Tuesday 29 November 2016

YouTube Vlog

Hey guys, so as some of you know, I've been vlogging on my YouTube Channel so others can follow along with the journey. I still plan to write here now and then, but in terms of updates and what is happening on day to day, that's the best place to find me. It became a bit too much to do it all super consistently, but I do what I can. You can also find me on Instagram @liv4todayvlog !

Here are my three most recent videos:





Thursday 24 November 2016

100th Post - Grateful for Infertility... Hear me out...


Wow... 100 posts. When I think about that number... and think about the span of time it covers, I feel slightly saddened. I had hoped by now I'd have welcomed a beautiful little baby of my own into this world. Or perhaps at least was expecting one soon! But here, 100 posts later, I'm not much further from where I started.

Infertility is an interesting beast. And I think "beast" is an appropriate word to describe it. It's scary, it's enormous, it's powerful in its own right, and it sure as heck is unpleasant. Odd thing is, I felt doomed to experience this path long before we started trying. I can't explain that adequately to those who've never had an overwhelming gut instinct or premonition about something. But I did, and it knocked me to the ground that day. Nonetheless, I could never have imagined how consuming it would really be. How crippling, how isolating, how devastating, and how utterly frustrating the experience would feel. I also never could have imagined how much I'd learn and grow in the process.

See today is U.S. thanksgiving, and in tradition I pause to reflect on what I'm most thankful for. This is one of the first years I can place infertility and grateful in the same sentence, because in a strange way, I AM grateful for my infertility. I am, and I mean that so truthfully. I wouldn't wish infertility on my worst enemy, and I sure as heck would like to come out the other side now, but what I have gained in the process I'd never want to take back.


I'm Grateful for Better Health
Since I can remember I've struggled with my health. I was chronically fatigued, major food sensitivities that came with bloating and constipation... I had insanely painful spells where I'd be on the bathroom floor sobbing dripping in sweat trying not to vomit from abdominal cramps. Normal painkillers wouldn't help... narcotics only slightly. I'd leave social engagements and be accused of being a hypochondriac or drama queen. Sadly, I was actually chronically ill, and it sucked. Only in my university years when I became sexual active and subsequently found that intercourse was painful for me, did a diagnosis of endometriosis get tossed around. Without an openness or willingness to have diagnostic surgery, I ignored it... hoped they were wrong, that it would simply go away or magically get better on it's on. When we started trying for a family and discovered it wasn't going to be easy for us, I finally opted to make the necessary lifestyle changes to up our odds. I sought out acupuncture, naturopathy, food intolerance testing, and made substantial changes to diet. Years into our fertility journey, during a routine biopsy cells indicative of endometriosis were found, and our suspicions officially confirmed. That was the moment I started taking it even more seriously. I followed up with allergy testing (spoiler alert - I'm allergic to everything), and started making my health a priority. Now, I'm more vibrant than I ever remember being. I have more energy, I have a better appetite and all around just feel MUCH healthier. I can't say I'd be here if it weren't for this journey.



I'm Grateful for Perspective & Empathy
Ignorance is bliss isn't it? When you aren't subjected to certain experiences in your time on earth, you have the privilege of turning a blind eye. You don't have to imagine what it would be like. You probably couldn't do justice in your imagination if you tried in most instances. Cancer? PTSD? Infertility? It may be surprising, or sound unjustified to put those three together, but many experienced psychologists have drawn comparisons between them. They break you down into little pieces, and its up to you to decide to fight through it or not.... whether or when and how you will try to put those pieces back together again. And trying doesn't always lead to success. Sometimes it's outside our control... outside our capabilities. Having gone through infertility, having experienced it personally, and deeply, I've gained a tremendous amount of perspective. All those questions I used to see as perfectly acceptable, no longer made sense to me. Flaunting my successes or happinesses on social media, not so satisfying knowing it could cause others pain. It doesn't just apply to infertility. I won't ask people the age old questions like "so when are you popping the question/getting married?" for how am I to know if marriage is something they even believe in, or want? "When are you going to start having kids!?" An infertile staple I've become so sensitive to from the personal experience of being there in that moment, at a party surrounded by people I don't know, trying to choke back the flood of tears boiling beneath the surface. I know how it feels to have to excuse myself early because I feel so embarrassed, so uncomfortable, so much a failure in society's eyes. In my own eyes. Instead, I choose to carry myself through those interactions and life with compassion, and without assumption.

