Get It Together

Today's the big day (well, the first of several big days) - tonight I start the stimulation drugs.  These injectables will hopefully encourage many follicles on my ovaries to develop mature eggs for retrieval in roughly a week and a half.

Fun Fact:
Apparently in a "normal" ovulation cycle, many follicles are ready to develop but due to the level of chemicals produced by the body, only one or two will reach maturity.  The other follicles that started to develop are 'lost' anyway.  With IVF, enough hormones are given to encourage many more of those follicles to develop - which is why IVF does not cause a woman to "use up" her eggs any faster than her body would have on it's own!  Therefore, IVF will not cause early menopause or shorten a woman's childbearing years.  Pretty cool!

But returning to the topic at hand...
My full arsenal of meds arrived the other day from the specialty pharmacy.  To be fair, some of these meds are for use when we do a transfer (more on that another day) but even so, if I'm being totally honest, getting this package was a little overwhelming even to a seasoned sickie like me.

Let me remind you that I'm only taking doses a fraction of the quantity that women usually take in IVF.  On one hand, I have a few stats actually in my favor, which indicate I should be a good responder (produce a good number of eggs).  In addition, due to my PCOS I'm actually at increased risk for OHSS - Ovarian Hyperstimulation Syndrome.  Therefore, my doctor and I decided to go with a reduced dosage protocol which is awesome because it also helps address my concerns over the physical strain IVF could place on my already over-taxed system.  Women usually take their meds twice a day, but I'm only taking once daily doses.

It's important to understand that the protocol for an IVF cycle isn't set in stone.  You're given instructions for dosing to start out, but beginning a few days in you go for daily monitoring (bloodwork and ultrasound) and they will adjust things as you go to maximize results.

To begin my cycle, I'm taking two injectable medications every evening - Follistim and low-dose HCG.  My dear, highly skilled nurse of a husband was, of course, working this evening so I had to give myself the shots right out of the gate.  First, I got my supplies together:

(See what I did there?  "Get It Together"?  Oh come on, that's clever.)

Follistim is injected using a dial-a-dose pen, which is rather convenient and didn't cause me too much stress.  You know, relatively speaking.  The low-dose HCG was another story.  This is old school stuff.  Using what I understand to be the kind of needle used for traditional insulin injections, I have to manually draw down the dose I need from a glass vial, just like every TV show I've ever seen, then stick a legit NEEDLE INTO MY FLESH, and with a "slow and steady motion" press in the plunger.  Dear Lord.

(Sorry it's blurry, my hand was shaking a bit trying to hold the camera while remember to BREATHE WITH A NEEDLE STUCK IN MY STOMACH.)

I have blood drawn all the time, no problem - I watch the blood spurt into the vial.  I've given my mother injections of her diabetes medicine, not an issue.  As you know I recently got a tattoo, didn't bat an eye.  And yet it would seem I do have a bit of a concern with needles.  At least, needles containing a liquid that I have to force into my flesh.  And these are small needles given in my abdomen.  I can't wait for the progesterone shots to start with a transfer - IM (intramuscular) injections given in the backside with 2 inch needles.

Between you and me?  I don't want to do this.  I don't want it.  I don't want to give myself injections, to worry about checking for blood in the needle in case I hit a vein, to have pinprick marks all over, to risk major complications like OHSS.  Of course, I'm going to do it anyway, because I want a child.  I said it before, "I don't like the alternative", so I'll cry and pray and probably yell a little, and I'll get myself together and continue to do it.  But I really don't want to.

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.

Our Littlest Gift

As I understand it, "grace" is a gift from God which allows us to do and experience and understand things we couldn't do, experience, or understand on our own. Our lives without grace may lack direction or leave us unfulfilled - my guess is because we don't understand what God wants of us. When we know which way to turn next, it is because of grace.  We tend to think of grace as a happy, soothing feeling, but I'm not sure that's always the case. I think sometimes grace hitches a ride with more painful experiences. The kind after which we reflect and say "if not for that, I might never have gotten to this". I think it is in feeling the glow that embraces us when we are with "this" that we can appreciate the grace we've been given.

So in a nutshell, I think grace is a gift from God - received many times over, mind you - which gives us peace and direction and helps guide us toward the things we should be doing and experiencing in our lives. When the chromosomal test results on my miscarried baby came back telling us it was a girl, it just seems right that we decided to name our daughter Grace.

Ephesians 2:8 sums it up quite nicely for me: For by grace you were saved through faith, and this is not from you; it is the gift of God.  Our littlest gift sent us on the path toward adoption now, already knowing that whoever the child is we bring into our family at this time, it will be because of Grace.

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.

