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.

Non-Traditional Mothers' Day

Happy Mother's Day, from the bottom of my heart.
To my mom, to the moms in my family, to the moms I'm friends with.
You know how blessed you are to have your kids, and that's one of the reasons in itself that your kids are blessed to have you.

Please post pictures of your handmade, glitter-covered cards, 'check in' from restaurants you're at, and tell the world how much better your life is for having your kids.

Please understand why I won't be hitting "like".
Why I may not even read the posts at all; may scroll right past the pictures.
Understand that it is how I have to take care of myself right now, and not my way of making you feel guilty or casting a shadow on your celebration.
If I didn't think those things were worth celebrating, I wouldn't be working so hard to have them in my own life.

Understand that I am already living much as a mother: getting up at crazy hours to get to daily appointments, stressing over how to balance work obligations with my family priorities, and thinking every day about my someday - children's welfare (not to mention existence). I even endure physical aspects, but instead of labor pains and a strained back mine are injections, anesthesia, surgery, vaginal ultrasounds (which are not exactly as "non - invasive" to me as a woman as medicine wants to label them), body - wide side effects of hormones, and exercise limitations.
And yes, not unlike children themselves, infertility can totally screw up your sex life in ways you may have never imagined. For people like me, it is not in any way "the best part of making a baby".

Understand that in my journey, I am still hopeful.
If I wasn't, I wouldn't be continuing to go through the things I do.

Understand also that for many women, THAT BABY WILL NEVER BE.
IVF doesn't always work, even adoption isn't always possible or may be an option some people do not want to take.
Understand that childfree is a choice for many, a default for some, and that I am quite reasonable in my fears of it happening to me.

Understand that telling us "it'll happen someday" is not helpful; "I love you" is; "I'm sorry" is; "I pray for your happiness" is.

And if you are so inclined, share my post as I have shared the posts from my friends who are also non - traditional moms on Facebook today.  Use the social media network of your choice.

My post is complete with pictures for my lost baby- the ultrasound of my daughter Grace when she lived so briefly within my womb, and where she now lives represented by a mustard seed tattoo and eternally in my heart.

What's It All About, Anyway

We have a lot of expectations in (and of) this life.  

For many of us, those expectations include having kids and building a family.  Obviously, this has been a topic of great importance to me lately, for at least the last 20 months of trying to conceive at a minimum.  At the outset, I had some pretty basic expectations of the stages involved, and what choices or options or components there might be with each one.

This is your first glimpse into how my brain works, isn't it.  Yes, I think in flowcharts, lists, and graphics - so what ;)

That was pretty much how I thought it went for most people, for quite a while.  It was my impression growing up and through the first several months of trying.  But maybe a year ago, I began to learn that a whole lot of people - including us - have to consider a few more things.

Oh yes, for those of you who may not have had the opportunity to explore things at this level, it's just a bundle of fun.  I'd like to add that the monitoring accompanies just about all parts of this process, unless you're fortunate enough to sustain the pregnancy and graduate to abdominal ultrasounds.

But what happens when it doesn't work?

This is when the questions start that have no answers, such as what method is most likely to be successful?  Or the most painful question, why?  And one of the hardest - what does moving on mean for me?

It's within this last box that I've been living.  What do I do now?  Do I keep trying?  If so, which methods are open to me, and which can I handle?  What if I run out of options?  What if I simply can't handle this same path anymore?

And most recently we've confronted the question of what's it all about anyway?  What is it we're really after and why?  It is these answers that are setting us on our next leg of the journey.

Shawn and I are seriously looking into adoption.  But as we discussed today, it's not because we've exhausted everything else, that we think this is the "only way" to have a family.  And we don't care for it when people act like that's why we'd make this decision.  We are genuinely excited at the prospect.  Bringing someone into our family through this process is going to be a great, if trying, experience and this new aspect of how our family will unfold gets us going.  The way we see it, I have other options.  I can continue the treatments I've been doing, for instance.  But the other day I had a realization.  All along I've wondered if I "should" have kids, knowing what I could pass on, and if that's a reason at a bigger-picture level for why it isn't working.  What if the issue isn't so much - or entirely - what I could pass on but what the process might do to me?  Once you get into the heavier treatments, you put your body through a LOT.  Otherwise healthy women struggle with the chemical manipulation, physical restrictions, and side effects of the treatments on their bodies.  You have to trick your body into doing things, even into thinking it's pregnant so it won't reject the baby.  As someone with my kind of complex history, how will my body endure these experiences?  If I do manage to successfully "fake it 'till I make it", I'm almost guaranteed to have a major flare afterward, and as we all know we can't predict the lasting effects of these experiences.  What could this do to me as a mother?  And what would it do to Shawn as a father if he had to care for a new baby and me at the same time?  What if this is really about my ability to raise my children?

What's it all about, anyway?  Why do we want to have kids?  Because we want to be parents.  Once in a moment of guilt I told Shawn I feared how he might feel if I was the reason he couldn't have kids and he pointed out that he didn't marry me just to HAVE kids, he married me because he wanted to be parents with me; it was so we could RAISE kids.  For us, it's all about the family we'll have and not so much about how we have it.  

For as old as I generally feel and while it's true my body is not a typical 28 year old body, when it comes to the fertility world I am still young.  We could get five years down the line, decide we still want to try for a biological child, and have time to work with.  Adopting in no way closes any doors at all for how we'll continue to build our family.  But continuing with treatments right now no longer seems right.  We're not closing any doors - we feel that if I were to get pregnant naturally at this point it would indicate to us that my body would equipped to handle it and we'd welcome that - but we aren't going to try to force it for a while.  But it is still the right time for us to begin raising kids, so we're turning to the adoption world, and couldn't be more excited.

This is an incredibly personal decision, and I absolutely expect that you will each have your own opinions and answer for what it's all about to you.  I completely respect your decisions and know I can count on you to respect ours.

