2022... Plot Twist, Part 2
If you didn't read Part 1, that is linked here. You can check that out. Trigger warning for both Part 1 and Part 2, Mention of Pregnancy loss, intrusive thoughts and suicidal ideations, and political views on abortion. Trigger warning for this whole post because this one is not fun. Has nothing to do with running (I didn't run at all) has nothing to do with PAES (don't give an F about it) and is really just me... getting it off my chest... and then maybe... finally?... moving on.... That seems important to do on this last day of 2022. Don't want to bring this story into the New Year. Also I'm not proof reading this. Don't want to. Just want to write it, get it off my chest even if it doesn't make sense... and close it. Happy New Year.
Before I officially start Part 2, let me back it up a bit. Obviously since I was miscarrying on Raeas birthday we didn't do too much of anything. We basically just put out a big balloon display out to make it feel really special, had pizza on our grill, and had a pinata in the backyard with just the four of us. Birthday's are a huge deal for Raea, but she understood what was happening and was really exceptional about it. When I found out I was pregnant that first time I was freaking out! She knows how to read covid tests so given that we've been insanely cautious with covid for these pandemic years, especially since Maebel still wasn't vaccinated, seeing me shaking and screaming and having a panic attack holding up a test with two lines to show Matt, Raea believed I had covid and became nervous and told Maebel that they needed to stay away from me! So even though Ideally my kids wouldn't need to learn about the fragility of life, I sat them down to explain to them what was going on.
It's weird because when I sat them down, I told them I was pregnant. They both know what that word means, in general... I was very frank that there might not be a baby. I grew up in an insanely conservative family handing out flyers of every single stage of pregnancy. I knew exactly when there was cardiac activity (detectable or undetectable by ultrasound wasn't relevant) I had two lines, conception... by some weird twist of fate, had already occurred, and life had already begun... but was it a baby? I remember when this happened when I was pregnant with Raea. I lived in an 1100 square foot apartment with 5 people total (Matt and I included). I remember Matt was in complete disbelief and taking test after test and he kept saying "well, it's not a baby yet." He had a close family member that experienced recurrent loss, at the time he had a perspective I never had so I was mad at this stance he had (thought I also think he was just in total shock and disbelief and terrified that we couldn't do this). But from my perspective?... My mom had 8 kids. Two lines meant a baby was coming no matter how faint or how early. But here I was about to say the same thing Matt said to me to my own kids. I hesitated to tell them what I had been taught because all those worst case scenario stories that flooded the internet... Maebel wanted another baby in the family so bad, and I couldn't bare to see their hearts break. It's like I already knew in that moment that there wouldn't be a baby... at least not this time. I told them that mommy's body is starting to make a baby, but we're not sure if it will grow so we're going to keep it a secret until we're sure it's growing . I'm so glad I told them this way because their expectations were that there might be a baby but might not. Like it was totally normal for it to not grow... and with miscarriages occurring in 1 in 4 pregnancies, it is actually normal. But it doesn't feel normal and it doesn't feel fair.
Maebels birthday was a bit more relaxing and since I was ovulating in general my mood was much better. I was looking forward to the future and feeling confident in a better result. While 1 in 4 pregnancies are miscarriages, 1 in 50 women experience 2 in a row... so I leaned into the statistics even though statistically I should have never been pregnant in the first place. But here we are, I couldn't see our family without another baby and though I had been singularly focused on figuring out why my legs were so painful for years, my focus quickly shifted to this and only this.
My whole entire summer was consumed by the stress of all of this. At the very end of the summer we went to the Cape and I was in what the Trying To Conceive (TCC) community calls the "Two Week Wait" (TWW)... I had confided in very few people but significantly in my sister who knew way more about this than I did with her own fertility struggles. She told me she loved the TWW because there was hope and nothing else you can do but relax. I really felt that sitting on the beach with my family. It was truly the highlight of the whole second half of the year.... Thank God I got this short breather, because rocky roads were up ahead.
