I have been somewhat absent in the virtual world since the beginning of the year. It wasn’t my plan, of course, but life rarely goes as plan. Actually, life has a way of not just surprising me, but outright astounding me - not to mention everyone around me too. Turns out, while I was getting my replacement neurostim surgery and all the dramas in the lead up to, and during; my body had a little squatter hiding away deep within - my little dutch kraker. I was also pregnant! I didn't even know it was possible, and yet....
I spent the greater part of the year trying to get my head around it, the marvellously ordinary miracle of growing a new life inside of me. And the sheer terror of being woefully unprepared and perhaps a shade too incompetent to be entrusted with a new little person to keep alive. Honesty, I’ve never really been the maternal, nurturing type who dreamt of marriage and kids from childhood. I wanted to see the world, experiencing the adventures far from the mundane. Though I always had an open mind, for the majority of my adulthood, having a baby was not even an option. I was embattled with Pain, finding my way in my new body and fighting through the workers compensation case. Most of the time just being touched was unbearable, I could barely see beyond the Pain. I was too busy hiding its presence from everyone else.
The big choice to go with the neurostim in the first place nearly 4 years ago was to allow the possibility of pregnancy. Getting older, it seemed, made me not want to lose that chance at normality. Getting so severely sick just six months later, and spending over a year recovering from that threw a spanner in the works and put any baby plans firmly away. When you firmly put something out of your hear, it can ultimately become the reality without even trying. The universe has a sense of humour! But yet, even in all this - the crazy and unconventional - I’m fairly confident I’ll manage in the same way I always do: taking all the craziness as it comes. What other choice do I have? Life is like a box of chocolates....
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| At 20 weeks.... |
The big choice to go with the neurostim in the first place nearly 4 years ago was to allow the possibility of pregnancy. Getting older, it seemed, made me not want to lose that chance at normality. Getting so severely sick just six months later, and spending over a year recovering from that threw a spanner in the works and put any baby plans firmly away. When you firmly put something out of your hear, it can ultimately become the reality without even trying. The universe has a sense of humour! But yet, even in all this - the crazy and unconventional - I’m fairly confident I’ll manage in the same way I always do: taking all the craziness as it comes. What other choice do I have? Life is like a box of chocolates....
This was no ordinary pregnancy. It is a high risk pregnancy from the get-go for both baby and I. The CRPS; the implanted neurostimulator, for which pregnancy is one of those “not recommended for pregnancy", to "Ah, no idea if it’s safe - can’t test on pregnant women - *shrug* no guarantees!”. Even though my neurosurgeon said they had not had any previous patients who had a full pregnancy with an active neurostim, they didn't anticipate it being much of a problem. I am disabled, which in itself is not the issue others make of it. It wasn't going to make it any easier. I don't even know if I can even anticipate the problems I will need to figure out solutions for just yet. I have ‘difficult to manage’ asthma that doesn’t always respond to treatment and flares for no reason. I hope it behaves itself. My partner and I are over 35, which isn't really old in the scheme of things and the least of my worries.
A bigger issue was my medication list. It was not going to be possible to come off, or change, any of my medications. It took quite a while to go through the whole medication list, looking at any alternatives and consulting with my other specialists. None of them were able to be changed, it was too risky to meddle with the combination when there was so much at stake. I am certainly not the first woman in this situation. Many women need to continue taking medications while pregnant, but it is far from ideal. The difficulty too, was if one was tapered off, could it be the one that would make the whole jenga block tower completely fall apart.
A bigger issue was my medication list. It was not going to be possible to come off, or change, any of my medications. It took quite a while to go through the whole medication list, looking at any alternatives and consulting with my other specialists. None of them were able to be changed, it was too risky to meddle with the combination when there was so much at stake. I am certainly not the first woman in this situation. Many women need to continue taking medications while pregnant, but it is far from ideal. The difficulty too, was if one was tapered off, could it be the one that would make the whole jenga block tower completely fall apart.
