(Since WEGO had a lot to do with the point of this post, I wanted to call it "Here 'WeGo' a-Wassailing"...but Shawn vetoed that on the grounds it was too corny to live.)
My mom always said I was her Francie, the main character in "A Tree Grows in Brooklyn" (read about the book here). Determined to end up with the life she wants regardless of the one she starts out with, Francie bears a lot of responsibility for a lot of people. But, Francie finds an escape. She learns to read:
"From that time on, the world was hers for the reading. She would never be lonely again, never miss the lack of intimate friends. Books became her friends and there was one for every mood."- Ch. 22
I've always been a voracious reader. I credit my Pop-pop, who spent hours with me on his lap reading about Snuffy on Sesame Street, puppy dogs who got in trouble, and an alphabet book with an awesome jello mold (followed by a persuasive appeal to my mom to make some for us). I still remember how proud I was the day I climbed in his lap and for the first time, read to him. Over the summers, I would get the reading lists for other grades and see how many I could finish before September. Books got me through a phase where I was sick of happy endings...and other books stepped up when I was ready for them again:)
But books aren't the only things to read. I was never that into magazines - too many ads, for one. And forget newspapers (the folding and unfolding and noise and ink and smell - it makes me sneeze). But the internet...now there's a happy medium! Shorter than books, but if you think about it, links are almost like optional chapters. I mean, if you WANT to read more you can follow link after link after link, but when you're ready to stop you can do so without feeling like it's incomplete.
Then there's the real kicker - books, by the time you read them, are a done deal. The plot's been resolved, the characters have run out of life, and frankly the best ones leave me deflated knowing there's no more to the story. But the internet has BLOGS - which are by and about LIVE people, who exist NOW, whose lives are ongoing stories with twists to come so great no human author could have fit it all into a 'book'. Bloggers are my PEERS. They tell me their stories...and sometimes listen to mine...and then something never before seen in the history of the written word happens - our stories morph. They piggy-back off each other, and eventually become intertwined. There's truth in the line from "Wicked": "Because I knew you, I have been changed for good". Whether we support, anger, respect, or despise each other, we have had an impact on one another and anyone else who may have stumbled into our "storylines".
Which brings me to Friendships in Philly. If ,because of reading, books themselves became Francie's friends, it was reading that has begun to open a new world to me as well, centered on blogs and social networks. I began blogging for Invisible Illness Awareness Week 2009 (as per my first post, here), which is a national awareness effort pioneered by Lisa Copen, Founder of Rest Ministries. Lisa's annual event gave me the opportunity (and push) I needed to get off the ground. Right away, I stumbled across Julia, author of Reasonably Well - and I truly know that "because I know [her], I have been changed for good"! I see Julia as a more experienced and (believe it or not...) calmer, more peaceful version of myself (or at least who I want to be). I'm sure right now Julia and her loyal friend/companion/guardian Therese are already laughing at that concept, but believe you me - Julia's craziness is educated and responsible...mine, not always so much. But, I suppose that's what 'disgusting youth' will do to a person...but I digress:)
Julia blogs about everything - and never makes me depressed. Aside from her downright endorphin-inspiring recounts of BICJ run amok, schnauzers in control, and surprise appearances by cooked baby octopus, she manages to talk about problems without dragging you down. There's the middle ground posts - for example, escapades that are actually the product of brain fog that are presented in a way that makes the problem relatable but the outcome laughable. And even when RN Julia makes an appearance with scholarly articles about scientific studies of causes, treatments, and disease progression, I still feel that life is worth living. If it weren't for Julia, I guarantee I wouldn't still be blogging. And I'm thrilled to still be here because I've continued to meet amazing women in many stages of their lives, all willing to share their successes and mistakes as well as my emotional lurches!
