There's How Many Ways to Do This?

Image of ICSI found here.

Let's take a poll, shall we?

Raise your hand if you know someone who has struggled with infertility.

(If you actually have your hand up, good - it helps when you play along:))

Keep your hand up if you know someone who went through infertility treatments of any kind.

How about anyone who's been through IVF?

(I'm guessing a few hands have gone down but several are still up...let's keep going.)

Keep your hand in the air if that person you know who did IVF had a baby from the treatment.

(You're such good sports!  You can put your hands down.)

If I were the betting type, I'd have money on the chance that almost every hand that was up for "I know someone who did IVF" was still up for "they had a baby".  Is that because IVF always works?  HELL no. In fact, most women who go through IVF have only a 20-35% chance of success in a given cycle - anything over 40% is considered terrific. No, it's because in our society, we don't talk about IVF that doesn't work, let alone the things involved in the IVF process.  Unless the person doing IVF was you, a sibling, or your absolutely closest friend, I'd be surprised if you even know they were doing it until the baby was at least visibly on his or her way.  I'd bet you have no idea how many rounds that couple may have failed before having a successful transfer and pregnancy.  It's likely not your fault, they just didn't feel comfortable telling everyone.  But we all know I am not encumbered by such social norms :D

I am just beginning my journey through IVFland.  This week marks two years my husband and I have been TTC (trying to conceive), and we've been through quite a bit of testing, medications, surgery, and several different types of treatments.  We've done the classic Clomid, tried IUI.  We did, one time, get pregnant but as you know the baby had a trisomy (third copy of a chromosome) and resulted in a miscarriage right before Christmas.  We finally took a step back after that to consider if we wanted to continue treatments, and explored the adoption scenario.  After checking out three agencies, we determined that adoption may be in our future but right now we are better prepared to try some more treatments.

However, we also decided we were not satisfied with the fertility specialist we had been seeing and realized it was time for a second opinion and a new approach.  Fortunately, through the infertility support group I joined, we were aware of a few local alternatives and one in particular which seemed to have a very passionate following, and who offered a free 2nd opinion consultation option!  We took our records from the three previous doctors, went through our entire medical histories, discussed our concerns, and sat down with the new doctor.  I'll dedicate another post to why I'm liking this new place so much, but suffice it to say she has the approach we need not only to treatment but also to patient care.  Her advice is try a "mini-stimulation" cycle of IVF which uses a significantly lower quantity of medications than traditional IVF, as my tests indicate I'm likely to be a good responder.  This is important to us with all my medical issues, as we are concerned about what the process could do to my body and overall health.

And so here we are, going through the steps to get ready for our first IVF cycle.  Oh, and by the way, the terms "IVF cycle" itself is confusing, so let's break it down:

