September 5, 2015

Baby Bud Round Up

New post at On A Tightrope: Baby Bud Round Up!!

This blog is set up that when I put up a post, it is automatically fed to Twitter and several Facebook destinations through a program called "NetworkedBlogs".  However, while you can still sign up to follow blogs through this service, their syndication services have been transferred to another program which charges a fee.  As an existing syndication blog, My UII Blog was grandfathered but I was unable to apply the same service to On A Tightrope".

I'm not about to pay for this service when I can manually share the link to new posts on Twitter and Facebook...but it's even easier for me to post a link to the new post on here and let the existing syndication process pull it :)

So, please check out my latest post about my infertility journey at On A Tightrope!  And if you're so inclined to share the post, please be sure to link to that page directly.  Thank you!

June 14, 2015

One Little, Two Little, Three Little Follicles...

I fear I'm becoming a produce stand.
That's right, I'm basically walking around with two little bunches of grapes in my pelvis.
Today is Treatment Day 10, and I thought we would all enjoy a mid-stimulation check in.

I've been encouraging the growth of my ovarian follicles with injectable hormones for a week and a half.  My drug protocol is actually a little light, as I only have to do injections once each day (happy dance).  My regimen started with two medications to encourage many follicles to grow and a few days ago we added a third which prevents me from ovulating too soon.  Most days this past week I've headed down to my doctor's office before work (51 miles round trip - the things we do for quality healthcare) for monitoring consisting of blood draws to check hormone levels and transvaginal ultrasounds to measure and count my follicles, which I call "potential baby bud roll-call".  This means I've been stuck 32 times so far - 12 times for Follistim, 10 times for low-dose HCG, 4 times for Ganirelix, and 6 times for blood draws.  

I am happy to report that at this point, things are going quite well :)  Yes, that's right, this little Sjoggie actually has something going right!  These moments are few and far between so when I get one, I like to celebrate by high-fiving myself.  But that's besides the point.

What do I mean "things are going right", you ask?  Good question!  Here are some things that are on target or even better than average at this point:
  • I'm developing a delightful number of follicles - one of the clinicians told me she sees on average about a dozen follicles total for a patient, and I have 10-12 on each ovary right now.  They won't all yield a mature egg, but in this case more is basically better, and I don't have so many as to pose any significantly increased risk of OHSS (ovarian hyperstimulation syndrome).
  • My follicles are generally growing at a consistent rate - sometimes a couple overachievers will get plump very quickly, leaving the rest to play catch up trying to grow mature eggs, but mine have mostly grown at around the same pace which is great because it means it's easier to tell when we should trigger to maximize results.
  • My uterine lining is on target - I'm not doing a fresh transfer so this isn't particularly important right now, but I am relieved to know that my lining is thickening to a good level.  This will be important when we do transfer in a few months, because you need a plush lining to give a little embryo or embryette a good chance of implanting happily.
At this morning's visit, my potential baby buds were measuring around 17mm (give or take, there's a range of course), which means we're getting close to retrieval.  

In addition to these objective ways of seeing that the cycle is going well, I am also happy (if a bit shocked) to report that I'm generally feeling pretty solid.  I'm only slightly uncomfortable from the feeling of my plumped up ovaries, which do resemble small bunches of grapes.  For me, it's this general sensation like full kidneys, and I'm more aware of it during the movements to sit down or stand up.  Of course, it's pretty likely I'll feel increasingly uncomfortable in the next few days but so far, so good!

I have had one problem crop up in all of this.  The day after my first round of shots, I had a full blown migraine.  Never having had one before, I didn't know what was going on but after talking to the doctor and reviewing all the symptoms that occurred, that's clearly what it was.  It started with a visual aura - I describe it as being like when you look at a camera flash, except the perimeter of the "blur" almost looked like tinsel, sparkly and irregular.  The "blur" began to expand and before it was over (about 20 minutes or so) it did obscure a good section of my field of vision.  While this was going on, the headache hit (I have a history of cluster or "suicide" headaches so this wasn't the worst part to me, the aura scared me the most), and eventually I had some nausea.  These "sudden onset migraines" are not uncommon with all the hormones and medications, but no one warned me about them either.  On the upside, except for a lingering headache the next day I only had one more migraine begin a few days later, without aura, and taking an excedrin when I felt it begin did help keep it from progressing.  Again, I'm not out of the woods yet but I am hoping that it was more of an adjustment issue and the worst is behind me in this respect.

So what happens next?  Another excellent question!

