March 29, 2011

A Sjoggie's Night Out

Web Radio Appearance Rescheduled
For anyone who may have missed the can still 'hear me hear me' on web 2 weeks.  Trish, the lovely lady who hosts the show, has not quite recovered from a recent procedure and we had to reschedule.  We have now booked my guest appearance for April 10 - which happens to be my birthday - so I will post new details closer to that date.  And in the meantime, if you're the praying type, please include Trish in yours so the rest of her recovery may go smoothly and she can return to the work she loves as soon as possible!

In the meantime, I had a weird thought to share with you (yes, I know, just what you've always wanted).

A Sjoggie's Night Out
Picture found here, from Payless Shoes.

On Saturday, Shawn's firehouse had their annual banquet.  While officially "semi-formal", it brings out every outfit from leggings and tunics to strapless body-hugging cocktail dresses.  Many of the girls get their hair done, and the local nail salons are practically overrun (which is saying something, considering my town is known for our abundance of pizza parlors, parks, and nail salons...don't ask me why).  It seems over the past six years I've tried every look imaginable - one year I went hot & spicy with a long red halter dress and sassy strappy shoes with big sunny flowers on them.  Another year I wore the "anti-Jen" outfit, comprised of a blue strapless dress, high pointy silver pumps, and a sleek hairdo (things I generally avoid).  Of course, I've tried the pant-ensembles as well - something every inflamed-jointed Sjoggie appreciates especially in the unpredictable weather March brings.  This year, I think I finally nailed a look I'm pretty happy with - but in the process I noticed a few peculiar things I have to cope with for a night on the town.  Afterall, no special event would be complete without giving consideration to my physical (dis)abilities, so here's a list of battles I fight with my body to get out the door and through the night.

Challenge 1: Time!!
Getting ready for something like this is truly a day-long event.  As you'll notice from the rest of the challenges below, to ACTUALLY do my hair and makeup, get into my outfit, and out the door takes a while (more than just the stereotypical 'girl prep'time).  Oh, you want to do it without getting into a fight with my husband or sobbing?  Tack on another hour or so.

Challenge 2: My Arms & Shoulders
I can't afford to get my hair done for this so I have to plan and execute a style myself.  This is always one of the hardest things for me.  Leaving aside the fact that my hair is as stuborn as I am, any look I try to go for involves holding my arms over my head for an extended period of time.  With the style I chose, I had to obviously start by washing my hair (arms raised), blow it out (arms raised AND flipping head over), roll it in hot curlers (arms raised and dexterity), coerce the locks into a style after curling (arms raised and finer dexterity to use pins)...ugh I'm aching thinking about it.  And a little side perk - the hairspray isn't exactly sicca syndrome friendly (dry eyes + hairspray = problems). 

Challenge 3: My Hands
With antibodies that go for connective tissue & chronic inflamation comes a certain tendon-cy.  Ha, haha, get it?  Tendon?  Tendonitis?  Tendon-cy?  Hoo boy I guess those hairspray fumes are still affecting my brain power. 

Well anyway...yes, I am prone to tendon problems pretty much throughout my body, though the majority of these problems manifest in my hands.  In particular, the tendons in my hands which connect to my thumbs get pretty darned angry.  Imagine fanning yourself with a flyer or brochure - those are the tendons I'm talking about.  It's amazing how many things we do which use those tendons...and which it is now hard for me to do at all.  For example, I can't handwash dishes anymore because holding plates and working the sponge or towel into crevices sets them off (no, this one's not a joke, it's really not funny being dependant).

There are countless other things I do that use (and aggrivate) those same tendons.  They acted up while putting on makeup, fighting with an awkward side-zipper, and using hairpins or other hairdo activities (see above).  Possibly the most obnoxious task?  Putting on hosiery.  For those who don't know, to put on a pair of hose one must scrunch up one leg and then using all your strength battle that scrunched hose up - carefully maintaining the right balance of 'yank' and caution lest one wrong move pop a run.  Then, with that leg partway up, you balance while scrunching up the other leg and starting the process over, this time while pinned to your half-hosed knee!  Then when they're about even, you start the similar process of getting them the rest of the way up, which includes all the previous steps PLUS a very bizarre looking dance.  This was possibly my most frustrating and surprising challenge of the night.

Challenge 4: High Heels
Stiletto pumps (pictured above).  'Nuff said.  (Although, small victory - this is the first time I've EVER kept shoes this style on my blasted feet as I walked!)

