Earlier this year, I shared in a column that I am chasing remission, and that lupus has caused a shift in my spiritual beliefs. Today I find myself revisiting both of these subjects.
Have you ever had an enemy who said you couldn’t do something, and it made you even more determined to make it happen? I feel that is lupus for me this year. I rarely make New Year’s resolutions. However, I had decided my resolution this year was remission. I know I have no control over that, but this is me being positive. I am a joy junkie and no matter what the situation, I will always try to find the good or the funny in it.
One of my first symptoms was that the lining around my heart swelled (pericarditis). This was scary. I was an active, healthy young woman. Once my diagnosis was confirmed, I was told that this could happen again. It has happened at least three more times, but my heart has not sustained any permanent damage. I often joke about this condition. I say, “Remember when the Grinch’s heart swelled to three times its size? He really should get that checked out; it’s not fun.” As I said, I can usually find things to laugh at even when it’s not funny. It’s just my way. When I thought that my brain was shutting my body down, I told my family, “Well, even with brain issues, I’m still smarter than 97 percent of the populace.” (They didn’t think that was funny.)
Well, it seems that the funny in me is fading. The latest news is that I may also have a lung disorder. It hurts to take deep breaths (this is not unusual for a lupus warrior), but it seems my breathing issues are a bit more serious than the inflammation I’d thought was the cause. The latest news has me processing yet again. Whenever there is a new possibility, I process and then I wait for the news. I do my best not to worry, but the anxiety attacks come in the middle of the night as I process and wait, wait and process. All the while, I’m doing my best to keep it light and not lay claim to anything that unconfirmed.
With each new possibility, I retreat more and more into myself. So many people know me because of my giant smile and funny nature, and that makes going out in public difficult. It seems most of what I have to say starts with my illness or “I posted on Facebook the other day.” This is because I rarely leave my place anymore. Social media has become my window to the world, and I recognize this as not very healthy, so I have decided to take a break from that as well.
When serious things happen, I like to deal with them. I am realizing that my joy is going, and my happy feelings are giving way to something more sinister in my soul — sadness. If you are feeling some of what I am feeling, I want you to please consider speaking with a professional. I am learning that I cannot do this on my own and well-meaning friends and family can’t help with this issue. I have requested time with a therapist because I am a joy junkie, and I need a fix bad — and I need it fast. I realize that I can’t figure out the right coping mechanisms on my own. So, in the midst of my storm, I’m looking for a poncho, an umbrella, and some rain boots. I hope you will do the same if you feel like you are in the middle of an uncontrollable torrential downpour.
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