Eventually, the social network effect introduced me to a woman who pulled me into a new network and a new title - WEGO Health is what I describe as Facebook for Health Activists (wadda ya know, I'm a Health Activist). Here, ambitious, bright people with any and every medical background imaginable electronically congregate with amazing results! Through my involvement with WEGO, I've already been given the opportunity to participate in a live panel in just a few weeks...and perhaps even more valuable to this Little Sjoggie...they brought my Julia to me:) Miss Julia (with unofficial life coach Therese) came to my dear Philly to shoot a special feature with a world reknowned Sjogren's expert (and one of my former doctors)...you can read more about her project at her blog linked above. After learning so much about each other through our blogs and other communications, we simply had to meet.
Before I knew it, this woman who existed only in my virtual world, who I abstractly knew really lived 3,000 miles from me but had never, ever imagined I'd meet, was in the middle of my stomping grounds. As usual, Julia had the perfect plan- we would all go to mass together then sup while pheverishly cheering on the Phillies! There's not much I'd rather do than share my beloved hometown church and head out to enjoy the game...even if Julia and Therese had the unfortunate luck of finding out what a true Philadelphia sports fan feels like when our boys narrowly lost the series.
I hope you'll indulge me for just one moment of sappiness...Shawn and I picked up our guests at their hotel in the city. I walked into the lobby and on cue, a dark bob popped out of a hidden corner of a sofa in the lobby...a smile spread across her face...and I swear it was one of those moments straight out of the movies. I finally got to see, in real life, this woman I was sure I already knew, and I surprised I managed to not cry. (And for the record, anyone who could pull off passing for a 30-something when I also pass for the same age group has a lot of nerve accusing me of 'disgusting youth'.)
Anyway, within moments the four of us were off and rambling, cramming as much bonding into a few hours as humanly possible. I learned so much from these two travellers - about them personally, their families, and technical information on everything from medical facts I should know to swapping awareness ideas. I suppose it's true that an age gap among us exists...but no one would know it. I'm sure our waiter assumed we're all friends perhaps from work or just close neighbors, people who have grown togther through shared proximity. Only we knew the far more amazing truth, that it was not proximity, but shared experiences that brought us all togther. Experiences, Sjogren's, the web, and of course God (all the more reason praising Him together was the perfect way to kick off our night)!
Granted, I am sad that I had to return Therese and Julia to their hotel and allow them to soar away. I would much rather that they would have been so captivated by the Philly suburbs they'd insist on moving here immediately, and send for their husbands to pack everything while they went house hunting:) Let's face it, I like having people close by! But I learned something so significant from this whole experience that it turned my potential depression into a minor buzz-kill - these women are real. They exist on this great big rock in the universe, just like me. And if they could get here, I can get there (or we can all get to a tropical resort serving mango margaritas and lemon drop martinis...not a bad plan if I say so myself...). And, if they could be brought to my doorstep as easily as a much-anticipated Amazon purchase by the grace of WEGO...well, the whole world is open! I'm going to that conference...I wonder who else I'll meet there! Maybe I'll meet someone down the line through WEGO or another effort that I didn't even know online before, and the whole thing could happen in reverse! It's amazing to me, there are opportunities out there I hadn't even imagined.
"Growing up spoiled a lot of things" (ch. 28) for Francie. In many ways, I can relate - major bills, family planning, life-altering decisions, and of course progressing chronic illnesses can make you feel this way. But if Julia can have such a vibrant life, full of friends, family, optimism, fun, and new opportunities every day, so can I.
Ever since being diagnosed, I've had a firm view on life. I want to have as many experiences as possible - to learn and do and feel everything I can. So I guess, I really am like Francie:
"Let me be something every minute of every hour of my life. Let me be gay; let me be sad. Let me be cold; let me be warm. Let me be hungry...have too much to eat. Let me be ragged or well dressed. Let me be sincere-be deceitful. Let me be truthful; let me be a liar. Let me be honorable and let me sin. Only let me be something every blessed minute. And when I sleep, let me dream all the time so that not one little piece of living is ever lost." (Ch. 48).
October 29, 2010
September 21, 2010
The Story of a Flare
Inspired by my flare-fried emotions and Simon & Garfunkel's "The Sound of Silence", this probably more poetry than a performance piece, but whatever it is, it's here for you.