Because I didn't have a Menstrual Period between pregnancies, I wanted to make sure I tracked every single thing so that I would never have to sit in another ultrasound room and question the conception date or implantation date etc. etc. So I started testing pretty early (two week wait was quickly a one week wait) and on 9 days post ovulation I had a faint line. It can take between 6 and 12 days for implantation to occur and for HCG to start producing but because I tested from 7 DPO (days post ovulation) on, I knew there was very small room for error in knowing my gestation.
Sadly I had become somewhat OCD peeing on a test every day because my lines were not really getting much darker... which isn't a good sign. HCG is ideally supposed to double every 48 hours, but lower than that is still considered normal. I called the doctor just before 4 weeks pregnant because I was making myself crazy with the slightest change in line progression that my sister though concrete data would be better but she also was kinda like "eh, could go either way though" having seen a million and one line progressions from friends in her support groups. She was even sending them mine and some had success stories with similar lines some had losses. The doctor sent me for serial HCG's and here's where things start to get pretty bad for me... the worst stretch of the year by far.
I honestly can't really write it out without reliving some level of panic, but my first HCG wasn't great. It was lower than normal for the days post ovulation but everyone is saying "it's the doubling that matters" but I knew. I knew exactly when my HCG started producing so I was doing math and it was hard for me to imagine it had been successfully doubling thus far and still be that low! I had panic attacks and suicidal ideation. I couldn't be near knives. When I had postpartum anxiety with Raea being around knives was super scary for me because I had really instrusive thoughts that I was going to drop her on the dishwasher with the knives face up (even though they were face down). For quite some time seeing knives on the counter left after cutting an apple always made me feel unsafe. No intention of doing anything with them but visions of bad things just go into my head because I have legitimate issues. So passing by the knife block I could only think about one thing... getting this out of me so I can stop being in such panic! Obviously my hormones have swung from one way to another and back again but I was not okay and this pregnancy felt like it could actually kill me. The doctor said even a 50% rise is still normal, so I started doing things to help myself. locked my phone, made sure Matt moved the knives, started doing puzzles and bought this "pregnancy after loss" book with a new exercise to do everyday (which was really good even though I was a psycho) and looking for a therapist for this exact issue. In the meantime I had more bloodwork to do. My second draw was BARELY a 100% rise. it was a 92% rise in 42 hours so it would have theoretically doubled in 48 hours... so I did think "Okay... maybe it will be okay..." They wanted to do one more... and so did I. One more decent draw would hopefully bring me out of this constant state of panic..... NOPE... now it was only a 72% rise. I had a panic attack every single day I had a blood draw and like an idiot I checked this one at a fucking red light driving home. I never do that but I was so desperate for some relief from the anxiety I thought for a second I'd get good news and it would be great but not even close. I had to pull over. I could barely drive. It was raining. I had to call a help line just to get me home.... They wanted to do another blood draw but I declined. I felt like I already knew what was happening but didn't want to conclude for sure or I was going to have to either watch the numbers slow down but continue going up until they stop (aka: watch the baby slowly die), or have to decide to abort, something I never thought I'd have to do, to save myself from the pain and from the literal danger I was in just existing in this space... So I just looked away and stopped tracking anything because I'd rather not know. I waited to start bleeding again... but two weeks past and I was still pregnant.
I didn't have much faith that this would be a good result. At this point I was googling too much and reading about low rising HCG that went into the second trimester could still result in loss. but since I had no more concrete evidence that the HCG didn't start to increase more ideally, I could at least convince myself of something positive to get through the day. At 6 weeks and 6 days, we went to stART on the street and there were food trucks and weird smells and it was hot and1 I felt pregnant. For the first time in months of being pregnant I actually felt it. When we got home I said to Matt "Maybe my HCG is increasing a lot. Maybe this will be good".... I started bleeding that night.