1. The first phase of IVF is egg retrieval.  This is where they stimulate the woman's ovaries to produce a higher number of eggs than are usually developed during a natural ovulation cycle.  When ultrasounds and blood tests show the follicles are mature, a needle is inserted through the wall of the vagina (while under anesthesia) to draw out the liquid in each follicle which should contain the eggs.  
2. The eggs are then fertilized (this can be with the male partner's sperm or donor sperm, and the sample may be provided the same day or in advance and frozen).  This can be done old school with many sperm in a petri dish or via ICSI (Intra-Cytoplasmic Sperm Injection) where one sperm is selected and injected into the egg.  My clinic performs ICSI.
3. The fertilized eggs are then incubated for a period of 3 - 7 days (this depends on your doctor, personal preferences, specific medical scenarios, etc).  With my clinic they usually grow for 5 days.  It is important to note that it's unlikely all embryos will make it the full length of time.
4. At this point one of two things will happen.  You can have a fresh transfer which involves placing an embryo in your uterus with a catheter on that 5 day mark (my clinic will only transfer one at a time, and I'm ok with that - with all my medical issues we don't need the added risks of carrying twins).  This will depend on how retrieval went along with your health at the time.  There are several things that could preclude a fresh transfer, including your own preferences.
5. If you don't have a fresh transfer, all embryos will be frozen.  If you do a fresh transfer, any remaining embryos will be frozen.  Oh, and you have another decision to make - PGS.
6. PGS is Preimplantation Genetic Screening, which is a NON-DESTRUCTIVE test that can be performed on embryos (and which even the best insurances don't cover).  Prior to freezing, a small biopsy is taken from the outer ring of cells which will eventually form the placenta (thereby leaving the cells that become the baby itself untouched).  The sample is then examined to determine if the embryo is chromosomally normal.  The test will determine if the embryo has the right number of chromosomes, which chromosomes may be missing, and which may have an extra copy.  It will also identify the sex of the embryo but you can ask your doctor not to tell you that.  So yes, this test will tell you if your baby has Down Syndrome or another chromosomal condition - whether compatible with life or not.  It will NOT tell you traits such as eye color, genetic risk factors, and so on.  How you use this information is a personal choice.
7. Once you have a fresh or frozen embryo transfer, you enter the infamous "Two Week Wait" where time seems to stand still and your stress level reaches new heights.  There's a lot of discussion around how to survive the time you wait to find out if the embryo implanted, and most tips center around how to keep your mind busy.  A lot of women stock pile books or binge-watch TV series.  Part of the challenge is that most forms of exercise (a stress-relief tool used by so many people) will be off limits during this time adding both to your physical discomfort and your anxiety.  During this time, it's common to continue a hormone protocol, depending on your specific case.

These are just the basic steps.  When someone says they are having an IVF cycle, it could mean that they're having a transfer, or a whole new egg retrieval being done.  And this process involves so many decisions and choices I never, ever contemplated before being in this boat.  What do I need / want to do to prepare my eggs for retrieval?  This could mean medication, supplements, acupuncture (which is incidentally something my peers SWEAR by), clean eating or other special diets, specific exercises, massage, even special heat compresses.  The medications you might take during stimulation, while preparing for a transfer, or following a transfer will mostly be directed by your doctor but you do have some input, again including diets, supplements (ALWAYS clear them with your doctor - "natural" doesn't mean it won't interact with meds), exercise (if permitted), and so on.  It's overwhelming.

So this is where I am.  I am preparing for my first egg retrieval which for me means going through several more tests since I am new to this clinic, and panicking because I'm well within the 90 day window prior to retrieval when studies indicate you can most impact the quality of your developing follicles and I have NO IDEA what if anything I should be doing differently.  Next week I will meet with my doctor again to review everything and hopefully get the green light for the retrieval, after which my husband and I will have to go for informational sessions and to be trained on administering the injections at home to encourage egg development.  I'm attending support groups twice a month (one led by a therapist and one peer-led group organized under the awesome national organization RESOLVE), and we are also in touch between meetings as we're all in a high-activity state right now.

So, if your'e still with me after all this discussion, I'll ask you one last question - how many of you had any idea what's involved in IVF?

Because I sure as hell didn't.

Say WHAT?!

This past Monday, I had quite a thrill when I got to work with 19 other health activists from many parts of the country, right here in my beloved Philly.  Imagine a room with 20 passionate people: a few were more soft-spoken than me, prefering to quiety listen and gather their thoughts which they then shape into powerful messages; a few actually made me look demure (if you can imagine that); most are patients but the group also includes caregivers, professional patient advocates, writers, and community leaders; the activists range in age from me to our senior statesman in his early 60s.  We came together (thanks to sponsors & supporters the Digital Health Coalition, Klick Pharma, ImageThink, Health Central, The Body.com, and WEGO Health) with the idea of an ePatient Bill of Rights in mind.

Pretty explosive set-up, if you ask me.  Could easily have become a Hiroshima situation.  However, these activists were not only passionate, but extremely bright, insightful, well-versed in their particular area, and oriented toward the good of patients everywhere.  What could have been an atomic disaster was more like the best fireworks display I could imagine.

