VU+UII = An Awareness Dream Team

It's been a long time coming, I know, but I just may have FINALLY found a few minutes to let you know how the panel and photo display I've been yammering about for weeks came off!



Invisible Illnesses Made Visible

There's no way you can tell from this photo just how big this display is...



 ...So here's one that gives you a little perspective!

On Tuesday, I made impressive time getting from my client site to Villanova University's campus.  Pulling on campus felt very natural (I did it for 5 years afterall), but also kind of...odd.  While doing my awareness projects with the school are some of my favorite things, at times like these it reinforces the fact that I am no longer a student.  This is no longer my home.  Strangely, the main way this manifests itself is in the excitement people have when they see me - frankly, no one gets THAT excited to see a student.  Oh well, I'll call it one of aging's silver linings (and it's FAR more welcome than the exasperating 'silver' hairs I keep finding disturbingly on my own head).

But I digress.  

First, let me fill you in on the basics.  The panel consisted of myself representing autoimmune and autonomic disorders, obviously; my brother Jon (representing mental health and neuro-developmental disorders and the male perspective); and my friend Bridget who I met early in Freshman year when we parked in adjacent handicapped spots on campus - I guess in this case it was both shared experience AND proximity that bonded us:)  Bridget was there to represent Cerebral Palsy & cancer.  Our panel (and the display of the photography project) was organized through the Office of Health Promotion with two of my FAVORITE people, Kathryn and Stacy, and was hosted by Villanova's chapter of SNAP (Student Nurses Association of Pennsylvania).  We've worked with both the OHP and SNAP in the past; they are very valuable allies in the effort to spread awareness of invisble illnesses.

Shortly after I got there, Shawn arrived with my brother.  Shawn picked him up from St. Joseph University so they could make it over on time and my parents didn't have to get there until closer to the actual start time.  We headed up to the student projects on display where the SNAP members gathered for pizza before the session.  On the way, we stopped outside the auditorium where the panel would be held to see the Invisible Illnesses photo display!  It was set up by itself, which actually enhanced it's impact.  As a self-contained display (I'll come back to these details in a minute), it draws people over to see what it's all about.  I can't even express my excitement and sense of fullfillment when I stood, anonymously, across the atrium and watched people walk over to the display.  (This is when I snapped the photo above.)  I noticed a few things about those who stopped at it (at least while I was there):

1. They usually came in pairs - either both walked up to the display or one walked up and called a friend over.
2. They actually moved back and forth in front of the display to examine all the different areas!  When they would take a step after a few moments standing there I figured they were moving on...but they weren't!  They were truly checking out the whole thing!
3. Invariably, before finally moving off to their next destination, one person in each pair would point to the pictures in the center at the top - pictures of who Shawn, Bridget, and I dubbed our "Lyme Teen Beauty Queen" (I'll explain this later, too). 

After admiring the display's admirers for a few minutes, we continued to the second floor where SNAP was gathering.  A few minutes later, Bridget arrived as well.  None of the students there actually knew who we were, so we blended in for a few minutes.  One of the student projects dealt with depression and body-image problems on campus.  Now, I have to say, as vital as these topics are and as much as society needs to KEEP addressing them in the public eye, I was a little wary of how this project would be presented.  Let's face it - it's a critical topic but one touched on frequently, and I somewhat doubted they'd find a way to present it that would add new value.  Thankfully, I was SO wrong!  The display was wonderful - I found myself reading everything on it and being intrigued.  One of the students who worked on the project was sharing some of the details and info about the project, and asked Bridget and I to take a survey about body image.  Even after asking how to respond to the question of what year we were in college (Bridget asked "what if we're not actually IN college right now"), the girl still hadn't picked up on who we were...so of course we had to have a little fun with that.  After listening to everything she had to say as if we'd never heard of it before and asking a few intentionally naive questions, we finished the survey.  When I handed mine back to the student, I asked her name, then shook her hand and said "nice to meet you, I'm Jen Pettit and this is Bridget"!  It was great, a true sitcom moment!  She started laughing and got a little embarassed, and told us "but you really looked like college students!".  Between you and me, I realized later that was a risk - what if she hadn't recognized our names?  Then I would have been embarassed:)  Fortunately, she did know who we were (Stacy and Kathryn probably talked about us a lot in their sessions) and we all got a good kick out of it!  In retrospect, I probably have an underdeveloped sense of humor....

