Who Gets It?!

Ok a quick one for you today - a poll, in fact (yes, you have to engage your brain, it'll be ok).  I encourage you to even pose the question in your own blogs or communities and see what answers you get - link back here for us to all compile and share them!

Myself (left) and my best friend (right) at the 2010 SSF Walkabout!

How do you know someone "gets it"?  What things do people say or do that let you know they truly understand YOU as a person with chronic challenges and all the individualized quirks that brings?  Some things may be funny (such as inside jokes between you and your friends), subtle (when someone sees you coming and perhaps moves things to be arranged in a way convenient for your needs without saying anything), or overt (a note from a friend or coworker telling you that they understand something you go through and what it takes for you to work through it).

Here are some of the ways I know:

• My favorite right now - today my best friend left me a comment on Facebook saying she was nauseus, hungry, and freezing cold yesterday; she felt like me:)  She obviously knows what I go through on a daily basis, and wasn't challenging or belittling me, simply relating.  She GETS IT!
• This same best friend ALWAYS asks me what hurts today before giving me a bear hug.  She knows on a typical day some part of my body is in pain or close to it and can't withstand her enthusiastic embrace.  She GETS IT!
• When I go to my mom's house, she always offers me foods that are easy to chew.  She knows that's one of those problems that seems so minor but is so pervasive, and makes sure I have an option that won't put me in pain or lockjaw the rest of the day.  She GETS IT!
• My husband reminds me every night to take my medicine, makes sure I have something to drink to take them with, and asks what temperature I want my side of the heated mattress pad (AWESOME gift I got, by the way) set at.  He knows I sometimes get into bed and start to crash having forgotten my medicine and that taking them regularly is key to some kind of stability, that I'll forget to get myself a drink to take them with, and that if the bed is warmed before I get to it my hips will relax faster and I'll be in less pain.  He GETS IT!

There are a million more, and I haven't even touched on people I work with, my extended family, or the cool people I connect with online!  So, share with me - how do YOU know when someone GETS IT?!

P.S. - Look for my next post in the days to come, it will be a special GUEST post!  Also, please let me know if you're interested in being a guest blogger for UII.  Since this is my busy season at work, it's a great time to work across blogger boundaries and get some of your thoughts out there for my communities to hear:)

Living Well with Chronic Illnesses

As you may know, I began blogging in September 2009 for National Invisible Illness Awareness Week.  This is an annual national project to bring awareness to the millions of Americans who live with invisible illnesses day in and day out.  This past year, event founder, organizer, and year-round activist Lisa Copen took a new direction, and made it a week about reaching out to those who are not just invisible but also silent; those who may not have known all the resources and support available to them.  (Read more about Lisa, her organization Rest Ministries, and IIAW news here.)

As part of her efforts to draw people - patients as well as the public at large - to her site and this life-changing cause, Lisa reached out to some of her friends and compiled an eBook with with tips for people with chronic/invisible illnesses from 20 'experts'!  (I put experts in quotes because she included me and I'm not sure what I'm an expert on...)  The book was available as a free down load to people when they signed up for daily emails about the event.

In the past few months I've made a lot of new friends online, and with the photography project with Villanova, traffic to my blog has hit an all-time high!  So, I thought it would be a good idea to actually post something useful for all my new readers:)  Once in a while, I have to actually write something useful, right?  So, here are the 9 tips I contributed to Lisa's eBook in September 2010.  If you want to read the other 254 tips, you'll have to go to Lisa's site (linked above) to learn more:)

9 Tips for Living YOUR Life with a Chronic Illness:

1. Redefine what “control” means to you. To me, ‘control’ meant I would decide what I would do and when I would do it – and my disease would have nothing to say about it. Ultimately, I realized that ignoring my special needs was giving control over to my conditions, because I would eventually push myself into a flare. Now I’ve regained ‘control’ by doing the things that keep me functioning – such as using sunscreen or wearing gloves even for quick trips outside – so I can do the things I want.