And a display that I'll be posting about soon, I swear.  I'm going to share with you the magic sign that represents the outcome of our session, major themes discussed, questions & concerns I want to hear your thoughts on, and where this is all going from here...just as soon as I can possibly get the post written.  But as I had to take time from work at a critical point in my current engagement to attend, I'm even MORE backed up!  I'm also trying to plan my office's Disability Mentoring Day as part of the National Disability Employment Awareness Month in October (yet another amazing post topic coming your way).  So, to do my post on the Coalition justice, I just ask that you bear with me a few more days so I can get it together.

But not to leave you high and dry - here is a picture from the session.  As you can see, I am making some (no doubt, mindblowing) point to the group...and talking with my hands.  This is apparently a ubiquitous "Jen" pose.  I think I remember what I was saying at the time...but would love to hear your guesses!  So let's have a little game, shall we!

WIN A UII PRIZE!!
Take a look at the picture below, and leave a comment with your guess at what I'm saying!  (Funny or serious, just not crude or offensive please.)  You have one week (cut off will be midnight on 9/29), at which point I'll pick the best and send you a small prize!!  You can also leave comments voting for responses you like best:)

Ready, get set, GUESS!

Photo used with permission of Klick Pharma: ©2011, http://klickpharma.com/. All rights reserved.



History Reinvents Itself

Philadelphia has so much history, it could make a person lightheaded.  I guess being one of the original 13 colonies, the first to support religious tollerance for all people, and home to game-changers such as Benjamin Franklin sets you up to be an amazing place.  Philly was the largest city in our country's early years, and the first official capital city until D.C. was built.  She's the birthplace of many crucial techonologies and services, such as printing in the colonies, free libraries, hospitals, volunteer fire companies, and even medical schools.  And don't forget some of the first and most-enduring US icons, including the Liberty Bell and Independance Hall.  Our streets today are jammed with amazing architecture representing hundreds of years of immigrants bringing old-world styles alongside new-world ideals and the evolving needs of an evolving population. 



Image found here.

Perhaps because of this extensive & long-lived history, I think all Philadelphians have a little kernel of patriotism seeded deep in our souls.  We may not always realize it's there, but give us a chance to stand side-by-side in honor of what's great about our country - or even to try to fix what is flawed, as did our forefathers - and it blooms.

It therefore seems only fitting that next week a group of people representing different communities will come together to discuss, debate, and draft another 'revolutionary' document - about 300 ft from Billy Penn himself.  (For any non-Philly history buffs, Billy is a larger-than-life statue who sits atop City Hall, is the largest freestanding statue on any building in the world.)  Next week, Philadelphia will play host to the Digital Health Coalition and their 20 recruited health activists who will draft the ePatient Bill of Rights.


Image found here.

 As a native Philadelphian and rabid health activist, I am honored and excited out of my eyeballs to be one of the 20.

The document we draft will be used to spur discussion and action throughout the digital community.  It will undergo a public comment period, and serve as a kickoff for a powerful media & policy push.  The day spent building this platform (Monday, September 19) will be recorded.  Our goal is to work toward an "ideal world" for ePatients.  And, our product will be unveiled during the succeeding two-day ePatient Connections Conference.

Image found here.

I invite any thoughts you want to share, any messages you would like me to carry to the table.  The point of all of this - the Coalition, the Bill of Rights, UII itself - is to make sure the work done by one is for the benefit of many.  Therefore, the more interests I can represent, the better off we'll all be.


Do you think I'll get to sign anything with a quill pen?  I've always wanted to use a giant quill...I think it would be quite dashing!

Drawing found here...and, I hope, at the table next Monday!!

IIAW 2011: 30 Things

It's that time of year!  Time for the Invisible Illness Awareness Week "30 Things meme".  You can learn more about the meme, the awareness week (a national movement started by Lisa Copen) here.  Sign up for Lisa's emails (packed with valuable links), and receive the download for a FREE eBook covering many aspects of life with chronic illness (including a chapter by yours truly).  This year's IIAW is September 12-18!