A few minutes before the meeting and panel were to start, we relocated to the auditorium where we ran through the introduction with the student who had been selected to give it.  She introduced us briefly one by one, and each of us stood when she got to our slides and explained a little about what we do in terms of health activism, and also what we were involved in on campus as students (so they could relate to us as whole persons and not just walking talking medical diagnoses).  We were brief, intentionally.  We wanted to give the audience some context but leave as much time as possible for them to steer the conversation through their questions.  All the questions were good ones, and a few were particularly insightful or interesting.  One person asked about the experience my brother and I had growing up together, having a sibling to discuss life with an invisible illness with (interestingly, we didn't discuss it growing up, partly because of the nature of my brother's diagnosis of Asperger's.  But I still thought it was a great question).  Another asked about how we each make the decision if/when/how much to tell people about our conditions.  The final question was what we want them, as nursing students, to know or keep in mind.  I was WAITING for that one:)  In short, our answers were basically about bedside manner and listening to patients.  We pointed out that while they may have spent their entire shift taking care of whiny patients who needed mundane or even disgusting things, but ultimately at the end of their shift they can go home - their patients can't leave their bodies.  And, we acknowledged, some of them may have their own conditions they battle...if so, they should be even that much MORE understanding of the 24-7 challenges their patients have.  No one WANTS to be in the hospital, to need a nurse to do everything for them, to be revealed to others in their most humble and sometimes embarassing state - who needs a nurse with an attitude on top of it?  It may just be wishful thinking, but I honestly do think the audience seemed to really take our answers to heart.  They really seemed to be invested in the whole presentation.  I'm proud to be an alumna of a school with this quality of students seeking to be the best professionals they can be.

I mentioned our "Lyme Teen Beauty Queen"; this is Jenna, a 17 year old high school student with severly progressed Lyme disease as well as Type 1 Diabetes.  Jenna became one of our most powerful contributors for this project in particular.  As our audience were college students, they could easily relate to a girl her age.  Her pictures from her prom show a petite and very pretty girl in a fairytale fuscia strapless dress with full ballgown skirt spinning in a sunlight field...but they also show her picc line (long-term IV port left in the upper arm for receiving chemotherapy treatments for her Lyme in her own home).  Another picture shows her receiving a treatment through this line while her golden lies on the bed with her.  Furthermore, Jenna entered her county's teen beauty pagent - pic line, wheelchair, and all - and WON.  As I told Jenna and her mom, Lori, I am inspired by Jenna's actions...but also by her community.  As a patient, it makes me feel hopeful to know there are people like Jenna's neighbors, who listen to what she has to say, accept her and her conditions, and work together to raise her up.  You'll have to excuse me, even as I write this I'm tearing up (yet again):)  I encourage you to take a look sometime at Jenna's blog and read past entries to hear her experience, views, and ambitions in her own words.

While Jenna's story had such a strong role in our display, you need to understand it was not at the expense of anyone else's.  As you'll see below, EVERYONE who sent me pictures was represented in the display; the looping slides played before the panel began showcased Jenna and 3 other contributor stories; and no one person's story - not even Jenna's - would have been enough by itself to have the impact and momentum we have together.  This display and project on the whole are literally FAR more than the sum of its parts, which means each and every one of you who sent in pictures or shared the project with your communities had an intergral role in its success.  Congratulations:)

I promised to give you more details about the photo display.  Composed of 5"x7" photographs on a 4'x6' sheet of plywood, we couldn;t even fit all of the photos you submitted!  We did, however, include at least one photo from each contributor, so ultimately you were ALL represented, as were ALL your conditions!  Through the images we received from 25 contributors in 4 countries, we represented the following 39 conditions:

Attention Deficit Disorder (ADD)

Addiction

Antiphospholipid Antibody Syndrome (APS)

Anxiety

Asthma

Babesia

Bartonella

Behcet's Disease

Charcot Marie Tooth Type 1A

Chiari Malformation Type I

Chronic back pain

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

Complex Regional Pain Syndrome

Depression

Diabetes (Types 1 and 2)

Dysautonomia

Fibromyalgia

Gastritis

Gastroparesis

Generalized Pulmonary Insufficiency

Hashimoto's Thyroiditis

Localized Scleroderma

Systemic Lupus Erythemetosus (SLE)

Lyme Disease

Osteoarthritis

Panic Disorder

Polycystic Ovarian Syndrome (PCOS)

Post Traumatic Stress Disorder (PTSD)

Raynaud's Phenomenon

Reflex Sympathetic Dystrophy

Reflux

Renal Disorder

Rheumatoid Arthritis (RA)