Weeds

Snazzy pot pic found for free, here.

No, not that kind, silly!  Geez, what do you take me for, really?

Although, while I've never tried pot myself, as it is slowly becoming legalized in more states across the country (and is already in use in other countries around the world) for medicinal purposes which may be relevant to our UII community, perhaps it will bear further scrutiny at a another point in time.  I may need to find a subject matter expert on this, though.  Hm....

Anyway, no.  I'm not referring to reefer.  I mean the regular old garden-variety weeds (ha, yes, literally in my garden!) which have overrun my home.  In case I forgot to mention it when I started to blog again this year, we bought our first home at the end of December and until now, I never had much of a garden.  I was aware I don't have a green thumb; in fact I think it's downright brown.  I've frequently joked that when they see me coming, houseplants simply die of their own accord to save themselves from suffering at my inept hands.  (Hey I didn't say I was funny, I only said I try to be.)

Then we bought this house.  With roughly a half-acre of land.  And lots of trees, and shrubs, and bushes, and   over a half-dozen flower beds depending on how you count it.  Which abuts an arboretum next to a state park, further fostering the spread of indigenous flora.  Oh my.  At settlement, the sellers told us a bit about all the planting they'd done and how they picked some varieties specifically for certain reasons, yada yada yada, leading me to the conclusion that I would have some impressive blooms come spring and summer and should probably learn how to tend these gardens.  What I didn't expect was that these beds (not to mention the perimeters of the property) appear to be the most fertile soil I've ever seen, as evidenced by the epic proliferance of weeds that have tried to reclaim the land as their own.

That's right, I'm waging war.
Several times already this season, I've taken the largest sheers we have to the front and sides of the house, where the forests of weeds have all but hidden our front door.  My mother in law, who does garden (whew), came over to help me start pulling weeds and thinning the herds of other plantings.  I recall we spent 3-4 hours at it that day and only got about 85% of the way through one flower bed.  We're discovering that there are only a small handful of actual plantings in each bed but the beds have no mulch or anything and are completely overrun.  Speaking of overrun, say hello to the back 35-40% of my property:

Welcome to wisteria gardens...hey, maybe I can make this a destination and charge admission...!

Because what does a beginner (and bumbling) gardener needs on top of hundreds of well-rooted weeds in her flower beds?  Why, a yard full of very mature wisteria of course!  Let me just add, when these vines intertwined in all the trees and shrubs burst forth with these somewhat grape-scented clusters I took to the Google machine and found out what wisteria actually looks like.  I believe this is Japanese Wisteria which, as you can see, has made an impressive climb into these tall trees across mine and my neighbors' yards.  It is beautiful and I don't want to obliterate it altogether, but holy shnikes people, this is a bit much don't you think?!  Oh, and amid the low-lying vines, there are other shrubs and plants and ... dun dun DUN ... poison ivy.  Which means these two little homeowner newbies aren't going in after the vines on our own.  We're thinking of waiting until the fall when it all starts to die down for the season and hiring professionals to hack it back.  Which of course puts images of machete-wielding treasure hunters in my head...

Another amused gardner commented about the use of machetes, here.

(((Shakes head))) Enough of that!

With all of this in mind, I celebrated our nation's birth on my day off Thursday by venturing out to one of my flower beds to claim my independence from these tyrannical weeds.  To guard against excessive sun exposure, bugs, and contact allergic reactions, I donned long jeans, a long-sleeved t-shirt, and my UII baseball cap, and still only got in about 45 minutes of work before the heat was too much.  I was fairly impressed with myself, though, because I took on the absolutely enormous tall weeds along the side of my garage.  You know how they tell you to lift with your legs and not your back?  Apparently I follow these rules, including while pulling weeds, as evidenced by my strungout hamstrings and bottom muscles for the last day and a half!  I also somehow managed to get six - yes, SIX - bug bites on my shoulder blades (THROUGH my shirt) and two on my FACE in that space of time.  For comparison's sake, I haven't really been bitten at all while sitting around the firepit in the evenings.  Seriously?!

My approach to my weeding has been simple - if it looks like a weed, or I simply don't like it, it comes out.  I realize some of the things I'm pulling may be intentional plantings, but I don't like them and there's far too much going on out there!  And after all, it's MY HOME, so it's my choice:)  (That never gets old, haha.)

But I also made one exception.  As I go around yanking and yoinking, I skip over the clover.  I know they're technically weeds too, but it's this cute kind of clover, growing only in small clusters in the beds, and just as I can arbitrarily rule that some non-weed must go, I can dictate that this weed shall stay!

Cutie pies found here.

Besides, in the otherwise unpleasant task of weeding where I see things I don't like (worms, beetles, spiders, ick blech ack ugh), I get a peaceful satisfaction from scanning the surprise clover patches I uncover for that elusive four-leafer.  Haven't found one so far, but I keep looking.

And afterall, I reminded myself, you can't find a four-leaf clover if you pull all the weeds!

I just love it when I sneak a little wisdom in on myself.  Kind of catch myself by surprise, and am reminded of things bigger and greater and grander than me.  I can play demi-god with my flower beds, but ultimately it's not up to me to determine which things should stay and which should go in life.  There are a lot of weeds in my world and in my past, but if all of the negative things went away what kind of person would I be?  I'd have no drive, little ambition, no sympathy, and no purpose.  I'd likely be alone, having run off Shawn and any other worthwhile companions either through my coldness toward others or my blasé approach to life.  Perhaps I'd be living with my parents or worse, in deplorable conditions, never having been inspired to manage money.  And I certainly wouldn't know any of you without a reason to write this blog.

Maybe I am a four-leaf clover.  Maybe my life is the rare find...what are my leaves?  My gifts, my treasures, my capabilities and blessings that make me unique?

