I haven't written here in awhile. I've been quite busy. I've been teaching my Flamenco Dance classes at the arts high school, performing in the occasional gig, meeting with a lot of engaged couples and performing weddings in my role as an Interfaith minister, visiting a hospice patient in my role as a volunteer, and holding down a part-time job in retail. My schedule is such that I only take one day off a week and often, I have to schedule a medical appointment or hospice visit on that day because it's really hard for me to do more than one thing a day, although I have so much going on that I do often end up doing so. I feel like I'm borrowing from my future "spoons", or energy reserves, constantly.
I'm going to come right down to it, although I'm enjoying a lot of what I'm doing, I'm tired. I'm tired from all of this activity with little rest. However, I've also been feeling this intense fatigue--not my usual Lupus fatigue, but a fatigue in my chest. That's the way I describe it. Particularly when I'm climbing stairs, going up a hill, or dancing. It's this feeling like I need to catch my breath, but it's not in my lungs. It's also accompanied by intense leg pain.
So, as you can imagine, I've been doing the whole doctor's visit thing. I went to my primary care doctor and told him these things. He thought it was my lungs (I was pretty sure it wasn't) so he sent me to get a CT scan of my chest. When I asked if I should go back to the cardiologist, he asked, "why?". Why? This is what gets me about Lupus. If a doctor isn't a Lupus expert they don't know basic things that every Lupus patient knows. Why should I go to a cardiologist? Because women my age with Lupus have a 50 times greater chance of having a heart attack than the general population.
So, I went to get the CT scan to rule out the lungs (Lupus can affect the lungs too so it is worth checking). As I expected, it showed nothing was wrong with my lungs. I went to my rheumatologist and she suggested seeing my cardiologist, so I went back to her to get a stress test done. This is where they strap all those little sensors on you and have you walk on a treadmill. She put me on an incline and stopped me at 4 minutes. I guess my heart rate shot up from a resting heart rate 87 to 155 during that time and then it didn't go back down to the resting in the time it should have. She explained to me that my resting heart rate is in the high normal range, but that it is actually too high for someone who is a professional dancer. It should be at 65. She concluded that my heart was fatigued, that I'm pushing it too hard because I push past the point where I should be stopping, and that I need to not be dancing at that level. She actually said, "You're going to wear your heart out".
But I teach classes. To students who have a big show coming up in April. Plus dancing is my life. It makes my soul happy and isn't that a good thing for your health? As you can imagine, I was not accepting reduced dancing as a final answer. I talked to my brother, who is a DPT (Doctor of Physical Therapy). He told me I could have a vascular issue and he told me that my heart just needs reconditioning by adding some form of aerobic exercise that isn't dance, that my heart is too acclimated to dancing.
After this, on my doctor's referral, I went to a lung doctor who ran some breathing tests on me. My lungs were fine. However, I told the tech about the heart rate thing, so he put a heart monitor on me. Apparently my heart rate shot up from a simple breathing exercise. He was convinced it was the heart. I brought that up to the lung doctor, as well as my brother's explanation, and he acted like many doctors in my experience do--with incredulity, like he's the doctor and he knows best and everything else sounds ludicrous. I thanked him for his services and scheduled a physical therapy appointment and prayed that I would find someone who believed me.
The DPT at the physical therapy office basically told me the same thing my brother did. So she put me on a treadmill walking regime. She also noticed some issues due to my Fibromyalgia, so she had me work with the Physical Therapy Assistant (PTA) to work on some strength training.
One day, I was messing around on You Tube, and I found the video for the most recent Lupus Patient Conference, put on by Lupus LA. I hadn't been able to go on account of work, so I was excited to see it had been posted. I was even more excited when I realized that one of the speakers was Dr. Jay Schapira, a cardiologist whose name I recognized because I was referred to him by my rheumatologist.
Unfortunately, when I was first referred to him, his office didn't take my insurance. This was almost three years ago, so I decided to try my luck and see if his policy had changed. Sure enough, when I looked up his name on my insurance plan, there he was. So I called to make the appointment. Their office didn't know that they were now taking my insurance. They had to double-check! The insurance system in this country is ridiculous, but that is talk for another day.