Research has shown that women with infertility have the same levels of anxiety and depression as do women with cancer, heart disease and HIV+ status. While this may surprise some, it actually makes sense. Procreation is the strongest instinct in the animal kingdom. You are facing genetic and social pressure to have a baby. You are likely surrounded by friends, family, neighbors, co-workers and a society who conceive easily. Infertility can be very lonely.


I could probably list others.... grateful for my relationship's truest test... and passing with flying colors! I am grateful for the community I've found in women going through infertility and the relationships forged in the trenches. I am grateful for my spiritual journey through which I've also learned that these lessons and this idea of gratitude extend beyond the boundaries of infertility. My mind and heart are so much more open than they used to be. If I could go back and magically change my journey would I? I'm not so sure anymore, because I wouldn't be where I am today, wouldn't be who I am today... and I happen to like the me I am.

To all of you out there still struggling with accepting your journey, still working through the pain, the depression, the sadness. Let yourself grieve. Love yourself. Take breaks. Remember you are MORE than your infertility. But above all, learn to be grateful. Learn to find gratitude in your life wherever you can find it. And maybe, just maybe, you'll be blessed with some positive shifts as a result.

Blessings to you all. And good luck ;) I know we could all use a little extra of that too!
Much love.
Liv

Wednesday 23 November 2016

FET Cycle Underway

Usually when I start a new cycle I'm a mix of emotions. And don't get me wrong, this time is no exception, but the emotions themselves are a bit different this time around. Instead of fear and anxiety mixed with hopefulness and excitement, I'm mostly just excited and impatient. I just wanna get the cycle over with and have our results one way or the other so we can move on to the next step. Don't get me wrong, I'm also hopeful, but a lot of the fears I've had in the past are gone and I feel strangely at peace.

Yesterday was November 22nd... our baseline blood work appointment. 11/22! If you don't know us you'd have no idea just how significant that felt to us. Quick rundown... tons of birthdays in our families on those dates (ie. brother on 22nd, mom on 11th, Eric's sister on the 22nd etc etc.). We got engaged on the 11th, married on the 22nd. It's just ongoing in our lives. So the fact that we started this cycle on that date... well set me up to be so hopeful. I believe in signs, call me a kook but I do.


In complex trains of thought signs are indispensable.

- George Henry Lewes


Speaking of signs... I took it as a sign that I wasn't meant to have intralipids this time around given how much of a nightmare it was trying to get it approved. I literally wanted to pull my hair out (although it needs little help these days... seems to be falling out on its own with these meds. Eek. True story. But anyways, I tried and tried and tried but because we were out of state, and because this isn't a common thing it was just road block after road block. I was supposed to have my appointment on the 22nd and started trying to get it organized weeks in advance and just wasn't happening. Then I saw Dr. Braverman (a reproductive immunologist) on a forum talking about how he is probably going to be moving away from using them as treatment, so I took that as a sign that it just wasn't meant to be. It didn't help us last round so I'm sure it won't be the be all end all this round either.

So anyways, I went for blood work yesterday and that was all fine. Dealing with making sure the results are sent to my clinic on the other hand, a bloody nightmare. So not cool. So I spent hours on the computer going back and forth between clinics; "did you fax it?", "they're faxing it now", "did you receive it?", "they didn't receive it, did you fax it?", "they're faxing it again..." Seriously. It was ridiculous. Eventually they got them (right around 5pm which is absurd), and gave me the green light to start meds today, which is the 23rd.

This morning I took my first injection of Lovenox (I have generic enoxaparin, same thing), and that stung like no other. Small price to pay though... I can deal. I also started prednisone, vaginal viagra, and femara (letrozole), as well as continued on with my Lupron. Tonight Eric has to give me my delestrogen shot intramuscularly.


I'm praying for a Christmas miracle. Please let this be it for us. 