Hello Illness, my old friend, I’ve come to fight with you again,
Because inflammation ever creeping, has stolen health from my safekeeping.
And the tumid, aching tendons I have strained
Still remain; with them, the need for patience.
In mental fog I softly groan, a haze induced by Prednisone,
Imprisoned in an unrelenting cramp, I dread the winter’s weather – cold and damp,
My eyes burn still, Sicca Syndrome worsened by sunlight
A Sjogren’s plight. And wearing thin is patience.
When through blurred vision I first saw, other people – many more,
People suffering without speaking, others passing by without listening,
Patients reaching out needing hope, support, and care.
If love’s out there, we’re running out of patience.
Our inner strength en masse we’ll show, despair fades when awareness grows.
See us now, right in front of you! We’re all around and everywhere with you!
A few can see me now, but so many move on by,
I heave a sigh, and search my soul for patience.
For a moment I watch the world, my former goals within it twirled,
Pretending that inside I’m not mourning the loss of plans that I had been forming.
I know I’m blessed by God in so many precious ways,
But still it stays – my endless need for patience.
Hello Illness, my old friend, I’ve come to fight with you again,
Because inflammation ever creeping, has stolen health from my safekeeping.
And the tumid, aching tendons I have strained
Still remain; with them, the need for patience.
In mental fog I softly groan, a haze induced by Prednisone,
Imprisoned in an unrelenting cramp, I dread the winter’s weather – cold and damp,
My eyes burn still, Sicca Syndrome worsened by sunlight
A Sjogren’s plight. And wearing thin is patience.
When through blurred vision I first saw, other people – many more,
People suffering without speaking, others passing by without listening,
Patients reaching out needing hope, support, and care.
If love’s out there, we’re running out of patience.
Our inner strength en masse we’ll show, despair fades when awareness grows.
See us now, right in front of you! We’re all around and everywhere with you!
A few can see me now, but so many move on by,
I heave a sigh, and search my soul for patience.
For a moment I watch the world, my former goals within it twirled,
Pretending that inside I’m not mourning the loss of plans that I had been forming.
I know I’m blessed by God in so many precious ways,
But still it stays – my endless need for patience.
August 30, 2010
Chronically Connected
It's virtues are extolled: immediate access to information, improved work/life balance by working from home, and the ability to connect with others around the globe at a minimal cost. It's also accused of great evils: removing the need for face-to-face communication, facilitating white collar crime, and leading to the muscular atrophy of an entire generation. What else could have this affect but the World Wide Web!
While it's true, the internet can and is used for the "wrong" reasons and with bad results, the same can be said of religion, airplanes, or freedom of the press. What's the common link among these ideas and inventions? They ultimately become tools in the hands of human beings - well-intentioned but imperfect Mankind.
But just as religion gives billions of people a framework for life, airplanes deliver food and supplies to disaster zones, and free press led to the birth of our nation, the internet gives millions the resources we need to improve our lives in ways never before imagined. It would have taken our unplugged ancestors a generation or two (or more) to assemble - let alone process - the volumes of information we can now find and search in just a few seconds.
This access is wonderful, and a gift I make use of many times each day. However it is not, perhaps, the greatest gift the internet provides.
Humans are social creatures, hard-wired to need interaction with others - also known as a 'community'. If you don't believe me, go ahead and use that powerful internet search tool to read about otherwise healthy babies who die in understaffed orphanages for lack of touch or how solitary confinement causes psychophysical distress by denying human interaction. Or, check out this scholarly article about the science underlying this phenomenon.
We seek to be both one of a million and one in a million; that is, we want to be simultaneously reassured we belong and that we are unique persons whom no one could replace. But we wouldn't know if either goal were met without KNOWING and RELATING TO other people! And so we join clubs then seek a leadership role, attend block parties and talk about our latest vacation, or play a team sport and dream of being named MVP. For the chronically ill, I've found that this mindset takes on a very specific form. We want to find others with the same symptoms or diagnosis as ourselves, and upon making this connection we immediately begin spouting off our personal stories, complete with symptom progressions, medications, prognosis, and views on the future.