Meat Loaf and I Lay Down the Law

I know I haven't posted in what feels like forever.  I pretty much stopped posting in the spring of 2013.  That's when two things happened - I switched jobs, leaving KPMG where I had been for close to 4 years, and I start trying to have a baby.  Let me summarize for you:
~I worked for the place I went after KPMG for 10 months then switched jobs again - I found something in my field and close to home and was very happy to make the change.
~Shawn graduated college and began working as a nurse.
~I was diagnosed (over time and 3 doctors) with PCOS, Endometriosis, and damaged "fingers" on my fallopian tubes.  I had surgery, take new medicines (which helped me drop 40 pounds), am learning all about the "joys" of fertility treatments, and just this week had a miscarriage.

To be fair, I can't tell you if I'm back for a while or if this will be a one-off post.  I just can't commit to anything one way or another right now, and I know you get that.  But my recent experiences have brought a post out of me that I simply NEED to write today, so here I am.

I'm not sure how often I can say I've turned to Meat Loaf for inspiration, but I've hit on pot, Mater from Cars, and Ewwy Gooey the Worm before so why not.  Nothing's off limits on this blog, right?

In the "golden age" of music that was the 1990s, we were graced - and sometimes assaulted - by many novel artists including Michael Lee Aday, or Meat Loaf, whose first single to hit number one on the Billboard Hot 100 chart was "I'd Do Anything For Love (But I Won't Do That)".  Today this is was my inspiration.  Infertility and miscarriage are hard topics, and I don't even know what to say let alone what other people should say.  But I do know some things that just shouldn't be said at all.

You can tell me anything you want,
That you've been there too or that you've got my back,
Yes you can tell me anything you want,
But just don't say that.

I'm sorry to take the negative route with "don'ts" but sometimes you just have to.

Please, whatever you do, just don't say:

(For infertility)

• You'll be pregnant in no time.
• Oh good, you have that crystal ball I've been looking for!  Oh wait, that's right, you don't.  You have NO WAY of knowing if this is true, and while it seems benign on the face, it can be caustic to a person working through infertility.  In my case, this riled me to no end because I knew my body, I knew my medical history, and I knew it just isn't usually in the cards for me to have an easy time doing anything.  I knew in my heart of hearts it was going to be something of a struggle, and this platitude can't be said without being patronizing.  Additionally, if someone has been dealing with infertility for a while already, this is just plain old stupid.
• Just relax.
• You can encourage me to redirect my thoughts so I don't become consumed, you can even remind me it won't help to get worked up.  But we're talking about having a baby, the biggest thing that will likely ever happen to any one of us, and it SHOULD be a big deal.  You really want to be my friend through this?  Ask me to do something with you that will take my mind off of it.  Your actions will do far more to help me "relax" than anything you might say.  Not in the area?  Give me a call or send me something to read.  Schedule a time with me where we'll watch a movie at the same time and discuss it.  But don't use the "R-word".
• If it's God's plan, it will happen.
• Here's one that toes the line a little.  Yes it's all in God's hands and I believe that (though be respectful if you're dealing with someone who doesn't - this isn't the time to bring them to God) but this one uses the shortest scary word there is: if.  I just don't want to acknowledge that there's an 'if' about this.  Believe me, in the back of my mind I know it's true, but I don't need you bringing it forward.
• Your child needs a sibling!
• WHY would you say this?  This is directed toward the person who has a child already.  They're dealing with infertility (or could be miscarriage too), the last thing they need on top of the stress and anxiety and inherent guilt is your added guilt.  Do you think they don't know that their child is continuing to grow up while they're working on another kid?  And furthermore, whether they give birth to another baby, adopt a child, or raise theirs as an only child, what business is it of yours to say anything?  Just do not add your two cents unless explicitly asked.  Period.  The same goes for telling someone without kids that time's ticking or their parents would love to be grandparents.  Just don't.

(For miscarriages)

• At least you know you can get pregnant.
• Where do I start with this one?  A) personally, no I do not know I can get pregnant again.  Every medical roadblock I had from the beginning is still there.  This statement is incredibly dismissive of my experiences and my fears.  B) even without my medical history, no woman can be sure she'll conceive.  C) this does NOTHING to diminish the hurt of losing a baby already conceived.  If your five year old was hit by a drunk driver, God forbid, would you be soothed to know you were capable of conceiving and giving birth?  Absolutely not.
• You'll be pregnant again in no time.
• See above.  In addition, this ignores the possibility the I may need time to grieve and compose myself before trying again - or even making the decision of whether to try.
• It's for the best.
• Are you kidding me?  Moving on.
• There's always adoption.
• This one is only a "don't" for timing.  This is true, and many many people will take this option (whether or not they keep trying for a biological baby as well).  I also commend you for letting me know you'll be supportive if I take the adoption route.  But knowing I could remarry wouldn't make me feel better about losing my husband; knowing I can still have children in this way doesn't make me feel better about the baby I don't have anymore.
• At least you were only a few weeks along.
• Since Toby from The West Wing gave voice to the words in my head, I'll quote him: "Pregnancy is a binary state.  You either are pregnant or you're not".  I was pregnant.  A day, a week, or 8 months, I was pregnant and now I'm not.  And I'll go you one better.  This wasn't a positive home pregnancy test followed by a period, I had weeks of positive blood tests and several ultrasounds.  I saw the baby's heart beat.  

