This post is part of the Health Activist Writer’s Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. You can learn more about it here:http://info.wegohealth.com/HAWMC2012.
Superpower Day: If you had a superpower – what would it be? How would you use it?
Today’s prompt is about super powers. If I could pick any superpower what would it be? Hmm… well is curing all illnesses a superpower? No? Ok, well, then, maybe flying so I could visit all my friends who live far away? I think that would be an amazing power. I wonder if flying would be as exhausting as walking and driving could be … and some people are so far away … teleporting then. That would be perfect.
One of the things that I have found with the twitterverse is that it’s endlessly frustrating to be so far away from people. The support groups in my area are mainly middle aged women. There’s nothing wrong with that, and I know some of my twitter friends fall into that category, but somehow I just don’t connect with a group like that. We’re in different stages of life and illness. So I rely on my twitter friends, but they are oh so far away! I have friends everywhere from Australia to the UK to the Philippines to Canada and countries in South America and Africa. Which is amazing. Truly it is. I just wish i could meet them sometimes.
An internet “hug” can be very comforting, but there are times when I’d prefer to give a real one. Or, if the pain levels are too high for hugs, I’d love to be able to veg on the sofa with a friend and watch movies. Even if we are both doing that in our respective homes, it just isn’t the same. Moreover, there are times when I know my friends need me, and I have no way of getting there. That kills me.
I am beyond grateful for my twitter friends. I can’t imagine living without their love and support. I just hate that we’re all so spread out across the world. Don’t get me wrong, it’s amazing that technology lets us connect in real time – and includes things like Skype – gone is the age of long-distance pen pals. At least, in theory. Sometimes the reality feels like we might as well be writing letters for all the chance we have of ever meeting.
Now, all this being said, I would like issue a disclaimer that I love my twitter friends and wouldn’t trade them for the world. Not being able to meet doesn’t detract from the friendship. I just wish that I could pop in and see them whenever I could, that’s all.
Sorry about the move to a new blog. I figured it was time to change the old address since it doesn’t really apply to me anymore…
A little over a year ago, I was finishing up my first year of a graduate program in a country near the equator. My lupus flare was out of control and the doctors thought that the heat, UV light and humidity were inciting repeated flares. I was forced to leave my graduate program and move back to the states.
I have spent the last year trying to get back on my feet. It took ages to get off of the prednisone, try to figure out a better medication plan, and then try to get my life sorted out. (I’m still working on that last one.) It’s been a really rough year, and I had a hard time putting it all into coherent text. There are a number of medical changes and experiences that I have been meaning to write about – hopefully I’ll get those posts up soon. In any case, I created a new twitter handle and blog address because I felt that focusing on my lost grad student life (and it’s resultant career path) were dragging me down into the past. It was time to look to the future, so here we go…
A special thank you to my twitter friends who have been endlessly supportive this past year. I could never have made it through the year without your love.
PS: For those of you who are wondering, the new blog title comes from my last blog post.
thank you to my readers!
The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:
The Blog-Health-o-Meter™ reads Wow.
A Boeing 747-400 passenger jet can hold 416 passengers. This blog was viewed about 4,000 times in 2010. That’s about 10 full 747s.
In 2010, there were 37 new posts, not bad for the first year! There were 10 pictures uploaded, taking up a total of 2mb. That’s about a picture per month.
The busiest day of the year was June 22nd with 112 views. The most popular post that day was One Lovely Blog Award!.
Where did they come from?
The top referring sites in 2010 were chronicbabe.com, twitter.com, gradstudentwithlupus.blogspot.com, fragileannie.com, and healthfitnesstherapy.com.
Some visitors came searching, mostly for grad student with lupus, all you can do is try to know who your friends are, medical students with lupus, trick or treat pranks, and all you can do is know who your friends are.
Attractions in 2010
These are the posts and pages that got the most views in 2010.
One Lovely Blog Award! June 2010
Who Am I? June 2010
through the looking (or sometimes bulletproof) glass June 2010
what your doctor couldn’t tell you … June 2010
it’s supposed to be a “doctor-patient” not “doctor-disease” relationship June 2010
Dear lovely readers,
I have been getting some “are you still alive?!” letters. Yes, I’m still alive!
My apologies for the sudden disappearance. I have been stressed out with finals, packing to move, and I no longer have working Internet at my apartment.
Breakfast Club will be suspended for awhile due to the fact that one of my original Breakfast Club girls has returned to a scary place in Africa to help provide maternal health care. I will resume writing it when I get past the “omg omg is she ok?!” worry freak out phase.
Much love to you all. Thank you for your concern. It’s nice to know my readers care! (and that I have so many readers)
In the meantime, I AM updating my Twitter: @gradstdntwlupus
(nope not Gossip Girl – but you watch that show a couple of times and almost expect to hear those words after “xoxo” don’t you?)
I want to begin by stating that I will try to be as honest as possible as I write this blog. I am starting it with the hopes that it will not only help me connect with other people in my situation, but will also help the family and friends of people with lupus understand what their loved ones are going through. That being said, I’m sorry to say that I will do my best to keep my identity under wraps. The sad truth is that lupus isn’t a disease I want all my classmates and future co-workers, bosses, etc to know I have. I know this makes it sound like I am ashamed of my diagnosis, but that isn’t the case at all. Rather, I worry about the judgment they might make of my capabilities. Unfortunately, they may be right at times. Lupus isn’t a disease that allows for consistent work ethic, let alone late hours and early mornings. It doesn’t mean that I won’t be a diligent worker, but I don’t want them making assumptions about my capabilities before they even meet me. More over, I would like to retain my right to privacy about the state of my health.
I was first diagnosed at 16, when I was a university student. It was a long process to diagnosis. I was passed around from doctor to doctor. Through many tests, possible diagnoses, and prescriptions – some of which badly reacted with each other. I was in and out of the hospital throughout it and the trial is pretty clearly depicted on my grade transcripts. Professors weren’t very understanding and it never occurred to me to take some time off. I haven’t had a flare up in over 5 years, and was generally considered in remission by my doctor. This meant no meds, rare check ins, and generally I was almost able to forget I had lupus at all were it not for the residual joint pain and swelling I still experienced.
I am now a graduate student, who is finding that it is quite a struggle to fight a lupus flare up and stay in school. I can’t afford to take time off, but staying in school (i.e. not failing out) is not an easy task on its own let alone with an active flare. I’m lucky that its not hitting my kidneys, but that doesn’t make it any harder to live with. To be honest, sometimes I think my friends actually have a harder time understanding it precisely because of that though. I just don’t seem ill to them. When the doctor told me that I was, indeed, having a flare, he told me that I would have to relearn my limits. He said that while I might think that I remember how bad it can get, I probably don’t. He was right.