2. “Do what you can, while you can, so you can continue.” I can’t run, do jumping jacks, or take a step class – but (on a good day) I can walk, bike, or do yoga. Some people have misunderstood my exercise on one day to mean I’m ‘faking’ illness on other days, so I try to explain that by walking on days I can handle it, I’m improving my joints so I can continue walking in days to come. Find what abilities you still have and be sure to use them in ways that improve your prognosis in the long run!

3. Check out teaching hospitals when looking for a specialist. Hospitals affiliated with educational institutions often have doctors versed in the most recent developments, those who have a special interest in specific conditions, and those who are most likely to have an open mind to information you may provide. While not a guarantee, a teaching hospital can be a great resource for finding a doctor who will work with you.

4. Insist that doctors explain treatments to you (including prescriptions) until you understand it. If you can’t answer your friend’s question about how a drug or treatment will help your condition, you shouldn’t be taking or doing it! Asking your doctor isn’t enough if you don’t understand the answer, so insist that your doctor keeps explaining it and uses language you can understand until you are comfortable with the decision.

5. When asking for accommodations, try to suggest another way you can contribute. I had to ask for an accommodation at work to reduce my out-of-town travel and felt nervous how this might impact my job. So, I made sure to mention other ways I can still contribute something special, such as working on recruitment projects or with our “disability network.” These suggestions will show people that you are not looking for an easy out but rather are trying to do the best job you can with your unique needs, and make the changes feel more like collaboration than accommodations.

6. Request copies of all test results (such as blood labs, x-rays, MRI / CT scans, etc.). We all know how stressful it can be to change doctors, or how hard it can be to coordinate treatment among multiple doctors. Having a copy of things such as recent tests will make this process much easier. And remember, your health records are yours by law and you have a right to these copies (though you may have to make a reasonable advance request).

7. Ask your specialist what you should do if you have an urgent question between appointments. Many chronic conditions are not considered urgent care issues (no matter how pressing symptoms may feel to us at times), and so many specialists are unavailable outside of business hours or may lack the ability to accommodate a last-minute appointment. Ask your doctor during one of your appointments how you can contact them with a question between appointments. Many doctors now have email accounts from their affiliated hospital and will readily provide them to you.

8. Learn your family medical history. Research your family’s medical history (specific conditions people had, how you are related, and relevant details), then organize and interpret the information to see how genetic traits could impact you or your children. Chronic illnesses often belong to “families” of related conditions and knowing what is in your bloodline and how it manifested could save a lot of time in getting a diagnosis and effective treatment. Remember to share the information with your family!

9. Have no regrets – on your terms. You know how quickly your life can change – don’t waste a moment of it regretting something you did in the past. If you take the care to be as educated as possible and identify your priorities/passions, even decisions that had unpleasant outcomes will have served a purpose.

'My Optimal Health Club' - Online Help Finding Fullfillment

Trish, the amazing woman who already gave her life meaning in a way that fits her needs, has coached many on how to do the same, and most impressively - managed to help me create a UII logo I LIKED - is at it again! Check out her new program which makes personal life coaching for people with disabilities or chronic illnesses accessible to the masses. And after all, isn't that what we all want - people who've walked in our shoes to help us stand a little taller?

http://www.icontact-archive.com/qU9pdYSPU_IOn5c1AgYw1UAnIRsMFgy5?w=1&sms_ss=blogger&at_xt=4d432be823c6baa0%2C0

They Shoot Moody Women, Don't They?

You may have seen my posts on Facebook, Twitter, or WEGO Health tonight about the fire alarm that was set off in my office building, which ultimately forced me to walk down stairs from the 30th floor nonstop carrying my bag...in heels.  Or maybe about how while trying to recoup on the couch tonight, I spilled the milk my helpful husband and gotten me (you know, to go with my cookies...), and soaked not only myself and the seat, but also my BlackBerry (which is now residing in its own biosphere of uncooked rice).  Or, perhaps you were my poor best friend who tried to call me in a chipper mood and finally had to give in to my crankiness and let me off the phone.  (Yes, this was before the phone got a milk+honey treatment minus the honey.)