Challenge 5: Purse Packing
This sounds like it shouldn't be so rough, but I was trying to get all my necessities into a tiny bag.  What are Sjoggie necessities?  Well, there's the usual things - credit card, ID, business cards (I never leave home without them); then, the girl things - nail file, lip stick; the things every good wife carries - a Tide pen.  But then I still have to cram the Sjoggie supplies - eye drops, Advil, stomach meds (gotta love that GI system involvement that springs up at the worst times).

Challenge 6: The Cold
And finally, we get out the door...and into the cold.  I faced the usual choice - which coat.  There's the amazing warm jacket I've fallen in love with this winter, but which not only ruins the look but also leaves it's down feather filling calling card on everything I wear.  Then, there's the long black trench coat which makes my outfit and almost makes me look skinny no matter what, but doesn't provide adequate protection against the below-freezing temps.  Of course, I chose the trench coat (hey, I'm usually pragmatic but once or twice a year a girl's gotta feel like a real woman, not some balsawood toy plane held together by paperclips and rubber bands).  I may have made my choice but of course I still had to live with it - and pay for it

Challenge 7: The Day After
The grand finale - and one familiar to every Sjoggie (or other chronic patient) I've ever met.  So I wore out my arms and tendons in my hands, did battle with nylons (or whatever those things are actually made of), and out of sheer pig-headed will danced the night away in my silly (but oh so pretty) shoes.  The next day I felt like I'd done the tango with a battling ram.  I only wore stilettos on my feet, why did my whole body have to pay for it?  I guess because the only time my whole body communicates is to share inflamation.  It's now three days later and I have a sore throat, extra dry eyes, and a lingering problem with my left hand.

Was it worth it?  I don't know, ask me after my next dose of Advil.  Hm, I wonder what I'll wear next year....

March 19, 2011

Hear Me, Hear Me! On Web Radio!!!


I’m happy to announce that I’m going to be a featured guest on Optimal Health Seekers’ Radio (OHS-Radio) on Sunday, March 27, 2011 at 4pm eastern!

OHSRadio is a radio show that educates inspires and empowers people motivated to take an active role in finding their own personal level of optimal health.

The host of the show, Trish Robichaud brings a voice of compassion, logic and humour to those who are motivated to take an active, even proactive role in managing their health. 

She is a multiple award winning Disability Awareness Coach, Maximum Life & Business Coach, Author, Facilitator, Advocate & Motivational Speaker who lives with multiple sclerosis and major depression.  She is a woman with a disability but she is NOT a disabled woman.  

For those of us living with chronic illness, disability or some other ongoing health condition, finding the resources, energy and motivation needed to optimize our health can be daunting to say the least. 

Trish Robichaud is passionate about helping people living with chronic illness or disability how to honour and accommodate their health while striving to achieve optimal health, personal fulfillment, work/life balance and entrepreneurial success through spiritual growth, confidence building and self-acceptance.  

Please listen in on Sunday, March 27, 2011 at as Trish interviews me about my journey with my health and how I’ve created a life seeking optimal health while pursuing my passions!

~Jenny Pettit
UII – Understanding Invisible Illnesses

PS… If you’re living with health issues yourself, please take a moment to visit and check out Trish’s free trial membership.  It’s the only health-related membership program on earth that provides its members with Life Coaching as a primary benefit of membership!

March 13, 2011

What Do You See?

Pictures are powerful.  Images of the devestation from the earthquake in Japan have been flying around the web and news outlets, expectant new fathers stand anxiously by while their wives give birth, camera in hand, and photographers sometimes generate the highest bill for couples getting married. 

Those of us with invisible illnesses spend quite a bit of time thinking about images; about the visual world around us.  As you know by now, we more and more turn to images as symbols of the unseen battles our bodies fight each day.  Our illnesses are like the wind - known only by the effects they have, effects which can move heaven and earth and shape mountains in our lives.  You can't see the wind but know it is what blows leaves from the trees.  Likewise, you often can't see something under a microscope for our diagnoses, but the pain, exhaustion, or damaged joints are just as real as the naked trees.