I was relived weirdly. Sad. Devastated. But simultaneously relived. Knowing how bad the start of this was, I feel like I would never ever trust this pregnancy and it would be 9 months of hell. I worried about everything. I couldn't live in this worry anymore. Back to the lab for more bloodwork. The HCG wasn't good. It was an estimated about a 23% increase every 48 hours across the last two weeks. Not good. In my mind I was sure it was starting to decrease at this point.... but I needed more bloodwork to confirm. We went for an ultrasound. I was measuring only 5 weeks and there was nothing visible on the screen. I was told again "It's too early" and because I had no LMP (Last Menstrual Period) the date I was giving didn't seem like it was good enough, but I was sure. The on call doctor came a bit over an hour wait later. I was sure I was miscarrying but until I got more bloodwork 48 hours later they wouldn't know for sure. Iw was told there's a chance I had a vanishing twin and that's why my HCG rose normal and then slowed down... and that a viable pregnancy was still possible... but not probable. I already knew but they just couldn't make the decision for me. I didn't have the luxury of summer vacation and waiting days and days for a spontaneous miscarriage this time so I once again opted for the Abortion pill. My chart for my first miscarriage says Spontaneous Abortion. My chart this time says Abortion. It really makes you question all those statistics they have on abortions.... They aren't accurate because I was very obviously miscarrying. There was no heartbeat, no embryo, just an empty sac... but on paper I aborted... and some pro-life activist somewhere is using statistics including me in their arguments against abortion. Don't get me wrong, I very obviously believe it is a life given the severe feelings of loss and grief... but there are a million ways to protect the unborn. Better access to healthcare for the mother, maternity leave, child tax credit, the pump act (fortunately passed a new version of this), access to contraception (even if it fails some of us)... long long long list of other things to do... but my experience leaves me unequivocally clear on where I stand politically on this issue. Do not fucking touch access to abortion care, because it's access to miscarriage management. Miscarriage, 1 in 4... I used a week of sick days (something maybe people don't have) because even with the Misoprostal it took a long time. I feel like my body was pretty resistant to it both times... My body wants to be pregnant... apparently... We had kept this one a secret from the girls. But I had to tell them since I was on the couch for a week and they recognized some things that they remembered from last time (pads in the trash, pregnancy tests tracking the fading line).... And I told them we tried again. I think Raea's curiosity and worry was worse than telling her the truth so I let them know and I cried a bit but they both were nonchalant about it and said "just try one more time and then that will be enough" ... Ugh! Try one more time! I was way more sad this time because it was just so scary to think about doing this again. It felt impossible. But I'm stubborn, so here we go.
Matt and I did have a little disagreement with what to do next, but ultimately he came around to "my body my choice"... The panic attacks and needing to hide knives from me was a lot from him. I get it. I'm a bit crazy... but I did find a therapist specifically for TTC and for Pregnancy after loss... and was less attached to the idea of a baby and more just wanting to make sure I follow all the way through. I had decided one more would be it. I thought one of two things will happen, one... I would miscarry again, but once I am 3 in a row they start referring me for all sorts of other things... at that point I would know we hit a dead end and it's back to botox I would go... Or two: By some miracle we take a baby home in 9 months. At this point the Doctors were just saying "bad luck" ... so I just wanted to follow through. I was 99.9% sure I could conceive again so here we go. Matt wasn't even home the day I ovulated and sure enough mid October .... two lines...
At this point my sister shared some information with me on hyper receptive uterine lining... which I guess is somewhat new research... basically my body accepts every single fertilized egg and is willing to give it a try even if it's a bad egg or combination. Many people who time things right, if the egg/sperm combination isn't right their lining just doesn't implant it.... whereas mine is like "eh, lets see what happens" so my odds of conceiving are super high (checks out) but so is my likelihood of miscarrying, especially since I'm a bit older. Obviously this information made me feel like there's an explanation...but did have me worried about what was to come.... but so far... damn. It's been much better.... more details in Part 3 which will come in 2023…. Time to put 2022 behind me.
2022 Plot Twist... Part 1
I had put in a "Placeholder" post with the intention of moving on and getting back to weekly documenting of my training.... but that obviously didn't happen. With everything I had been through in the back half of the year, updating my training for the tiny audience of PAES suffers that find me through google or instagram just was not a worthwhile investment of my energy... BUT I would like to update to at least follow up on how the McGinley Method has continued to work and what my plans are now. Warning... There's a plot twist. Huge Trigger warning for mention of miscarriage, and political views on abortion...
Picking up where I left off in June...