Knowing that I am one of a million (or, in my case with Sjogren's, one of 4 million) Americans with my diagnosis is important to me. It means information may be available about how to cope with many of the problems I face, and that it's been around long enough for there to be data for use in framing a prognosis. Moreover, because I know other Sjogies exist, I am guaranteed to find people I can talk to who I know will understand what I mean when I try to describe weird symptoms or processes I go through, and if they understand that must mean I belong. At the same time, finding these people reaffirms that I am still one in (four) million - we may have the same diagnosis but none of us have exactly the same experience living with it. There's the obvious differences - severity of symptom progression, comorbid diagnoses, or age - and less obvious ones, e.g. personal stances on specific treatments or even reactions to the same medication.
To my point, social networks or interactions are part of human nature, and take on a prime importance when people are faced with challenges. Chronically ill persons face the same challenges as the rest of society, but must also cope with their special challenges every day at the same time. Therefore, it stands to reason that these people experience a greater need for - and find greater benefits in - social venues. And yet, social excursions often require people to do the very things that are problematic for this population. Mobility problems, unpredictible symptoms, extreme fatigue, and "brain fog" (or reduced ability to think logically) are just a few roadblocks. When added to the plethora of 'extras' most of us carry (medications, comfort aides, water bottles, sweaters, joint-support paraphenalia, etc), it rarely becomes worth the effort. And to top it off, a lot of chronic illnesses and the methods used to treat them make the patient susceptible to contagious illnesses such as colds, flus, and infections. It's a wonder we don't all become hermits!
But, without these social connections, we are left very vulnerable in every way. Ill or not, we must have information, access to resources, and support. We all generally find a way to get to the doctor or pharmacy and meet our physical needs, but for years we simply couldn't find a reasonable way to meet our emotional ones. Which brings us full circle, to the World Wide Web. Now, we can find each other. Now, we can join groups and discussion boards that will fit into our schedules instead of disrupting them. If I can't sleep at midnight but crash out at 2 in the afternoon, I can post something at night and read someone's response the next day without us needing to be present at the same time. Instead of being subject to the opinions and educational limitations of one doctor I find the energy to see, I can scour the web for more ideas and insight and take an active role in my care. And even to my own surprise, I can develop REAL relationships with people I've never met (and probably never will). A woman undergoing chemo in Alabama is now just as important to me as people who live in my town. Another woman 3,000 miles away was the first to tell me when she found my group in a newsletter (that I don't even receive and would never have seen on my own). And, I hope, my stories and advice may be positively influencing someone out there who might never have even pursued treatment if they hadn't heard that something could be done, or know that I care when the 'real' people in their lives turned their backs.
And so, to the many who are trying to unplug, I tip my hat and offer best wishes that they find the peace of mind connectivity may have stolen from them...and I turn, pick up my laptop and BlackBerry, and settle in to enjoy the gifts of being Chronically Connected.
While it's true, the internet can and is used for the "wrong" reasons and with bad results, the same can be said of religion, airplanes, or freedom of the press. What's the common link among these ideas and inventions? They ultimately become tools in the hands of human beings - well-intentioned but imperfect Mankind.
But just as religion gives billions of people a framework for life, airplanes deliver food and supplies to disaster zones, and free press led to the birth of our nation, the internet gives millions the resources we need to improve our lives in ways never before imagined. It would have taken our unplugged ancestors a generation or two (or more) to assemble - let alone process - the volumes of information we can now find and search in just a few seconds.
This access is wonderful, and a gift I make use of many times each day. However it is not, perhaps, the greatest gift the internet provides.
Humans are social creatures, hard-wired to need interaction with others - also known as a 'community'. If you don't believe me, go ahead and use that powerful internet search tool to read about otherwise healthy babies who die in understaffed orphanages for lack of touch or how solitary confinement causes psychophysical distress by denying human interaction. Or, check out this scholarly article about the science underlying this phenomenon.
