Hello…It’s Me. Mrs. C.

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Hey there. It’s been forever since I updated this thing – so much has happened, it’s CRAZY!

The good: Got married, bought a house, began freelancing {BRIDES & Hoboken Girl!), ended Lupron

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THE BEST day of my life – 11/7/15

The bad: Lost my grandfather, my grandmother got sick, ended Lupron

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Rest in peace Grandpa George ❤

More on each of these later {I  could gush on my wedding for DAYS – and it will soon be featuered IN PRINT in The Knot NJ, Fall/Winter issue on newsstands 7/25} – but since its an Endo focused blog – let’s start with the Lupron. I can’t believe I am going to say this,but I miss it. So, so much.

Went off Lupron after the wedding, after the holidays and since then the pain is back. Part of the reason I had been quiet on the blog was that life got SO much better on Lupron even with the side effects. Once I leveled out (took over two months) I got my life back by getting rid of my period. I lost about 18 lbs before the wedding (which is CRAZY considering the medications) , was working out nearly every day, and was pain free with the exception of some IC flares. Unfortunately because it’s so toxic and detrimental, I had to go off of it after 8 months ( went two months over the recommended stint.)

In true Erin fashion – the withdrawal wasn’t easy. AND they took my IUD out – but it was embedded in my uterus and the strings were lost from my last pelvic surgery. JOY.

Flash forward to the now – my periods are back, which means things suck around here about 10 days out of the month. The IC flares are more frequent, and I wish I could go back to Lupron. (If you told me that 9 months ago I would be saying this I would have thought you were NUTS.) Pretty much my Dr. (who I love) says that pregnancy is what she is hoping will help me, as we are trying to avoid a fourth surgery in 3 years. Potential scope this summer just to see what’s going on – but seriously how weird is that? Look forward to getting pregnant (which we already know may be extremely difficult for me) to feel better. Isn’t that sort of selfish? Is it ok to look forward to that? I can’t wait for the time, but it’s not right now. So pretty much I’ve been told to  deal with the diseases and their flare ups until if/when I become pregnant, I’ve exhausted nearly all medical options and treatments. Hmmph. 

BTW- so far our 18 frozen embies have cost us over $1k in storage fees. They better be smart, charming little munchkins. 

 

 

 

 

 

 

 

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Inside Out (and other observations)

disney, endometriosis, fertility, inside out, ivf, lupron, positivity, womens health

Sorry for the delay in updating this thing. It took me a little while to decide if I even want to keep this up, sharing publicly what I’ve held so private for so long. Clearly, I’ve decided  – I DO! 🙂

Quick status update: 6th week of Lupron. Pain no different (sorta dissapointing!) Doctor told me to stick it out another month. Insomnia LIKE WHOA! Hot flashes & sweating like an Eskimo in the Sahara. Emotions – SOOOO happy to report they are MUCH more stable since stopping the ad-back therapy of progesterone. JUST. NEED. SLEEP. (and AC on full blast.)

Anywho – don’t keep reading if you haven’t seen Inside Out – which is one of the best movies I have seen in a long time {not only because it’s Disney.}

The entire premise of the movie had me thinking about my own crazy “inside out” characters these past two, topsy turvy years. In the movie, an adorable hockey-loving little girl, Riley, had these characters living in her head that represented her different emotions and how they interacted with one another at various points and life experiences. Disgust, Sadness, Anger, Fear and Joy were the stars of the show. It was hysterical, moving, and SO true – with an especially poignant concept being that how without Joy and Sadness, Riley’s life stagnant, empty, and dark. The movie provided a unique visualization that life experiences provide these long term memories which in turn form “Personality Islands” that make you, you. It showed that through your experiences / your own perceptions of said experiences define who you are – and also what happens when the islands fall apart. DUN DUN DUNNNN…

Naturally, I overanalyzed this movie in true Erin fashion and contemplated how the concepts and ideas fit in to my life – particularly as of late. I related that everything I (we) have been through these past two years are forming “Islands” withinin myself, my fiance’, and even my family – but it’s up to us how we use these experiences to define our islands and how they influence our personality. The movie ended {spoiler alert} with the realization that sometimes, hell maybe even often, you need Joy & Sadness to work together to form the most meaningful memories. (This came after Joy’s constant battle to keep Sadness away – when in reality Riley needed them both, equally.) I decided to try to think of my recent experiences through the lens of how the hard times have really, truly brought the most joy.

Instead of focusing on the negative (which I had been doing for SO long) I started thinking of how some of my “sadnesses” provided “joys” in the end. I realized that, for example, our NYC hotel stay in the middle of “the worst storm in decades” for my egg retrieval and embryo-making (when ALL transportation was shut down – more on this experience later) was one of the most romantic and “close” times we have had as a couple. I’ll never forget hiking up York Avenue for my last shot at 11PM in the snow, feeling like the only {frozen} souls in the city.  It also hit me how much we have grown up – together – like when both of our parents were away for my last surgery and it was just us at the hospital and for the first night of recovery.(In which, in true Chris & Erin fashion, the heater broke in subzero temps, Grandma’s basement flooded and the Fire Department had to pay us a visit- forcing us back to our third floor walkup we were trying to avoid for the first few days of recovery.)  Despite all that, seeing my fiance’s face as I woke up from surgery never made me feel more secure, or more loved. And then I promptly asked for more morphine. These stories are happy, funny, and screwed up memories we never would have had if not for the sadness that initially brought them to us.