1. My husband and family, who are unique because they give me so much support, and not everyone is this lucky.
2. My business/financial perspective, which helps me maintain some level of stability in my unstable life and lets me dream big knowing the small will be ok.
3. My faith, which I know is something every person has a unique relationship with but I have to acknowledge that for my many sickie peers who feel forgotten, I know I am not.
4. My diagnosis, which underlies everything else.  I need my family's support more than I should because of these medical challenges.  I crave stability for many reasons, including as a counterbalance to the uncertainty about my medical situation even from day to day and over time.  My continued faith is, to some, surprising given the unpleasantries of being diagnosed with a chronic illness in my teens and the chronic challenges that come with that.  

To come full circle, this is my weed.  Without it my life may be cute like the three-leafers we see above, but nothing special; with it, I feel like a rare find:)  And don't think I don't "get it" - I don't think we should necessarily pretend we enjoy the weeds, but we do need to take that step back and look at the whole picture sometimes.  I think it's those moments when we think "just when something was going well, this weed popped up and spoiled it" when we're seeing our fourth leaf and just don't know it.  Keep an eye out for those times that show you how rare a find you are too.

You Don't Say

As some of you may know, I recently started at a new job.  Yes, that's right, I've moved out of the world of the frazzled auditor and into that of the in-house accountant.  My new coworkers are very nice, and I get to be part of some process analysis and revisions which are very exciting to my inner dweeb.  But the best aspect so far?  I leave every day before 5:30!!!  That's right, I'm bragging:)  (Ok yes there will be critical times when I have to stay 'late' but that's part of the biz, and late here will mean 6-7ish.  Holy mackerel.)

I've come into the team as a Senior Accountant, commensurate with my experience and the need to complete my CPA (yeah...that didn't die).  The same day I started, another new hire from a different Big 4 firm came in as an Accounting Manager (he had been a manager at his former firm).  I think we need a nickname for him...hm...let's call him New Dude, Too (NDT for short).  NDT and I have found that it was beneficial to start together because we can relate to each other's backgrounds and help each other transition to our new worlds.  None of our direct peers and few of our extended coworkers come from a similar background, making our connection that much more valuable.

There are aspects of the transition to a new role that I anticipated, such as learning to express myself in ways my new team understands and establishing my reputation anew.  Naturally, there are also things I couldn't prepare myself for, like the different approach a small company has to onboarding and training.  Figuring out how to more autonomously structure my days based on the combination of ongoing tasks and special projects on my plate is a surprising though welcome learning curve.  I realize these types of challenges are familiar to most people, but this is my first job change as an "experienced" hire so I find myself marveling at the experience itself!

NDT and I find ourselves on the same page about most things so far.  We like the same people, we note the same peculiarities with others, and ask ourselves the same questions as we learn how the company functions.  Since we are at different levels, we have been asked to take on different tasks, but we've leveraged that too. He's been working on projects related to mapping accounts which he explains to me, and I've been learning the nitty gritty things like how to work parts of the accounting system which I show to him.

I'm aware that as we're each establishing our images with the rest of the company, we are also developing our understandings of each other.  Maybe I'm not supposed to say this, but men at the Big 4 just tend to be more traditionally polite; some might say chivalrous.  They offer to carry things, volunteer for errands, and there are some you will never see walk through a door before a woman.  My observation is a combination of my personal experiences as well as discussions I've had with countless coworkers of both genders.  Perhaps it stems from the emphasis these companies place on classic manners such as which silverware to use for which course and email etiquette   As a pair of X chromosomes, I have to say that this is pretty nice.  It simply makes someone feel good to have someone else take a little extra effort to make their day a bit easier.  And as a clutz with occasional physical challenges, this kind of treatment can really come in handy.  However it's always been my opinion that men don't necessarily OWE this to women, and certainly that women can and SHOULD return the favors from time to time.  I'm just as capable of holding the door for a man or taking a package from an overloaded coworker.  Sometimes it just seems right to take care of my own task or get something for myself, even if it's just for the sake of taking turns.

I suppose this is why NDT made an interesting observation the other day.  It was a particularly nice, warm day and our company has a few tables outside for employees to use as well as a small walking track, and NDT and I like to use our newfound energy and time to make use of these amenities.  On this particular day, we had grabbed our lunches and headed out to one of the tables.  On the way, I offered to hold a door and press the elevator button, but NDT wouldn't let me.  During the ride downstairs he observed "you're a very ... [pause] independent [pause] person.  Like the other day when you wouldn't let me get the chair".

Me?  Independent?  Perhaps to the point of stubbornness?  Tosh.
...Well.  I don't know I'd use the word 'independent'.  Maybe 'empowered' or 'capable'.
...Ok, independent.  But that's a good thing!
...Ok yeah I see your point.

Fr. Anthony Messah describes what's it like to be an "independent-aholic" with this graphic, here.

So I tend to be a bit strong-willed, empowered, enabled, self-propelled...so what?

We could go with an old-fashioned childhood experience psychology here if we wanted.  I have strong, distinct memories from elementary school of teachers asking for a boy in the class to carry a heavy box.  The funny thing was, I was larger and actually stronger than most boys in my class at that age.  I was simply more capable of carrying the box than they were, but the teacher only asked for boys.  I usually challenged the teacher (yes, at the tender age of, oh, 6 or 7 until 11); some would acquiesce and ask for any student capable of carrying the box, but others would still insist to my face that they wanted a boy to do it because it was really heavy or a girl might get hurt.  It wasn't until well into my 20's that my strength began to fade.  I may have always been a clutz and accident prone, but I was also particularly strong in my younger life.  And those memories stayed with me.