We seek to be both one of a million and one in a million; that is, we want to be simultaneously reassured we belong and that we are unique persons whom no one could replace. But we wouldn't know if either goal were met without KNOWING and RELATING TO other people! And so we join clubs then seek a leadership role, attend block parties and talk about our latest vacation, or play a team sport and dream of being named MVP. For the chronically ill, I've found that this mindset takes on a very specific form. We want to find others with the same symptoms or diagnosis as ourselves, and upon making this connection we immediately begin spouting off our personal stories, complete with symptom progressions, medications, prognosis, and views on the future.
Knowing that I am one of a million (or, in my case with Sjogren's, one of 4 million) Americans with my diagnosis is important to me. It means information may be available about how to cope with many of the problems I face, and that it's been around long enough for there to be data for use in framing a prognosis. Moreover, because I know other Sjogies exist, I am guaranteed to find people I can talk to who I know will understand what I mean when I try to describe weird symptoms or processes I go through, and if they understand that must mean I belong. At the same time, finding these people reaffirms that I am still one in (four) million - we may have the same diagnosis but none of us have exactly the same experience living with it. There's the obvious differences - severity of symptom progression, comorbid diagnoses, or age - and less obvious ones, e.g. personal stances on specific treatments or even reactions to the same medication.
To my point, social networks or interactions are part of human nature, and take on a prime importance when people are faced with challenges. Chronically ill persons face the same challenges as the rest of society, but must also cope with their special challenges every day at the same time. Therefore, it stands to reason that these people experience a greater need for - and find greater benefits in - social venues. And yet, social excursions often require people to do the very things that are problematic for this population. Mobility problems, unpredictible symptoms, extreme fatigue, and "brain fog" (or reduced ability to think logically) are just a few roadblocks. When added to the plethora of 'extras' most of us carry (medications, comfort aides, water bottles, sweaters, joint-support paraphenalia, etc), it rarely becomes worth the effort. And to top it off, a lot of chronic illnesses and the methods used to treat them make the patient susceptible to contagious illnesses such as colds, flus, and infections. It's a wonder we don't all become hermits!
But, without these social connections, we are left very vulnerable in every way. Ill or not, we must have information, access to resources, and support. We all generally find a way to get to the doctor or pharmacy and meet our physical needs, but for years we simply couldn't find a reasonable way to meet our emotional ones. Which brings us full circle, to the World Wide Web. Now, we can find each other. Now, we can join groups and discussion boards that will fit into our schedules instead of disrupting them. If I can't sleep at midnight but crash out at 2 in the afternoon, I can post something at night and read someone's response the next day without us needing to be present at the same time. Instead of being subject to the opinions and educational limitations of one doctor I find the energy to see, I can scour the web for more ideas and insight and take an active role in my care. And even to my own surprise, I can develop REAL relationships with people I've never met (and probably never will). A woman undergoing chemo in Alabama is now just as important to me as people who live in my town. Another woman 3,000 miles away was the first to tell me when she found my group in a newsletter (that I don't even receive and would never have seen on my own). And, I hope, my stories and advice may be positively influencing someone out there who might never have even pursued treatment if they hadn't heard that something could be done, or know that I care when the 'real' people in their lives turned their backs.
And so, to the many who are trying to unplug, I tip my hat and offer best wishes that they find the peace of mind connectivity may have stolen from them...and I turn, pick up my laptop and BlackBerry, and settle in to enjoy the gifts of being Chronically Connected.
August 23, 2010
IIAW 2010: 30 Things...
You may recall, I began this blog ast September as part of National Invisible Chronic Illness Awareness Week (IIAW). Well, it's nearly that time again! This year, the National week will be September 13-19, 2010! As part of the kickoff, Lisa Copen (founder of both IIAW and Rest Ministries) has brought back the HUGELY popular survey about our unique experiences with chronic illnesses. I encourage you to fill this out for yourself (no matter what diagnoses you may have) and repost. If you do, remember to put a link to your post on Lisa's IIAW website!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Sjogren's Syndrome, Localized Scleroderma, Fibromyalgia, Dysautonomia, Osteoarthritis, Raynaud's Phenomenon.
