Preconception appointment...sort of

Yesterday evening we had an appointment for a preconception visit with one of the midwives at the birth center that we visited a few weeks ago. I was a bit anxious and nervous about this appointment because I was still concerned that my health conditions would make them nervous and say that they couldn't accept me as a patient. So, I formulated my list of questions, had my list of medications and supplements printed out, and was trying to be as prepared as possible. Unfortunately, the appointment didn't go as well as I would have hoped, but it also wasn't as bad as I had feared.

We got to meet with the midwife and a student midwife. Right off the bat I told them a little about my health situation and handed over my list of medications. The medications themselves don't seem to be a problem, but because handling patients with chronic Lyme disease is fairly new for them, they couldn't guarantee that I would be able to work with them and give birth at the birth center. They want me to see a maternal fetal specialist (or going to a Lyme literate OB/GYN would have also been an issue) to get a determination of whether it will be safe for me to give birth there. They have someone that they have an informal relationship with who apparently respects the mother's wishes so he wouldn't just automatically say that I needed to be in a hospital (which is my fear) so the midwife will be calling him today to give him a little information about me and see if I would be able to see him before actually being pregnant. And then she'll call me sometime early next week, most likely. Then I'll see this specialist and one of three options is like: a) I'm told that I'm high-risk and need to give birth in a hospital; b) I'm told that I'm NOT high-risk and will be cleared to give birth at the birth center (or wherever I choose); or c) I'm told that I'm not high-risk but that I should really be followed by this specialist in addition to being able to work with the midwives and give birth at the birth center. Obviously, I'm hoping for option b but I would take c just as easily and if it comes down to a, I'll deal with that.

So, another step to take in this process. And my anxiety and nervousness continues and will most likely continue until I've seen this new doctor and gotten some answers from him. My fear is that I will be deemed high-risk and told that I have to give birth in a hospital. That isn't the end of the line as far as options go. I could go to a few other birth centers and see what they think. I could explore homebirth. There is a place in Tennessee (The Farm) where they might be more willing to take me on as a patient. But the bottom line is that if I am actually deemed high-risk, I see it as unlikely that anyone outside of a hospital would be willing to work with me. I'm trying really hard not to jump immediately to that scenario. I know that giving birth in a hospital wouldn't be the end of the world, but right now it is so far from what I want that it's hard to be okay with that. I have looked into the hospitals around here and there is one that has natural birth rooms with birth tubs and would be okay if I needed to go that route.

I am trying to remain as calm as possible and focus on the fact that whatever happens, it won't change us moving forward to have a baby. I may just have to alter my idea of what the birth will be like. Again, not the end of the world but just a bump in the road. I'm used to bumpy roads. I just wish, for once, something could be easy.

I'll update again when I know more about this specialist and what the next step(s) will be.

The journey continues...

Since my last post here, a lot has happened while not much has changed. What is mainly happening is surrounding my continued reading, researching, and talking with Eric about what to do to prepare for pregnancy (I like that term), how to handle pregnancy, nutrition (both before and during pregnancy), and all kinds of other things. Over the past month since Eric and I have started talking about the idea of starting a family soon, he has slowly warmed up more and more to the idea to the point where I think he is excited now. He's starting to do his own reading now (initially at my request and now on his own) and we're talking a lot about all aspects of pregnancy and how we're going to raise our child(ren).

I have also begun to get off of some of my medications and supplements that I either know I'm going to need to get off of or I suspect it will be a good idea for me to get off of. I'd like to have as much time as possible without these medications in my system before getting pregnant so by starting to wean down and/or stop taking them now, I'm hoping to give myself as much time as possible. The biggest issues I'm having now that I've stopped or weaned down on some of them are more/worse headaches (one of the medications I'm slowly weaning off of is a headache preventative and I'm trying hard not to take any of my usual “as needed” headache medications) and more trouble sleeping (I've stopped a few “as needed” sleeping meds/supplements and the headache med I've weaned down on also helps me sleep). I see my doctor on Monday and we'll be going over ALL of this stuff so it's likely to be quite an appointment. I know I can live with these symptoms because there's a reason for being off of these medications. But when I have nights like last night when a bad headache and nausea make me feel awful, I don't really have much I can take for them (I do have a nausea med that is fine for me to take but I was already at my maximum dose), and I'm dealing with all of this well before even trying to get pregnant it's a little rough to deal with.