These are the "do not, under any circumstances" items.  In my opinion, there's also a "tread lightly" list - things that might go over well or might cause a meltdown.  If you want to say one of these things, consider how well you know the person, maybe how long it's been since the miscarriage (if that's the case), etc.

• God has a plan.
• Leave out the "if" discussed above and any superfluous preachiness (such as "and His plan will be so great it will heal this hurt"), and this one can work.  It will probably be best received by someone who feels a spiritual connection already but might be ok for other people if, again, you leave the preaching behind.  This can also be worked well for someone who's feeling guilt, to remind them that they aren't fully in control of this, God is, and He does in fact have a plan even if we don't understand it yet.  However this probably shouldn't be the first thing out of your mouth.
• I think it will work out for you to be a mother, but I know this sucks right now.
• For the times you want to be the voice of hope without incurring a knee-jerk reaction, this one's pretty good.  It gets your point across - "it'll be ok" - while respecting that the here and now is horrible.  It also subtly tells me it's ok to be hopeful even while grieving which is a surprisingly confusing thought to someone going through a miscarriage.
• Do you want to talk about it?
• Personally, I usually respond well when people ask me questions.  It helps me process, organize my own thoughts, and most of the time that's how I come up with my own plans.  And if I don't feel like talking about it, I'll just nicely tell you that (ask me again at your own risk, though).  But some people won't appreciate specific questions, so you may want to outright ask them if it's a good time to talk about it or not.  Or offer "do you want a distraction right now or do you need to process".  Basically asking before doing is probably good.

It occurs to me that in almost every case, the reason these things shouldn't be said is because they are dismissive.  People need their thoughts, fears, feelings, hopes, and concerns validated.  Even if a specific fear is unsubstantiated (which is many times a matter of opinion), you can provide someone with facts about the topic without brushing off the fact they are afraid.  Hell most of the time if a fear really is unfounded, we know that, but we fear it anyway.  Telling us to simply not be afraid makes us feel alone, stupid, and still scared.

So what can you say?  I've been thinking about this too.  Again this is really hard, and I'm definitely not going to suggest there's any specific thing you SHOULD say, but there are some things that I felt worked well.  But be thoughtful - even more than with the "don'ts" and "tread lightlys" above, the "dos" can be extremely subjective so know the person you're talking to.

• I'm praying for you.
• You're not asking me to do anything, you're simply telling me you're doing this for me.  I like that.  Also IMO, it doesn't matter what the person's beliefs are for this one, because you're doing the praying.  Even if I for some reason didn't believe it would work, no harm done, right?
• Can I pray with you?
• IF you know enough about the person's spiritual life, you'll know if this is a good idea.  But please be prepared to do the verbal praying, don't expect me to say anything except maybe amen.  And if I've already lashed out about why God "did this", maybe skip this one for now.
• I've been there too.
• For me, I'm already aware a lot of my friends have been through miscarriages (though seemingly few of them have had trouble conceiving like me, but that's another story).  I also knew posting about mine would bring out more stories, which it did.  But it seems most women don't know people have been through this, and certainly don't know who around them has.  You probably don't want to then launch into a directive of "how to cope" but using the first person you can share your story - "I was completely numb about it for a week; I gave myself two months of not even trying afterward; I broke every plate in the house and passed out from crying".  Good or bad, your reaction was real and it will help me feel more sane for whatever I'm feeling.  BUT, please do NOT say something like "I had two miscarriages but now I have my kids and everything's great".  I'm not at "everything's great" yet, so stick with something more moderate like "you get through it, please know you can talk to me if you want".
• Let me know if you would like any resources.
• Many people in my world have resources at the ready - my boss suggested a book other women she knows recommended for miscarriage, for example.  Support groups, websites (BE SURE to proof them first to make sure they have the tone you want your friend to see), books, personal connections to someone else who's been there.  If you don't happen to have a rolodex of resources handy that's fine, some quick Googling or Facebook networking will work wonders, and someone in my shoes might appreciate not having to do the digging themselves to find support.  I guarantee (sad as it is) that someone you know had a miscarriage - if you can find that person they will almost always agree to talk to your other friend.  Just don't reveal your friend's identify even if they've "gone public" themselves - no one wants to be broadcast on the web.
• There's nothing wrong with you for feeling like that.
• Whatever I'm feeling, whatever I'm doing to grieve or cope, tell me it's not wrong.  If we're talking about this, I'm almost guaranteed to say something about feeling like it's bad that I'm running errands or that I don't want to try again or that I want to try again right away or something.  I'm going to think I'm doing something that's night right or at least looks not right.  Tell me I'm fine.  Even if you don't understand it, go out on that limb and reassure me I'm not a bad person for it.  

