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Lupus Awareness Day in the USA!

The other day in the gym locker room, I overheard a conversation between two elderly women. The first was trying to convince her friends to attend a fundraiser (I missed what it was for). Her friend replied, “There are so many CAUSES now. What are all these diseases? Do they really all need funding? There can’t be that many people suffering if we don’t know about the disease. Can’t you throw a fundraiser to support some sort of cancer? At least I would know that my money is going to a real disease not a hoax.”

I was shocked and troubled by this exchange. Just because someone hasn’t heard of a disease doesn’t mean that it doesn’t exist. Just because someone hasn’t heard of it doesn’t mean that only a few people have it.

It’s Lupus Advocacy Day here in the US… and this is why we need it.

According to the Lupus Foundation of America:

  • approx. 1.5million people in the USA alone are fighting lupus. About 5 million world-wide (!!).
  • 90% of lupus fighters are women, usually 15-44 years old at diagnosis

Clearly, this is not something that’s affecting only a few people. Moreover, 70% of cases have systemic lupus, and 50% of systemic cases have hit at least one major organ (heart! lungs! kidneys! brain!).

We are being treated with steroids and antimalarials because this is not a disease that get’s a lot of research focus. We haven’t had a new medicine officially approved for lupus for FIFTY years!

It’s Lupus Awareness Day. Please contact your politicians!! Awareness is important. You can do it quickly and easily right here.

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it ain’t over ’til it’s over

Last night, I went to a 16th birthday party. There was cake, a live band, a cash bar for the adults, and lots of food. There was only one thing missing: a birthday girl. The little princess died 8 years ago of cancer. So for what would have been her 16th birthday, her mom threw a benefit. It was a lovely night, and hearing stories about her brought back a lot of suppressed memories. The little girl was like a sister to me, and her death was devastating. This little angelic girl, whose only complaint was that her hair was falling out, who was always ready with a smile and “how are YOU?” was gone.

I think everyone has a moment when they realize that life just isn’t fair.  Then they have a moment when they accept that fact. For some people, that’s the same moment. For me, the realization came when she was diagnosed with leukemia, but the acceptance didn’t come until she died. I guess until that point I kept thinking that something would set the universe right and she’d be cured and grow up to be an amazing person … but nothing did.

The thing is, by 8 years old, she’d already taught me one of the most valuable life lessons I’ve ever learned … life is short. Ok, that was an obvious one given the story, sorry. Here’s the real one: you can’t change some things in life. Some diseases are handed to you without provocation, and you’re stuck wondering “why me?!” Sooner or later you’re going to die. Usually, you cant control when or where or how. What you can control is this: What are you doing now? Who are you making happy? Whose life are you improving? It’s easy to wallow, but it doesn’t help anyone – not even you.

This doesn’t mean that you have to donate thousands of dollars or hours of service. Sometimes, all it takes is a compliment, a hug, an anonymous act of kindness, or even just a heartfelt smile. It ain’t over ‘til it’s over, so what are you doing to make the most of it?

2010 in review

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:

Healthy blog!

The Blog-Health-o-Meter™ reads Wow.

Crunchy numbers

Featured image

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.

1

One Lovely Blog Award! June 2010
6 comments

2

Who Am I? June 2010
5 comments

3

through the looking (or sometimes bulletproof) glass June 2010
7 comments

4

what your doctor couldn’t tell you … June 2010
10 comments

5

it’s supposed to be a “doctor-patient” not “doctor-disease” relationship June 2010
9 comments

Trick or Treat? The Pranks of Sir Prednisone.

This post was featured in ChronicBabe Blog Carnival #15: Trick or Treat.

 

Yesterday I experienced something new. Not the sort of exciting and new event that you would like to cross of your “bucket list.” Oh no, this was the sort of thing that should be on the list of “embarrassing things that you hope will never happen” to you. Ok, maybe I’m being a little melodramatic. After all, there are many worse things that could happen as the embarrassing stories section of any Cosmo magazine will tell you. (Or, more reliably, probably most people.) So why am I so upset about this particular event? Well, I guess because it is caused by an event that I am so happy about.

There is no end to the frustrations of taking prednisone: increased appetite, osteoporosis, weight gain, moon face, etc, etc, etc. What people often don’t talk about, though, is that prednisone withdrawal is no pretty sight either. To finally get off of a prednisone taper is an exciting event – it’s splendid to be free of it’s side effects. Sir Prednisone, though, is hardly the type to just let you shimmy down the side of his holding tower on your hair like Rapunzel’s prince and scamper off into happy oblivion. Oh no, he makes it brutal. The mood swings are ridiculous – I mean, really, who tears up at the end of NCIS when they get the bad guy? It’s almost comic except that it’s so frustrating. Then let’s add in the debilitating fatigue and the horrible joint pain. My favorite withdrawal symptom, though, is the nausea and vomiting.