Each day that I go in, the office calls me a few hours later once the labs come back to tell me if there are any changes to my medicine protocol (there haven't been so far, which I think is a nice indication that my doctors did a good job figure out where to start, but for the record tweaks are absolutely normal because no two people respond exactly the same way).  One of these days that call will also tell me to take my trigger shot that night.  36 hours later, I'll go under IV sedation for retrieval.  The clinicians (and I) suspect they'll tell me trigger tomorrow (for Wednesday retrieval) or the next day (for - you got it - Thursday retrieval).  The day between the trigger shot and when we go egg hunting I get a short reprieve with no more shots.  That will be nice, considering my belly is starting to look like one of those tomato pincushions everyone's grandmother had after it's been stabbed a few hundred too many times.  And did I mention Ganirelix burns for a little after it's injected?
Granny's pincushion or my abdomen?
This is where we're at in the IVF leg of our infertility journey.  The day we have egg retrieval (and incidentally, every time we discuss that I feel like a giant chicken on a farm) we will find out how many follicles were drained and how many mature eggs were actually retrieved.  They'll inject each one with one of my husband's sperm overnight and the next day we'll know how many successfully fertilized, then we begin the highly distracting phase of waiting to see how many grow to blastocyst stage over the following 5-7 days.  Better buckle up, kids, we're just getting started!

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 22, 2015

Let's Get Real

Warning: This post will contain a no-holds-barred description of my recent appointment at my fertility clinic.  While I promise no graphic pictures, I cannot promise that descriptions of certain events won't be a bit blunt.  Reality can be shocking, funny - and more than a little ridiculous!

I attend infertility support group meetings with an inspiring group of women, and it struck me as a little funny when the conversation on several occasions turned to the role we often assume as educators.  In other words, I found myself in the midst of a troop of health activists who use their experiences with an invisible battle to educate people around them, begin to remove the stigma, and let other people with these hidden challenges know they are not alone.  Funny how life works, isn't it?

In our self-assigned role as awareness activists, we are finding some joy and purpose in the chance to share what this journey is really like - both the good and the grotesque - and when possible to do so with humor and hope.  So I want to share some of my experiences with you.  I'm sure the things I describe will be quite familiar to more of you than we'd like to admit, and for others it will expose you to the world where 1 in 8 couples will find themselves for a time.

Generally not a fan of seeing all the equipment laid out...maybe that's just me.
Every doctor / clinic will do things a little differently, but there are many tests and procedures commonly performed in the fertility community.  The other day I had the misfortune opportunity to experience two I hadn't been through before: a mock transfer and a saline sono.

The mock transfer was performed first  I was instructed to drink 32 oz of water one hour before my appointment to ensure a full bladder (insert panicked "are you serious" face here, because that's what I made when I got these instructions).  It seems for this test they use a long catheter through the cervix as if they were placing an embryo guided by an abdominal ultrasound, and they need your bladder to be full so they can distinguish it from your uterus.  Not being a fan of any test that involves a speculum, my primary concern was how I could relax one set of sphincters to allow the speculum while keeping another set engaged to prevent a urinary blowout on the table.  I promised you an honest recount and a brutally honest one you shall have, people.  This was the test I dreaded more, and to be honest it wasn't nearly as bad as I had anticipated.  Perhaps the suggestion I read online was true, that focusing on not peeing during the procedure helped distract me from the activities themselves.  I'm not looking a gift horse in the mouth, especially since this was a test-run for a real transfer so I will obviously have to go through this again.  I do have a theory, though, that this test is really to see if you're prepared for all the bladder pressure you'd face during pregnancy because holding a full bladder while having things inserted vaginally AND someone applying external pressure with an ultrasound wand was a bit tricky.

Then came the saline sono.
Say hello to the transvaginal ultrasound.  While the tests I'm describing might be more relevant for more advanced ART (assisted reproductive therapies), the transvaginal ultrasound is pretty common right from the first few infertility tests.  You get used to it quickly.  And yes, they use condoms as sheaths - hey, why reinvent the wheel, right?
For this test, after getting to relieve myself (THANK GOD), I re-positioned on the exam table and they brought back everyone's favorite gynecological tool, the speculum.  After inserting a different catheter with a balloon attached to the end, the speculum was removed so that saline could be gently pumped into my uterus, expanding it for a better view.  They then used a transvaginal ultrasound (because, as the NP commented, there clearly isn't enough stuff going on in that region) to view the uterus and look for any physical / structural issues.  To keep the catheter in place and as a frame of reference, they inflate the little balloon at the end...and ladies (I assume most gentlemen have passed out by now) that is when the pain hit.  It was a very specific spot, I could point with my finger to exactly where it hurt, and it felt vaguely like someone driving an ice pick through my abdomen several inches south of my belly button.  This will vary a lot person-to-person but for me this was clearly the worst part of the visit.  My husband was present with me and poor boy almost lost his hand for me squeezing so hard.  You can watch the ultrasound images as the test is being performed and they'll happily describe what you're seeing.  This is usually something I do and definitely something I recommend - not only do you become more educated about your health, body, and treatment but it's also distracting - but this time I couldn't even open my eyes long enough.  Apparently they did see a small "blip", a white mark, which could be a small adhesion, a piece of tissue that just wasn't flushed out after my last period, or most likely, a small polyp.  Most women get these from time to time, and it's easy enough to deal with, but we needed the doctor to review the pictures and weigh in.  After the exam was over and they had all the images they needed, they removed everything and cautioned me that I would feel some of the saline drain out - yet another glamorous moment in my muck toward motherhood.