Don't exclude your friend - keep inviting me to showers and first birthdays - but give me an easy out if I'm not up to going.  Sometimes I need to avoid the subject but I also want you to know I'm still your friend and these are the things going on in your life.  So give me the option without the guilt if I say no.  Give me a hug.  Offer to help me if you can - offer to drop off food, take me to an appointment, drive me home.  Be specific so I don't feel like I'm asking too much, or so I can say no thank you.  Care about my spouse too.  Let us know you realize we're both hurting.  We're having enough trouble supporting ourselves and trying to be there for each other, so we can use whatever support you can provide.

And thank you for reading.  Because honestly the BEST thing you can do for me right now is to avoid making me hurt more.

Mother, May I?

As I scan the baker's dozen posts I have in draft, spanning probably a year or more of writing attempts, I think it's time to accept that the days of my more prolific blogging (if I can put it that way) are likely behind me.  Even though it's been far longer since my last posts, I only recently acknowledged that this clearly wasn't the temporary burnout lull I wanted it to be.

Hang on, don't get ahead of me here - I'm not saying I'm done altogether.  Trust me, I'd wax at least a bit more poetic and certain conjure up more valuable sentiments if this were my last post.  This isn't The End, but I think it's time to accept it is a transition point.  Or more precisely, that we passed through this transition some time ago but stubbornly refused to flip over the map and keep going.  It's time now.

Baller pic found here.

In my advanced age (these late-20's years are a doozie, people) I've made the move from permission-seeker to permission-granter; my mother isn't responsible for me anymore, I am.  I grant myself permission to focus my energies on aspects of my life that need more of me right now.  I've always liked my jobs, but I'm finally working in my industry (not-for-profit healthcare) and in a position to put all the skills and ideas I've developed into play.  A new diagnosis of PCOS is also consuming many of my resources - I have so much to learn as well as figure out by trial-and-error, and many plans to reshape.  And who knew that having a whole house (not to mention an insanely fertile (read, overgrown) yard trying to reclaim any cleared area) would take so much time compared to that required by a two room apartment!

I learned something else.  I learned that stepping away from something doesn't mean it isn't important to me.  In fact, I suspect I may make a foray into the world of infertility awareness in the not too distant future.  But for now, I'm going to continue loving the health activism world from a slightly more passive stance.  I need this right now, and I need to be ok with it.  So I'm kicking the guilt out of my life; no more sheepish glances at the Blogger button my toolbar, and I won't be embarrassed to mention my old blog posts as if I had failed.  I had a lot of success so far and between you and me, I think I will again, but I need to live a little more in the middle here.  Thank you for understanding, as I know you do.


Not to leave you on such a "blah" note, here is an excerpt from a conversation I had the other day with a friend.  Sometimes when I go on tirades they are just too funny to keep to ourselves, and public opinion was that I should share this with you.  I want to go on record that I think gender equality means supporting both men and women in their unique gifts and challenges...but there are times when, to use my mother's expression, you just have to call a duck a duck, and this was one of them!

I don't understand engendered fertility.  With absolutely no pain or exertion, the testes produce millions of sperm every day.  They produce so much that men actually, medically, have to expel some of the supply every few days to ensure the quality.  This starts young, they go through a mildly embarrassing phase as they adjust to it, and it continues in many cases until they die or at least until they're too old to care.  Women, on the other hand, go through a potentially very embarrassing phase, which is never really foolproof and can always surprise attack later in life, which can be uncomfortable and annoying at best and more likely involve quite a bit of pain and systemic effects (such as exhaustion, water retention, headaches, etc) just to rid their body of the habitat for the one or POSSIBLY two ovum they produced at a shot.  This issue does eventually disappear but is replaced with a long and equally challenging change process and ultimately followed by imbalances.  And to top it off, sperm released inside the body can survive 2-3 days waiting around for an ovum (just like men to sit around), whereas the ovum, once released, will only take a quick pass through and keep on moving in a 1-2 day span.

Now, I believe in God and all but I can't help but ask "who came UP with this scheme?"