We used many pictures to help convey our messages at the VU+UII panel (thank you again to everyone who contributed).  Our display was one way to use images to send a message.  Blogger Mama, a fellow Sjoggie who writes about her experiences as a patient with invisible illnesses and stay at home mom to a dynamo of a toddler, has taken on her own project using photos in another way to spread awareness.  Visit her latest post, Pop Quiz Time.  There, you can look at a few pictures and leave your guess as to who has an illness and what that illness might be.  It promises to be a very interesting reveal when she shares the results in a week!

Want to "see" more?  Check out these blogs and friends of mine on Twitter, who use photography and other visual arts in amazing ways!

March 9, 2011

Guest Post: You've Helped Me

Our next guest post comes from another Jen!  "Daisybee", as her friends call her, blogs at Suicidal No More about living with mental and chronic illnesses to inform, educate, and offer hope.  As a consumer advocate for people with mental illnesses like herself who does PLENTY of public speaking, Jen has great experiences to share with us at UII.  She says that having lived with several invisible illnesses - including Schizoaffective Disorder, Sjogren's Syndrome, and Fibromyalgia - for many years, she is excited about the efforts UII is undertaking and feels this blog is an excellent advocacy tool (her words, not mine:)).  Jen, we welcome and salute you!

"You've Helped Me"

Bayside HighSchool sits directly across the street from the county jail, so the view from the parking lot is not exactly one that inspires hope for the future. As I entered the high school early on a November morning, I was filled with a mixture of anxiety about the task at hand, and looking forward to trying to give that very thing the surroundings lacked – hope – to the students I was about to meet. One of my fellow members of the National Alliance on Mental Illness (NAMI)Dick, who has a daughter with Schizophrenia, and I were meeting up there to take part in the Great American Teach In of 2010.

Our task was to speak about mental illness, and mine was to speak about my own. As we took a tour, a school staff member told us that students could be enrolled at this alternative high school until they graduated or reached the age of 24, and that it was a school of last resort, the place that would accept students who had been expelled from other public high schools or who had recently been detained in the juvenile detention center. These facts made me a bit nervous about what we were going to encounter. I pictured teenagers throwing spit balls at me and laughing as I talked about very personal matters, and wondered how I would make it through five classrooms of this. I was soon to find out that my fears were unfounded.

Instead of laughing, the students listened intently and quietly without causing any disruptions. Sure, there were a few who slept through our presentation, but I imagine that I would find a sleeping student or two in most high school classrooms at 8:00 A.M. What I spoke to them about were things that I don’t bring up in everyday conversations with most people I come across: my high school era depression, the addiction I had to self-injury as a teenager and young adult, the years I suffered from Anorexia Nervosa, and the more recent struggles I have gone through with Schizoaffective Disorder. I figured that there were students who could relate to some of the discussion, particularly about Major Depression, which is such a common illness, and I longed to give them some hope that they, too, would one day recover from that, as I did. As Dick and I told these young people, suicide is the third leading cause of death in high school , and the second leading cause in college students, so it is important to get help if one is dealing with depression and suicidal thoughts. We stressed that suicide is never a necessary choice, and that there is affordable and accessible help available.

While these subjects were easy for me to discuss, I was not confident in my ability to disclose the details of the past decade of my life. Talking about being psychotic with Schizoaffective Disorder can be tricky no matter who the audience is. In the past couple of years, I have spoken to police officers, volunteers at a performing arts center, and the staff of a community mental health center. For six years, I have also written a blog where I discuss my disorder frankly, and try to give information and inspiration to those who might not understand mental illness, as well as those who live with it and feel alone in their battles. Talking to teenagers, however, was new to me, and yet, somehow, it ended up feeling much easier than I expected it to. I told them what it was like to experience auditory hallucinations (i.e., hearing voices), visual hallucinations, and delusional thoughts. I described some of the beliefs I had when paranoid and delusional, and how I had wandered around aimlessly, moving from place to place as I could not keep a roof over my head, and feeling lost as I could not attend college or work at any job for years. I told them about voices telling me to die, the deluded thoughts that I had about how I was supposed to die, as well as the luck that I had in surviving several suicide attempts and in avoiding one that would have most likely been lethal.