Please post a link in the comments to your meme!  Sharing these responses is one of the most exciting and powerful aspects of this movement.  Enjoy!

1. The illness I live with is: Sjogren’s Syndrome, Fibromyalgia, Dysautonomia, Localized Scleroderma, & Raynaud’s Phenomenon.

2. I was diagnosed with it in the year: Started getting diagnoses in 2001, at age 15

3. But I had symptoms since: 2 years old (1988)

4. The biggest adjustment I’ve had to make is: Knowing if I don’t make decisions to limit my activities, my body will do it for me and not the way I would have chosen to do it.

5. Most people assume: Either that I’m exaggerating my experience, that I’m a hypochondriac, and/or that OTC treatments should be enough.

6. The hardest part about mornings are: Moving.  I tend to be stiff and achy when I get up, and my hands & feet are puffy (inflammation more than fluid retention).

7. My favorite medical TV show is: I can watch a few episodes of Royal Pains, but I spend most the time arguing about the realism.  Won’t go near Grey’s Anatomy, House, HawthoRNe, etc.

8. A gadget I couldn’t live without is: My large microwavable heating pad.  I can hug it, lie on it, squish it into a shape, toss it in my suitcase, use it at work, or heat it up before leaving home/work and have it in the car.  I have a slew of other “warmth” products, I ‘ll have to write about it sometime.

9. The hardest part about nights are: Falling/staying asleep, poor sleep quality, certain bone pains that come on at night, almost always being too cold….

10. Each day I take __ pills & vitamins. (No comments, please) 5-9, not counting ibuprofen.

11. Regarding alternative treatments I: have tried a combo of moist heat, mild electrostimulation, and chiropractic therapies which was very effective.  Unfortunately my local practitioner had to relocateL

12. If I had to choose between an invisible illness or visible I would choose: We can all agree there are things about having an invisible illness that would be more straight-forward if it were visible (mostly with how others treat us).  However, I do like having the choice – sometimes – if and when I want to tell someone.

13. Regarding working and career: So far, (basically) so good.  Some challenges I have/had include: travelling caused problems, we work way too many hours, and its high-stress by nature.  I travel to different client sites, so I have to carry a lot of things with me and can’t settle in with things like ergonomic chairs.  But, my employer is pretty amazing – for example, they work with me for my accommodation to reduce travel.  And through being part of their Disability Network, not only can I be upfront about my limitations but have even gotten very valuable opportunities to hold a leadership role working with those far above my level on many projects. Overall, I struggle to handle this job, and can’t help but worry how long I’ll be able to, but for a shaky little rowboat at least it has good buoys.

14. People would be surprised to know: I doubt myself and question my limits every day.  People tell me (close friends and web acquaintances alike) that they can’t understand how I do so much – and the truth is neither do it, nor do I know that I’ll be able to finish things when I start them.  I’ve a deep seeded fear of what I won’t be able to do tomorrow so I have to do it today. 

15. The hardest thing to accept about my new reality has been: the roadblock it creates to forming friendships the traditional ways.  Sometimes it’s the result of skipping certain events, but other times it’s due to live decisions I’ve made based on my conditions.  For example, I didn’t live on campus in college, as I knew I needed family around to physically support me when I flared.  This had a major impact on my social connections.

16. Something I never thought I could do with my illness that I did was: my job.  I’m an auditor, which means an average of 55 – 60 hrs per week (far more during busy season).  Every day I do tasks that don’t require a second thought for other people but are a challenge for me, from traveling to carrying files around all day.

17. The commercials about my illness: don’t exist…however, Venus Williams was just diagnosed with my predominant condition (Sjogren’s Syndrome).  Therefore, there has been a sudden and overwhelming media outburst, bringing rare attention to the problem!

18. Something I really miss doing since I was diagnosed is: walking in the rain.  I actually don’t like storms, but if I had to get caught in a basic downpour or drizzle it was no big deal and could be kind of fun.  Now I go to great lengths to avoid getting wet in the rain, knowing it bring the risk of a respiratory infection and the promise of joint & bone problems.