St. Mary Magdalen Church 2013 Christmas Concert

This song, "I Was Touched and I Believe", was my favorite of all the songs we performed at my church's Christmas concert this year.

Yes, I have joined a choir.  The last time I sang with a group was as a college sophomore, 8 years ago.  The reason I stopped for so long?  Damage caused by Sjogren's-induced dryness.

Which, at least to me, makes this that much more of a surprise, and a miracle:)

Anyway, I loved this song because it had a beautiful harmony (I sing alto), and the lyrics were just so amazing...
I believe the little child born of Mary, meek and mild, came to touch my aching soul, and by his touch has made me whole.
What's not to love!

MERRY CHRISTMAS AND HAPPY HOLIDAYS!  Best wishes for whatever winter celebration brings you together with your own family, friends, and passions!



(Video is an excerpt from the concert recording by Jon Dorfman, permission is granted to share with proper credit and citation.  Read more about Jon's work at his blog http://aspieepilogue.wordpress.com/)

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.

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.

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!!

Lines Are Still Open

I recently put out a call for entries for the first UII Blog Carnival.  The topic for the inaugural carnival is "success"; I'm asking writers to send me their posts about tips, treatments, or procedures which succeeded in making their lives better!

Want to contribute but haven't gotten around to it?  There's still time!

I'm envisioning a telethon drive....
(((Soft effervescent music plays as the camera fades out of Jenny pondering an idea and onto a TV host with  very big teeth, speaking animatedly into a microphone.)))

Pic of the original king of the telethon, Jerry Lewis, found here.

"That's right, increase traffic to your blog, share your tips with other patients like you, meet new people who know what it's like to live with your challenges, AND help support UII - Understanding Invisible Illnesses!  Get all this and more for the low "cost" of contributing a post to the First EVER UII Blog Carnival!


We're getting close to the end of the post drive but you can still be part of this historical moment; the lines are still open!  Just send your entry to Jenny by Friday, March 9 and you'll receive all the thank-you gifts mentioned above!"


I think I've spent too much time reading the posts of a certain other, more creative, Sjoggie blogger.
So, send me your posts to read instead!!

For your convenience, here's all the info again in one spot:

• Send the following info to me at "uii(dot)jennyp(at)gmail(dot)com" by FRIDAY, MARCH 9:
• Your name (or pseudonym)
• Twitter handle (if applicable)
• Name of your blog
• Link to a post which discusses a success (tip or trick, procedure, treatment, anything!)
• The post can be new or old, written for this carnival or for any other reason
• The post should be upbeat, discussing an idea that worked for you (or a loved one), but otherwise this is wide open - any condition, any time, any idea that worked!
• Naturally, I retain the right to exclude any posts that are inappropriate, but that is unlikely to happen:)

Please comment or email me with any questions!  This is already shaping up to me an impressive list of writers, and I'd love to include you as well!  We have some amazing entries so far, and a few bloggers who have promised (you know who you are...).

Pic of security pug found here (b/c mine is always on nap duty).

Call for Carnival

(NOTE: blogger friends - please repost, link to, or otherwise share this post with your communities! Thanks!)

Image found here.

Over the past few years, I discovered a favorite way of relating to fellow bloggers - and patients - through blog carnivals. These events are organized periodically by a person or group to showcase many stories or perspectives around a common theme. Bloggers submit their posts on the chosen topic, which are aggregated and presented together as links from one post, providing readers with a directory of great posts by great writers.

This year, I'd like to start UII Blog Carnivals, right here! For our first topic, I draw on a special event in my own life. My dad just had surgery for spinal stenosis, and by the time he awoke from this outpatient procedure, he already had significant relief in his legs & feet from the debilitating pain & cramps his compressed nerves caused.

For the inaugural UII Blog Carnival, lets share posts about successful treatments/procedures that have helped make your life better! It's so easy to get mired in how incomplete our relief can feel, but success stories (great & small) do happen!

Here's all the info & how to enter:

Send the following information to uii(dot)Jennyp(at)gmail(dot)com by FRIDAY, MARCH 9:

*Your name (nickname/pseudonym is fine)

*Name of your blog

*URL of the post to share. The post can be a new post written especially for this carnival, or an older pre-existing entry, as long as it's on this (general) topic!

*Twitter handle (if applicable)

And that's it! If you have questions or ideas for future topics, please let me know! Also, encourage your friends & blogger buddies to contribute, too!!!

posted from Bloggeroid

Jenny's 2012 UII & Me Resolutions

Image found here, and it reminds me a lot of my favorite fellow Sjoggie blogger and her motley muttly crew...;)

This worked out quite well last year (which was the first time I ever seriously contemplated resolutions) so I'll give it another go.  My resolutions - personal, professional, and otherwise - are rooted in things that have challenged me in the past year.  This way, my focus is really on overcoming challenges, and that's what it should be about!  And so, I humbly present...