On June 24, the day Roe V. Wade was overturned, I found out I was pregnant. This quite possibly, could be the absolute worst day on the planet to find out you are unexpectedly pregnant. If you've followed my blog for awhile you probably know I have pretty liberal political views, but primarily have remained conservative with my abortion views, I just always maintain that I do not believe it should be politicized and it is more of a personal moral issue for each individual. I do believe it's a life, and access to abortion care is never something I ever thought I'd even need to consider for myself. This unexpected situation did not (initially) change that at all... but still... I felt more empathetic to unplanned pregnancies (As two consenting and married adults, we still use recommended precautions to prevent an unwanted pregnancy, but here we were.... again....) I also felt pretty triggered by the amount of judgement passed on people who get pregnant without wanting to when this is my second rodeo here... like, Okay. It was also the absolute worst day to find out you are pregnant for other reasons... Why? Because every single possible horror story of wanted pregnancies gone wrong were blasted across the internet. Suddenly the fragility of it all hit me in a way I had never even considered before.... Little did I know that was just the start of becoming acutely aware of how fragile it all is.....
I really struggled with finding out I was pregnant for the first few weeks.... If I had a dollar for every time I said some version of "How the F did this happen... again!" followed up with ironic laughter and tears... I'd have enough money to take a reasonable maternity leave! This isn't the first time I have conceived with protection. Raea is that 1% on the back of the trojan box.... well of course I'd be the 1% again! PAES impacts less than 1% of people, I'm a lightning rod for rare and random things happening, apparently....
The tears were complicated.... On the one hand we just spent close to $30,000 on my legs and now I have to discontinue treatment until AFTER breastfeeding (which the recommendations were just switched to two years right before Roe V Wade overturned.) I'm already depressed over having lost myself in all the diagnostics and not being able to move and exercise the way I most enjoy... and I was finally starting to feel like I had a path forward...
On the other hand... I didn't feel pregnant. I didn't trust the pregnancy. I was full of anxiety and I couldn't pinpoint if it was my intuition preparing me for what was to come or if it was because so many reasons to worry were circulating the internet that I was just made to feel insecure about it all... I kept calling the doctors trying to get in to see them earlier... telling them I'm 37, and a grandma in baby making years, shouldn't I be monitored more? But nope. I had two previous uncomplicated pregnancies with the same partner, and no issues with fertility (unless you count getting pregnant with protection twice... which isn't necessarily a fertility issue, but later I learned could be a contributing factor to the events to follow).... "Call if there's cramping or bleeding"... cool... thanks for NOTHING! I had spent so many years advocating for my legs that I couldn't tell if my desire to keep badgering doctors to do more for me was reasonable or if I just have lost so much trust in the whole system that I can't stop making phone calls even when unnecessary. I had to talk myself off a ledge many times and convince myself to dial it back "be normal, Caitlyn... Try and trust this..."... And so I started to... Nothing would have made a difference anyway, but in hindsight my intuition absolutely knew something was wrong here... but I accepted that everything is fine until I have signs otherwise....
Matt was having trouble with this at first. We were DEAD BROKE when we had Raea (unplanned) and even though we were not much better a few years later, I wanted kids close in age so we put everything in our life on credit cards took a chance on a new company, and stretched ourselves insanely thin for years to live in a safe area and keep a roof over our head but... there's definitely some residual trauma that really makes Matt afraid to do it again even though our situation has drastically improved since Matt has had 5 promotions in the last 5 years and the company has skyrocketed. I actually remember he came in from a 2+ hour run right around when I was 7 weeks along saying that he was getting excited. I miss runs like that, where you process all the anxiety you've been harboring and come back free. His excitement made me feel excited, too. I was still feeling really uncomfortable... I had no food aversions, no sickness, no fatigue... but maybe after everything with my legs I'm catching a break and having an easy pregnancy. "Maybe it's a boy" ... I never experienced a boy pregnancy before? Everything I read said that chance of Miscarriage is a lot lower once there's a heartbeat. I had made it to 8 weeks and no bad signs yet, heart should be strong and things should be good. I started making plans to rearrange the house for a nursery, created a list of things we needed and an Amazon wishlist... I bought the girls some zipper up bunkbed bedding so they can be bunked again once we make it public... I also I bought some big sister t-shirts for the girls, a joke t-shirt "Oops we did it again" for me, and a "I'm the Last One... Seriously" onsie for the baby.