But we could also acknowledge the effect of a chronic diagnosis on my will.  My strength as a child was sometimes dismissed, but on top of that it was threatened by chronic diagnoses as a teenager.  It's well established (in my mind) that this was the point when I developed the mindset that I don't know how long I can do any given thing, so I'm going to do anything I can as soon as I can, because I don't know how long that opportunity will last.  Maybe this same mindset led to this "independence".

Or you could ask my parents, who would say I was born that way.  There's a legendary story in my family about the L&D nurse who observed during my first bath that I had a "worried, worried look" and my innate perspective for simultaneously respecting and questioning authority.  I never took any explanation at face value, though I wouldn't exactly violate it until I was sure it was flawed.  It is said I was born middle-aged, with an independent questioning mind and a will that considered other people but didn't automatically agree with them.

And so between a natural inclination, a childhood perception, and an adolescent encounter, I stand before you today, "independent".  This is one of the first traits a new coworker noticed and went so far as to comment on to me directly.  Well, you don't say ;)

Enervated

I learned a new word this morning: Enervated.

Image found on a very cool Visual Dictionary site from Manhattan Prep GRE Blog.  I relate to this hippo.

I was a voracious reader as a kid.  Remember those summer book lists they put out for each grade level, and you were supposed to pick one or two books - depending on your level and just how far the school board had that stick up their collective butt that year - which you would read over the summer and report on at the beginning of the next year?  And inevitably, it would be two days before Labor Day and your mother would be hanging over you threatening not to let you enjoy those last few days of freedom if you didn't read that book already even though you both knew she was bluffing because unlike the school board your mother's butt was stick-free?  I loved those lists.  There were summers where I read the obligatory books from my list, but they had posted the lists publically so I went through the ones for other grades which were always 10 times cooler than my list and read a bunch of those.  One year, I think I knocked out the entire list for two grades.  And yes, I did other things, but no, I wasn't much of an outdoor person and I think in retrospect we can be glad I didn't spend more time in the sun at that age!

Anyway, as a result of reading so much I've always had a pretty respectable vocabulary.  Of all the "nerd" things I did, I never really minded being mocked for using "SAT words" because I liked being able to say precisely what I meant.  But when you're a smarterish kid and go to a smarterish kid college (Villanova) and work with smarterish people in a professional setting, it takes more than compulsory school reading lists to maintain this reputation.  It also doesn't really help that my best friend from school is an English major and my best friend now is a Journalism major with an unimaginable flair for all things peculiar and unusual.  And I'd NEVER want to let you, my dear readers, get bored with my basic and unenlightened language when I write!  I still love to read, but don't have the time to take down the volume of literature I did in the good ol' days, so now when I need a word to make my point or to do so in an engaging way, I leverage the wonder of the internet and hit Thesaurus.com!

So how did we end up with "enervated" today?  Well, all week the husband and I have been trying to take down some household projects which involved a significant amount of time running errands and traipsing through stores to find just the right thing at just the right price as well as drilling, assembling, moving, and arranging several rooms worth of goodies.  I've hung curtains in two rooms and a ladder on the side of the garage, made a truly manic pass or two around the yard with an imposing set of hedging shears, and assembled furniture.  In the process, I learned a few things:

• Sauder brand furniture is gorgeous and of a delightful quality, but heavy (each of our two dressers weighs as much as I do or more) and when they say "assembly required", they ain't kidding!  
• Left in the wrong hands (mine), even a moderate pair of shears can be leveraged to take down several bushes not to mention weeds, overgrown flower beds, and some God-awful plant by the AC compressor.  Also, with shears in hand I feel like a lady Paul Bunyan, felling microforests of weeds with one pass of my blades...but I digress before this gets creepier.
• My favorite weather is that which keeps me in a very mild sweat, and this makes me feel invigorated and up to taking on physical challenges, but also obviously makes it crucial to hydrate myself carefully.  Because of my combination of Sjogren's Syndrome and Dysautonomia, managing hydration levels involves a balance of taking in the right quality and quantity of liquids as well as the right volume of salt at the right times (I use a high sodium diet to avoid Beta-blockers).

And so, after yesterday (the apex of my physical activity for the week as performed on the hottest day) and without having consumed a drop of alcohol, I awoke this morning feeling remarkably hungover.  It took me a few minutes to piece together that it was really straight dehydration.  Guess I didn't quite hit the magic combination and timing of fluids and + salt yesterday after all.  I also went to bed last night with significant arm and shoulder pain from overuse, so at least it wasn't a surprise when that was my worst symptom again today.  

I wanted to come on here, share with you this tale of exertion and dehydration, and describe how my arms feel...but I needed just the right word to describe it:)  Unable to come up with this adjective myself, Thesaurus.com provided this gem:

Enervated: adjective; without vigor, force, or strength; languid.  

Example of use- "He had come in dehydrated, with sunken eyes, too enervated to even cry." 

(How ironic!)

Child, after my own heart, cited as Funny-potato.com but sourced from this vocab study guide.

I think that says it all.  Most of my body, and particularly my arms, are enervated.  I'd love to soak in a tub but it needs to be cleaned first and I don't have the strength to do it right now.  On top of it, my mother-in-law may come by to help teach me to garden (perhaps with a little less destructive yet cathartic abandon) and my Journalist friend offered to hop over and go on a trail walk with me.  I know that when my body feels like this I should really give it a FULL day truly recuperating, but I can feel my energized spirit fighting my enervated body on this one!  Perhaps I can try to limit myself of bouts of activity interspersed with couch-floppage?  I'm sure my friend will be just as happy to veg with me, the puppy, and a glass of iced green+white tea with mint, right?  Cause that sounds mighty good to me...

All-too-realistic comic strip by Chris Spain, found on his blog from 8/20/2012.

You Can't Finance Energy

Illustration by Tim Bower, originally published with this article in Vanity Fair.

Well if that doesn't look like the way I feel on the inside most days....