Sarcoidosis

Scoliosis

Seronegative Antiphospholipid Syndrome (APS)

Sjogren's Syndrome

Sleep Apnea

Syringomyelia

In the photos of the display, you may have noticed 4 sheets of paper.  One is a list of the contributors (including "anonymous" for those who did not want their names included) - this list was also provided to the University's campus ministry program and the contributors along with all others suffering with these kinds of conditions have been the focus of prayer intentions for the past few weeks!  Another of the papers included lists the 39 conditions seen above.  The two sheets in the center explain what the display is all about.  I want to share with you what I wrote, trying to capture both the desperate urgency of our conditions as well as the hope we keep alive:

This display represents 25 men, women, and children from four countries who live with one or more of the 39 chronic and "invisible" conditions listed.  Here, they have revealed to you the "hidden" side of their lives - the things they require to get through the day, the medications they need just to survive, and the scars & marks they usually conceal.  Fear, shame, and stigma often force them to hide these truths.  Only education and society's acceptance of a person for everything they offer can change this story.  

For some, this is the first time they have revealed these images to anyone.  Today, they have stopped hiding.

Please say a prayer for those pictured here - as well as the millions of others who are forgotten, mistreated, and ignored every day - that love will prevail and awareness and research for treatments & cures will follow. 

I'll leave you with those words, and my thanks to the following contributors to this display.  This isn't the end of this project - we have a wide variety of opportunities to keep this effort going and to expand on it that I'll be pursuing over the coming weeks and months.  If you weren't able to contribute on this round, please still feel free to contact me and to keep your eyes open for the next projects to come down the pike!

Contributors:

Elaine Bergeron

Janice Bittner

Melissa Callis

Lisa Copen

Melissa Croft

Sarah Curtain

Charlotte Dorfman

Jeffrey Dorfman

Priscilla Ervin

Jenna Hansroth

Genevieve Henry

Amy Kiel

Janice Laurence

Dawn Lewis

Maria Mooney

Julia Oleinik

Julie P

Jennifer Pettit

Lucia Pires

Karen Pontarelli

Jane Luann Smith

Matia Spicer

Mari

Tina

Anonymous

 

Guest Post: Search for Validation

As I've mentioned (probably too much), we are in audit busy season, which means time is tighter than my favorite jeans after 3 months of Prednisone.  With the added constraints on my time required to do some of the projects we've been discussing, I'm really hard pressed to present you with a blog post of much value.  So, this seemed to be the ideal time to explore a route I had been considering and bring in a few guest bloggers to share their insights, experience, and perspectives.  So far the lineup is quite awesome if I do say so, and I think you'll enjoy these posts very much.

For our innaugural Guest UII Blogger Post, allow me to introduce my mom, Charlotte!  I swear, I offered her the option to write on any topic she wanted including her own life with chronic invisible illnesses, but she insisted this is the topic she felt moved to write on.  Additionally, this is her first EVER post (she's not a blogger, but is quite a writer as you'll see), so let's give her a great big UII Welcome!!!

(Here at UII, we tell it like it is...and, well, my parents are goofballs too!)

Excuse me, Doctor, do You Validate Illnesses?

Invisible illness; for something invisible it has certainly plagued me all of my life. I think about this topic in two layers. First there is the 50+ year struggle that I have had with autoimmune disorders, iced over with the 20 year challenge I have had as the mother of a daughter with autoimmune disorders. I am like the Naked City of medical experiences, I have a thousand stories to tell, but today I seem to be focused more on my daughter and our experiences getting her diagnosed, and most importantly, helped. I think there could be other parents out there who are at the beginning of their journey who might need support as they go.

Jen is now 24, nearing membership to the quarter century club. I had gestational diabetes with this pregnancy and her birth was a 44 hour saga that ended in a c-section. We also had a couple of close calls over the 9 months. However, she arrived - high bilirubins, but otherwise gorgeous and healthy in every way. I don’t approve of mothers who can’t acknowledge that their baby is less than beautiful, I certainly would have acknowledged it. I just got lucky, my little girl was genuinely the most beautiful x-chromosome ever born. She also did seem to be wonderfully healthy.