On a positive note, Eric and I had an appointment last Thursday at a birthing center about a half an hour from where we live. We got a tour, met some of the midwives, and had a chance to ask them questions to see if it would be a good fit for us. They have worked with Lyme disease patients before which is great. But I was (and still am) a little concerned that once they realize what my situation is, how extensive my medical history is, and especially that I have a port-a-cath and am on IV medications they'll be scared away or realize that I'm not a good candidate for a birth center or home birth. The tour was great – we really liked the birth center and the midwives we met. The birthing rooms are really nice, both with birth tubs, and on the walls there are all the footprints of the babies that have been born in that particular room with their name and date of birth. That was really neat.

And the midwives were great. We especially liked their view on prenatal testing – they told us all the testing that could be done and said that they will give us all the information about each test with research from both sides, and then let us make the decision on each test for ourselves and support our decisions. Then, if something was a little strange and they thought that a particular test would be more helpful or necessary, they would present that to us and urge us to have the test(s) done. We both really like this since we don't want all kinds of tests done just because they are routine and if the midwives ever told us we should really have a particular test done, we would be more likely to believe that it's important and trust their advice.

After the tour, I called and made an appointment for a preconception appointment with one of the midwives for next Thursday, June 28^th. That will be a chance to talk through all of my medical history as well as talk about nutrition and everything else that we should be doing to get ready.

I also saw my doctor this afternoon to talk through all of this. We'll be switching up my antibiotics to pregnancy safe antibiotics that I will stay on throughout pregnancy and however long I'm breastfeeding. There are a number of options for pregnancy safe antibiotics that will help keep the Lyme from being transmitted (at least as much as possible) but the one that I'll be going on is Ceftin followed by Mepron (not technically an antibiotic but it's apparently one of the choices) when I actually get pregnant.

And then there's getting off of some of the other medications I'm on – medications for headaches, nausea, sleep issues, and various other things. I've already managed to get off of a few of the medications that don't seem safe and I would really like to get off as many other medications as possible. It will be strange and I expect to have some symptoms get worse, but I think it's worth it for me to go as medication-free as possible. There are some that I know are safe during pregnancy that I will be staying on, one of the biggest ones is zofran for nausea which I would have a lot of trouble living without, and we'll see how it goes getting off of as many of the other ones as possible, one by one. For now, we're not stopping any of the things I'm on but some of my “as needed” medications I won't be taking anymore and I'll be cutting down on one other medication.

My LLMD has also ordered some labwork, specifically to test my rubella antibodies to see if I'm protected against it and also to look at my cholesterol level and some of my vitamin levels. I asked about prenatal vitamins and she said that since I'm already on folic acid and a good amount of other vitamins (in my IV everyday) then I don't need to start one now. I was a little concerned about needing to be on iron which I've had trouble tolerating but since I'm not anemic now, she didn't feel that was necessary. This will also be a question for the midwife when I go for my preconception appointment.

This is all getting pretty exciting and feels more and more real the further we move forward with this. I'll be back with more information as I find out more things. I hope there are some who will find this helpful and informative, and I'm certainly enjoying writing about and documenting this process.

And so the journey continues...

Where do I start?

I'm writing this today partly for myself, but also in large part for those of you out there who are or will be in similar situations. But let me back up and explain a bit about where I'm coming from and what I want to begin to talk about.

I'm approaching the 15 year anniversary of when my health began to crumble. This July will mark 15 years since that fateful summer when I got the “flu” and subsequently began getting sicker and sicker. Over the past 15 years I have been through a lot. I have been through times when I couldn't leave the house, times when I could barely get out of bed. There were times when my GI system shut down and I couldn't eat. There were nights when I slept curled up on the bathroom floor because the treatment I was on caused horrible nausea and vomiting. But I don't really want to talk about all of that, all of the bad times. They are with me all the time, but (I hope) they are behind me for the most part. (If you want to read more about my health, you can visit my other blog here or my Caringbridge page here.)

I want to talk about the other stuff, the things that have mostly happened in the last few years. I met someone who wasn't freaked out by all the medical stuff, or maybe it's more accurate to say that he didn't let it get in the way of wanting to be with me. The port-a-cath in my chest was just a part of me and, while I'm sure it was a little bit of an adjustment, he doesn't seem to let it bother him. He has always said that he doesn't see my health challenges as defining who I am, they are just one aspect of my life and not something he sees as especially important. For a very long time I didn't think I would ever find someone like that, who would accept all of my baggage so willingly and want to be with me so much that he would be happy to deal with everything that goes along with me. We dated, he proposed, we got married, and we lived happily ever after. Well, maybe not quite yet, but we're working on that.