My mobility is already quite limited, and it would became more so as the pregnancy progressed. I knew that, but what could I do? Women who have far more issues than I are able to give birth every single day and manage, albeit with good support networks. Mobility itself becomes more limited just in the normal progression of normal pregnancy. It is possible that my asthma could get a lot worse in the third trimester, as all those wonderful natural anti-inflammatories released by pregnancy hormones dip lower. Which is why my pulmonary specialist ("longarts" - lung doctor in dutch) didn't want to change any of my medications, even the newer 'untested in pregnancy' ones. It might not even happen - why always think of the worst? What is the point of catastrophising, dreaming of things that might not even come up. All these things can happen even when I’m not pregnant, though perhaps not the ridiculous hormones and large belly!
They did a LOT of extra testing throughout my pregnancy, which was far more medical than the vast majority of pregnancies here in the Netherlands. The Netherlands is a country of midwive-assisted home and birthing center deliveries, not the medicalised hospital birth that we are used to back in Australia (or the UK, USA and many other countries). But even for a medicalised pregnancy, I spent most of my third trimester in waiting room seats, 2 or 3 appointments at that hospital a week! I felt like I was already living there. All the testing, all the scans, all the medical care I received - all showed a very healthy baby. It wasn’t, however, an easy pregnancy by any stretch.
They did a LOT of extra testing throughout my pregnancy, which was far more medical than the vast majority of pregnancies here in the Netherlands. The Netherlands is a country of midwive-assisted home and birthing center deliveries, not the medicalised hospital birth that we are used to back in Australia (or the UK, USA and many other countries). But even for a medicalised pregnancy, I spent most of my third trimester in waiting room seats, 2 or 3 appointments at that hospital a week! I felt like I was already living there. All the testing, all the scans, all the medical care I received - all showed a very healthy baby. It wasn’t, however, an easy pregnancy by any stretch.
Pain not always the biggest problem....
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| And then at 28 weeks... yikes!!! |
While it was a very different pregnancy than usual, I can’t say that it is all the more difficult than anyone else's because I have Pain. Pregnancy, by definition IS difficult: you are literally growing a whole new human being inside your body, one that must not only displace and squish your internal organs to accommodate it, using and taking from your power and energy reserves; then for it to somehow depart and crash its way out from the confines of your body after it has sapped all that it needs. One could call it the best kind of parasite. On the good side, I was fortunate to not have had morning sickness. Which was a good thing - I hate throwing up! I didn't even know I was pregnant for the entire first trimester. I got the shock of my life to see an actual baby floating around inside during my first scan.
During a sizing scan around 28 weeks however, they found I had way too much amniotic fluid, called “Polyhydramnios”. During this period, I had ballooned from a respectable pregnant lady to the size of three houses and was struggling to actually fit into my tiny dutch kitchen and bathroom. This diagnosis was quite alarming, a frightening period for us. Having either too much, or too little amniotic fluid can be a symptom of a whole host of scary things. Things that were of my nightmares. The unknowables of my long medication list and the neurostim (or age, let’s be honest). That it could be my fault... the guilt I felt during this time was immense; hating that I could have put this tiny little person at risk because I was defective. I thought I had left those emotions far behind, but they emerge out when I least expect. That self-blame and self-hatred of having CRPS.
Turned out, I had been gifted with gestational diabetes. This may be something huge and scary for other women, but for me it was the biggest relief. Though a somewhat surprising occurrence, as I had already been through the joys of a fasting glucose tolerance test and passed. Hormones are funny things though, and the universe found it so amusing the first time around that it wanted to give me another crack at it! And, so this fasting glucose tolerance test was a failure, something I knew already as I lay there on the paper-sheeted bed wanting to die in a pool of my own vomit! Often with gestational diabetes, being careful with diet and taking a brisk walk is enough to keep the glucose levels under control. With me, and the other lucky ones, the diabetes proved too unstable without insulin. I ended up needing to inject insulin 4x a day, before meals and bed, for the rest of the pregnancy. Injecting myself was far less difficult than it sounds, or even as I expected it to be. To be honest, by this point I hardly cared. Without insulin, I couldn't really eat anything. Outside of the diabetes I got some dizziness, weird sleep patterns (and dreams!) and lots of peeing, but those are normal symptoms that come by normal pregnancies. And the swollen feet and ankles... like CRPS, but not!