A few years into parenthood, we found this to be less and less true. Jen was in daycare from age 13 months to 2 and a half years. Within the first six months, she had so many ear infections that she needed to have tubes placed surgically. Doctors explained that she was in danger of hearing loss. I attributed this to being around other small children as she was now being exposed to so many more germs and bacteria. About this same time she started to complain, then actually cry from leg pain, centered very much in her knees and ankles. We began what was to become our personal family recreation: we went from doctor to doctor seeking relief for our child. She had bone scans. We were cautioned about bone cancer. The final dx at the time- growing pains. Growing pains, like the catch-all phrase my mother always used when she didn’t have the patience to deal with our childhood owies. I knew as an adult that this child had more than “growing pains”. Of course I was grateful that she didn’t have cancer, but there is a lot of painful gray area between those two diagnoses.

Time marched on and Jen started kindergarten. Day one Jen came home and announced she had met a wonderful friend. Day two Jen came home and announced her new-found friend was out of school with some kind of illness. Day 11 Jen woke up with the worst case of chicken pox I had ever seen; certainly way more severe than any I ever witnessed. Like the generous sister she was, she passed it right on to her 2 year old brother. He had a healthy case of chicken pox, went through his ten days of symptoms and promptly got over it. Jen, however, remained home for 2 more weeks, super lethargic and in leg pain. Her teacher came to drop off some class work and casually asked if Jen liked to get attention. I saw nothing in Jen that seemed particularly attention seeking. She complained when she was sick, but she didn’t seem to have any agenda. Jen returned to school but missed in excess of 40 days of kindergarten due to illness. Luckily kindergarten was optional in PA, not mandatory. She still managed to excel academically in spite of it, but we started to realize she didn’t have the same kind of immunity that most kids have. If we passed a sick child in an elevator, Jen would be sick in 3 days. I also came to the realization that the school was beginning to think that she was, dare I say it and pay it homage, a hypochondriac. The nurse said she wore out a path to the infirmary complaining of leg pain and being tired. Additionally she started to display an upsetting personal tic, or at least we thought it was a tic at the time. She picked at her eyes constantly.

My husband and I did not have endless funds nor endless time off from work to make doctor appointments, but we did it just the same. I was perfectly convinced, in my heart, that this child was not faking anything. My gut instincts were on point. My biggest fear was that we would miss a diagnosis, and find out at some later time that she had a problem that could have been corrected if only we had known sooner. So the visits continued.

I have been called every possible synonym of over-protective that there is. Ordinarily that would have reduced me to tears, but this was my daughter, my baby cub as it were, I would ignore the barbs for now and try to remember to punish these rude people at a later date. I had more important things to do at the moment. Jen finally received a partial mushy diagnosis of arthritis and was prescribed Tylenol. Pardon me for being so esoteric, “BIG WOO” - Tylenol did absolutely NOTHING to put a dent in her pain and symptoms. She went to beloved ballet classes, only to be sent home because she invariably had ankle problems too intense to allow the teacher to let her remain in class. Still no answers in sight, and still smart alecky teachers with their innuendos, “who ever heard of a child with arthritis, oh just look at her, she is healthy as a horse”. How I grew to hate the words “but she doesn’t LOOK sick”. Then it happened.

When Jen was 14, I noticed a small bald spot on her head, around Christmas vacation. It was about the size of a pencil eraser in diameter. I thought about it and figured that perhaps this is our lucky sign. Jen will start to go bald and finally we will get a diagnosis. Some luck, huh. Anyway, I made a mental note to check the spot occasionally without mentioning anything to her about it at all. Teenage girls are very sensitive about their hair, and even more so about losing it. I realized by Easter that the pencil eraser spot was now the size of a quarter. Time to seek yet still one more diagnosis. I dared anyone to tell me she was imagining this. Again we went on a tour of the hospital medical specialty offices. The dermatologist recommended new shampoo. The rheumatologist made fun of her teeth. Nobody in fact, had a diagnosis though. They suspected everything from clogged pores to lupus, BUT nobody had a definite diagnosis. Once again pure circumstance intervened.

Jen was very much into color guard in high school. All of the energy she could muster was channeled into 8 hour practices on Saturdays, plus 3 weeknights and competitions after Saturday rehearsals. Although she was in pain, she pushed her body to the limits with exercise. This turned out, in retrospect, to be a good thing. One day during a summertime practice, in 90 degree heat and direct sun, Jen finally was outdone. When her father picked her up and saw the state she was in, he quickly took her to the hospital emergency department. There, she was given hydration and kept overnight. Finally convinced that she was truly experiencing a serious condition, doctors began to consider taking her seriously. We originally took her to an adult rheumatologist, who began to explore the blood labs that indicated an autoimmune condition. At the time, he suspected Lupus, and instructed Jen to insist the second dermatologist she visited for her bald spot perform a biopsy (expecting to find Discoid Lupus). Instead, the biopsy uncovered her Localized Scleroderma. Having started the process, the adult rheumy became uncomfortable treating a minor and referred us to A.I. DuPont Hospital so she could be seen by pediatric rheumies. There she was treated by excellent doctors who FINALLY began to put together the pieces, and Jen finally received her first in a long line of diagnoses – Sjogren’s Syndrome (followed quickly by Raynaud’s Phenomenon and Dysautonomia).