When I went to see Dr. Schapira, it was like first finding my rheumatologist all over again. He and the Nurse Practitioner who met with me both listened to all of my symptoms and agreed that they were cardiovascular. They explained to me that Lupus patients present microvascular disease (meaning it affects the small arteries) as opposed to macrovascular disease (affecting the large arteries) and that other cardiologists or doctors who aren't familiar with Lupus are looking for macrovascular disease and don't know to look for the other. They told me that they suspect that my issue is microvascular. By the way, all of this is explained in his presentation in the Lupus Patient Conference video I linked to above. His talk begins at 1:36.
Dr. Schapira proceeded to tell me that the only way to confirm microvascular disease is to perform a cardiac MRI. He told me that it will take awhile to get that scheduled because he anticipates that the insurance company will fight against covering it because insurance companies also don't quite understand Lupus. Sigh, and so I wait. In the meantime, he put a Holter monitor on me for 24 hours to see how my heart reacted to things, including teaching my dance class. I still haven't heard back about those results. And so, I wait.
In the meantime, I've been steadily plugging away at my treadmill walking. I have gone from walking for 15 minutes at 3.4 mph with no incline to walking for 30 minutes at 3.8 mph with a 2% incline. It sounds so minimal, but I'm happy and grateful for this little bit of progress. I still get really tired from stair-climbing and I have moments where I have to catch my breath when I'm teaching, but I am feeling better overall. Oh, and by the way, Dr. Schapira told me the dancing was a good thing.
This whole process has made me reflect on my health challenges and on the challenges my fellow Lupies face. There is a term that is popular in the Lupus community. We call ourselves Lupus Warriors. A lot of people talk about being a Lupus warrior in terms of fighting against the Lupus. That's valid, but that's not the way I think of it. I think of it on a more spiritual level--we are facing the challenges that life throws at us, and moving forward bravely, facing our fears, surviving different battles and skirmishes, and continuing to live the best life we can live.
So to all my fellow Lupus Warriors, keep up the good fight. I'm sending you all lots of love. I'll keep you all posted on my heart's progress.
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I'm going to come right down to it, although I'm enjoying a lot of what I'm doing, I'm tired. I'm tired from all of this activity with little rest. However, I've also been feeling this intense fatigue--not my usual Lupus fatigue, but a fatigue in my chest. That's the way I describe it. Particularly when I'm climbing stairs, going up a hill, or dancing. It's this feeling like I need to catch my breath, but it's not in my lungs. It's also accompanied by intense leg pain.
So, as you can imagine, I've been doing the whole doctor's visit thing. I went to my primary care doctor and told him these things. He thought it was my lungs (I was pretty sure it wasn't) so he sent me to get a CT scan of my chest. When I asked if I should go back to the cardiologist, he asked, "why?". Why? This is what gets me about Lupus. If a doctor isn't a Lupus expert they don't know basic things that every Lupus patient knows. Why should I go to a cardiologist? Because women my age with Lupus have a 50 times greater chance of having a heart attack than the general population.
So, I went to get the CT scan to rule out the lungs (Lupus can affect the lungs too so it is worth checking). As I expected, it showed nothing was wrong with my lungs. I went to my rheumatologist and she suggested seeing my cardiologist, so I went back to her to get a stress test done. This is where they strap all those little sensors on you and have you walk on a treadmill. She put me on an incline and stopped me at 4 minutes. I guess my heart rate shot up from a resting heart rate 87 to 155 during that time and then it didn't go back down to the resting in the time it should have. She explained to me that my resting heart rate is in the high normal range, but that it is actually too high for someone who is a professional dancer. It should be at 65. She concluded that my heart was fatigued, that I'm pushing it too hard because I push past the point where I should be stopping, and that I need to not be dancing at that level. She actually said, "You're going to wear your heart out".