Tell me if this scenario sounds familiar to you:
It's morning (or lunchtime or afternoon or the middle of the night during an insomnia spree or basically any time of day), and you want nothing more than to lie in bed a while longer.  Not because you're comfortable - in fact, you may be in pain.  But because getting up requires moving your body and that requires energy and you don't have any.

But you do it; you get up.  You have to.  You have a child to get off to school, a friend to meet, a boss waiting for a presentation, and you have to get up.  Furthermore, after you slog your way through a morning routine and are able to leave the house, you have to smile, pay attention, join in conversation, solve problems, and navigate other interactions in this world of ours which all require - you got it - energy.  How are you supposed to do something with nothing?

What's that?  A resounding chorus of "YES, THAT'S MY LIFE"?  Thought so.

Which of course means the next part will sound familiar too.  The way so many of us get through this is by doing what I call "financing energy", but I don't think this is a very good idea.

When we say we're going to "finance" something like a car, house, or even an education, we mean we're going to borrow money for the purpose of making a major purchase and pay it back over time.  We agree to give up a smaller amount of our money each month for a period of time so we can have something bigger & better right now.  Usually, at least if we do it right, we first consider how much we can handle giving up each month to make sure we don't "over extend" ourselves and if we were right, this works just fine.

The problem is that energy doesn't work that way.  You could say that we give up some money to get energy when we buy and consume coffee, energy drinks, even high-sugar items, or any  other device or trick we can buy that results in what appears to be energy.  But in the end, the only way to pay back energy is with energy.  You can't trade money for it.  If you use this energy now, you won't have it later - and furthermore, you can't spread out that "cost", you have to pay it all back right away which means you won't have any energy left for other things for a while.

Oh and the way we pay interest on purchases we finance?  Where we pay a little extra in total for the luxury of spreading out the expense?  Our bodies didn't forget that either.  If you expend more energy that you really should have used, you won't just be out of energy tomorrow, you'll feel worse than you started today.

Financing energy is a dangerous, if common, practice.  It almost always ends in the bodily equivalent of foreclosure...or one might say, forceclosure.  (I know, I'm slipping into Jen Pun Land, but this one's actually pretty logical.)  An attempt to obtain more energy now than you should have will probably result in a total loss of all energy for a period of time and cause you some level of suffering.  So, we have to find alternatives.

Obviously, the best solution would be to space out tasks to respect your energy limits (much like credit card limits in this case), but this is obviously difficult at best.  If this can't be done, we can try some less ideal options that might still save us the pain and regret later.  A difficult but effective solution is to learn to say "no".  No, I can't run that errand today.  No, I won't be attending that event this time.  No, you will need to wait for us to go over that.  It's a fine line, because sometimes saying no leaves us feeling controlled by our diagnosis but it's really the other way around, we're in control because saying no now means we'll be able to say yes to things later!  We have to remind ourselves, and each other, and those around us, that it's ok to sometimes say "I will be happy to do that tomorrow" or "please let me know next time that comes up".  We fear missed opportunities, perhaps even more than the average person.  But when we take out the energy loan we can't pay back, all we really do is guarantee ourselves a whole lot more missed experiences.

Instead, let's build a new "bank" for ourselves, where we make deposits - running an extra errand on days we have some extra time, doing favors for others when we can so we don't feel bad for asking them to return them later, or even strengthening our foundations by doing things to make ourselves healthier through diet, exercise, and proper rest.  Let's create a culture where "saving" is good; where reserves are built up before they are drawn down, and where balance is valued.  We are not the USA; we do not have a national debt and cannot print money.  Just like our society is realizing across the country (and globally), it's time to make a habit of living within our means.

Ironically, as I was about to hit publish on this entry I saw the following post on Facebook.  Seems I'm not the only one with this train of thought today!

Just Another Day

Drama masks found here.

As any good Sickie knows, there are times we just aren't doing well.  Times when we're run down, experiencing increased symptoms, and may be having heightened disease activity.  These times are unpleasant and, especially as an activist, I spend a lot of time and effort trying to convey just how severe these bouts can be.

Among ourselves, we often discuss the way our society encourages us to suppress this reality.  We're supposed to put on a smile like the face on the left even when our bodies and souls feel like the face on the right.  If asked "how are you?", any answer other than "fine" is considered impolite.  Naturally, this adds to the feelings of isolation we tend to have and can an even contribute to the phenomenon where those with invisible illnesses begin to question their own sanity - and sickness.  It is necessary for us to have ways to explain what we go through that resonate with "the outside world".  This is why diagnoses are so important - a name, given by a doctor, means it's real, right?  Medications and treatments are only given for "real" problems, of course, and having unified terms for hard-to-describe symptoms, such as flares, help us unite ourselves as well as demonstrate the validity of our experiences to others.  And this is important.

On the other hand, at the same time that we are trying to validate ourselves, we also have a singular reality to deal with - we are sick.  Every day.  Not always to the same degree, and affected by a myriad of factors, but still "sick".  And if we were to get worked up every time we hurt, are weary, or experience some other common symptom, we would eventually cease to function altogether.  And so we develop our own sense of scale; our own perceptions of what's worthy of some emphasis and what's par for our own course.  We simply do not want to live in a constant state of drama - it's bad for us and it can suggest to outsiders that we are drama mavens rather than reasonable people going through unreasonable challenges.

But these two facets - validating the severity of our situations and moderating our own daily sense of peril - can come into direct conflict.  After all, it's rather hard not to sound dramatic when the word for a burst of illness is called a flare, don't you think?

Yet another reality, one I discovered while trying to write a laid back-sounding email requesting information so I could reduce my stress and avoid making myself sick.  Oh bother, one battle at a time, I suppose.  I think I'll channel Eeyore while I head off to bed and leave the problem of refining the English language to someone more qualified.  Good night!!

I'm considering having this made into a sign for my bedroom door .  In the meantime, you can see the original site, here.