19. It was really hard to have to give up: s

20. A new hobby I have taken up since my diagnosis is:

21. If I could have one day of feeling normal again I would: I don’t know what that feels like.  I had joint, eye, and mouth symptoms going back into my early childhood among other problems.  However, if I could have a time of physical abilities back, I would spin a color guard show one more time.

22. My illness has taught me: a work ethic.  To care less what people say.  To gear my life toward helping others.  If I go through something bad, I make myself ask “how could people who will face this next be helped, and what do I need to do to make that happen”.

23. Want to know a secret? One thing people say that gets under my skin is: “at least you don’t have ____”.  I’ve said it before and I’ll say it again – if you total your car in a horrendous crash and break both your legs, yes, it’s true it could be worse because at least you’re alive – but you still have two broken legs!  Why do people think just because it could be worse it isn’t bad at all?!

24. But I love it when people: ASK QUESTIONS.  I love when people ask me what my conditions are, how they affect me, how a specific situation might impact me, what I do about problems, how I want them to help me, etc.

25. My favorite motto, scripture, quote that gets me through tough times is: I have a few so it’s hard to choose, but two of my favorites are the quote by Shelby in Steel Magnolias which sums up my perspective on life “I need your support.  I’d rather have 30 minutes of wonderful than a lifetime of nothing special”; and the Robert Ingersoll quote, “it is a blessed thing that in every age someone has had enough individuality and courage to stand by his own convictions”.

26. When someone is diagnosed I’d like to tell them: do your research and hold to your priorities.  While you can’t put your head in the sand, you don’t have to give up everything that makes you happy either – if hiking mountains is what makes you happy, gear your health plan toward that goal instead of telling yourself it’s gone forever.

27. Something that has surprised me about living with an illness is: the self-respect it helps teach me.  Yes, I often feel bad about myself, hate my body, or feel guilty for how I impact those around me…but I’ve learned that it doesn’t mean I have to put up with cruelty, being marginalized, or being used.  I have so much to do and so little time and resources in which to do it, I don’t have time to be bullied.

28. The nicest thing someone did for me when I wasn’t feeling well was: my favorite “little thing” is when my best friend asks me where I hurt today before she hugs me.  The world could be crashing down around us, but she doesn’t lay a finger on me until she knows how to hug me without hurting me.

29. I’m involved with Invisible Illness Week because: it is a national (sometimes international) celebration of the joys & struggles I live with every day.

30. The fact that you read this list makes me feel: real, appreciate, and visible.

I can’t really say.  I was diagnosed a decade ago, at 15, so my interests have changed a few times, as you would expect for a teenager.
inging.  This passtime, which had always been one of my favorite things, lasted a year into my college experience.  However, I then began to find my Sjogren’s dryness has damaged my vocal chords/throat, making singing all but impossible.

Deadline Extended

Dear Readers,

WEGO Health has decided to extend the deadline for readers to fill out the Reader Insight Survey to the end of this week.  Thank you to those who did fill one out for me, I look forward to seeing what you had to say when the results are provided to me at the end of the program.

Based on the latest update I received, however, there are very few of you (who filled out the survey).  I believe the count of those who actually took the survey was 4.  I have over 1,000 hits on my blog this month.  I kind of doubt that each of those 4 people visits my blog 250 times in a month, so that has to mean there are more readers stopping by, and I'd really appreciate your feedback.  Some people have told us they don't understand why the survey asks questions to determine what kind of health activist the reader is - but it does have a purpose.  By understanding how you use information, I can try to provide more relevant and useful posts to you in the first place.

I really hope more people will jump in with the very kind Fabulous Four who have filled this out for me (and remember, if you filled it out for someone else's blog, that doesn't count for me so you'll need to do it again following my personal link).  Please please PLEASE fill out the survey for UII, here (http://bit.ly/onFNFA).  Thank you!