2. I was diagnosed with it in the year: 2001 when I was 15
3. But I had symptoms since: 1988 when I was two
4. The biggest adjustment I've had to make is: I adjusted what I wanted to do with my life – now I'm focused on building UII into an established not-for-profit organization.
5. Most people assume: My age means my conditions don't affect me as much as they do older people.
6. The hardest part about mornings are: Moving. Most of the time I'm stiff and my upper back is messed up from the way I slept. Sometimes I have morning stomach aches and am very nauseas, especially if I woke up too early.
7. My favorite medical TV show is: I can tolerate Royal Pains but that's it.
8. A gadget I couldn't live without is: Microwavable heating pad.
9. The hardest part about nights are: Temperature and humidity changes from the daytime (could be getting better or worse, a change is hard no matter which direction).
10. Each day I take _9 (not counting pain killers)_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: had success with a combination of chiropractic adjustments, moist heat therapy, and mild electro-stimulation for my back (though the benefits were absolutely systemic). However, the practitioner I went to closed and I haven't found a doable replacement.
12. If I had to choose between an invisible illness or visible I would choose: I wouldn't pick solely based on visibility. Ask me about what the illness affects, I'd have an opinion. But the entire point here is that invisible illnesses are JUST AS debilitating as visible ones, not that they're MORE severe necessarily.
13. Regarding working and career: while I have revamped my long-term career goals to be focused on my conditions, in the meantime I'm working a demanding fulltime job. Most women I know with similar conditions are middle aged or older and had to give up their careers. I was diagnosed as a teenager and had to face what if I never got to start my career. I've managed to get to the starting line but am competing against smart young people usually without chronic complications, and every day I make it to work I know the rest may be numbered and my life could flip at any time.
14. People would be surprised to know: I doubt myself and question my limits every day. Everyone tells me (close friends and web acquaintances alike) that they can't understand how I do so much and I seem to have such energy – well, I don't say that as if it's some great power of mine. It's my deep seeded fear of what I won't be able to do tomorrow so I have to do it today. At least it cured my adolescent procrastination…
15. The hardest thing to accept about my new reality has been: the roadblock it creates to forming friendships the traditional ways – though it has been the reason I learned just how great online networks can be for building real relationships!
16. Something I never thought I could do with my illness that I did was: my job. I'm an auditor, which means 40 hours per slow week, and 60+ hours per busy-season week. Every day I do tasks that don't require a second thought for other people but are a challenge for me, from traveling to carrying files around all day.
17. The commercials about my illness: don't exist. Well, there's a few about Fibro (which rely on sparkly images to indicate nerve involvement) and osteoarthritis (which show hunched over women who straighten up when taking new medicine). I've never once seen a commercial for Sjogren's, Scleroderma, Raynaud's, or Dysautonomia. Oh my.
18. Something I really miss doing since I was diagnosed is: walking in the rain. I actually don't like storms, but if I had to get caught in a basic downpour or drizzle it was no big deal and could be kind of fun. Now I go to great lengths to avoid getting wet in the rain, and even so have to combat the joint problems rain brings.
19. It was really hard to have to give up: color guard and singing. In high school, I was a strong member of a competing color guard and had to skip the year I was diagnosed. While I finished out the last two years in high school, it was by the skin of my teeth and I couldn't continue in college. Singing, which had always been one of my favorite things in life, lasted a year into my college experience, but after that I began to find my Sjogren's dryness has damaged my vocal chords/throat just enough to make formally singing in a group impossible.
20. A new hobby I have taken up since my diagnosis is: blogging? Is that a hobby? I was diagnosed very young so it's hard to say, because I think I would have gone through many interests in the past 9 years anyway.
21. If I could have one day of feeling normal again I would: I don't know what that feels like. I had joint, eye, and mouth symptoms going back into my early childhood among other problems. However, if I could have a time of physical abilities back, I would spin a color guard show one more time.
22. My illness has taught me: to gear my life toward others and be proactive. If I go through something bad, I make myself ask "how could people who will face this next be helped, and what do I need to do to make that happen".