Jenny's 2012 UII & Me Resolutions

1. Maintain blogging frequency.

Last year, I resolved to post more, at least 2-3 times per month.  In the end, I had exceeded my goal, posting over 50 posts for an average rate of nearly 5 posts per month!  For me, this is a big accomplishment because of other constraints on my time.  For as much of a talker as I am, I don't take posting lightly and want each one to be a quality message with usable or at least interesting information which takes me some time to put together.  I was very proud of my rate last year but that's not to say it wasn't challenging, so I believe it belongs on my list again.  So, for 2012 I resolve to post 4-5 times per month on average, but not less than 3 times in any given month (such as especially busy months).


2. See certain projects through with AIM.

KPMG's AIM - Abilities in Motion network (formerly the Disability Network) has grown nationally and locally in Philadelphia in 2011.  I have been both proud and honored to have a front row seat.  But now we start transitioning into the next critical stage of maintaining momentum and continuing growth.  To this end, I have some specific goals for our local chapter.  The first will be the fruition of a new network idea for a caregiver's night out (most likely a bowling event) to get everyone out, networking, and relaxed without self-identifying.  Second will be making sure solid gains to date (i.e., the Disability Mentoring Day) aren't blips on the radar.  We received both immense praise and realistic suggestions for improving the first DMD, and we MUST follow through in making this a tradition.  Third, I would like to see a measurable increase in participation - my target will be to double present numbers.  Now, to be clear (because it can be very hard to measure this), I will count "participants" as people who participate in a special office event (such as the mentoring day, a learning project, etc) and/or who actively communicate with us throughout the year (such as replying to emails, giving ideas, etc even if they can't participate).


3. Grow UII's forces.

Over the past year, we had two or three people become more heavily involved with UII...not just turning to us, but working with us (such as presenting).  Through this growth, as well as our expanding foray into IRL events and programs, it is obvious to me UII are ready for more people to use their voices.  I hope to welcome a few more people into the UII family of representatives as speakers, maybe writers to help drum up publicity/media interest, etc.  I know deep in my gut that this will be the key to making alliances with people and organizations who will help UII rise to the next level of creating awareness & providing support.


4. Take UII where it belongs.

UII is ready to be a 501(c)(3) organization (the IRS tax code regulation for a non-profit able to collect tax-deductible donations).  I figured this out last year, and had a secret personal goal to make it happen but wasn't able to pull it together.  Perhaps that's because I kept the goal secret.  I was afraid if I announced it and didn't make it work, I'd be embarrassed and possibly lose support.  However that probably backfired, so this time I'm saying it loud and proud: in 2012 I will try to get UII registered as a 501(c)(3) organization.  I pray I don't embarrass myself.


5. Knock out the CPA exam.

I've passed one of the four parts of the CPA exam.  Now, I'm in an 18 month window to complete the rest before losing & having to retake the first part.  It's ambitious, especially since I'm not in a position to take a sabbatical or other extended absence to focus on studying - but that's not likely to work for me anyway.  My preference will be to pass the other three parts this summer (according to a schedule to be finalized with some advice from my mentors), but in the interest of being realistic if I pass two more I'd have to say I wasn't a failure.  If I don't get it done this year, I have only a few months early in 2013 to finish it within that window, and that'll be hell so let's pull for this summer.  Prayers requested, appreciated, and very much needed, both for me to pass and my husband to survive me studying!


6. Reassert my control of my health.

I didn't do the best job last year on my health-related resolution "not to lose my health in my activism".  As I discussed in my last post, I didn't fail really because I didn't have some dramatic relapse, but I certainly didn't make headway.  So, this year I'll try the approach I used above again and get more specific.  In 2012, I will work toward some specific health goals including: losing some - any - weight (I won't define a number, that will only set me up for failure) and keep it off.  This is obviously something I would love for body image purposes, but has a serious health implication that is a more powerful driver anyway.  My joints & tendons would do much better with less weight, and tendinitis has been a big problem for me this year.  Also, I'm inching ever closer to starting a family (not too close, but it's going to take a long time to get my body set) and I want to be in the best shape I can to give us the best prospects!  Besides weight, I want to find out what's causing my latest hair loss problems (an issue that has come and gone over the years for several reasons, but this latest bout has been on the worse side again) and tackle it.  Lastly, I want to improve my stamina.  I'm not so much talking about for exercise specifically, but for getting through the day.  I feel fatigued after cooking, after sorting, heck even after planning these days.  It may be a rough patch I'm going through at the moment, but I want to nip this bud before it takes root, and try to make my body more resistant to it.