Which brings me to my embarrassing moment: forceful, projectile vomiting in a restaurant bathroom. I mean the kind of puking where you don’t even manage to kneel in front of the toilet because a slight bend at the waist and suddenly it begins… and then repeats 5-6x in fast succession. Oh and then I performed that whole routine again when I got home. Except that I had to get out of the shower that time – with the  shampoo still in my hair. That wasn’t my greatest moment. Just in case anyone missed it, I gave a final midnight show. Of course, at that point it was just acid coming up. Beautiful visual isn’t it? To all the empaths out there … are your noses and throats burning yet?? Hey universe, I would like to never do that again, please. Thanks. Curse you, Sir Prednisone. Can’t you just let us go peacefully?

Sunday Breakfast Club: Worst fear? Check.

This post was included in a “Facing Your Fears” edition of the Patients for a Moment Blog Carnival hosted by Selena at Oh My Aches and Pains on Wednesday, October 13, 2010!

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

I’m writing this post at 2:30am, having just returned from a friend’s birthday celebration. I should be sleeping, but I suddenly felt like writing, so here goes… Please forgive me if it’s not one of my more coherent posts..

One of the things that kept coming up in conversations (most of which I overheard rather than participated in) was the phrase “I’m so scared that…” Generally speaking this was followed by a few key phrases. Notably “that I’ll never get a job” or “that I’ll end up an old spinster.” Which instigated in my mind a recall action of all the other “I’m so scared that …” statements I’ve heard over the years. These often included worries about the death of parents. More to the point, it included worries about the speaker’s own health.

We spend all this time worrying about these things. Dreading the idea that the might happen. Worrying about what we are doing that might make those fears a reality…. How many people spend a lot of time considering what we would do if they actually DO come true? I surely didn’t, but here I am.

For those of us with chronic illnesses, one of those major fears has already come true, though. So what now? I guess there are a few options: we can wallow. we can ignore that this was a fear in the first place. or, I guess, we can embrace it. Ok, yes, I know that sounds utterly ridiculous. I mean, who embraces a worst fear come true? Well I’d be lying if I said that I have, or even if I said that I’ve been really trying to. I guess the real question is .. SHOULD I be trying to? Ignoring it doesn’t help me. Neither does pretending this was never something I was scared might happen. Still, I am determined to try to embrace what I can. Make the best of a bad situation, so to speak. Through all the pain and suffering we do learn things. We learn compassion. We learn acceptance. Many of us could probably treat a number of conditions ourselves at this point.

Here’s the real kicker though: this fear of becoming ill doesn’t stop when you are ill. Instead, the fear continues to course through you: you worry your meds aren’t the right ones, you worry about the side effects of those medications, you worry that your diagnosis is incorrect, you worry about all the impact on your life and relationships your illness will have, and most of all you fear the escalation of your illness.

At the end of the day, our situation sucks – no two ways about it. Nevertheless, we can choose to focus on the fear or we can choose not too. We might not be able to control whether or not we have an illness, but we can control how we react to having it.

Sunday Breakfast Club: “Where’s the love, y’all?”

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.


A special issue Sunday Breakfast Club entry, one day early, in memory of all those who died on 9/11.


As today is the anniversary of the September 11 (9/11) attacks, I have been giving a lot of thought to how the world has changed since then. In the aftermath of this tragedy, I feel as if the world has become disjointed. Or, perhaps, it’s just that I am more aware of the seams between the world’s puzzle pieces now. Nevertheless, nine years later, we are still very much in mourning not just for the people who wrongfully died that day, but also for the innocence lost. … but what have we learned from this calamity? We have people threatening to burn Korans in a country founded on the beliefs of religious freedoms. … but I digress from a point that I haven’t even made yet: this lack of acceptance may or not have been so pervasive before 9/11, but it surely hasn’t gotten better since then… and it extends far beyond the realm of religion and politics. Many chronic disease sufferers would agree that it seems to be omnipresent in the medical world.

Maybe you remember the “Where is the Love?” song by the Black Eyed Peas and Justin Timberlake that came out a year or two after 9/11. Or maybe you don’t. It was, in contrast to the general merriment-driven attitude of most of their work, a pacifist plea. Debates about political, religious and moral convictions aside, I think their point is valid:

Yo’, whatever happened to the values of humanity

Whatever happened to the fairness in equality

Instead of spreading love we’re spreading animosity

Lack of understanding, leading lives away from unity

(…)

Where’s the love, y’all?

Where is our love for each other? If not love, then why can’t we at least muster up some acceptance and attempts at understanding? Maybe the question in this situation would be more appropriately phrased “Where is the empathy?” or “Why is there so little understanding?” Why are patients with medical histories documenting their years and years of painful existence being turned away as drug-seeking addicts? Why are the doctors who should be taking care to figure out what causes little understood diseases like fibromyalgia instead treating patients like whiny women who are just looking for some attention?

