My new look for going to the beach. "You have had a rough year," is something more than one person has said to me recently. I guess when you think about it, it's true. In less than a year I have built the following team of health professionals thanks to Lupus: my primary care doctor, a rheumatologist, a physical therapist, an acupuncturist, a periodontist (plus periodontal care from my dentist), and a cardiologist. I still need to add a dermatologist, an opthamologist, and an otolaryngologist (ear, nose, and throat doctor). The latter two are due to side effects from my meds. Once I add two of the last three, I have enough doctors to form my own baseball team.
I am on three daily medications and I take prescription pain medication as needed. I am on a bunch of supplements. I have had at least two medical appointments weekly for the last eight months. I put myself on a fairly strict anti-inflammatory diet called the Auto-Immune Protocol, and I have been retraining myself on how to schedule my time based on The Spoon Theory. Oh, and let me not forget that I now live like a vampire because I must avoid the sun at all costs, since UV rays are a Lupus trigger (as you can guess, one of my supplements is Vitamin D).
Basically, my life has changed drastically in a short amount of time, and yes, it has been rough. However, I feel it has also been a good year.
I welcome the changes. After years of mysterious symptoms with no explanation, with doctors looking at me as if I was as crazy as the symptoms I described, I feel such a sense of relief. Now when I go to a doctor, I say, "I have Lupus", and that's enough to get them to listen. When she first evaluated me, the cardiologist said, "It's too bad you have this, but I imagine it feels good to finally be getting some answers". Yes, yes, that's exactly it and it's wonderful to hear a medical professional acknowledge it.
I have received so much loving-kindness from my family and friends. Ever since I wrote my original post about my diagnosis, I have received emails, phone calls, and regular "check-ins" done with such care. I am so grateful to know such love and support.
I also welcome new contacts I have made. I have gotten to know other "Lupies" through mutual friends, patient conferences, and a Lupus support group sponsored by Lupus LA. There are social networking sites for Lupus patients such as My Lupus Team and Patients Like Me. I have found a lot of resources in the general auto-immune community because of the lifestyle changes I've made.
I have been able to rekindle an old friendship because we both found out we were sick at the same time, she with Fibromyalgia (a related disease). After years of not seeing each other, we spent a whole afternoon drinking tea, catching up, and comparing notes. It was awesome and now we talk regularly.
I have also been able to deepen my relationship with my sister-in-law. She was also diagnosed with Lupus shortly before I was, so we have been each other's main support group. Although neither of us is thrilled about being sick, it has been wonderful to have someone to turn to for support for even the smallest of things like, "My feet are so cold, I'm wearing three pairs of socks" (see Raynaud's for an explanation of that one).
Most importantly, Lupus is teaching me to be mindful and to listen to my body. I have had to slow down enough to pay attention. If I mistakenly eat the wrong thing, the pain in my joints tells me so. If I don't get enough sleep or over-schedule my day, dizziness and fatigue will drag me down.
I'm not always fine when I do what I am supposed to do, but I do tend to feel better, and this is all I need. Feeling somewhat better has kept me dancing. Not only that, I have been dancing with a lot of feeling according to my colleagues. After I had performed an Alegrías recently, one of my fellow dancers told me , "There was so much joy in your dancing, it was as if there was nothing else you'd rather be doing". I told her that she was right. That's what if feels like when I dance--there's nowhere else I'd rather be and there's nothing else I'd rather do. It's apparently good for me too; the cardiologist said I would be worse off now if it weren't for the dancing. So there you go. I'll keep dancing so long as this body wants me to do so.
So as I go into 2016, I look forward to the continued changes. I accept that I am entering a long and slow transition into something new. I hope that this something new brings me to more growth, love, gratitude, and acceptance, and that I may use whatever I learn to help others as well--even if it's something as simple as telling you to eat whole foods, get some sleep, and do some dancing.
Did you like this post? Feel free to Like and share it.
How was your 2015 and what are you looking forward to in 2016? Feel free to share in the comments below.
I am on three daily medications and I take prescription pain medication as needed. I am on a bunch of supplements. I have had at least two medical appointments weekly for the last eight months. I put myself on a fairly strict anti-inflammatory diet called the Auto-Immune Protocol, and I have been retraining myself on how to schedule my time based on The Spoon Theory. Oh, and let me not forget that I now live like a vampire because I must avoid the sun at all costs, since UV rays are a Lupus trigger (as you can guess, one of my supplements is Vitamin D).
Basically, my life has changed drastically in a short amount of time, and yes, it has been rough. However, I feel it has also been a good year.
I welcome the changes. After years of mysterious symptoms with no explanation, with doctors looking at me as if I was as crazy as the symptoms I described, I feel such a sense of relief. Now when I go to a doctor, I say, "I have Lupus", and that's enough to get them to listen. When she first evaluated me, the cardiologist said, "It's too bad you have this, but I imagine it feels good to finally be getting some answers". Yes, yes, that's exactly it and it's wonderful to hear a medical professional acknowledge it.
I have received so much loving-kindness from my family and friends. Ever since I wrote my original post about my diagnosis, I have received emails, phone calls, and regular "check-ins" done with such care. I am so grateful to know such love and support.
I also welcome new contacts I have made. I have gotten to know other "Lupies" through mutual friends, patient conferences, and a Lupus support group sponsored by Lupus LA. There are social networking sites for Lupus patients such as My Lupus Team and Patients Like Me. I have found a lot of resources in the general auto-immune community because of the lifestyle changes I've made.
I have been able to rekindle an old friendship because we both found out we were sick at the same time, she with Fibromyalgia (a related disease). After years of not seeing each other, we spent a whole afternoon drinking tea, catching up, and comparing notes. It was awesome and now we talk regularly.
I have also been able to deepen my relationship with my sister-in-law. She was also diagnosed with Lupus shortly before I was, so we have been each other's main support group. Although neither of us is thrilled about being sick, it has been wonderful to have someone to turn to for support for even the smallest of things like, "My feet are so cold, I'm wearing three pairs of socks" (see Raynaud's for an explanation of that one).
Most importantly, Lupus is teaching me to be mindful and to listen to my body. I have had to slow down enough to pay attention. If I mistakenly eat the wrong thing, the pain in my joints tells me so. If I don't get enough sleep or over-schedule my day, dizziness and fatigue will drag me down.
I'm not always fine when I do what I am supposed to do, but I do tend to feel better, and this is all I need. Feeling somewhat better has kept me dancing. Not only that, I have been dancing with a lot of feeling according to my colleagues. After I had performed an Alegrías recently, one of my fellow dancers told me , "There was so much joy in your dancing, it was as if there was nothing else you'd rather be doing". I told her that she was right. That's what if feels like when I dance--there's nowhere else I'd rather be and there's nothing else I'd rather do. It's apparently good for me too; the cardiologist said I would be worse off now if it weren't for the dancing. So there you go. I'll keep dancing so long as this body wants me to do so.
So as I go into 2016, I look forward to the continued changes. I accept that I am entering a long and slow transition into something new. I hope that this something new brings me to more growth, love, gratitude, and acceptance, and that I may use whatever I learn to help others as well--even if it's something as simple as telling you to eat whole foods, get some sleep, and do some dancing.
Did you like this post? Feel free to Like and share it.
How was your 2015 and what are you looking forward to in 2016? Feel free to share in the comments below.
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