Kindling

Fire is a life source.  We all know the cliches, about how fire transforms, it creates and it destroys, it changed human existence and in fact the world forever.  It is huge and yet it is nothing; it has no substance.  It is terrifying, but it is also beautiful.

But fire also dies.  Fire pits, bonfires, even expansive forest fires will eventually burn out.  Nothing lasts forever, not even fire.  And yet, we can always start fire anew.  Sometimes it even restarts itself.

©2010-2012 ~persistentgloom

When a fire "dies", it still retains a tiny bit of life.  Embers can survive even buried beneath debris for days.  All it takes for an ember to bring about the life of a fire anew are the right circumstances and some scraps - wood or material otherwise considered worthless - which are known as kindling.

Image found here.

We humans are fire.  We destroy, we build, we leave nothing untouched.  We eventually run out of fuel and sometimes it appears we've lost the passion that drives life...but we don't truly 'die'.  We are more than raging, uncontrollable flames - we are also embers, waiting for the right kindling.

It's been a long time since I've posted.  The demands of my job, trainings, and some scattered projects have taken their toll, on top of which the springtime (formerly a favorite part of the year) has become the worst for my overall health.  The wildly fluctuating temperatures coupled with seemingly endless rain & humidity play games with my physical being.  Coping with all these forces as well as plain old exhaustion and has left me drained.  

In a webinar I did with WEGO Health on "IRL Activism" (In Real Life), I was asked to summarize a few of the lessons I've learned into tips I could share.  One of the biggest hurdles I face in common with my peers everywhere is burnout, and I was asked how I cope with that.  The best I could offer is to let yourself be burned out.  Give in to the void.  Just as you would switch gears to cope with physical pitfalls, you must also allow yourself to heal from emotional, psychological, or even spiritual ones before pushing back into the grind.  I think, perhaps, it's not a coincidence this is called "burnout" (though, I swear it was a coincidence that I ended up saying it in this post - it's one of those posts unplanned, which gushes out of me unaffected by my urge to organize).  This 'burnout', like a dying fire, is full of embers and if you can be patient and observant, you will find your kindling.  Your fire, passion, will burst into new life, almost of its own accord.

(Although, I certainly didn't say it with this finesse...maybe I should ask for a transcript revision;).)

I think I'm finding my kindling.  I am not dead; my passion, my activism, my dreams, and my life are not dead.  I've just been stuck for a while on "smolder".  But tonight I felt a scrap of kindling fall in my lap and catch, warming itself as well as the world around it, and now eager with the potential to show its full force.  I just might burst into flames.  Tomorrow I will finally get to wear my Walking Gallery jacket for the first time. In 12 more days, I'll not only get to wear it again, but do so besides dozens of other exhibits in this gallery and the mastermind herself Regina Holliday, when we form a true Walking Gallery in DC.  The thought went through my head "I don't know which I'm excited about more"...and my embers glowed.  I'm ready at long last to explain the Gallery and my story depicted in my jacket, "The Picture of Health".  And I'm ready to burn up the web by resuming my blogging.  It's been a painful month since my last post (again, I swear that was coincidental too) and writing again really feels like I've come back home.

I'm glad to be back, readers, and hope you're ready because I can feel the impending blaze.  It's going to be a beautiful thing.

Image found here.

Some Hypochondriac I Am!

When I was little, they said to my mom:
"She's attention-seeking."
"She's trying to get out of class."
"Does she only seem sick after she's spent time with you?"

As I got older, they said to me:
"Just because your parents said you have arthritis doesn't make it true."
"There's a difference between out-of-shape and sick."
"If you tried to make yourself floss your teeth wouldn't have so many problems."

While becoming an adult and with diagnoses - names - for what I had, they said still:
"Must be nice to get these breaks."
"How convenient that you got sick before the due date."
"You don't look sick to me."

Even as an independent woman, diagnosed a decade and engrossed in health activism, I've been told:
"I just don't buy it."


You probably didn't know, dear readers, but I'm a hypochondriac.  I must be.  What 20-something predicts weather fronts from joint pains; what teen really gets sick around major assignments that caused a great deal of stress; what 3rd grader wears long-johns to guard their arthritic legs in the cold.  Who gets sick, after all, from eating first thing in the morning - and getting your head wet absolutely cannot lead to a cold.

I guess there's no scientific basis to some things I'd been told.  It seems bones aren't made of porous materials that swell & contract with changes in humidity & pressure much like wood does.  Stress doesn't affect your immune system or trigger flares.  Everyone knows that arthritis checks your birth date to see if you're 'old enough' before causing pain, and a the drop in body temperature from the evaporation process of a wet head coupled with an already defunct regulatory system doesn't leave your body susceptible to illness.

Even my behavior couldn't cover my lies.  Being a top student didn't fool the staff in my schools who knew I was just trying to get out of classes & assignments.  My doctors may have been deceived into giving the diagnoses they documented in letters, but these teachers, school nurses, & staff members could not be so easily duped.

But it turns out I missed so many symptoms.  Some hypochondriac I turned out to be.

I didn't know that the pop & crackle of my joints could be played off as tissue damage.  I had no idea the inside of my mouth where the inside of my cheeks are so dry that tongue depressors hang on for themselves & the flesh appears matte would be a great excuse for my frequent dental carries.  Imagine how much more I could have claimed if I knew my excessive reaction to mild exercise with a pulse that jumps & thorough fatigue afterward could be claimed as signs of a disorder, that problems swallowing are frequently attributed to several conditions, or that my laziness could be titled "brain fog".  I'm getting a little better, though...I know that the problem I noticed lately where I randomly have trouble with my hands in doing tasks such as jotting down a note for someone might be passable as complications from Sjogren's & Fibromyalgia.