Thursday 17 November 2016

IVF a US vs. Canada Comparison

Undergoing IVF is no easy task. It is not only financially draining, but mentally/emotionally and perhaps most noticeably, physically as well. Each doctor, each clinic, is going to do things a little differently. Their processes will differ, so will their protocols... but overall IVF is IVF. Broadly looked at, we go through very similar experiences: injections, ultrasounds, egg collection etc. But when we narrow in, you'll often find each individual's journey is vastly different from the next. And I'm not only referring to how much medication is administered, how many days of injections there are, how many eggs are produced, or what fertilization rates were, but rather the process itself.

Having been born and raised in Canada, I was afforded the comforts of public healthcare. I never knew or understood what all the fuss was about in the US. I would hear grumblings over lack of insurance, or grumblings over Obamacare, but I never really had a grasp of what it all meant. I was privileged to not have to find out. I had my coverage, and that's all that mattered to me. When I discovered I was dealing with infertility, a little question in my head lingered... "Why would Americans complain when even IVF is covered there!?" Well not for everyone... and not everything. Let's compare.



When we underwent our first cycle of IVF back in Canada, we had been waiting for ages it felt like. Once referred, we had a long wait with no information. Our names were submitted and we were to wait for the call. Months went by before we finally did receive that call, only to book an appointment months out from there. It was a long arduous wait to even BEGIN the process. But once we were there we felt well cared for. We loved our doctor, he gave it to us straight, and we made the decision to go straight to IVF which he allowed us to do.

Because IVF is not covered under public health in Canada, IVF would be out of pocket. So signed the crazy amounts of paperwork, paid our deposit (I can't recall the dollar value, but as you can imagine, not cheap), and we officially were beginning our cycle. We had an in person appointment with the nurse to go over injections, how they're to be administered etc. and on our way out of the clinic we were to stop by the pharmacy window located in the office and were handed our bag of medications. It was in a purple plastic bag, all well organized with everything we would need for the entire cycle. We were fortunate to have good insurance coverage that allowed for basically all of our meds to be covered, but that was it. The price tag of monitoring, egg retrieval, ICSI and transfer were all bundled up into our out of pocket expense for IVF.

Each appointment we had a different doctor, as about 6 or more doctors rotate in that clinic... perhaps due to it being public health, I don't know. And it was the only clinic in our province!!! So we literally had no other options. I didn't see my own doctor once between stimming and transfer so when we went for our follow up "wtf" appointment, he was a bit surprised to hear we weren't successful given our age and "unexplained" diagnosis. When I told him the transfer was difficult, he was also surprised given it wasn't noted in my file. Hmm...

The second round wasn't much different, except we lucked out and ended up having him perform our transfer. It went much smoother and he gave us hope touting that perhaps our lack of success previously could have been attributed to trauma to the embryos. Our second "wtf" appointment didn't offer any new considerations, and when I asked about a lot of new techniques, tests and otherwise, I was told studies weren't yet conclusive so they won't try them. And in regards to testing, well even if it did show something was wrong, they didn't have means to treat any of it because the treatments were not yet proven. I felt like I was going in circles, and so we took a long break.



When we moved to the states for my husbands work, we were excited to give it another shot. I had been in many forums with these women trying all sorts of different techniques and treatments and was hopeful that intralipids were my winning ticket. (spoiler alert: they weren't). This time we had the luxury of actually choosing a clinic to work with. We did a lot... and I mean a LOT of research, and I eventually stumbled upon SIRM. We chose the clinic specifically due to their stance on immune related factors, something that in my gut I attributed our failures to, and set up a consultation. I could have gotten in within a week or so with one doctor, but I chose to wait and work with the clinic director, someone who I trusted based on women's experiences with him. But even the added wait was only a few weeks long, a far cry from the months to get into the clinic in Canada.

So we had our consultation and it was refreshing to hear him take all my concerns seriously and offer the various tests and subsequent treatments. Unfortunately, many of these tests would NOT be covered by insurance. So in the end we couldn't afford all the testing we wanted to have if we were going to be able to afford IVF. We had to learn quickly about co-pays and out of pocket caps and ignoring "bills" that were not bills, but could be bills... Our heads were spinning. Had I not already undergone IVF and understood the ins and outs of the actual process, it would have nearly made me collapse to the floor in sheer overwhelm combined with the complexities of insurance. In the end, portions of our treatment were covered, but even to this day it's not clear exactly how much we spent out of pocket. We still are disputing bills that should have been covered by insurance. And on top of that, a lot of medication wasn't covered.