Finally, I described one of the best things that had ever happened to me, which was, surprisingly, being taken to a hospital in handcuffs and kept there for five months under the orders of a judge. It certainly did not feel like a positive experience at the time, and only with years of reflection did I come to consider it one of the best things that had happened to me. I had been hospitalized many times before that, but had always been released within a week or two. I had never been properly diagnosed nor had any effective treatment, until that judge decided that this time I wouldn’t be leaving so quickly. Thanks to the good graces that exist in the universe, I had been put on medication that worked for me. It did not work immediately, however. If I had not been kept in the hospital for months, I probably would not have been put on successful medication. But once it did work, I began to think clearly again for the first time in years, and was able to come to grips with the fact that I had a serious mental illness which I had been living with for a very long time. After those months in the hospital, I went to live in a group home, and after ten months of that I moved into an apartment. I told the students about how I have now lived in that apartment for four years, which is the longest time period I have ever spent living in the same place as an adult. I told them about going back to work part-time, finding a therapist who was extremely helpful to me at the community mental health center, and returning to college part-time. My purpose in telling them about these successes was to let them know a person with a serious mental illness can get better.

After I finished speaking, some of the students asked really interesting questions. One young woman said how she was on medication for a mental illness herself, and she wanted to know if I had ever taken the same medicine, or if I had ever been in the same psychiatric hospital where she had been a patient. Another asked what gave me the courage to stand in front of this classroom and talk about such personal information. I said that, even though I was nervous, it was a worthwhile experience for me because of the possibility that I might help one person, and make a difference in one life. “You have,” a young woman in the front row said. “You’ve helped me”. I felt fulfilled right then, and grateful to this girl for having the bravery to say so in front of her entire class.

The teacher of our last class period mentioned that the student body had lost one of their members last year to suicide. She said she was very grateful that Dick and I came to speak at this school about this topic, because many of the students in her English classes wrote about emotional issues, being depressed, or feeling suicidal. She said that she had students leave suicide notes on her desk, which made me extremely grateful I got to have contact with the young people in her classroom that day, because there was obviously a need for information about mental health in their lives.

In addition to talking about my own story, Dick and I both talked about the stigma that enshrouds mental illness, and the fact that people with mental illnesses are really not more likely to commit a crime than people without mental illnesses, according to NAMI. In fact, those of us with mental illnesses are far more likely to be victims of crimes than to commit them. We talked about the stigma perpetuated in Hollywood movies, and the differences between those stereotypical portrayals of people with mental illnesses, and the reality that we are actually just regular people like everybody else. I really wanted to stress the fact that having a mental illness does not mean you have a personality defect, a character problem, or that you deserve to be made fun of for being different. The students seemed interested in this aspect of the presentation, and I felt it really got through to them when some of them opened up about their own illnesses, or those of their friends.

At the end of the day, I was tired, but actually felt refreshed. I truly came away from that school building, across the street from the ugly county jail, feeling like I had made a positive impact on some young lives. Even if the impact had been a small one, I knew, because of the young woman who told me so, that I had made a difference, and I think making a difference makes any given day worthwhile. I felt, also, like I had come full circle from the suicidally depressed and painfully shy teenager I once was, afraid to speak up in a classroom or talk to my classmates. My first suicide attempt was when I was fifteen years old, and back then I never thought there was hope for me to feel happiness again, much less become a public speaker about mental illness. I was able to use my voice now, to speak out about that which too often remains shrouded in darkness and secrecy where stigma sprouts like a cancer. I know that telling my story is the best way that I can combat that stigma, the stigma that keeps so many people who live with mental illnesses from getting the help they desperately need, and I always feel gratified after doing so. I can only hope that one day, one of the students living with a mental illness in that high school will find the help she needs, and maybe she will even want to speak out, spread awareness, and become another voice in the darkness, offering a helping hand to those who are lost and need one.

March 2, 2011

A Few Days Left - How Do YOU Use Technology For Your Health?

WEGO Health is conducting a study on people’s use of new technologies for health and they need your voice to understand the potential of technology to empower patients.

The survey will take about 10 minutes (you can stop anytime & come back later).  All completed survey responses will be entered into a drawing to win an iPad, one of three iPod Touches or one of 200 iTunes gift cards.  Everyone will receive a report on our survey findings.

This survey won’t be open much longer, so jump in now!

Take WEGO Health’s Health Technology Survey:
Reminder: Our survey takes only 10 minutes and all completed survey responses will be entered into a drawing to win an iPad®, one of three iPod Touches® or one of 200 iTunes® gift cards.  Everyone will receive a report on our survey findings.

I took this survey and enjoyed the nature of the questions.  It takes just a few minutes, and honestly I got something out of just taking the survey - I found out about technology applications and options I hadn't known existed!