23. Want to know a secret? One thing people say that gets under my skin is: "well at least you don't have ____". I've said it before and I'll say it again – if you total your car in a horrendous crash and break both your legs, yes, it's true it could be worse because at least you're alive – but you still have two broken legs! Why do people think just because it could be worse it isn't bad at all?!
24. But I love it when people: ASK ME QUESTIONS (for information, not to 'prove me wrong'). I love when people ask me what my conditions are, how they affect me, how a specific situation might impact me, what I do about problems, how I want them to help me, etc.
25. My favorite motto, scripture, quote that gets me through tough times is: I have to be honest, I have different ones for different situations. I have a ring that says "Live His Word" to remind me to have good motives. I have a bracelet that says "The greatest thing we can do for our Heavenly Father is to love His children" which reminds me to turn the other cheek. The quote by Shelby in Steel Magnolias sums up my fears about my life "I need your support. I'd rather have 30 minutes of wonderful than a lifetime of nothing special". And, the Robert Ingersoll quote, "it is a blessed thing that in every age someone has had enough individuality and courage to stand by his own convictions," keeps me from getting jaded.
26. When someone is diagnosed I'd like to tell them: do your research, and hold to your priorities. While you can't put your head in the sand, you don't have to give up everything that makes you happy either – if spinning color guard or going to the shore or hiking mountains is what makes you happy, gear your health plan toward that goal instead of telling yourself it's gone forever.
27. Something that has surprised me about living with an illness is: the self-respect it helps teach me. Yes, I often feel bad about myself, hate my body, or feel guilty for how I impact those around me…but I've learned that it doesn't mean I have to put up with cruelty, being marginalized, or being used. I have so much to do and so little time and resources in which to do it, I don't have time to be bullied.
28. The nicest thing someone did for me when I wasn't feeling well was: my family does wonderful things all the time, but my favorite "little thing" is this: my best friend always asks me where I hurt today before she hugs me. It could be months since we've seen each other, she could be in the middle of a crisis, and everyone around us can be acting crazy, but she doesn't lay a finger on me until she knows how to hug me without hurting me.
29. I'm involved with Invisible Illness Week because: it takes the issues I work with every day (personally and for UII) and builds them into a frenzy on the national stage!
30. The fact that you read this list makes me feel: Visible.
Are you blogging for Invisible Illness Week? Be sure to sign up and let us know at Bloggers Unite!
July 14, 2010
Some New Options
Hi Everyone!
Please forgive me, I've been quite remiss by not posting lately. I'll spare you the detailed excuse but suffice it to say it includes a flare and continuing exhaustion, along with moodiness, summer activities, and emotional fizzle. But, naturally, God wasn't going to let me off the hook that easily. It's my job to pound away, and I think a few signs were sent my way to remind me.
I'll be back (yes, I promise, though I honestly don't know if it'll be soon...) with updates on some exciting things like the very cool project I'm working on with my firm and Light the Night (this one's pretty darn good if I do say so myself - if I can get off my duff and do some leg work of course), and my new ideas for UII itself.
However, in the meantime, I have a GEM for you. My loudest wake-up call was a bit ironic, I think. At the request of a "sickie" friend on Facebook (i.e., someone who I don't know in real life but have connected with through the groups for those of us with illnesses), I filled out a little online survey about being a Sjoggie. I didn't think much of it, and besides it's not so hard to get me to throw in my two cents (I told my mom I think I walk around with a couple pennies in each pocket just in case an opportunity comes along). Anyway, a little bit later I got a call from the organization who did the survery. Apparently I'm good for something - based on my answers and some further discussion we had on the phone, they felt I'd be a good participant for an upcoming (via phone + internet) focus group, which is mostly about Sjogren's but also aimed at "Health Activists" (waddaya know, I'm an Activist Leader now). As part of this project, they asked me to join a new online community "WEGO Health". I figured why not, plus if I didn't like it I'd just cancel after the focus group. It's actually pretty cool - it feels a good bit like a toned-down version of Facebook (yes, in a good way), and it's the first time I've been around quite so many people passionate about health topics the way the few of us are around here. I've only joined one group so far (for Autoimmune Diseases) and participated in a couple discussions, but I think it's pretty cool. It's also right in line for UII, because it's focused on bringing together health activists to magnify our impact and fascilate knowledge-sharing!
