feel very familiar. Until then, we're learning all we can and navigating a strange new life that sometimes doesn't feel very much like our own...
One remains, and it's still a doozy. Tomorrow I am scheduled for my EMG, and then I will follow up with the rheumatologist next week. I don't have any new lab or test results as of right now, but I do have some new symptoms. I've been struggling off and on with a sensation of a lump in my throat, and have choked from time to time. Those two symptoms have increased over the past couple of weeks, so I emailed my doctor to have it on her radar when I follow up next week. She wrote back right away and has ordered a swallow study, which didn't surprise me. If I am having trouble swallowing, there are a number of things that can help. The important thing in the meantime is to make sure I am not aspirating when I eat and drink. This opens a new can of worms in some ways, but at least we're not dealing with a new, completely unrelated problem. Swallowing issues seem to occur in about 1/3 of patients with myositis, so this was already on our radar.
In the meantime, I am taking some time off of work. As the symptoms continue to progress and I have more and more appointments and tests, it's become increasingly difficult to keep up with working full-time. Stress can also exacerbate a lot of the symptoms I'm having, so a little time away to rest and not manage work stress can only help. It also allows me some time in private to come to terms with all of this. So much has happened so quickly that I'm still kind of reeling. Micah has come home a few days to find me upset and saying something along the lines of, "I just need to not be OK for a little while. I just need to not have it all together and keep a smile on my face." This time off will allow me a little time to pull back and process, to have days when I'm not OK, and, hopefully, to come back rested and with a few more answers than I have currently. I think this will be a really helpful time for me.
All winter we've been looking forward to spring. It seems like some of our most difficult seasons often coincide with winter, and we always anticipate spring and a change in our circumstances. Almost always that's been the case--once the sun comes out, our metaphorical season also comes to life. This time feels a little different. We had some warm, sunny days this past week that felt like the promise of spring. I was excited to see it, but it brought a bit of an unexpected pang and a new layer of sadness. Those days, in the past, have been full of bike rides and hikes and hours spent in the garden. I celebrate the first bits of sunshine by being outside and active. I realized with the glimpses of sunshine this past week that this spring will be a little different. I don't have the stamina for long hikes and bike rides, and my time in the garden will have to be paced and planned carefully. Today I made a quick stop at the grocery store for some essentials, something I haven't done alone in weeks. As it turns out, I shouldn't have done it alone today, either. By the time I checked out, I was struggling to push the cart. Loading groceries into my trunk was a whole-body effort. I climbed into the car and sat for several minutes before I even attempted to drive home, and the groceries are still sitting in my trunk now. There will be opportunity to do the things I love, and treatment and therapy should improve my ability to function. But in the meantime--in this time--spring is going to mean prioritizing the things I love most, doing as many of them as I can in small ways, and letting a lot of things I love go. It's a new kind of bittersweet feeling about spring that I didn't anticipate.
All in all, I'm very grateful for the possibilities that are off the table, as each one helps us hone in on the things that are left unanswered. We will find our new normal, and eventually it will feel very familiar. Until then, we're learning all we can and navigating a strange new life that sometimes doesn't feel very much like our own...
