Tuesday, April 7, 2015

2015 Sjogren's Walkabout

Team UII at the Philly SSF Walkabout

At last it's here, it's finally SPRING!
What fun and joy will this season bring?

There's flowers and sunshine, and lots to do.
But the most fun of all will be at the Zoo!

So check us out and join our team;
The funds you help raise will support our dream -

To live a life where we more than cope,
Where we laugh and love and are filled with hope!

What: 11th Annual Walkabout for the Sjogren's Syndrome Foundation
(This is my fifth year on the committee for this event!)
When: Saturday, May 2 - Registration opens at 8:30; step off is at 10:00AM
Where: Philadelphia Zoo (for those in the Philly area - if you aren't nearby, please consider donating, and check the Sjogren's website to see if there's an event in your area!)
How: Donations can be made online or by contacting me.  Qualify for FREE ENTRY to the Zoo for the entire day by simply raising at least $10 per family member (ages 3 and up)!  
For details on earning FREE entry and how to make donations, visit my team page at here: 

Please remember to invite your friends and family!  You can share this post via email, Facebook, Twitter, Linked-In, Google+, etc.  Or, sign up for the walk and send your personal page around!

What is Sjogren's?
Sjogren's Syndrome (pronounced "SHOW-grins") is the second most common autoimmune disease in the US, though it is dramatically misunderstood.  In this disease, our bodies attack themselves, especially moisture producing glands and connective tissue.  While the most common symptoms include dry eyes, dry mouth, fatigue, and chronic pain, Sjogren's can affect every system in the body.  It is chronic and progressive, meaning there is no cure and it will usually get worse over time.

But the SSF (Sjogren's Syndrome Foundation) is working to change all that.  The Foundation has recently cut the average diagnosis time from 7 years in half, and is continuing to work on making that even shorter.  They also:
  • Provide resources to patients, family, and healthcare providers,
  • Host an annual Patient Conference,
  • Publish materials,
  • Raise awareness among the healthcare community to drive interest in this pervasive disease, and 
  • Fund research into effective treatments and possible cures!
The Philadelphia Walkabout is the Foundations largest fundraising event in the country!

Sjogren's By the Numbers:
  • An estimated 4 MILLION Americans have Sjogren's
  • 9 out of 10 patients are women (though both men and women can develop the disease)
  • Sjogren's patients are at a 44X greater risk of developing Lymphoma
  • Sjogren's patients need an average of 50 TIMES more dental work
  • The average age at diagnosis is between 40 and 50 years of age (but it can occur at any age - I was diagnosed at 15 with symptoms beginning at 2 years of age)
Learn more about Sjogren's and the SSF at www.sjogrens.org

Friday, January 30, 2015

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.

Thursday, January 15, 2015

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.

Thursday, January 1, 2015

Embrace, Cuddle, Squeeze, Hold

Look at that face!  Found here.
I'm a hugger.  Always have been, always will be, and the older I get the more I appreciate this about myself.  I just never "got" kissing, especially in non-romantic way.  And no my parents didn't "kiss me" all that much that I can recall but they did sometimes, they certainly kissed each other in front of me, and I was very, very loved so I don't think it stems from some childhood issue.  I just prefer hugs.

I remember when I was getting to know my now-husband's family (all 1,000 of them, or at least it feels like that).  Most of them are huggers, too, like his mom's family.  But his step-father's family, they're cheek kissers.  I didn't take to that too quickly.  I had to work very hard over many years at consciously staying calm for the kiss-greetings and especially the kisses goodbye.  Eventually I got used to it and now it doesn't cause me stress, but I'd still just rather have a good hug.

So I asked myself, "why hugs?  What's so great about a hug?  Why develop such a strong preference?"  This led to a few observations:

  1. When we hug, we show the other person we support them.  Physically, we actually do support them a little bit.  Ever topple over or stumble from a hug?  It's because the people engaged in a hug are throwing each other a little off balance and then holding the other person up.  When you hug, you are literally helping support the other person.
  2. When we hug, we get support.  Same deal, going the other way.  In my opinion, this is why the "hugs" we exchange with people we don't really like (you know, there's always that relative you don't really want to see but have to be nice to kind of thing) aren't full bodied, two-armed hugs.  They're usually side hugs and arm pats.  Because we don't believe we will be supported (and perhaps, don't want to support them either).  In a real hug, the other person helps hold you up.
  3. When we hug, we let ourselves go.  Ever start to hug someone then burst into tears?  When you're that close, heart-to-heart really, it's hard to have barriers or facades.  That's how it should be.  
Virginia Satir, author and social worker, said "we need four hugs a day for survival.  We need eight hugs a day for maintenance.  We need twelve hugs a day for growth".  What a wise lady.

So next time you give a hug, go ahead and indulge.  Close your eyes, hold on just a split second longer than you have to.  Take a full breath in and let it out before letting go.  Remember you're hugging this person because they mean something to you, and "tell" then that with your hug.

I just love hugs.  And I'm apparently not the only one: enjoy the Top Ten Cutest Hugs of All Time!

Sunday, December 21, 2014

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.