To be fair, I should qualify my description of the experience a bit: I did not scream or cry, and I wouldn't even describe this as the most painful experience of my life.  Also, once the procedure was over the pain subsided fairly quickly (yes I had taken ibuprofen prior to the appointment as suggested and yes, I took a little more afterward).  My biggest issue was that I had quite a bit of adrenaline flowing through my system between the pain and my anxiety about the whole visit, and I started shaking.  The NP and the medical assistant were cool about everything, they had me stay lying down for a bit after we finished, took my blood pressure, and got me some water.  It took a couple minutes but eventually the shaking subsided.  That's when the MA commented that my color was returning and after she stepped out again my husband informed me I had blanched to an unnatural shade of Clorox white even for my usual pasty-assed self.  While sitting up now sipping water, I asked when exactly I went so pale and he answered, "when they inflated the balloon".  I guess that struck me as funny because I laughed...and when my abdominals contracted it forced out some of the remaining saline.  Before I could stop myself I turned to him and blurted "YOU MADE ME SQUIRT"!  I must say, I hadn't seen him laugh that hard all day.

And that was my evening of IVF work-up tests.  I told you - shocking, funny, and more than a little ridiculous!

May 15, 2015

There's How Many Ways to Do This?

Image of ICSI found here.
Let's take a poll, shall we?

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

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

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

How about anyone who's been through IVF?

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

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

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

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

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

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

And so here we are, going through the steps to get ready for our first IVF cycle.  Oh, and by the way, the terms "IVF cycle" itself is confusing, so let's break it down:
  1. The first phase of IVF is egg retrieval.  This is where they stimulate the woman's ovaries to produce a higher number of eggs than are usually developed during a natural ovulation cycle.  When ultrasounds and blood tests show the follicles are mature, a needle is inserted through the wall of the vagina (while under anesthesia) to draw out the liquid in each follicle which should contain the eggs.  
  2. The eggs are then fertilized (this can be with the male partner's sperm or donor sperm, and the sample may be provided the same day or in advance and frozen).  This can be done old school with many sperm in a petri dish or via ICSI (Intra-Cytoplasmic Sperm Injection) where one sperm is selected and injected into the egg.  My clinic performs ICSI.
  3. The fertilized eggs are then incubated for a period of 3 - 7 days (this depends on your doctor, personal preferences, specific medical scenarios, etc).  With my clinic they usually grow for 5 days.  It is important to note that it's unlikely all embryos will make it the full length of time.
  4. At this point one of two things will happen.  You can have a fresh transfer which involves placing an embryo in your uterus with a catheter on that 5 day mark (my clinic will only transfer one at a time, and I'm ok with that - with all my medical issues we don't need the added risks of carrying twins).  This will depend on how retrieval went along with your health at the time.  There are several things that could preclude a fresh transfer, including your own preferences.
  5. If you don't have a fresh transfer, all embryos will be frozen.  If you do a fresh transfer, any remaining embryos will be frozen.  Oh, and you have another decision to make - PGS.
  6. PGS is Preimplantation Genetic Screening, which is a NON-DESTRUCTIVE test that can be performed on embryos (and which even the best insurances don't cover).  Prior to freezing, a small biopsy is taken from the outer ring of cells which will eventually form the placenta (thereby leaving the cells that become the baby itself untouched).  The sample is then examined to determine if the embryo is chromosomally normal.  The test will determine if the embryo has the right number of chromosomes, which chromosomes may be missing, and which may have an extra copy.  It will also identify the sex of the embryo but you can ask your doctor not to tell you that.  So yes, this test will tell you if your baby has Down Syndrome or another chromosomal condition - whether compatible with life or not.  It will NOT tell you traits such as eye color, genetic risk factors, and so on.  How you use this information is a personal choice.
  7. Once you have a fresh or frozen embryo transfer, you enter the infamous "Two Week Wait" where time seems to stand still and your stress level reaches new heights.  There's a lot of discussion around how to survive the time you wait to find out if the embryo implanted, and most tips center around how to keep your mind busy.  A lot of women stock pile books or binge-watch TV series.  Part of the challenge is that most forms of exercise (a stress-relief tool used by so many people) will be off limits during this time adding both to your physical discomfort and your anxiety.  During this time, it's common to continue a hormone protocol, depending on your specific case.
These are just the basic steps.  When someone says they are having an IVF cycle, it could mean that they're having a transfer, or a whole new egg retrieval being done.  And this process involves so many decisions and choices I never, ever contemplated before being in this boat.  What do I need / want to do to prepare my eggs for retrieval?  This could mean medication, supplements, acupuncture (which is incidentally something my peers SWEAR by), clean eating or other special diets, specific exercises, massage, even special heat compresses.  The medications you might take during stimulation, while preparing for a transfer, or following a transfer will mostly be directed by your doctor but you do have some input, again including diets, supplements (ALWAYS clear them with your doctor - "natural" doesn't mean it won't interact with meds), exercise (if permitted), and so on.  It's overwhelming.

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

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

Because I sure as hell didn't.

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

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!