I'm pretty open about my Lupus, it is hard to hide even on good days. I walk weird when I get out of chair, I don't own glasses because my hands have trouble holding on to them so I only use plastic cups, I struggle with word recall sometimes, and use 2 eating utensils when my hands are shaky. But for the most part, I am extremely fortunate and am having a great spell of remission.
A few weeks ago someone asked me when I was diagnosed and when I said about 11 years ago, she looked shocked and said "I'm surprised you are alive, I thought patients like you died within 5 years" it was my turned to be shocked! What a weird thing to say to someone!! Well I'm not dead yet! My life span is likely to be shorter than someone without Lupus, but my doctors say I have a great chance at living a long time. My heart and kidneys (two of the biggest causes of death of Lupus patients) are ok right now. I have tumor like growths on my thyroid that make it uncomfortable to swallow sometimes, but I'm told they are harmless :)
I'm graduating from Grad school in May and turning 40 in July and my present to myself is.......
hiking the Inca trail to Machu Picchu!!! I am so excited!!! About 4 years ago I went on a running cruise to Alaska - we ran a marathon over the week (in stages - 10 miles in Juneau, 7 in Sitka, etc) This event is like that - a marathon over the week. It is a great chance to meet other people who are active and like exercise vacations. I am still in touch with about 7 people from the Alaska trip.
I am a little concerned about how to train for hills and altitude in Mumbai. I live 6 blocks from the Arabian see so I am AT sea level and there are 2 small hills where I live :) I am buying hiking boots over Christmas and will be climbing stairs in my hiking boots!
This is another new adventure to add to my ever increasing list!
If you want to see what I am doing - here is the link
A few weeks ago someone asked me when I was diagnosed and when I said about 11 years ago, she looked shocked and said "I'm surprised you are alive, I thought patients like you died within 5 years" it was my turned to be shocked! What a weird thing to say to someone!! Well I'm not dead yet! My life span is likely to be shorter than someone without Lupus, but my doctors say I have a great chance at living a long time. My heart and kidneys (two of the biggest causes of death of Lupus patients) are ok right now. I have tumor like growths on my thyroid that make it uncomfortable to swallow sometimes, but I'm told they are harmless :)
I'm graduating from Grad school in May and turning 40 in July and my present to myself is.......
hiking the Inca trail to Machu Picchu!!! I am so excited!!! About 4 years ago I went on a running cruise to Alaska - we ran a marathon over the week (in stages - 10 miles in Juneau, 7 in Sitka, etc) This event is like that - a marathon over the week. It is a great chance to meet other people who are active and like exercise vacations. I am still in touch with about 7 people from the Alaska trip.
I am a little concerned about how to train for hills and altitude in Mumbai. I live 6 blocks from the Arabian see so I am AT sea level and there are 2 small hills where I live :) I am buying hiking boots over Christmas and will be climbing stairs in my hiking boots!
This is another new adventure to add to my ever increasing list!
If you want to see what I am doing - here is the link
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