During a sizing scan around 28 weeks however, they found I had way too much amniotic fluid, called “Polyhydramnios”. During this period, I had ballooned from a respectable pregnant lady to the size of three houses and was struggling to actually fit into my tiny dutch kitchen and bathroom. This diagnosis was quite alarming, a frightening period for us. Having either too much, or too little amniotic fluid can be a symptom of a whole host of scary things. Things that were of my nightmares. The unknowables of my long medication list and the neurostim (or age, let’s be honest). That it could be my fault... the guilt I felt during this time was immense; hating that I could have put this tiny little person at risk because I was defective. I thought I had left those emotions far behind, but they emerge out when I least expect. That self-blame and self-hatred of having CRPS.
Turned out, I had been gifted with gestational diabetes. This may be something huge and scary for other women, but for me it was the biggest relief. Though a somewhat surprising occurrence, as I had already been through the joys of a fasting glucose tolerance test and passed. Hormones are funny things though, and the universe found it so amusing the first time around that it wanted to give me another crack at it! And, so this fasting glucose tolerance test was a failure, something I knew already as I lay there on the paper-sheeted bed wanting to die in a pool of my own vomit! Often with gestational diabetes, being careful with diet and taking a brisk walk is enough to keep the glucose levels under control. With me, and the other lucky ones, the diabetes proved too unstable without insulin. I ended up needing to inject insulin 4x a day, before meals and bed, for the rest of the pregnancy. Injecting myself was far less difficult than it sounds, or even as I expected it to be. To be honest, by this point I hardly cared. Without insulin, I couldn't really eat anything. Outside of the diabetes I got some dizziness, weird sleep patterns (and dreams!) and lots of peeing, but those are normal symptoms that come by normal pregnancies. And the swollen feet and ankles... like CRPS, but not!
I do have more pain, even now. Normal people pregnancy pain, normal pain from walking funny because I have extra weight all concentrated on my front. Normal pain from my fluid-filled pregnancy ballooning swollen feet! And the inescapable: my normal CRPS pain in my legs and arm all turned up a few notches. Thank god I have that newer high frequency neurostim IPG! I think without it, I would have had a far more difficult time during my pregnancy, with the suicidal pain like I had before. Maybe more has changed in me than just having the SCS and time. When you survive what was the worst pain, what is the pain that comes after? When so much is at stake and so much to gain?
I knew that my experience: how I chose to process the pain could cause more stress on the baby and me, which is not healthy for either of us. My insomnia from Pain too, nearly drove me into the dark place. But pain that is Pain cannot be simply ignored, nor medicated away. The conundrum. It was also hard to ignore the upcoming risk of pregnancy and delivery (whichever way it happens) could cause further spreading of CRPS into new sites. I might be cold and pragmatic about it all, but I'm not completely divorced from my emotions and fears. The ever present catch-22. At the time I cannot afford to have an asthma exacerbation, it is it the time where I am most at risk. Keeping active is even more important for someone like me, but also all the more difficult when I have more weight to carry....
Nonetheless, I found an excellent physio. I often find that all types of manual therapists are very much a luck of the draw. Sometimes I just happen to find the absolute best for a particular situation or time by the stars and fortune (or hunches!). I think most are doing their best, but some rely upon outdated models with their biomedical limitations which prove to be ineffective and unproductive for pain. And for me personally, I was way too exhausted to even fight to get heard. I need flexibility; an ability to think outside the box to find unconventional solutions. I need someone who is willing to learn with me, to guide, but also who can brainstorm fun and quirky solutions with me. Someone with a sense of humour too, is vital! And that someone was a bubbly, enthusiastic girl named Sophie, who became my invaluable ally, and someone to whom I shall return to post-pregnancy.
So yes, it is a very complex and complicated pregnancy! But you know what? Making and building a tiny new person IS a complex and complicated business. But it is also the most supremely normal and natural thing I have ever done in my whole life. For all the weird, wonderful and downright abnormal things I’ve had going on. Internally, in the micro and macro worlds, past and present; this... well, this is something I will gladly experience. I have always wanted to live the most out of life, to gather the most experiences as I could in my short time on this planet. This is extraordinary - I've felt more normal than I have for most of my life. Even in the pregnancy-related oddities were still wondrous in their normality to experience. On to this new and grand adventure!
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