Showing posts with label love. Show all posts
Showing posts with label love. Show all posts

June 5, 2015

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.

May 10, 2015

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.



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

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.

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.

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!

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.

December 27, 2013

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/)

October 7, 2013

Empathy: The Human Connection to Patient Care

To all my activist, patient, caregiver, and professional friends, this is something worth a little more than four minutes of your time. 

I'll leave it to you to take from this what you will, but I can say that to me, a patient, it said "SOMEONE out there has their priorities in order, and is trying to teach that to everyone else", and that's extremely comforting.

If you're up to it, leave a comment on this post with your reactions!  I'd love to see what a little crowdsourcing could accomplish with this striking kickoff.

July 6, 2013

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.

April 2, 2013

I'm Ba-ack!

I'm home!!!!!!!!!!!!!

This post is coming to you live from my new computer, complete with this-decade operating system and web browser, which allows me to use Blogger!

I'm overwhelmed and don't know where to begin, and the husband is leaving in a couple of hours for an out-of-town convention and I want to spend more time with him, but I had to stop in.

I'm alive,
I'm doing ok,
I haven't fallen apart or had an major medical mishaps.

I have, however, heard that some of you have been trying to check in on me, and I'm so moved.  I also know an amazing number of you have stayed extremely loyal and continue to visit my blog or send others my way.  What I don't know is how to tell you how grateful I am.

Which is why even though I don't have time right now to do you justice with a quality post, the first thing I had to do with my new operating system was stop in and share a huge virtual group hug, because I may have been MIA from your browsers but you haven't been missing from my heart all this time.

I'll be back to try to make it up to you as best I can.  MWAH!

May 23, 2012

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.

April 16, 2012

Mommy's Home!

"Oh boy oh boy oh boy Mommy's home Mommy's home MOMMY'S HOME!"
Photo of my Shmoo-butt, my own.
Dogs really are great for the soul.  Unquestioning loyalty, the ability to love you as though none of your faults exist, and enough slobber for a million puppy kisses are among my favorite traits.  Few people can make me feel as valued as she does.  While always happy to see me even just after a day at work, my Scarlett (aka Shmooie aka Shmoo-butt) was particularly thrilled Saturday evening when my brother brought me home from my 2 1/2 day stint in my parents' care.

A little over a week ago, I backed into the corner of a set of drawers (very delicately, I assure you).  A few days later, I started experiencing intense pain along with bruising & stiffness, consistent with a bruised coccyx (that's a tailbone for anyone a little less posteriorally-focused).  I did my due diligence as an ePatient: trolled the internet - attempting to sort lore from fact, of course - spoke to others who had gone through this experience, and monitored the progression of my symptoms, and concluded it was a badly bruised bone.  Painful, but not much to be done.  Against the concern that I might have broken it and should have it x-rayed, I insisted it wouldn't matter anyway, as the care plan was the same.  This may have also been colored by my less-than-stellar insurance.

Then, this past Thursday I had even more pain (if that were possible), and when I got home from work found that I had bled through my clothes.  Even I can't ignore a problem like that.  So the Daddy Ambulance picked me up and took me to the new urgent care facility in my town (side note- they were less expensive than the emergency department, had no wait, and were closer which was pretty important when I was in quite a bit of pain in the car).  There, I found that I actually had a cyst which seems to have ruptured internally from the hit I took a week prior, and had finally now ruptured externally.  Oh, and the site had developed an abscess (an infection).  I'll spare you the ick, so here's the tame version of the next steps: the PA (physician's assistant) had to perform a minor (yet fully embarrassing) procedure where she made a small incision and tried to rid my of as much of the problem as possible.  For the next few days, I had to follow a few directions to finish getting rid of all the bad stuff, and now I'm onto healing.  She gave me prescriptions for an antibiotic and a pain killer.

A quick side story my chronic patient friends will appreciate: So after going through all my medications & what they're for, diagnoses, how to spell them, and what system they relate to, I'm lying there (on my stomach) listening to what is wrong and how we'll fix it.  Once we agreed on the plan, I had to start sharing my insights.
"You're going to inject something to numb the site?" I clarified.  "Yes," answered the unsuspecting PA.  "Ok, well I don't know what you were going to use, but I can tell you the dentist has had to stop using anything with epinephrine in it because I have a reaction."  "Um, ok," she smiled, "we won't use epi on you."  "Great," I said, then continued "and the antibiotic...I don't know what you were going to prescribed, but I can tell you amoxicillin doesn't touch me".
Hey, if I know it's not going to work, why not save us all the time, right?  But boy does that reveal a lot about my history as a patient!

Naturally, I couldn't care for myself on all these meds and with a fresh incision, and Shawn was out of town attending (ironically) the national student nursing association convention, so my parents turned their house into my own personal hospital ward.  My dad gave up his side of their temperpedic bed since it would be better on my battered bum, my brother dog sat at my house each night, and my mom catered to my ever-evolving dietary requests.

Adding to the fun, the antibiotic she prescribed me (and I believe it's my own fault - I told her not to use amoxicillin after all) ended up DESTROYING my stomach.  Each dose was worse than the one before, and by the 4th round (24 hours of the med) I was curled up on the floor crying.  My stomach was distended, I was nauseous, could barely eat, and was convinced I was dying.  Turns out this med was a particularly brutal antibiotic, but since I had warned her of my resistance the PA reasonably thought it would be a good way to go.  So my mom called the PA back and they came up with another med for me to try.  Even just the knowledge that I didn't have to take the first one again was making me feel better.  Just to be safe, I'm also following her instructions to eat a yogurt with each dose & taking a probiotic daily, and on the whole it's working out.  I also found chocolate flavored Boost goes down well when nothing else will, and alternating ginger ale with root beer pretty much handles the rest.