We used to just lock people away when we didn’t understand conditions like depression or bipolar disorder. It seems like an outdated notion, doesn’t it? Now that science has figured out some of the underlying biology, we use counseling and medications to help these people. The thing is, things haven’t changed as much as we like to think they have. Sure, we don’t lock up people with fibromyalgia. Instead we just treat them like societal outcasts. Doctors say the condition doesn’t exist, and without their validation of the disease society rolls its eyes at the people who are suffering.

As the population of people fighting fibromyalgia becomes more vocal and ads for drugs like Lyrica that are aimed at fibromyalgia increase, the topic rises closer to the forefront. We aren’t going to sit back anymore and let our doctors tell us, however indirectly, that we aren’t actually ill. A doctor treating patients with illnesses like fibromyalgia requires both signs (objective, observed by the doctor) and symptoms (subjective, what is experienced by the patient) to properly treat the patient. As in they can’t do it without us. After all, who would they be treating? Fatigue and pain are symptoms – and as far as I know they haven’t figured out how to measure what we perceive without our input. So why are we battling with these people who are supposed to be caring for us? Doctors are supposed to help those in need of medical treatment, but instead we are being blown off. Where is the empathy and understanding in that? Where is the commitment to healing (or at least alleviating suffering) that their profession was founded upon?

9/11 was a horrific tragedy. We are right to be mourning the loss of these people. … but why can’t we remember these people by trying to change the mentality that leads to events like these. A focus on an “us” vs “them” mentality, doesn’t really get us anywhere. I’m not delusional. I’m aware that reaching that kind of understanding on that kind of scale is a remote possibility, but we have to start somewhere. Why can’t that somewhere be in the doctor-patient relationship? As we fight wars overseas, let’s not forget that there are people battling for their lives at home too.


Sometimes a Whine is a Good Thing

There is a lot of chatter that goes on in the Twitterverse in which the many chronic disease sufferers live online. People use it as a forum for different reasons. Some use it to hear from people who are suffering from similar situations – common circumstances, advice, etc. Others take that one step further and look to interact with those people, to make friends and speak with people who can say “I understand” and actually do.

There is, as is understandably the case, a large amount of what some may term “whining” that goes on in such conversations. I beg to differ. These are trying illnesses that we deal with daily. Incessantly. From the time we wake up until the time we fall asleep – well, if we even manage to fall asleep at all, that is. It’s frustrating. It’s exhausting. We post these tweets because they help us get through the day. To function as best we can in the “real” world of people who don’t understand. Which is why we turn to the people who know what we mean when we post those tweets: the people who are posting similar tweets.

Now, as best as I can tell, much of the argument (often expressed by way of the private “direct message” feature) against such tweets is a complaint that we don’t get very far by posting them. Perhaps people think we take too much refuge in these tweets, too much solace in something that might not affect the “real world” interactions we are invariably forced to take part it. Again, I beg to differ. Sometimes venting our frustrations on blogs and twitter keep us from frustrating people in the “real world” with complaints that they don’t understand. It’s not just about their understanding, it’s also about being a burden. Many of us feel a lot of guilt about the constant demands we put on our loved ones: doctors visits, chores we can’t do, money, and so on. Constant whining seems like one more thing for them to bear, and another reason for them to feel bad for us. Or, as is more prone to upset and induce guilt in my case, to worry about us.

Still, I do think that there should be some efforts made to help those in our “real world” lives understand what we are going through. After all, it seems rather self indulgent to go on in a woe is me nobody understands me vein of thought without at least trying to fix that situation. … but that is rather more easily said than done. Some people fail to understand no matter how many times we try to tell them about it. I’m not ashamed to admit that sometimes I just don’t feel that it’s worth depleting my limited energy stores to educate them.

Frankly, I don’t think anyone has a right to tell me that I’m whining too much – or to tell anyone else that. After all, that is the joy of the internet, is it not? We can choose who we want to interact with. Some people support others by joining in the necessary venting of frustrations, others support with reminders of strength and “I’ve got your back” attitude, still others provide jokes, quotes, or anecdotes. At the end of the day, we interact with the people who provide us with the right mixture of those things – and we try to do the same for them. That is the point of these interactions. Sure, sometimes it might be more helpful to remind ourselves of our strength, but a lot of times I just need to vent my frustrations and talk to people who won’t judge me for doing so.

I do the best I can to be supportive and (dare I say it?) inspirational … but I’m just one girl, who is fighting hard to stay afloat in a sea of constant pain, fatigue, and disappointment. I can’t be upbeat all the time, nor should I be forced to be. I have enough stress and pressure and pain and so on to deal with without adding this layer of judgment. Of course, it may well be that those whining about the whining (*cough*) are annoyed by those tweets because they are just having a bad day themselves. So I’m choosing to shrug off these comments and criticisms that I have received. Take the whines for what they are – a necessary interaction for some. Or choose not to interact with those Twitter users. The choice is yours, fellow whiners, the choice is yours.