Category Archives: breakfast club

Sunday Breakfast Club – Poesies & Metaphors

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.

No matter what you’re accustomed to during a “normal” winter, Winter has been pretty brutal across a large chunk of the USA this year. I live in the upper Midwest where we have had some really nasty wind chills and such. We expect cold winters, but not like this. It’s been miserable, and the extreme cold plus the snow have had my body in hysterics. The occasional warm spells didn’t really even help, because the sudden jumps from way-below-zero highs to highs in the teens or 20s (F) back to way-below-zero highs again confused my body even more. Meanwhile, I’m trying to walk or drive on the ice rinks we are currently calling streets. It’s been the kind of winter that starts to make me feel like maybe this year will be the year when Spring just forgets to show up…

There’s a bit of poetry that popped into my head during one of our especially cold spells, and has been providing a bit of solace ever since. It’s part of a much longer poem, and is taken rather out of context, but part of the appeal that art and poetry hold for me is that I don’t necessarily have to interpret them the way they were intended to be interpreted.

For winter’s rains and ruins are over,

And all the seasons of snows, and sins;

The days dividing lover and lover,

The light that loses, the night that wins;

And time remembered is grief forgotten,

And frosts are slain and flowers begotten,

And in green underwood and cover

Blossom by blossom the spring begins.

-Algernon Charles Swinburne, Atalanta in Calydon

I’ve been reciting these lines in my head as a reminder that eventually Spring will return, even if it doesn’t feel that way right now. I may not be able to see it, but daylight hours should be getting slowly longer. I try to remind myself that Spring starts to develop deep in the Earth and trees long before the buds start to show on the branches. Besides, the line “frosts are slain” has a splendid sort of vindictiveness to it that fills me with a rather unkind glee…

The thing about this concept of not always seeing the early signs of something is that it applies to more than just the Spring. It also applies to my flares. Just like I usually get a warning of their impending doom, they have usually started to gently ebb away before I realize that there is some relief coming my way. Of course, since I don’t see the signs, I’m busy cursing the flare in the meantime. The point is, really, that I’m so miserable, be it from a flare or the winter cold, that I can’t, or won’t, see the signs that relief is coming. Albeit slowly.

So while my body continues to flare in anger at the weather, and Winter marches interminably on, I try to put some faith and hope in the invisible signs of better days.

What inspires you to hope for better days?

*Disclaimer: As I stated above, I have taken these lines out of their greater context and applied the meaning as I am choosing to interpret it. To the people who never feel satisfied until they have mocked someone else: should you feel an absolutely redundant but inescapable need to point this out to me, please send me an email rather than leaving a comment. Preferably with a subject line with something along the lines of “mocking your interpretation of the poetry” or something so I know what I’m walking into when I open it. Thanks 😉

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Sunday Breakfast Club: “When there is no enemy within, the enemies outside cannot hurt you.” ~African proverb

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.

NOTE: This is the post for Saturday, April 7. I skipped Friday, April 6 as one of my 2 pass days, because I was just too exhausted and stressed at work. I realize that this is supposed to be Saturday’s post, but since I’m posting it on Sunday, I figure it’s fine if it’s a Sunday Breakfast Club post.

Today’s topic:

Blogger’s choice.

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 think this quote came via my Twitter feed. I jotted it down in the margin of a notebook, and I can’t figure out where it’s from. Nevertheless, it stuck with me, and I went in search of the wording today. It’s a nice thought: if you love and believe in yourself then the world can’t get to you. Of course, for those of us with chronic diseases – and especially those with autoimmune diseases – we have an ever-present enemy within us. In fact, at least to me, my disease is my greatest enemy.

Now before people get all riled up… yes, I do realize that this quote is probably talking about mental enemies not physical. But my illness is linked with my mental health. It’s not something I can “grow to love,” as someone suggested once. How can I love something that keeps attacking me and makes my life (and health) miserable? My enemy is literally inside of me, attacking me from the inside out. I hate that I’m sick, and I guess I just haven’t really resolved myself to it yet. Perhaps I never really will.