Shawn was getting home late Saturday night, so my brother brought me home in the evening since (as my mom says) my personal home-care nurse would be arriving shortly.  While my brother's companionship kept Scarlett from full-blown insanity, nothing makes everything quite right like having Mommy home - hence her outburst at the beginning of this post.  After ambushing me with kisses and squiggles, she anchored herself at my side on the sofa.  No chance of Mommy making another getaway!

No, no way.  Nuh-uh.  Not...gonna...happen....  Mommy's...not...allowed...to...move...zzzzzzzzzzzz.
Picture of my sleepy - yet surprisingly on-guard - protector puggy, my own.
Shhh...goodnight, all!  May you snooze in good health!

April 10, 2012

An Open Letter to Medical Professionals & Caregivers

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

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

But even the best in your profession can lose their connection to their patients as people, with pride, self-respect, and dignity.  Whether you're new to your role with a freshly printed certificate in hand, haven't had personal experience coping with illness (or seen a loved one do so up-close), or are an experienced leader in the field who's been doing this so long you've begun seeing patients as experiences and not people, it happens.  So you may need to be reminded from time to time.
Image found here.
It's human nature (including both you and me) to complain.  Even when we love what we do, we can't help but gripe about a few things - gossipy coworkers, the dreaded paperwork, mandates from superiors which seem oblivious to the work already on our plates.  And when our jobs require us to interact with people on the "outside", we're going to get frustrated.  As an auditor, I've had my share of client experiences that feed grousing, and I know patients can be just as challenging to you.
Frustration depicted here.

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

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

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

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

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

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

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

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

Sincerely,
21st Century ePatients Everywhere
Some of the coalition of ePatients who drafted the Digital Patient Bill of Rights, shared here.

April 1, 2012

I Didn't Like the Alternative

I've been combing the internet for a quote that captures a particular concept I have in my head.  In the process, I found several excellent expressions, such as this twist on a classic - "Courage is not the absence of fear, it's knowing that fear gets you nowhere" - and this definition - "Heroes are the people who do what has to be done regardless of the consequences".


William Faulkner pointed out that "man performs and engenders so much more than he can or should have to bear.  That is how he finds that he can bear anything", which is getting a little closer to my point.

Dancing around ideas related to the thought I'm trying to express, Josephine Hart warned us that "damaged people are dangerous.  They know they can survive," and John Updike wisely commented "we do survive every moment, after all, except the last one".

These are great motivational statements that serve to encourage us in the face of adversity and, sometimes, to remember humility is the great equalizer.  And yet, none of them quite hit my nail on the head.  None really say what I want to say; my persistent work with the 'Google machine' returned no perfect results.  So I guess I'm going to have to say it for myself.

I've noticed several other bloggers and activists discussing a topic familiar to us all, this is, how to answer a certain question we are asked by the "healthy" people around us.  This question comes wearing many disguises but ultimately - like the pierogie, ravioli, and potsticker - they are of like-substance:
How do you do it?
How do you have all that energy?
It's so great you can do everything you do (this thinly veiled statement-question can be particularly caustic to our nerves, by the way).
I don't know how you got through [insert medical disaster here].
I'm amazed at how you do all the things you do even with all your medical problems!
I wouldn't be able to do what you do.


I know these are (mostly) well-meaning, even complimentary statements.  Expressions of support and admiration from those honestly trying to be supportive.  But they drive me crazy.

I didn't do "it" (whatever it is) for you to admire.  I wasn't trying to impress.  I wasn't even trying to win some competition, or prove something to myself or anyone else.  To be honest, I would just as well have never done "it", but that would depend on never having needed to do "it".  The only alternative I could see, the other option besides doing "it", was to stop living.

I did it because I simply didn't like the alternative.

I don't know how I would survive many things others got through - living in concentration camps in WWII, or surviving weeks without food besides the occasional bug as they often must do in war-torn countries around the world.  But I do know how they did it.  They didn't like the alternative either.  Really, there was no alternative but to drop dead on the spot.  Maybe they'd end up dead from the experience anyway, but they had to try, and many people did survive.  There's even positive things I don't know how I could (or will) survive but I'm going to do them anyway, like having a baby (the actual birth part of it...blows my mind).  But I don't like the alternative - not having babies - so I'm just going to do it.  As have billions of women since time immemorial.
This is Noah, who had a heart transplant at 10yrs old.  I don't know how I'd survive needing a heart, getting it, or being the parent of a child need one...or donating it.  But I would, because the alternative isn't an option.  Image found here.

Maybe I am strong, as so many people like to tell me.  But if I am strong, it's not because of what I did, it's because of what I didn't do.  I didn't pretend there was another more attractive alternative which didn't really exist.  I know people who do this, and all it accomplishes is shuffling the responsibility while still leaving them worse off than they began.
Cartoon found here.
So if you're like me and so many of my friends, the next time someone asks you
"How did you do 'it'?"
you can tell them
"I didn't like the alternative."