A few days later I started spotting. I never had that happen before, but lots of things were saying it still could be normal. We went to get an ultrasound and the baby was only measuring 5weeks an 6 days... I knew the moment I saw the ultrasound that it wasn't what it was supposed to look like at nearly 9 weeks. They told me "it's too early to know anything" because to them it was only 5weeks an 6 days... often too soon to detect a heartbeat... but I knew all the possible dates of conception and knew when I most likely ovulated, and though I tried to convince myself I got something wrong, I was already bleeding. I went home and waited for the cramping and bleeding to intensify. It took a while.... but eventually, on Raea's birthday, I had early to mid labor cramps and miscarried at home. I returned to the doctor a few days later (still bleeding) to confirm and unfortunately I was retaining tissue and needed intervention. Abortion care.
I did have the option to wait it out... but at this point I was already trying to figure out when I could next conceive. Yes it was an unplanned pregnancy, but I couldn't see our family without a baby now and having been barely dipping my toes out of the world of depression just before pregnancy, I was hitting some new lows. Though Matt was completely fine with our family being complete as is, he understood this was something that I needed to feel whole again. So I opted for the "abortion pill" to complete my miscarriage so that my HCG could return low enough for my cycle to reboot. The first round of Misoprostol unfortunately barely did anything... so then I'm getting second script over the phone just a few days after the first. The OB is letting me know that in Massachusetts it's rare, but since the overturning of Roe V. Wade they have had complaints regarding some pharmacies giving people a hard time. I was coached on what to do if that happened to me (it didn't, fortunately). Given that I was getting my second in a row I couldn't help but think of what it would be like to live in Texas going through this. Insult to injury, for sure. I have never been more pro-abortion access in my life. Fortunately round 2 worked. I was given a series of blood draws to make sure my HCG was dropping. I could tell from signs from my body that my cycle had restarted before my HCG was even below 100, and I could conceive again soon, I continued to take pregnancy tests every few days to make sure my line was fading until it was gone. My last HCG draw was 5.2 and I ovulated the next day, Maebels birthday.
During most of this pregnancy I did continue to workout... And I did actually document that in my previous post where I foolishly thought I could find some sort of balance in this rollercoaster I was on. I made that post thinking it would be the start of documenting workouts for my second pregnancy.... but as I'll write in part 2, that was short lived. I was running about 20 miles a week and was lifting. But I started getting treated by the chiropractor for Thoracic Outlet Syndrome since my left shoulder had been numb for months. They thought this could maybe be a sign of ectopic pregnancy, thankfully it was not that. I was sure that I had this numbness before I got pregnant so I wasn't too worried... but certainly it opened the door to one more thing to worry about in future pregnancies. More to come in Part 2.... If I ever get around to it... The big take away for PAES followers or people who stumble here due to PAES symptoms is that I did not discontinue botox for anything related to symptoms... My symptoms were getting worse but predictably and gradually so. I have no concerns about if the treatment is working, I just simply couldn't get it again when I needed to. I considered going back to get a treatment between this loss and another pregnancy, but part of me really worried that the 10 CTA's I had in the last year had something to do with the miscarriage. I have since been informed that there's no way and have since regained confidence that this was not the cause... but at the time a. I couldn't risk it and b. didn't want to wait the advised 3 months in between treatment to try again.... SO we just tried again right away and surprise to absolutely no one that knows my fertility history, we were pregnant again.
Welcome to my blog! I've been blogging for a long time on various platforms. My intention has never been to reach the masses, but rather to give myself a chance to reflect and journal. I feel it at least challenges me to be somewhat coherent, however you can expect ramblings and grammatical incorrectness here!
I've recently been diagnosed with CECS and fPAES and had it treated with BOTOX of all things... So I suspect to see more and more people looking for answers with that in the future and hope to continue blogging so there will be easy to access follow-ups as that was helpful for me.
NOTE: Apologies that some of the pictures incorrectly load sometimes. I try to keep up with the glitches, but can't always! Hope it doesn't impact the blog experience for all the PAES visitors.