(And by the way, just WAIT until you see the next few posts I have in store ^-^ :D).

Reader Insight Program - Update & Plea!

Image found here.

You may remember that I’m currently participating in WEGO Health’s Reader Insight Program – helping me to improve my blog with direct feedback from you, providing you with instant social media tips, and finding the Health Activists among you for exclusive invitations to WEGO Health programs.

The program has been going on for about a week, and WEGO Health just sent me an update.  And honestly, the numbers are so low I can't even bring myself to share them with you. 

I know this is yet another survey, yet another link, yet another set of questions you're probably tired of asking yourself.  But, this is also one of the few ways I can get any information or guidance. 

There are a number of approaches to being a blogger.  Sometimes a person blogs because they want to discuss or share all kinds of things going on in their own life.  They may not even care if people read what they write, or hope that those who do read it are entertained.  Other bloggers are like clearinghouses for information.  They may never write anything personal, and most posts are about things they've learned, read, heard, or found online.  They are obviously trying to be helpful in the way they are most comfortable - constantly passing along information, whether about a specific topic or general news.

Then you have the rest of us.  Many bloggers post a variety of entries, sometimes passing on information, other times sharing a part of their personal life, and sometimes asking questions.  We are trying to interact with our audience.  Most bloggers I follow are like me in this way.  But we can guess what our readers care about for only just so long.  Eventually we need you to interact with us.

You know how I feel about WEGO health.  I mention all the time that I enjoy being a part of their network and have had many great experiences and opportunities at their hands.  But I don't expect everyone reading my blog to want to do the same.  If you don't want to join WEGO, that's fine!  Not a problem!  It's just not your thing.  But even if you don't want to join, you can take the very quick survey and help me out.  It will ask you a few questions aimed at determining your style of health activism - that's what WEGO's about and all - but also about why you read my blog, what you like, what you dislike, what I can do to be more relevant for you.  THOSE are the questions that I need you to answer.

My recent post about chronic pain is getting quite a bit of attention, thanks to Kelly at RA Warrior who included it in her blog carnival (you can see the other responses here).  The only reason I knew to put up a post on this critical topic is because Kelly interacted with me (as her reader) and brought up the idea.  I want to write many more useful, relevant, meaningful posts, but I NEED to hear from you to do it.

The program will be going on for another week, so if you haven’t had a moment to take the survey and share your thoughts yet, I hope you will!  Here’s the link to share feedback with me: Reader Insight Survey.  I really hope you'll help me out, because I want to have the best impact possible and need some guidance to do it!!

Readers – Help Improve My Blog & Share Your Thoughts!

I wanted to share this new project I’m working on with WEGO Health to learn more about my blog and about all of you who read it!

First some background: For those of you who aren’t familiar with WEGO Health, they’re a different kind of social media company focused on helping Health Activists – folks like me who use the internet and social media to connect with others around health topics.  WEGO Health’s mission is to empower Health Activists to help others, and they offer Health Activists the chance to get involved with video through WEGOHealth.tv, to learn and connect through webinars and chats, and to gain a voice in the healthcare industry through insight panels and the Health Activist Speakers Bureau.

Now WEGO Health is launching the Reader Insight Program – helping Health Bloggers like me to gather feedback from their readers, while telling you a bit about yourself.  At the same time, WEGO Health has a chance to see if any of you are Health Activists eligible for their programs.  I know many of you out there are as dedicated sharing health info and I have a feeling you’re Health Activists too!

I agreed to try the Reader Insight Program because I’m excited to learn more about why you visit my blog and how I can make it even more valuable for you.  I hope you’ll take a moment to share your thoughts with me by taking WEGO Health’s Quick Quiz (http://bit.ly/onFNFA). By taking the quiz, you’ll help me learn what you need – and you’ll also receive customized social media tips for yourself!

A few things to know about the program:

-          WEGO Health will gather your quiz responses and feedback for 2 weeks starting today. After the 2 weeks are up, they’ll create a Reader Insight Report for me (then I’ll share it with you!)

