January 28, 2011

'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?


January 25, 2011

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:))

January 16, 2011

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.)

January 8, 2011

Call to Action: Pics for Project with Villanova University

UII is working with Villanova University on a groundbreaking project!  Nursing students at the University will be researching what chronic/invisible conditions are present on campus, and doing projects on them and the effects they can have on body image!  This will be presented in combination with an existing program - "Love the Skin You're In", a body-image focused fashion show (held this year on February 7).

At the University's request, UII is coordinating a live panel discussion, which will take place on February 22.  In addition, we have decided to develop a visual display to accompany the fashion show (there will be many displays with body image and health information, as well as the student projects).  This display will then 'travel' the campus as promotion for the panel discussion!  That means at LEAST two full weeks of exposure raising awareness of chronic and invisible illnesses on a campus of nearly 10,000 students, staff, and faculty!

But to make the display a reality, we need YOU!  We are asking people from around the country (and around the globe) to send in your pictures showing the 'hidden' aspects of the conditions you live with, such as:
  • Good health days (put together, well rested, makeup and hair done, etc) versus flare days (blotchy skin, rashes, exhaustion, oily unwashed hair, and so on),
  • Scars, hair loss, patches on skin, or other permanent 'marks' of your condition(s), or
  • Revealing the hidden devices you use (insulin pumps, prosthetics, etc)

See the bottom of this post for a list of ideas, but use your life for inspiration!  The sky's the limit.  Our goal is to show what lies below the surface; what we really look like in the throes of our conditions.  Our battle scars, if you will.  Also, take an artistic license...black and white, close ups, high or low angles...anything that emphasises your subject is great!

General information:
  • The deadline to submit your photos is Sunday, January 30; however, the earlier the better as the pictures will need to go through at least two reviews before being sent off to be printed.  I will let you know if we are able to extend the deadline.
  • Pictures should be submitted via email if possible.  Please contact me if this is a problem and we'll discuss our options.
  • When submitting pictures, please include the name of the condition, issue, or device, and if you want your name to be listed or the photo to be used anonymously (see below).
  • We would like to represent a wide variety of conditions that are chronic and/or "invisible" in nature.  If you are unsure if your subject is appropriate, please ask me and we'll discuss it.  Most conditions will be relevant; see list of examples below.
  • Pictures should show the 'truth', but please be tasteful - use common sense, if you wouldn't want to show your grandmother, don't show it to us.
  • All pictures will be reviewed for appropriateness and space restrictions first by me, then by staff from the University's Office for Health Promotion.  We retain the final decision on which pictures will be included.
  • Please indicate if you wish to have your name listed as a contributor.  If you so desire, we will use your picture anonymously.  No picture will be individually identified with a name, but we will provide a list of contributors who wish to be included somewhere with the display.
  • As this is a Catholic University, please understand you may be included in prayer intentions as a participant in the project (whether by name or anonymously).
  • We will try to let you know if we wish to use the picture again somewhere in the future; however, depending on the logistics of tracking all the photographs, your submission will imply your consent for future use of the image for educational and/or awareness purposes.
  • No information will be shared (other than your name, if you elect to be listed); your email address and any other identifying information will be kept private.
  • I will be posting pictures and perhaps video of the display and event online when available.
  • I will also try to put together a handout or list to go on the school's website of resources and communities students can look into.  If you wish to have a site or community listed, please send me the information so I may review it beforehand.
  • Don't forget to send a "healthy" or "normal" picture as well (if possible), so we can show the contrast between the face we choose to present to the world and the one we see in our own mirror!

Examples of Ideas for Pictures (this is just a list of IDEAS; please feel free to use other ideas):

  • A profile picture (like the one I use - makeup on, hair done, in a formal suit), contrasted against
    •  the bald spot I usually cover (from Localized Scleroderma), or
    • of myself in bed totally wiped out with oily hair (because I'm too exhausted to wash it) and pale, blotchy skin with swollen parotid glands 
  • A person in an outfit which hides an insulin pump, contrasted against
    • them lifting the clothing to reveal the pump and where it enters their body
  • A person at an average weight having fun and laughing, contrasted against
    • protruding ribs, rolls of fat, hair loss, or brittle nails (for someone with an eating disorder)
  • Scars (from surgery, self-injury, or disease progression)
  • Patches on your skin (such as scaly patches, red marks, ruddy patches)
  • Rashes
  • Mouth ulcers, tongue lesions, severely chapped/sore lips
  • Inflamed joints
  • Discolored or misshapen extremities
  • Hives
  • With-versus-without a prosthetic (such as standing on two legs then the same pose with one fake leg missing)
  • Devices which symbolize something about your life with this condition (for example, I might use an array of eye drops for varying levels of dryness or the denture cream I used to hold in a temporary crown on a tooth destroyed by dry mouth), such as:
    • mobility aides
    • joint support devices
    • testing supplies (such as for diabetics)
    • medical paraphernalia (such as syringes)
    • specialized furniture
I have created a special email address for this project (which I may continue using in the future):
Please send all photos, information, and inquiries to uii.JennyP@gmail.com (that's uii [dot] JennyP [at] gmail [dot] com).

COUNTLESS conditions fall in the umbrella of Chronic and /or Invisible Illnesses.  A VERY brief list of conditions follows (this is NOT an exhaustive list by any means):
  • Autoimmune diseases (Sjogren's, RA, MS, Lupus, etc)
  • Diabetes
  • Pain conditions (Fibromyalgia, etc)
  • Chronic Fatigue Syndrome
  • Gastrointestinal diseases (Crohn's, IBS, GERD, etc)
  • Mental health / emotional / behavioral conditions (Autism, Depression, Bi-Polar, Anxiety, Schizophrenia, etc)
  • Cardiopulmonary diseases (heart disease, pulmonary embolisms, Asthma, etc)
  • Cancers
  • Chromosomal disorders
  • Musculoskeletal conditions (Osteoporosis/osteoarthritis, etc)
  • Neurological diseases (Parkinson's, ALS, etc)
  • Severe allergies (Celiac, other specific foods, etc)