7. Go on vacation and feel good at the end.

Shawn and I got an awesome deal for this really cool destination I've wanted to go to for a few years - the Southern Cross Ranch in Georgia.  We were able to purchase a voucher at a discount, which we can use throughout 2012.  Obviously there are several factors that will affect when exactly we go, but I want to plan & execute it in a way that leaves me feeling invigorated and satisfied at the end, not rushed, let down, or short changed.  This means everything from allowing enough time at the front and back ends of the trip (for packing, unpacking, recovering, etc) to making use of the things that come with our package (all inclusive meals and horseback riding time).  Silly as this sounds, to make this goal a reality will require me to make a plan and feel good when I stick to it.  I'm a planner, but then often either stray from my plan or wish I had.  It's hard for me to say "I did what I set out to do and it was great", but I'll do it this time!


8. Fix my relationship with my church.

We've had a little rough patch, my church & me.  I had to terminate the youth ministry program I ran; due to shortages in certain roles I haven't gotten to lector in a while as I've needed to fill in more often to do Holy Communion (I love lectoring); and on the whole I've lost a lot of specific connections to the real life of the parish.  It's the sort of thing that happens as we go through phases in our lives - I've needed to dedicate extra time to some things at KPMG and with UII and those are good reasons for re-prioritizing.  But I love my parish, and value being a real member participating in life there.  In 2012, I will somehow find a way to re-anchor myself a little more into this community, and also work on rediscovering some spiritual aspects that have slipped as well.



So, ladies and gents, I have again committed my goals to writing.  Goals based on struggles I've had in the past year, with specific parameters when possible and generally measurable goals.    Once again, I'm a little scared I'll fall dramatically short when we look back after a trip around the sun.  But I'll be brave if you are!

Are you the goal-setting type?  Do you find it helpful to make stated resolutions/goals, or do you do better with general concepts?  Is there something you've tried that just does not work?  Did you write up a post on this topic yourself?  Share with me & UII!  Bonne annee et bon sante, mes amis!

How Did UII Do?

Image found here.

Last year, I actually made some New Year's resolutions.  I don't usually get into that, but I had read a special post by a fellow blogger that inspired me to do some introspective reflections and use my challenges to create goals.  Goshagolly, she was SO right!

I was scared to reread my post "Jenny's 2011 UII & Me Resolutions".  Maybe I had met one target, but really, how likely was I to have actually accomplished anything?  Goodness knows I didn't reference the list much over the course of the year, and a quick retrospective over the last 12 months didn't seem to yield a lot I thought would hit.  I'm so glad I looked anyway.

Here are the resolutions I set for UII, and me, for 2011 and how my 'actuals' compared to my goals:

1. Strike a balance between learning from other activists and comparing to them.

I had declared "this year, I will use others as a source of inspiration" but not as a "benchmark".  Actual results...I think I may have actually done well with this!  Naturally, we compare ourselves to others all the time, but I really feel better that I'm making these comparisons about growth and not races.  I don't feel the urge to minimize my own work so often, while being able to happily praise the work and successes of others.  Arthritis Ashley has had multiple achievements lately including being named one of "40 under 40" in Pittsburgh; and RA Warrior Kelly has created the only foundation dedicated solely to rheumatoid arthritis (the Rheumatoid Patient Foundation - Rheum4Us).  I didn't even get UII not-for-profit standing yet.  But it's ok - I did plenty of what I would call 'strong activism' and did it while being promoted at work, handling my first big projects in this role, and trying to support my husband in his first super-intense semester at Villanova.    What I've done may not be as momentous as what these other women have done, but I'm still proud of me:)  (This is pretty significant - I'm not known for being secure enough to be satisfied with my own approval.)

2. Blog more often.

My resolutions post was #50 (that's 50 between September 2009 and December 2010 - 16 months), and I had a goal to blog an average of 2-3 times per month in 2011 (or 24-36 posts over the year).  As you know, I recently passed the 100-post mark, meaning I've put up more than 50 posts in 12 months!  A+ for me!  

3. Feel good when I achieve goals.

Historically, I often set reasonable goals but when I achieved them, discounted them as not having been valuable enough.  I wanted to work on changing this behavior pattern, and start valuing myself for all my contributions & achievements.  Again, I have to say I believe I did it (lol, even this sentence proves it)!  I refer to number 1 and 2, above...I am proud of what I've done this year, and I'm happy with being proud of myself.  Similarly, I met a goal - and not an overly ambitious one by some standards - with the frequency of my blogging, and I'm giving myself the gold star for doing it, without any clauses!  In fact, I think I did so well I'll be happy if I repeat it next year!  Of course, in all honesty I do still seek plenty of external approval, but without it I'm still happy.