-          Your responses will be shared with me anonymously – please be candid!

-          Your information will not be shared or sold by WEGO Health

Thank you for helping me make my blog even more engaging!  I can’t wait to see you what you think!

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!

• http://twitter.com/fragileannie or It's Time to Get Over How Fragile You Are
• http://twitter.com/leeannthill or The Butter Compartment
• http://twitter.com/artappleaday or The Feeding Edge
• http://twitter.com/Abeeliever or Una Vita Bella (she helped start the whole photo display idea)
• Or, consider following those on my Twitter list or subscribe to The UII Connections Daily which gives a great compilation of activity on the wide range of II's represented in my Twitter list (you do not have to be on Twitter to subscribe to this "newspaper" feed).

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: http://svy.mk/eJvSow
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!

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

 

IIAW 2010: 30 Things...

You may recall, I began this blog ast September as part of National Invisible Chronic Illness Awareness Week (IIAW).  Well, it's nearly that time again!  This year, the National week will be September 13-19, 2010!  As part of the kickoff, Lisa Copen (founder of both IIAW and Rest Ministries) has brought back the HUGELY popular survey about our unique experiences with chronic illnesses.  I encourage you to fill this out for yourself (no matter what diagnoses you may have) and repost.  If you do, remember to put a link to your post on Lisa's IIAW website!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Sjogren's Syndrome, Localized Scleroderma, Fibromyalgia, Dysautonomia, Osteoarthritis, Raynaud's Phenomenon.

2. I was diagnosed with it in the year: 2001 when I was 15

3. But I had symptoms since: 1988 when I was two

4. The biggest adjustment I've had to make is: I adjusted what I wanted to do with my life – now I'm focused on building UII into an established not-for-profit organization.

5. Most people assume: My age means my conditions don't affect me as much as they do older people.

6. The hardest part about mornings are: Moving.  Most of the time I'm stiff and my upper back is messed up from the way I slept.  Sometimes I have morning stomach aches and am very nauseas, especially if I woke up too early.

7. My favorite medical TV show is: I can tolerate Royal Pains but that's it.

8. A gadget I couldn't live without is: Microwavable heating pad.

9. The hardest part about nights are: Temperature and humidity changes from the daytime (could be getting better or worse, a change is hard no matter which direction).

10. Each day I take _9 (not counting pain killers)_ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: had success with a combination of chiropractic adjustments, moist heat therapy, and mild electro-stimulation for my back (though the benefits were absolutely systemic).  However, the practitioner I went to closed and I haven't found a doable replacement.

12. If I had to choose between an invisible illness or visible I would choose: I wouldn't pick solely based on visibility.  Ask me about what the illness affects, I'd have an opinion.  But the entire point here is that invisible illnesses are JUST AS debilitating as visible ones, not that they're MORE severe necessarily.

13. Regarding working and career: while I have revamped my long-term career goals to be focused on my conditions, in the meantime I'm working a demanding fulltime job.  Most women I know with similar conditions are middle aged or older and had to give up their careers.  I was diagnosed as a teenager and had to face what if I never got to start my career.  I've managed to get to the starting line but am competing against smart young people usually without chronic complications, and every day I make it to work I know the rest may be numbered and my life could flip at any time.

14. People would be surprised to know: I doubt myself and question my limits every day.  Everyone tells me (close friends and web acquaintances alike) that they can't understand how I do so much and I seem to have such energy – well, I don't say that as if it's some great power of mine.  It's my deep seeded fear of what I won't be able to do tomorrow so I have to do it today.  At least it cured my adolescent procrastination…

15. The hardest thing to accept about my new reality has been: the roadblock it creates to forming friendships the traditional ways – though it has been the reason I learned just how great online networks can be for building real relationships!

16. Something I never thought I could do with my illness that I did was: my job.  I'm an auditor, which means 40 hours per slow week, and 60+ hours per busy-season week.  Every day I do tasks that don't require a second thought for other people but are a challenge for me, from traveling to carrying files around all day.