Basically, if you had the great good luck tonight of passing me on the street you probably got a shiver and decided to keep moving.  I am in. a. mood., as I like to put it.  And honestly, I don't think it's altogether unwarranted.  That futile trip down 30 floors was not only caused by BS (it wasn't a fire, but a burst water pipe in a separate company on the corner of the first floor of the building), and not only perpetuated by BS (property management was supposed to come on the PA system and tell us either "it's a real problem, get out" or "it's not an emergency, hang out" or "false alarm, have a seat")...but REALLY messed me up.  As many of you know, Fibromyalgia does very angry things to tendons and muscles, especially around joints, and walking down all those stairs (again, in HEELS) really messed mine up (knees and hips).  I also messed up my back standing in the stairwell for around 20 minutes before we actually started our way down.  Last night I was up crying because of unexplained backpain and ended up taking both muscle relaxers and advil I had tried to skip...I really don't know if I stand a chance tonight.  And we won't get into details of trying to stop shaking, trying to avoid falling down when my knee went from locked to buckled, and using SEPTA (Philly's mass transit system) in the wake of that fiasco.  When I spilled my milk, I had to change out of my favorite warm super-soft fleece pajamas Shawn gave me as a gift, and when I found my BlackBerry suffered more damage than we thought (and WHY do phones insist on seeming ok for the first 10 minutes, THEN get the creepy white striped screen?!), I really got close to panic mode.  Rayna (my best friend) and I may be "twins" most of the time...but occassionally when one of us is pissy the other just has to step back and let the crankpot get it out of her system...today was one of my turns. 

Thinking about how this day is just not a good one (even Shawn suffered, he had to go out in the single-digit temps at 5:30 this morning to help get the ambulance out when it landed in the mud after a call) reminded me of a thought that occured to me a little while ago.  After a somewhat typical round with my family of "you're cranky" "no I'm not, I always get upset about this same thing" "yeah but not this upset" "YES I DO", I pondered how we are told to deal with our emotions.

As teens and young adults under our parents' guidance, we are told to live in the moment and acknowledge or release our feelings.  Don't bottle things up.  Let it out now when it's a mole hill and it won't become a mountain.  Teachers, older coworkers, even friends' parents join in the chorus.

But when I do that - speak up about what's bothering me and acknowledge my feelings in the moment as they happen - d'you know what they call it?  Mood swings.

Yep, if I'm chattering along happily and stop to point out that some stupid joke a family member made about me isn't funny and hurts my feelings, my mom pops up with her favorite taunt "heads up, mood swing!".  Har, har har.  So funny I forgot to laugh.  No really, I forgot, Mom.  (I love my mom, I really do, and I'd be lost without her...but she has a couple jokes she uses to just get right under my skin faster than a splinter from a chopstick.)  And within moments my innocent little "gee this bugs me" release in the moment becomes a hormone-filled water balloon of a mood swing flung at someone's head.  I guess you might have figured out by now, I'm not the only one with a penchant for hyperboles in my family, and we frequently use them on each other.

I don't think this is fair.  Using tonight as an example, I really could have EASILY blasted everyone who looked my way; bitten off every head I could reach; even spouted off a shocking collection of pungent explicatives in my posts online at the greater world wide web at large.  I wasn't a saint - as I said, Rayna had to finally cut her losses with my bad attitude, and Shawn's gotten a couple of terse answers to some ill-timed questions.  But I haven't told anyone off, haven't 'quit life', and haven't foul-mouthed my way off of people's follow lists.  I've just expressed the facts about why I'm in a sour mood, with a little sarcasm thrown in for my own amusement. 