Everyone reacts to their illnesses differently. I get that. I have a lot of respect for those people who learn to accept that they’re sick and move past it. For me, though, I’m forever bitter about it. How can I love something that has sabotaged my health – and with it, every other part of my life including all my life plans, goals, love life, and a number of friendships? Every time I think about everything that my illness has taken away from me, I get bitter. And more bitter. And even more bitter. The fact is, I’m not sure which one is more dangerous to my health: the lupus itself, or the way I can’t seem to stop being eaten up inside by my illness.

Maybe someday I will get past this, and learn to just accept that I’m sick without letting it rule my thoughts and emotions. For now, though, I just can’t seem to get there.

Sunday Breakfast Club posts are always about people’s input. So I’d love to hear how you deal with this topic. Leave me a comment below so other people can respond too. Or, if you’re uncomfortable doing that, then send me an email at chr0nicbookworm(at)gmail(dot)(com). It’s always so inspiring to see how people deal with this issue.

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Filed under blog carnivals/grand rounds, breakfast club, coping, introspection, WEGO Health Activist Writer's Month

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.

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Filed under blog carnivals/grand rounds, breakfast club, coping, introspection

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.


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Filed under breakfast club, community education, insensitivity/ignorance, rant

Sunday Breakfast Club: Snoop Dogg talks about his daughter Cori having lupus

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.

It seems like the celebrity coverage of lupus has been abnormally high these days… first there was the discussion of Michael Jackson’s discoid lupus in the aftermath of his death… then there was all the “does Lady Gaga have lupus?!?!” debating… and now we are hearing from Snoop Dogg about his daughter Cori’s lupus diagnosis.

In the midst of the Lady Gaga business was the discontent about what information was being gleaned from her comments – “is it accurate?” “Is it what we want someone to be saying?” “Well, at least we can use the awareness, right?”

Well, it seems that Snoop Dogg has that whole awareness thing well within his sights. He’s been all over the airwaves raising awareness these days. People ran an article. Then he was interviewed on The View (see YouTube clip). His wife, Shante, has joined Lupus LA.

In the midst of the discussion of Cori’s symptoms and the battle to find the right medication regimen for her (sound familiar, anyone?) … we hear about how Chante thinks they never could have made it through the battle without each other (having receonciled just before the diagnosis) … but this quote hit me hardest:

“That’s what’s making her get better: that we have love in the house.” -Snoop Dogg, on “The View”

Now theories of the best cures abound… and I don’t want this post to turn into a discussion of alternative medicines. So let’s just focus on the love part, shall we?

I know that not everyone has a very understanding family. Still, understanding and supportive are different things. You can be supportive of someone’s needs without understanding why they need those things or what they are experiencing.

For me, a little love goes a long way. Love from my sister and my parents, yes, but also love from my friends (even if they aren’t in the house). I couldn’t manage without it. So here is my question, readers: whose love do YOU rely on?

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Filed under breakfast club, community education, in the media

Sunday Breakfast Club: Toy Story (NO SPOILERS)

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.

 

Don’t worry. I won’t ruin the movie for you. I WILL say that Toy Story 3 was hilarious. I enjoyed it the most of the 3. Added bonus: compare the improvement in animation from Toy Story 15 years ago to this one. Amazing. The premise of the movie – as determined from the TV ads and previews – is that as our darling Andy is going off to college, the toys are getting donated to a preschool. Here’s the other thing we learn: not all toys are created equal. Well, okay. They’re CREATED equal, but as they endure different lives they become very different. So do we.

So here’s my topic for today: Do you ever feel like the toys?

I do. I feel like my friends have moved on to the next phase of their lives and I’ve been left behind … and the most irritating part is that I feel like I should be waiting around for them to come to their senses and need me again… and I hate it. It makes me feel pathetic. That being said, does anybody blame the toys for waiting around? No. … but we don’t blame Andy for moving on to college either.

The concept of a disappearing friend syndrome (anyone know who came up with that phrase?) is not a new one. You will find mention of it all over the blogs, discussion boards, chat rooms and Twitter feeds.