It's such a strange feeling when I realize retrospectively that a personal habit or mannerism I've developed over time might actually be claimed as a medical malady.  Sometimes I go for years without coming up with the claim.

I'm really going to have to step it up if I'm going to be the hypochondriac I know I have inside.

Image found here.

An Open Letter to Medical Professionals & Caregivers

Dear Doctors,
Nurses,
Patient Care Technicians,
Radiologists,
Laboratory Technicians,
Certified Nurse Assistants,
Hospice Workers,
Emergency Personnel,
Hospital Administrators,
Clinicians,
Alternative Medicine Practitioners,
Home Care Specialists,
and related Office Staff & Managers:

Image found here.

On behalf of my fellow patients, thank you for doing your jobs.  Thank you for going through years of additional schooling, periods of shift-work, and becoming nocturnal when necessary.  Thank you for dealing with icky and/or scary things for a living and assuming at least partial responsibility for us when we aren't able to do it for ourselves.  On the whole, we are grateful for you and all you do.

But even the best in your profession can lose their connection to their patients as people, with pride, self-respect, and dignity.  Whether you're new to your role with a freshly printed certificate in hand, haven't had personal experience coping with illness (or seen a loved one do so up-close), or are an experienced leader in the field who's been doing this so long you've begun seeing patients as experiences and not people, it happens.  So you may need to be reminded from time to time.

Image found here.

It's human nature (including both you and me) to complain.  Even when we love what we do, we can't help but gripe about a few things - gossipy coworkers, the dreaded paperwork, mandates from superiors which seem oblivious to the work already on our plates.  And when our jobs require us to interact with people on the "outside", we're going to get frustrated.  As an auditor, I've had my share of client experiences that feed grousing, and I know patients can be just as challenging to you.

Frustration depicted here.

It's true that without patients, you wouldn't have a job.  While that may be reason enough for some professionals to be patient with patients, it's not a good enough reason.  I don't want your consideration because you need my business, I want it because I deserve it and you're trying to sympathize with my experience.  Troll patient conversations on the internet and you'll find many patients who stay with a provider that may not be the most renowned in their field because he or she treats the patient with genuine concern.

I have but one general - and honestly, fairly simple - request of you to help make this relationship work.  Whenever you're frustrated with a patient, trite as it might sound, put yourself in their shoes.  When a patient is fighting about a bill, imagine having to find the money it takes to maintain a basic level of health.  If you find yourself repeatedly prodding a patient to stick with an ongoing plan (diet, testing, whatever), imagine having to revise your entire schedule to fit in such a plan including running errands caring for a family, and meeting the demands of a job & other commitments.  And, based on a real conversation I recently had, if your job requires you to do unglamorous tasks, imagine needing to have them done for you.  Before you complain that you literally have to wipe a patient's butt, imagine having to have someone else wipe your butt for you.

The key here is "have to"; your patients aren't choosing to have their butts wiped, the choice was taken from them.  Against their will, they must have someone else help them in this most basic & private of tasks.  Wouldn't that make you rather cranky?  Doesn't shame often manifest as orneriness?

Not all patients are elderly, as seen here.

A few years ago, I was going through a flare.  Lying in bed, I just wanted to scooch up toward the pillow but felt too weak & achy.  My ever-loving husband came around the bed and started to grab hold beneath my arms, as you would a child begging to be picked up.  I pushed him away and asked what he was doing, and he said "I was just going to move you up in bed.  I do this for my patients all the time".  But I couldn't let him do it.  I was just in my early 20s, totally unprepared - and unwilling - to need someone else to help me move a few inches in my own bed.  Today, I had to deal with a particularly embarrassing issue, as I had managed to injure my tailbone last week.  Over the interceding days, it has developed a bruise & the muscles are quite disturbed.  After 24 hours of unceasing pain, I finally let him apply a topical analgesic to the injury...and I was none to thrilled to have to let him do this.  My poor husband could very easily complain to his friends that he even has to tend to his wife's backside problems...but I have to live with the emotions of needing someone to do this for me.  How would you feel in my shoes?  Would you be able to accept this help with grace & a smile?

Smiling patient who must be getting compassionate help from his spouse found here.

How would you react to a diagnosis of a severe and/or chronic condition?  To being told to change your lifestyle?  To finding an entire portion of your budget must be allocated to known medical expenses (not to mention the indefinite costs that could accompany an unexpected issue)?  To a professional who tells you he or she knows what's best even if you don't understand or agree?  How about to needing to do daily blood tests, or report your diet & habits to a practitioner you've only seen 2 or 3 times before in your life?

These are directives you give your patients all the time, wondering why they find it so hard to follow your simple instructions.  You've had the hard work, after all, of sorting through the symptoms & options to come up with these plans.  Why are we so ungrateful for your hard work & wisdom?

Because our health is the thing in our lives over which we feel the least control and yet the most effect.  We are the ones who have to find a way to implement the plans you create.  We are the ones who have to acknowledge the loss of our own privacy & independence.

In a true provider - patient team, we will appreciate what you can offer to us and you will appreciate the experiences we will face in trying to implement it.  How would you have your caregiver manage your care with you?  Maybe we aren't such dissimilar creatures after all.

Sincerely,
21st Century ePatients Everywhere

Some of the coalition of ePatients who drafted the Digital Patient Bill of Rights, shared here.

UII Blog Carnival #1 - Successes!

Wow, I am overwhelmed!  I was nervous about putting out the request for submissions to our first blog carnival, because I thought no one would respond.  It's not always easy to break into new projects.  But your support was overwhelming!  Many of my blogger friends posted links encouraging others to sign up, sent in their own submissions, and WEGO Health jumped in before I could even ask, sending bloggers my way.