Anyway, on this network you can put up blog posts. A woman, Amy K, put up a post which references several other posts (see, sharing) and discusses some of the emotional and social roadblocks to dealing with invisible illnesses, particularly regarding getting a diagnosis. I know this is a topic familiar to all of us, but I think this is worth looking at. Something interesting I've noticed (from the post but also from comments on it) is that in commiserating (which we sometimes do too much), people have also been identifying tips and tricks that many of us should try in our own doctor visits. Amy also asked us to share the post, to really spread information. I asked her permission to link it here, and she said of course - on the condition that I link back to the WEGO Health discussion where it exists. Who could say no to that! So, here is a link to this useful post on a really cool health-centric networking site, for your consideration: "An Opportunity for Kindness". Bon apetite!
P.S. - if any of you Sjoggies out there might be open to taking the survey and possibly doing the focus group with me, please let me know ASAP so I can give you information! The more participants there are the better the results!!
Please forgive me, I've been quite remiss by not posting lately. I'll spare you the detailed excuse but suffice it to say it includes a flare and continuing exhaustion, along with moodiness, summer activities, and emotional fizzle. But, naturally, God wasn't going to let me off the hook that easily. It's my job to pound away, and I think a few signs were sent my way to remind me.
I'll be back (yes, I promise, though I honestly don't know if it'll be soon...) with updates on some exciting things like the very cool project I'm working on with my firm and Light the Night (this one's pretty darn good if I do say so myself - if I can get off my duff and do some leg work of course), and my new ideas for UII itself.
However, in the meantime, I have a GEM for you. My loudest wake-up call was a bit ironic, I think. At the request of a "sickie" friend on Facebook (i.e., someone who I don't know in real life but have connected with through the groups for those of us with illnesses), I filled out a little online survey about being a Sjoggie. I didn't think much of it, and besides it's not so hard to get me to throw in my two cents (I told my mom I think I walk around with a couple pennies in each pocket just in case an opportunity comes along). Anyway, a little bit later I got a call from the organization who did the survery. Apparently I'm good for something - based on my answers and some further discussion we had on the phone, they felt I'd be a good participant for an upcoming (via phone + internet) focus group, which is mostly about Sjogren's but also aimed at "Health Activists" (waddaya know, I'm an Activist Leader now). As part of this project, they asked me to join a new online community "WEGO Health". I figured why not, plus if I didn't like it I'd just cancel after the focus group. It's actually pretty cool - it feels a good bit like a toned-down version of Facebook (yes, in a good way), and it's the first time I've been around quite so many people passionate about health topics the way the few of us are around here. I've only joined one group so far (for Autoimmune Diseases) and participated in a couple discussions, but I think it's pretty cool. It's also right in line for UII, because it's focused on bringing together health activists to magnify our impact and fascilate knowledge-sharing!
Anyway, on this network you can put up blog posts. A woman, Amy K, put up a post which references several other posts (see, sharing) and discusses some of the emotional and social roadblocks to dealing with invisible illnesses, particularly regarding getting a diagnosis. I know this is a topic familiar to all of us, but I think this is worth looking at. Something interesting I've noticed (from the post but also from comments on it) is that in commiserating (which we sometimes do too much), people have also been identifying tips and tricks that many of us should try in our own doctor visits. Amy also asked us to share the post, to really spread information. I asked her permission to link it here, and she said of course - on the condition that I link back to the WEGO Health discussion where it exists. Who could say no to that! So, here is a link to this useful post on a really cool health-centric networking site, for your consideration: "An Opportunity for Kindness". Bon apetite!
P.S. - if any of you Sjoggies out there might be open to taking the survey and possibly doing the focus group with me, please let me know ASAP so I can give you information! The more participants there are the better the results!!
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