The reasons for it are many fold, but when you really think about it they come down to 2 key points.

  1. We don’t always make the most reliable friends. We often end up cancelling last minute – and that’s just the events we think we MIGHT be able to manage in the first place. Of course, we are not fully to blame. We obviously can’t help that we are ill. We should be able to rely on our friends. Isn’t that the whole point of friends?
  2. Our friends don’t understand. So how do we fix this one? Well, we can’t fix it any more than we can fixt point one. There is only so much educating we can do. Even the amazing Spoon Theory can only go so far if people aren’t willing to listen.

Where does this leave us, you ask? Well, it leaves us exactly where we started. Except for one key fact – we, like the toys, have each other. As much as it often feels like are alone in the world having been abandoned by most of the people we hold near and dear, it’s easy to feel lost. I do. Even knowing that I have all of you, I still feel alone sometimes. Let’s face it, sometimes you want a flesh and blood friend… because I do honestly feel that not everyone has abandoned me because they can’t or won’t deal with the trials of an ill friend. I think some of them really just don’t get it.

So I ask you – what, if anything, has worked to help your friends to understand?

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Sunday Breakfast Club: we change the future

“If you wonder what you were doing in the past, look at your body; to know what will happen to you in the future, look at your mind.” – Dalai Lama

As I do believe in reincarnation I was a little put off by this statement. Not that I’m doubting the wisdom of His Holiness the Dalai Lama or anything, but I guess it struck a cord. I don’t blame myself for my illness. Well, I don’t blame my illness on anything I’ve done in this lifetime. Or, at least, I try not to. Still, it’s hard to know what I may have done in a previous lifetime… Anyway, I know that I have readers with many different religious beliefs so I won’t belabor the reincarnation point. The past is the past, so let’s move on to the second part of the quote: what will happen to us in the future?

As I am not averse to admitting to my guilty pleasures on this blog, let me admit to another: the Twilight series. I was watching Twilight just the other night with my cousin and my sister. At least, I was watching it until I heard the quote:

“Alice’s visions are subjective, the future can always change.”

Well, you all know how I am by now. I obviously zoned out and disappeared into that place in my mind where I fixate on a quote or saying until I figure out what I think about it. I mean no disrespect by joining this Twilight quote to one by HHDL, but I think the concepts are connected. The future can always change, because we can change it by how we interact with the world … and how we interact with the world is largely determined by our own mindsets.

The problem with a chronic illness, is that it often limits how well we manage to interact with the world. Our illnesses keep us at home – often in bed – day after droll day. I never thought I could be so tired of the inside of my room, but then again I never thought I could be so tired either. The days when I would fake sick to stay in bed seem a distant memory now that I get so excited to actually NOT be so sick I must stay in bed. It’s so easy to get depressed – and therein lies an even bigger toll we pay to our illnesses. When we’re depressed we don’t want to do anything. We don’t want to interact with the world or anyone in it. We need to beat that, but it’s very, very hard. We must find ways to interact with the world because I get the most depressed when I feel alone and isolated. A feeling that can be at least partly alleviated.

In today’s technology-centered world, we are hardly as restricted as we would have been 100 years ago. After all, we can blog, we can tweet, we can email. We can send text messages and make phone calls. We must do what we can not only to interact with the world, but to keep our spirits up. We support each other and we rally each other to achieve what we want to achieve in our lives. Be it getting out of bed that day or walking to raise money for lupus research. I find, however, that it is actually an upward spiral. Your support helps me to get myself to school and to study, so I do better in my classes, and that makes me feel better about myself … which leads to more interactions with all of you wonderful people. And so on. Even more importantly, you all are there to boost me when I slide back down that spiral again, too keep me from sliding all the way down to where that spiral lands me: smack dab in the middle of my bed, under my covers, refusing to get up. This connection with the community has been my lifeline lately. It’s what keeps me from crawling up in the fetal position under my covers and never coming out. I don’t know how I got by day-to-day before I joined the online community, I cant imagine getting by without all of you wonderful people!

So this week… I ask you, my beloved readers, what do you do to keep your spirits up?

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