And what an inspiring bunch of writers you are!  The topic for this first UII Blog Carnival was 'success stories'.  I asked writers to send me their tales of treatments/procedures/tips that made their lives, or the lives of their loved ones, better.  This was my sneaky way of giving you a two-for-one: (1) really good reasons to be positive and hopeful, and (2) some concrete ideas of things that have worked for others.  Enjoy - I did!

Image of Awesome Kid found here.

Elisa, who tweets as @SjogrensStyle and maintains a blog by the same name, reminds us even things that aren't perfect can still be pretty great.  Her post "Friday Favorite: Plaquenil" covers the joy of an improved general well-being, weighing benefits & risks, and best of all - answers a question I've been wondering about for years (thanks for the history lesson)!

Licensed marriage & family therapist Laura shakes things up a bit...literally.  Instead of a traditional blog, she sent me a link to one of her articles published on the website HalfMoonBayPatch, titled "Dancing Despite Disabilities".  I'll be honest, I think Laura wanted to remind us our lives & passions don't stop when we're diagnosed, and I LOVE that message...but I also saw a hidden gem in this article.  Read closely and see if you notice the way one person helped themselves GET a diagnosis - which in turn led to their ability to regain their life!  Follow Laura on Twitter at @lcstrom.

@IBSTales tweeter Sophie Lee discusses a set of challenges familiar to many readers.  After beginning several treatments at once, she now wonders which are actually helping and which may be extraneous.  However, stopping them poses the risk of returning symptoms.  Read about the successful treatments Sophie uses & how she works through the question of which are really necessary in her timeless post, "Gaining Control".

Our next contributor copes with many "invisible" realities which complicate her life, especially how she interacts socially.  Blogging under the pseudonym Displaced and tweeting at @GonnaEatWorms, this blogger touches on many of the emotions that come with prioritizing your own needs.  I relate to many topics in her post "Claude Raines has nothing on me!", such as the silver lining to having a condition which is 'invisible' and the inherent responsibility many of us have to force society to deal with things that make it uncomfortable.

My brother Jon, who tweets at @thedorfist, has been a guest blogger for me in the past.  He's started a new blog, chronicling his revelations in the post-collegiate world of the Asperger's degree holder in The Aspie Epilogue.  In his recent post, "...But Does It Blend?", Jon discusses key considerations in moving past emotional explosions (or helping an Aspie to do so) and how to grow from these experiences.

Sjogren's and other invisible illnesses are not limited to the English-speaking, of course.  One of my long-time favorites, Jazzcat, is a bilingual blogger!  Jazzcat's entries are written first in her native French, then translated (by her, not a machine!) into English in the second half of every post.  After beginning to practice yoga a year ago, she swears by it for therapeutic & mobility purposes today.  Read about her first attempts in her post "Yoga Cat" and her recent update, "Flying Away".  Merci, Jazzcat!  C'est tres bien!

Kristen, better known as Blogger Mama, shares her discovery of a new type of eye exam which is performed more quickly and is gentler on the patient than traditional exam methods (especially for those who need special exams for medical reasons, such as taking Plaquenil)!  I'll be speaking to my doctor soon about the method Kristen described in her post "Eye Doctor"!

Then there's Julia - ah yes, @JuliaReasonWell on Twitter - who never disappoints!  Enlisting her trusty Cannon camera and accomplice Goldie the Prius, Julia reminds us that we have to make choices but it's ok to sometimes choose what makes us happy.  In her post "Where Julia Went in the Sunshine", she chooses enjoying some of her favorite spots in nature (with the proper precautions for a Sjoggie, of course).  Check it out to see how she balances wants & needs, along with some rockin' photography!

My new friend Tosha doesn't tweet, but does host a Facebook group with the same name as her blog, Bottled Time.  Her post, "I Do Tricks for Treats!: My First Experience with Cimzia for Inflammatory Disease", is quite funny!  While discussing the very serious & important topic of injectable biologic medications, the post is sprinkled with chuckle-worthy pictures & chortle-inducing perspectives.  Don't skip the links at the end of the post - even the descriptions were an endorphin boost!

A woman who claims to actually be capable of "Falling With Grace" - a feat I will never master, as I am a pro at falling but not so great with doing it gracefully - practices a habit we can all do.  As blogger Amy explains in her post, "Word", this tip doesn't require money, equipment, special food, or even much time...just willingness to give it a genuine try.  Now that's a hard one to ignore!

Embracing a similar approach, chronic patient Chelsey started her blog, HOPE - Helping Other Patients Everywhere.  I relate to many ideas in her post "Encouragement and Perseverance", which describes (and demonstrates!) her in-charge mentality for dealing with very intrusive chronic illnesses.  I think my favorite part is the 'conversation' between Chelsey & her illness.  We should all be so determined!!

Bennet Dunlap (@DiabetesMayVary) is pretty unique among our carnival bloggers.  He is the caregiver for his children with Diabetes, one of two male contributors, and one of four contributors I've actually met in person - and, will be presenting with UII at a conference in May on the Digital Patient Bill of Rights, which was developed at the Digital Health Coalition event we did together in September.  In his classic post "What Is Your Goal?", Bennet delves into the questions parents of kids with chronic health issues must ask of - and answer for - themselves.  Bennet reminds us to keep our eyes on the real prize.

How about one more for the road?  Our favorite 'gimpy girl', Bridget, shares her way of staying 'Bridget' despite the best efforts of her aggressive chronic illness.  See how, by "Sewing Through the Pain", Bridget found a way to really leave her illness out the equation (safely).  She's not battling it, ignoring it, or even attacking.  She's simply being herself in spite of it.  And I love her for that:)

"...or Brother"!  Image found on SodaHead, here.

And there you have it!  Lucky 13 contributors with actually 14 posts among them, for your hopeful & healthful pleasure!  These bloggers collectively share an incredible array of tactics for making life as a chronic patient better - physically, emotionally, and even spiritually, and I know you'll enjoy what you find.

Gee, I can't wait for the next topic!!