And that brings me to the point of this writing. We've been married for almost 3 months (yes, not that long) and we're now seriously talking about starting a family. We're not talking about starting right now, but in the near future. There are some things to take care of first (which I'll talk about in a minute because some pertain to my health) but I see it happening soon. I'm not going to give any kind of timetable here partly because I don't want that “out there” (it IS kind of a personal thing, after all) and Eric and I are not entirely sure about what that timetable is.

Let me back up a little bit, though. Back up...10 years to when I was about 20. At that time, I knew I wanted to have a family but I was basically resigned to the idea of adopting because I didn't want to take the chance of passing Lyme disease along to my children. And then, when I actually faced the reality of it (in the last few years and especially while watching my sister-in-law go through her pregnancy) I realized just how much I want to have my own children, to have the experience of pregnancy and birth. And then, when my niece was born a year ago and I watched my sister-in-law have the experience of breastfeeding, I realized how much I want to have THAT experience. As I have gone through each of these realizations, I have done research and talked a little bit with my doctor and talked more at length with my counselor (who is Lyme-literate and has Lyme herself) and of course talked with Eric. For each thing that I previously thought wouldn't be possible (or wasn't advisable), I have spent time thinking about how I feel about it and come to the conclusion that I feel very strongly that I want to have my own children and I want to be able to breastfeed. So I am committed to finding ways of making that work, and I have enough support from family and doctors that I know I can make it happen. It will just take more planning and preparation than most women (and couples) probably have to think about. And I will need to be on safe antibiotics for the duration of the pregnancy and breastfeeding period. But I know it's possible. Other women have done it and have had healthy, happy children.

And now this brings us closer to the present. Over the past...month or so I have been doing research on pregnancy and birth. It started out as research into which medications I'm going to need to get off of in order to safely start trying to conceive so that I would be prepared for my next doctor's appointment when I plan to talk about all of this. It turns out that there isn't as much clear-cut information out there as I would have hoped. Maybe my doctor will have some more definite answers since what I have come up with for the most part is that most medications fall into a grey area where there really isn't much known about possible affects to a developing fetus. It's clear that I need to get off of the medications I'm on to keep my headaches minimal (I'm NOT looking forward to doing that) and my general philosophy on this is that if I can manage without a medication, I want to live without it and remove any possibility of damage.

And then I moved on to researching supplement alternatives that would be safe as well as which supplements that I'm currently on are okay. If medications are a grey area, this is...what's greyer than grey? You get the idea. Everything that I'm reading is basically saying, “We don't know if there's any danger to taking this, there doesn't appear to be any danger, but it's best to just avoid it anyway just in case.” And, don't get me wrong, that's fine, but if we're going to go that route, we should avoid a lot of things, like breathing any air in the city (although that might actually be known to cause harm so that might not be quite the same). My philosophy with supplements and herbs is similar to medications but a little different. I'm not as concerned about taking supplements if I know they are good quality and I know they don't contain anything questionable (which they shouldn't if they're good quality). I will talk with my doctor about the supplements I'm already on and if there are any I can transition on to in place of the medications I'm going to be weaning off of. I trust my doctor.

And the next step I took (well, actually, everything was kind of happening at the same time) was trying to find a Lyme-literate or Lyme-friendly OB/GYN (wow, is THAT a difficult task). I asked around in the Lyme groups I belong to on Facebook and whoever else I thought might have some suggestions and people had no one to recommend that was a reasonable distance away. I had people asking if Virginia was too far (yes, it's way too far) and I just got discouraged, thinking that maybe having a baby wasn't a good idea after all. I did find some naturopaths in the area who treat tick-borne illness and also offer women's health, including fertility, so that renewed my spirits a bit and I tried to contact them. But then my focus shifted a bit. Why do I need to be limited to just an OB/GYN? My counselor had asked me a few weeks ago when we were talking about all of this what type of birth I wanted, if I wanted a hospital birth or a home birth. And, pretty much without hesitation (and without having given it a whole lot of thought) I answered, “I'd really like a home birth if I was allowed to have one.” And by “allowed” I mean if I wasn't deemed to be high risk. So, I shifted my focus and started searching for midwives. There aren't any around here who are Lyme-literate (although I did find one in New Mexico who is, contacted her, and she is keeping me in mind at an upcoming conference where she's presenting about tick-borne illness so that's a great connection) but I have now contacted three birth centers and two of them have responded saying that they have worked with Lyme disease patients before. I am so encouraged. THIS IS GOING TO HAPPEN FOR ME!