Sometimes we have sucky days.  Yes, on occassion it lasts far more than one day, too.  I say let's just acknowledge them for what they are.  Why pretend EVERYTHING has a silver lining?  Why bury my frustration and feelings about the general "unfairness" of life from time to time?  As long as I can see it clearly isn't some person's fault and therefore no one deserves to suffer my wrath about it...what's so wrong with saying "holy s*%tfest, Batman, this has been a LOSER day"?

I say 'nothing'!  I say 'Carpe Crappium' - seize the bulls*%t - and fling it away!  It doesn't mean I've fallen into some deep depression or some dark place mentally - believe me, there are far more tangible and significant changes you'll see if that happens.  Maybe if I feel free to verbally cast off the roadkill sludge I feel life has slopped on me today I'll be able to stay on this side of the mental health spectrum.  God knows there are enough ways people land in that mess (chemical, genetic, etc) that I don't need to ADD to the problem by stressing about wanting to 'release' my frustration but not wanting to be labelled "moody".  And I'll even go you one further...I want to vent it without getting into a competition with you!  Tell my why you sympathize, but end with "so I get why you're upset", not "now THAT was a bad day".  If you really want to tell me, hold it for tomorrow, when I can get back outside myself and hear it with concern for you instead of just pity for myself.

So, for all the "moody", "emotional", "hormonal", and "hypersensitive" women (and men) of the world, this is for you: MY DAY SUCKED AND I FEEL FREE TO LET YOU KNOW!

Ahhhhh.  Yes.  That's better.  Goodnight, see you in a new light tomorrow!  (Hopefully then I'll be back in a frame of mind to tell you the AMAZING things that are happening with the UII+VU Photography project:))

Community Cookies

(If you're looking for (or are interested in) the photo project information, please scroll down to the previous entry or click here to be taken to that post.)

WEGO Health has a monthly Blog Carnival, wherein they invite us all to share a blog post based on a specific topic or prompt.  I was particularly interested in this month's topic, because of a takeout meal I had on my first day back at work this year.

That day, I went out to the previous client I had worked on to clear up some documentation and since we stayed late, we ordered dinner from a local Chinese restauarant.  Being one who enjoys fun little traditions, I insisted that we open our fortune cookies for a quick giggle.  When I cracked open my cookie and slipped out the small rectangle, I certainly didn't expect the 10-word prediction that stared back at me:

"You will be recognized and honored as a community leader."

Why, thank you little slip of paper!  What an inspiration you are - and just the encouragement I needed!
You see, the next day I had a meeting scheduled with the head of our office - a man responsible for the entire 800+ person operation in Philly as well as being involved in firm activities at a national level, and who literally won Father of the Year on top of it.  I was meeting with him to discuss the Disability Network and how to give it some fresh life, enthusiasm, and ways he could help.  This may have been the only time I've been that nervous before a presentation since the 7th grade.
(As a note, the meeting was an absolute success.  I'll write a separate post about that and the rest of my recent activism activities.)

My little 'fortune' proved to be more than just the usual silly fun I usually expect.  In the first two weeks of this year, I had two major meetings with high-ups at work (including the one above) about the Disability Network AND other new related projects, began putting together a great awareness project (the photo display from my previous entry) to go up at Villanova in early February, developed a panel presentation for February 22nd, booked a pre-interview chat and radio 'featured guest' spot for early March, signed on for another activist panel with WEGO for May 4, and have the SSF Walkabout on May 7.  Yeah, I'd say we're off to an amazing (and manic) start!

Since my year kicked off with what may well be a prophetic fortune in my cookie, WEGO's January prompt "3 Fortune Cookies" certainly caught my attention!  (You can read the entire prompt, as well as see links to other people's posts, here.)

And so, dear readers, here are my three "fortune cookie slips" for you, me, and our community this year!