Looking back, at how my relationships with friends and family have changed – many for the better, some not so much – it became more and more clear that the Personality Islands, Fear, Anger, Joy, Disgust and Sadness – are all reasonably within my own control. Instead of feeling sorry for myself that I’ve had so many unexpected diagnoses, experiences, etc. – I could define my reactions to it and make it what it is.

Over time, I have also concluded that by having so many recent “bad days” with pain and flares galore – I appreciate the good days even more. And finally, having appropriately titled this summer the #SummerOfErin (where I attempt to take my mind AND body back, relax and focus on positivity) I can’t wait to see what’s next and how my “Inside Out’s” continue to work together to make me a better version me. {With a little guidance from me, of course.}

(Disclaimer: I was slowly but surely making a more active attempt to be positive and upbeat as we enter this new treatment phase and into the exciting final months of wedding planning BEFORE I saw this film. However, leave it to a truly profound Disney movie to really leave you questioning your life experiences as I attempt to make some sense out of this crazy life.)  

I cried over ketchup.

endometriosis

Earlier this week, I cried. A lot. Not like, teared up – rather a full blown temper tantrum because my fiance’ made hot dogs for dinner and we didn’t have any ketchup. He looked at me, blinked a few times and went to put his shoes on to go on a ketchup run to the CVS around the corner. I stopped him, hysterically, saying if he went now I wouldn’t eat it. IT WAS JUST TOO LATE!

Contrary to my behavior – I’m not 5. I’m 28. And I’m entering a chemically induced menopause for six months in an attempt to help with my myriad of symptoms I’ve been dealing with for 2+ years now.

As a result – I cried over ketchup. And then I sobbed because I missed my grandparents. And then over the details of our rehearsal dinner. And finally, mid hot flash, I cried over an episode of girls because Adam made MimiRose breakfast and my fiance’ NEVER surprises me like that. (He does…quite often…and most perfectly proposed just a few months ago, BTW.) This was just between the hours of 6:00-8:00PM.

Yes – he is a saint. (a cute one too.)  And no, I’m really not ashamed. (If I was I probably wouldn’t have started this blog.) This, and other ridiculous anecdotes, are all typical and normal side effects from this crazy little drug I just started called Lupron. (who’s other side effects are quite unpleasant and can be found here for the PC version provided by the manufacturer (http://lupron.com/) and here by some “Victims of Lupron” (http://www.petition2congress.com/1902/investigation-lupron-side-effects-leuprolide-acetate/view/7)

Lupron is also used as prostate cancer drug – as it is categorized as an antineoplastic agent which means it is technically chemo. I avoided going on this treatment for pretty much as long as I physically could after being diagnosed with stage 4 endometriosis and intersistial cystitis. . Two surgeries, one round of IVF (more on THAT later), two fertility consults, hundreds of pain pills, muscle relaxers, 4 ER visits, nerve blocks, botox injections, misdiagnoses, biofeedback, physical therapies, gastro doctor visits, urodynamics testing, biopsies, colorectal surgeon consults (gag), a colonoscopy, anti-anxiety medications, sleeping pills, physiologist appointments and an IUD later – here I am. And I’m pretty terrified – but am extremely excited at the promise of this drug. If it works for me, I could potentially be symptom and pain free until our November wedding (Wooooo-hooooo! More on that later, too.)

These “journeys” are something I kept fairly close – which is weird because I’m not a very private person. But when you’re talking about the trial and tribulations of your nether-regions one does not tend to broadcast their problems from the mountain tops.  But recently I came to the conclusion that hey, 50% of the population can relate in some way, shape, or form. Plus, once you cry over ketchup you begin to see the humor in things. (Sort of.)

And so, I decided to share my story. Well, stories. Lot’s of them. Because I know there are other ladies out there much like myself, who deal with the complexity of female health and who can relate all too closely with my experiences. Who, like me, often feel sort of alone. Who are tired of missing out on social functions because they “don’t feel good” and people don’t understand that it’s not just bad “cramps.” (that KILLS me.)

But this is NOT a place for negativity. Even at the worst and darkest times of dealing with what comes with my “disease” (such an ugly word) I’ve found really beautiful moments and created some pretty special memories with my fiance’, family and friends. I’d like to share those moments with you. SO many blogs in the Endo/Fertility realm can be gloomy, depressing, and chock full of complaints. YES – endo SUCKS and IC is CRAP. The pain is ridiculous and deep. The exhaustion is, exhausting. And struggling with fertility is terrifying. (Especially since you’ve ben pulling baby dolls out of your oversized t-shirts since Age 3.)  But, I’ve decided to start looking on the bright side. And this little blog of mine is already prettyyyy cathartic.

So, here’s a safe place for endo-Girls, women struggling with infertility, IC homegirls, “Spoonies” and their family, friends, coworkers, fourth cousins twice removed and creepy internet stalkers alike who want to read, laugh, share, and cry over ketchup with me.

xo

Erin