4. Make at least one or two concrete gains with the DN.

The DN (Disability Network) is now AIM (Abilities in Motion) - the diversity network at KPMG for partners & employees with a disability AND those caring for someone with a special need (parent, child, spouse, etc).  I tried to do a lot when I got involved in 2010, and wanted to realize gaining some solid ground in 2011.  Again... mission accomplished!  We've had HUGE strides!  Nationally, there were many achievements I had no role in, but I did get to attend the Disability Matters Conference (where KPMG was named an Employer of Choice) and was key in a national online training about the meaning, purpose, and tools available to us to be "ePatients".  Our growth locally was even more exciting - we brought a new, extremely dedicated partner champion on board, got a network budget approved (for the first time in our office), sponsored the the Sjogren's Walkabout, and were one of a handful of offices nation-wide to host the first Disability Mentoring Day!  These changes were all special projects of mine, made possible by some truly special, supportive, and caring people in the firm.  And now, we have a wealth of new contacts in our office who want to be involved, and therefore ample hope for the development of programming around their passions as well!

5. Continue to grow UII's connection with VU.

My goal was to "identify...3 main projects which can keep me connected to VU".  While not a 100% success, I substantially achieved this goal.  First, we had the HUGELY successful nursing student event with "Invisible Illnesses Made Visible" campaign in February.  Second, Stacy Andes (Director of Health Promotion at Villanova) joined us as our moderator when UII presented a patient panel at the recent Social Media in Pharma conference in NYC.  The third is a little more of a reach...we've definitely kept communications open about doing future projects, though none have firmed up at this time.  However, now that Shawn's in the nursing program and SNAP (student nurses association of PA), I have some firmer ideas around how we can ask SNAP to get involved with the Sjogren's Walkabout in May - at least, in some awareness efforts in the months leading up to the walk.  So not an A+, but I'd say about a B+ on this one:)

6. Not lose my health in my activism.

Didn't quite hit this one out of the park either.  Actual results were closer to a sac fly - made some big noise, got some attention for a moment, but ultimately in trying to help the runner advance I put myself on the sidelines for a while.  I certainly didn't make any great improvement in my health, or even my self-care.  I did, however, get off Prednisone and start allowing myself more rest when the opportunities arose.  In my new role at work (senior associate - now I tell people their schedule instead of waiting to be told my own to an extent), I've dramatically cut down on how late I stay at work and the number of weekends.  This, incidentally, is probably also a function of my managers, partner, and nature of my clients, but my own choices now play in as well.  I didn't make headway but don't think I lost much ground either.  I've probably earned about a C here.

7. Continue to listen for God working through me and play second fiddle to the Holy Spirit.

"This year, I will...make sure I let my thoughts, words, hands, and actions be guided by the Holy Spirit."  My year started off well enough, continuing a conversation I had with a WEGO friend about faith, but it wasn't a particularly good year for me and my relationship with the church.  I tried a few times to participate in some outreach efforts with my parish, and as much teen ministry programming as I could handle.  But over the months, I had to make the extremely painful decision to officially end the ATM (Annunciation Teen Ministry) program and wasn't the most effective at the parish visits.  For reasons I can explain another day, I had to make these decisions.  Currently, I'm at another 'lull' in my activity at church - I'm still a lector though with the recent influx I'm rarely on the schedule, and still an extraordinary minister of Holy Communion (and love it).  We still have our teen masses, though they now run without much involvement on my part (a good thing for those stepping up).  But, similar to my thoughts above (number 3) about being content with myself, I'm not freaking out about this.  My roles at work and as a health activist are particularly energy consuming right now, and I think that's where God wants me to focus for a while.  I also still have an ear open around church for what my next role or project might be - it just may not be immediately around the corner.  And that's ok, sometimes it's nice to assume my role as a regularly part of the congregation and enjoy my faith and all it's mysteries & glory from this view for now.

So what have I learned?  I've learned that by reflecting on my current challenges and recent experiences, I can draw on disappointments and frustration to develop fruitful goals.  I've learned that the acts of thinking my goals all the way through and committing them to paper (or the web) can help ingratiate them into my thought process, making them far more attainable.  That a few of the 'smaller' goals and achievements can directly drive larger scale successes all on their own.  And that some of my biggest challenges still include balance - balancing my health and activism, work and medical needs, and personal versus external expectations.  I just might have to write a new list for 2012...what do you think?

How did you do?  Did you set formal goals?  What about general or informal plans?  What were your achievements - planned or unplanned?  Who do you want to be and what do you want to do?  I just love sharing:)!