1. “Power comes from who you are, not what you have, and the transformation starts with how you allow others to treat you.” ~Suze Orman

 You are your own first, best, and most powerful advocate.  Even when accepting help and support from others, you are steering your own ship.  That of course means telling people your needs, seeking information, and insisting on getting what you fairly deserve.  But it also means controlling how you let people treat you!  Just because (for instance) someone is processing your application for disability payments or moving from a handicapped spot they blocked while unloading a vehicle doesn't mean they have any right to treat you badly.  The same is true for doctors and healthcare professionals, religious leaders, even friends and family.  Those close to you may need to share their own feelings about what you go through and how it affects them, but even then they should respect that you are still a person with feelings and it is not acceptable to treat you like a burden or idiot.  People aren't perfect and from time to time they're going to slip and say or do something hurtful to you - and it is then YOUR job to let them know it's not ok.  If all else fails, you always have the option to remove yourself from their company.  Insisting that others treat you right will ultimately remind YOU of your own worth and the power you have in your own life - no matter what chronic battle you face!


2. “I am successful today because I had a friend who believed in me and I didn’t have the heart to let him down” ~Abraham Lincoln

If you want to learn a new skill, travel to a new place, achieve a career goal, or realize a personal one, it's going to take confidence in yourself.  However, we all know how easy it is to lose that confidence when living with a chronic problem.  If your problem never goes away, how can you see your way around it, afterall?  The fortunate truth is that while yes, you probably will have to change or eliminate certain plans you had for yourself, they don't all have to go out the window, and there are often ways to accomplish things you aren't considering.  Thinking outside the box (and especially tapping into the brainstorming power of a group of people) will often get you where you want to be.  But if you're unsure of your own abilities, it's easy to feel overwhelmed and alone, and give up.  That's when we most need the support of our friends.  I'm very lucky, my husband, mother, and best friend are ALWAYS right behind me with pompoms at the ready - they are my personal fan club!  I know many chronically ill people aren't as fortunate - and please understand I have people around me who are completely unsupportive too (I just don't keep them around me for long).  But corny as it sounds, if you're reading this post, you do have a friend who believes in you. In fact, you have a couple dozen people who believe in you, because all of my followers are optimistic people who love to buoy each other up!  We know that it is only by helping and supporting each other than any of us will see any positive change, and that means we WANT you to succeed too!  And not only to we want it, but we've seen each other do amazing things and KNOW that you can be amazing.  We BELIEVE in you - and if you want proof, all you have to do is let us know what your fear is and we'll be right there to hold your hand.  The only way you could let us down is by giving up - so don't!

3. "There is no more satisfying sound than that of wheels in motion."

This was the thought that went through my head the other day.  I had just come from one of those meetings and knew there were a lot of action items in the works.  I had my to do list, as did a few other people, and things were happening.  Usually we try to take a moment after a project, event, or initiative is complete to enjoy the fruits of our labors - and certainly that has a lot of merrit.  But sometimes it makes me feel a little deflated, kind of the way many people feel after the holidays when the fun and excitement they've anticipated is over and all that seems to be ahead is returning to 'normal' life.  I still reflect on things that are finished to consider a job well-done, but my favorite time in the process to pause and enjoy is when things are just starting or a flurry of activity is in-process.  There is so much hope, so much potential for what can come out of the activity going on around me - and I love that feeling.  For me, it's when the wheels have begun to move that there is the most promise and excitement.  And, in recent endeavors, those wheels have carried more than just my own efforts.  There have been other people working with me on projects, and that takes my satisfaction to a whole new level.  There's no room for let-downs or disappointment at this stage; there's nothing yet that 'could have been better', no 'room for improvement'.  That will come later, when we take stock after a project/event of how to do it more efficiently and effectively next time.  It's an important part of the process and even has a hopeful aspect, in thinking ahead to an even brighter future...but while the wheels are still spinning, there is ONLY a bright future and nothing yet exists which is imperfect.  Think of it as a way of counting your blessings or taking stock in the joys in your life.  If wheels are in motion, you are not stagnant.  This is my favorite feeling of all.

(If you're looking for (or are interested in) the photo project information, please scroll down to the previous entry or click here to be taken to that post.)