At last, diagnoses. Diagnoses that brought with them a plan for treatment, possible medication options, partial relief from pain and worry but most importantly, VALIDATION! This child finally had the dignity of a diagnosis. Remember all of those people I said I would punish later on? Well it wasn’t really punishment, I am Catholic so I don’t do the revenge thing, but I did manage to make my first two calls to the school nurse and 3rd grade teacher who were the most adamant defenders of the hypochondriac theory.

My point in sharing this saga? The lessons to learn are to ALWAYS listen when your child says she/he is in pain. If the diagnosis is in an autoimmune spectrum, expect it to be a long time coming. Lastly and most importantly, parents and caregivers, TRUST YOUR OWN INSTINCTS! Doctors have tons of education and quite a few fancy schmancy letters to their names, but nobody knows your child like you. There is nothing that disturbs your child more than to have pain go invalidated. I know my daughter was aware of all the nasty remarks that were made over the years. I didn’t like her to focus on them, because I told her very early on that I truly believed she had a real medical issue and that we wouldn’t stop until we got our answers. I am proud to say that her father and I kept that promise to the letter. Jen is of course in charge of her own medical well-being at this time. I know she will always seek answers and demand honesty from her doctors. I also suspect that when she becomes a mother some day she will, if nothing else, trust her own gut feelings about her child’s health issues. I have no doubt she will grow a set of bearclaws too when she needs them.

Just a Little Look, Now, Gotta be Patient...

But if you're like me, you're just DYING for a sneak peak!  Of what, you ask?  What else - the UII + VU INVISIBLE ILLNESSES MADE VISIBLE PHOTO DISPLAY!!!!

These are just sneak clips, don't wanna ruin the effect before it first goes up.  Due to the insane snow we've had around here lately, the school had many snow days and cancelled classes, which threw off a lot of schedules and the display wasn't able to go up last week.  But fear not!  Bridget, Shawn, and I couldn't let this go by the wayside, and now the display is done and ready to go up 3 times over this week around campus with the nursing student projects.  Also, many of your pictures and stories will be featured in a pre-panel slideshow next week...and that's not even touching on the tricks and plans I have up my sleeve!  But shhh, not time for those just yet.

Anway, here are some glimpses at the display.  I'll post pics of the full impact soon!

Laid out on the plywood pre-painting:

Your loving display creators - pre-Mod Podge fumes:

The Podge was still drying:

...and STILL drying:

Ok that's it!  In fact, I'm pretty sure that's more than you should see before the whole kit and caboodle goes "live" this week...but you're such fantasticly brave and wonderful people I figured I owed you a teaser.

Also, I just want you to know - each set of pictures came with a story, and those stories moved me in ways I thought I was immune to.  Guess I should have known I have defunct immunity all the way around:)

But seriously.  Throughout this project, Bridget and I have discussed the details over and over.  Some of you shared stories that inspired us because of things you did to raise awareness about your condition (such as our Lyme Teen Beauty Queen) or things you did completely in spite of your condition and just because you love them (like our Boogie Boarding Scooter Traveler).  You tapped into your artistic sides (the Waiting Room Floor comes to mind), and shared secrets you've held inside you until this day (a faded self-injury scar bears better witness than I can). 

We heard from people who had stopped hoping, fallen into depressions, and could no longer believe the world could ever be a better place for you so long as you have an invisible illness.  It was as if this project gave you something to cling to; a reason to dare to hope that society could learn about the way you live and discover all you have to offer...or maybe that you could discover it yourself. 

We want you to know we hold ourselves responsible to you.  So long as we have voices to raise and minds to dream and family to help make it happen, you will be heard.  You obviously don't need us - look at how powerful you are on your own - but just like the Who's in Whoville needed every last Who to scream and shout and save their dustspeck (it's Dr. Seuss, go read it), sometimes we need to speak up for each other.  And so, this puffed-up Prednisone popper would like to remind you "I meant what I said and I said what I meant; an elephant is loyal one hundred percent"! 

Look for photos of the WHOLE display coming soon to a blog near you!

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.