But I teach classes. To students who have a big show coming up in April. Plus dancing is my life. It makes my soul happy and isn't that a good thing for your health? As you can imagine, I was not accepting reduced dancing as a final answer. I talked to my brother, who is a DPT (Doctor of Physical Therapy). He told me I could have a vascular issue and he told me that my heart just needs reconditioning by adding some form of aerobic exercise that isn't dance, that my heart is too acclimated to dancing.
After this, on my doctor's referral, I went to a lung doctor who ran some breathing tests on me. My lungs were fine. However, I told the tech about the heart rate thing, so he put a heart monitor on me. Apparently my heart rate shot up from a simple breathing exercise. He was convinced it was the heart. I brought that up to the lung doctor, as well as my brother's explanation, and he acted like many doctors in my experience do--with incredulity, like he's the doctor and he knows best and everything else sounds ludicrous. I thanked him for his services and scheduled a physical therapy appointment and prayed that I would find someone who believed me.
The DPT at the physical therapy office basically told me the same thing my brother did. So she put me on a treadmill walking regime. She also noticed some issues due to my Fibromyalgia, so she had me work with the Physical Therapy Assistant (PTA) to work on some strength training.
One day, I was messing around on You Tube, and I found the video for the most recent Lupus Patient Conference, put on by Lupus LA. I hadn't been able to go on account of work, so I was excited to see it had been posted. I was even more excited when I realized that one of the speakers was Dr. Jay Schapira, a cardiologist whose name I recognized because I was referred to him by my rheumatologist.
Unfortunately, when I was first referred to him, his office didn't take my insurance. This was almost three years ago, so I decided to try my luck and see if his policy had changed. Sure enough, when I looked up his name on my insurance plan, there he was. So I called to make the appointment. Their office didn't know that they were now taking my insurance. They had to double-check! The insurance system in this country is ridiculous, but that is talk for another day.
When I went to see Dr. Schapira, it was like first finding my rheumatologist all over again. He and the Nurse Practitioner who met with me both listened to all of my symptoms and agreed that they were cardiovascular. They explained to me that Lupus patients present microvascular disease (meaning it affects the small arteries) as opposed to macrovascular disease (affecting the large arteries) and that other cardiologists or doctors who aren't familiar with Lupus are looking for macrovascular disease and don't know to look for the other. They told me that they suspect that my issue is microvascular. By the way, all of this is explained in his presentation in the Lupus Patient Conference video I linked to above. His talk begins at 1:36.
Dr. Schapira proceeded to tell me that the only way to confirm microvascular disease is to perform a cardiac MRI. He told me that it will take awhile to get that scheduled because he anticipates that the insurance company will fight against covering it because insurance companies also don't quite understand Lupus. Sigh, and so I wait. In the meantime, he put a Holter monitor on me for 24 hours to see how my heart reacted to things, including teaching my dance class. I still haven't heard back about those results. And so, I wait.
In the meantime, I've been steadily plugging away at my treadmill walking. I have gone from walking for 15 minutes at 3.4 mph with no incline to walking for 30 minutes at 3.8 mph with a 2% incline. It sounds so minimal, but I'm happy and grateful for this little bit of progress. I still get really tired from stair-climbing and I have moments where I have to catch my breath when I'm teaching, but I am feeling better overall. Oh, and by the way, Dr. Schapira told me the dancing was a good thing.
This whole process has made me reflect on my health challenges and on the challenges my fellow Lupies face. There is a term that is popular in the Lupus community. We call ourselves Lupus Warriors. A lot of people talk about being a Lupus warrior in terms of fighting against the Lupus. That's valid, but that's not the way I think of it. I think of it on a more spiritual level--we are facing the challenges that life throws at us, and moving forward bravely, facing our fears, surviving different battles and skirmishes, and continuing to live the best life we can live.
So to all my fellow Lupus Warriors, keep up the good fight. I'm sending you all lots of love. I'll keep you all posted on my heart's progress.
What challenges are you facing and overcoming? Please feel free to share in the comments below.
you are a strong and brave woman. thank you for sharing your story.
ReplyDeleteThank you, tickey. Xoxo
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