The process itself was also different. Each and every time I went in I was seeing the same nurse, my doctor, and oftentimes the same receptionist and blood draw nurse. It had a real sense of care, and they remembered me, and I them, and I felt an investment in my care. On top of it, my doctor makes himself accessible via email anytime... which is a daunting task when you have numerous patients. I try my best to not over utilize this, respecting boundaries, but it's nice to know if something comes up In Canada I'd often have to wait for a call back, or for next appointment or whatever, to get my questions answered... and usually from a nurse. This felt like a luxury and was so much appreciated.

But when it came to getting meds, I was having them sent in the mail... something totally foreign to me. I stressed about the medications that were needing to be refrigerated, and how well they'd be packaged. Turns out, they've done this a time or two before ;) they know what they're doing. But I definitely had to do a lot of coordinating and playing middle man between provider, pharmacy and insurance. It was stressful, and confusing, a far cry from my little purple "gift bag" carried out with me back in Canada.

I'm now undergoing my next FET again here in the states. This time I further complicated things by moving states and having to do remote monitoring. Because you're not their patient, they don't seem as invested and take their sweet time getting results sent to your actual clinic. And then you have to play middle man also between the clinics ensuring one sends and the other receives. On top of it, prescriptions are further complicated when they won't ship from state A to state B. Intralipids!? Forget about it... can't be prescribed by an out of state doctor. The hoops I'm having to jump through this time are absolutely shockingly ridiculous. I'm not sure how it would have worked as an out of province in Canada, though I'm sure there'd be hoops there too. I would have happily just lived in NY for 2 months, but as you can understand, that's not exactly a cost-effective option.

Anyways, my point is, there are always pros and cons to each system. Decide for yourself what's most important to you to make your call. Anything I missed?

CANADA PROS
- pharmacy on site
- clear instructions and overall helpfulness
- ease of insurance (no playing middle man)
- clear costs
- nice facility

CANADA CONS
- long wait time
- only one clinic
- rarely see own doctor
- no email communication access
- out of pocket IVF (no coverage available)*
- coverage for meds dependent on your insurance plan
- refusal to try experimental testing/treatments

USA PROS
- short wait times
- choice of clinics
- see own doctor each time (generally speaking)
- email accessibility
- IVF coverage available (dependent on insurance)
- openness to new (perhaps experimental) tactics, testing and treatments

USA CONS
- IVF and Medication coverage entirely dependent on insurance (no equality in treatment)
- unclear out of pocket expenses
- dealing with confusing insurance providers and pharmacies
- bills
- US attitude (this is a thing... service providers by my experience have been quite a bit friendlier in Canada)
- having to be a much more active advocate in your care/service
- price gauging on medications

* my understanding is that certain provinces are starting (and some already have) to offer coverage for limited cycles. 

Tuesday 1 November 2016

Financial Coordination Call

So we had the financial coordination call with the clinic and all is good to rock and roll. We have fantastic coverage under the new insurance and feel super duper grateful and blessed. It's a huge relief as you can expect since we've already paid so much up to this point. The well eventually starts to run dry...

We have a call with the nurse on Friday to discuss the calendar and meds so hopefully the costs associated with the cycle medication aren't astronomically high... we're anticipating a little bit at least out of pocket since we have quite an extensive cycle planned and much of it is out of the realm of a typical transfer so who knows what they'll be willing to pay for. That remains to be seen.

We've booked our flights and looks like my mother might be able to come watch our dog while we're away which is a huge stress off if it works out. He suffers from pretty bad separation anxiety so it's nice for him to be properly taken care of while we're gone. We board him when we're gone for shorter periods but we're gone for about 2 weeks and that's just not fair to him at all. Cycling out of town makes things a little complicated but oh well.. that's where my embryos are!!! haha... not too shabby anyway to have to go to NYC, twist my rubber arm ;)


Speaking of transfer, found out my RE really wants me to be sedated again... says the transfer is too difficult to do without it so that's a bit cray cray. Makes me feel hopeful though that if the reason for our prior failures has been difficult transfer, that now that he's done it once, it may go more smoothly... plus the addition of immune protocol... please oh please let it work!!!

ps. if you haven't already checked out my YouTube Channel, you can follow along with my journey there! :)