I have done so much research, reading, searching, etc. and I feel lately like that's all I'm doing but I'm really enjoying this focus. I am reading websites, blogs, watching documentaries, listening to podcasts, and reading books about pregnancy, birth, home birth, whatever I can get my hands on. I've called and made an appointment at one of the two birth centers that confirmed that they have worked with Lyme patients to schedule a tour (I'm waiting to make an appointment at the other one until I have a sense of this first one) and my gut tells me I'll choose one of them. I may very well still need to have an OB/GYN on board and I'm okay with that, but I feel so much better with the idea that they wouldn't be the only one, that I would have a midwife who would be working with me and that I would be taking charge of things.

I never liked the idea of a hospital birth. Maybe it partially comes from my mother, who would have had all 4 of her kids as home births if she could have but my older sister ended up needing to be delivered by c-section which, at that time, meant it was almost assured that all of her subsequent deliveries would be c-section. But my mom fought hard for a VBAC (vaginal birth after cesarian) when she was pregnant with me, even necessitating changing doctors when she was 7-months pregnant, and she was successful but it meant I had to be born at the hospital. Then my brother was born at her midwife's house. And finally, with my younger sister, exactly 11 years (to the day) after her c-section, my mother had her home birth. I grew up surrounded by alternative medicine, homeopathy, I was homeschooled until 6^th grade (and again for the end of high school). Some of it I don't agree with, some of it I do, and I'm still sorting through a lot of it but I think that's totally normal – we spend our adulthood trying to sort out our childhood and figure out how to do better (as we see it) for our children. (On an interesting note, my mother-in-law is totally the opposite to my mother in her views on birth. I know she would be totally against giving birth anywhere but in the hospital and certainly wouldn't support a VBAC. Needless to say, I won't be discussing this with her.)

But I think my rejection of the idea of a hospital birth also comes from my years of dealing with illness. My experiences of being in the hospital over the years have been anything but pleasant and I have had to fight hard for proper treatment or even for the doctors to show compassion. And knowing what happens during hospital births, the amount of times there are interventions used that may not be necessary, the number of times those interventions can actually lead to a worse outcome, the harshness of the environment with the lights and people constantly coming and going, and the idea of having to fight against people to NOT have interventions or be given medications makes me know very clearly that I want nothing more than to give birth at home or in a birth center. I want to fully have that experience and to only have people around me who are supporting what I am doing and letting me do what I need to do, what my body knows how to do, and providing help and guidance when needed. And I want to have a midwife (or midwives) who I totally trust so that if there are issues, either before or during labor, and they suggest going to the hospital, I know it's really necessary and I will feel that I can totally trust what they tell me.

So, you might be wondering why I'm doing all of this now when I'm not even pregnant, not even trying to get pregnant yet. If there's one thing I have learned over the years with chronic illness it's that things don't follow plans. But, if you have some kind of a plan in place, when the unexpected happens, you're so much more prepared to deal with it. So, I want to start building a relationship with a midwife (and possibly an OB/GYN or whoever else is on the “team”) now so that they really know me and my (somewhat complex) history and situation well before there is a baby to worry about, too. I want to be sure that whoever is taking care of me and a future baby is totally committed and comfortable with what my situation is and won't abandon me or flake out at the last minute because they don't think it's necessary to test the cord blood or they don't think I should be on antibiotics. I want to be sure that they will work in some capacity with my Lyme doctor and will be open and willing to learn from her and me about my situation and what it means for my pregnancy. I want to make sure NOW that I am giving my future children the best possible chance at a healthy, happy life and I want to make sure that I'm giving MYSELF the best chance at a healthy, happy pregnancy and birth experience.

And I want to write about this process because there is so little information out there from women (and couples) like me. There is so little information about Lyme disease and pregnancy. Believe me, I have searched. There is an amazing blog called The Lyme Pregnancy Journal which I found last summer and was so amazing to read through because it gave me hope that not only is a healthy pregnancy with Lyme disease is possible but there's a woman who has been through it and shares her whole experience! There are some other scattered pieces of information, but for the most part it doesn't exist. So I want to contribute my own experience. And I'm starting early. I mean, this is way before I'm even pregnant but it's the point where I'm gathering this information so it seems like the perfect time to start. I may not share everything, but I want to share my journey. So, welcome to the ride! I have no idea what it will be like, but you're welcome to join us for whatever is in store.