17. The commercials about my illness: don't exist.  Well, there's a few about Fibro (which rely on sparkly images to indicate nerve involvement) and osteoarthritis (which show hunched over women who straighten up when taking new medicine).  I've never once seen a commercial for Sjogren's, Scleroderma, Raynaud's, or Dysautonomia.  Oh my.

18. Something I really miss doing since I was diagnosed is: walking in the rain.  I actually don't like storms, but if I had to get caught in a basic downpour or drizzle it was no big deal and could be kind of fun.  Now I go to great lengths to avoid getting wet in the rain, and even so have to combat the joint problems rain brings.

19. It was really hard to have to give up: color guard and singing.  In high school, I was a strong member of a competing color guard and had to skip the year I was diagnosed.  While I finished out the last two years in high school, it was by the skin of my teeth and I couldn't continue in college.  Singing, which had always been one of my favorite things in life, lasted a year into my college experience, but after that I began to find my Sjogren's dryness has damaged my vocal chords/throat just enough to make formally singing in a group impossible.

20. A new hobby I have taken up since my diagnosis is: blogging?  Is that a hobby?  I was diagnosed very young so it's hard to say, because I think I would have gone through many interests in the past 9 years anyway.

21. If I could have one day of feeling normal again I would: I don't know what that feels like.  I had joint, eye, and mouth symptoms going back into my early childhood among other problems.  However, if I could have a time of physical abilities back, I would spin a color guard show one more time.

22. My illness has taught me: to gear my life toward others and be proactive.  If I go through something bad, I make myself ask "how could people who will face this next be helped, and what do I need to do to make that happen".

23. Want to know a secret? One thing people say that gets under my skin is: "well at least you don't have ____".  I've said it before and I'll say it again – if you total your car in a horrendous crash and break both your legs, yes, it's true it could be worse because at least you're alive – but you still have two broken legs!  Why do people think just because it could be worse it isn't bad at all?!

24. But I love it when people: ASK ME QUESTIONS (for information, not to 'prove me wrong').  I love when people ask me what my conditions are, how they affect me, how a specific situation might impact me, what I do about problems, how I want them to help me, etc.

25. My favorite motto, scripture, quote that gets me through tough times is: I have to be honest, I have different ones for different situations.  I have a ring that says "Live His Word" to remind me to have good motives.  I have a bracelet that says "The greatest thing we can do for our Heavenly Father is to love His children" which reminds me to turn the other cheek.  The quote by Shelby in Steel Magnolias sums up my fears about my life "I need your support.  I'd rather have 30 minutes of wonderful than a lifetime of nothing special".  And, the Robert Ingersoll quote, "it is a blessed thing that in every age someone has had enough individuality and courage to stand by his own convictions," keeps me from getting jaded.

26. When someone is diagnosed I'd like to tell them: do your research, and hold to your priorities.  While you can't put your head in the sand, you don't have to give up everything that makes you happy either – if spinning color guard or going to the shore or hiking mountains is what makes you happy, gear your health plan toward that goal instead of telling yourself it's gone forever.

27. Something that has surprised me about living with an illness is: the self-respect it helps teach me.  Yes, I often feel bad about myself, hate my body, or feel guilty for how I impact those around me…but I've learned that it doesn't mean I have to put up with cruelty, being marginalized, or being used.  I have so much to do and so little time and resources in which to do it, I don't have time to be bullied.

28. The nicest thing someone did for me when I wasn't feeling well was: my family does wonderful things all the time, but my favorite "little thing" is this: my best friend always asks me where I hurt today before she hugs me.  It could be months since we've seen each other, she could be in the middle of a crisis, and everyone around us can be acting crazy, but she doesn't lay a finger on me until she knows how to hug me without hurting me. 

29. I'm involved with Invisible Illness Week because: it takes the issues I work with every day (personally and for UII) and builds them into a frenzy on the national stage!

30. The fact that you read this list makes me feel: Visible.

 

 

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