And the countdown begins! (6 1/2 weeks until due date)

I have gone far too long without writing anything here, despite the fact that I want to write and have ideas of things to write about. It's not that I'm super busy (although some weeks it seems like I'm always on the go), it's more that I'm pretty exhausted most of the time and a lot of the time all I can manage is to veg out on the couch and watch Netflix or Hulu, obsessively check Facebook, or read through some of the many websites and articles about pregnancy, childbirth, and parenting. But this morning I am committing to writing something and actually posting it!

So, first thing's first, an update on how things have been since my last post in...January (wow!). I was 24 weeks pregnant when I posted last, I am now approaching 34 weeks and I can't believe I'm approaching the end of my pregnancy so quickly! There's still so much to do to prepare for Poppy's arrival and to fully enjoy these last few weeks as a family of 2.

Things have been going relatively well overall. My OB appointments have been uneventful which is kind of strange after so many years of dealing with health problems. Aside from being on blood thinners, I'd say that my pregnancy has been totally normal and there have really been no issues which is fantastic! I am still doing my Lovenox (blood thinner) shots once a day and they are just part of my daily routine, although I do have to have alarms go off so I remember. In a few weeks I'll be switching from Lovenox, which is a once-a-day shot, to Heparin, which will be 2 or 3 times a day but is safer to be on when I go into labor because it is shorter acting and can be reversed if I were to need an emergency c-section. I'm not really looking forward to the switch because it means more shots everyday, but it will only be for a few weeks so I'll handle it fine.

We have been doing our childbirth class which is a Bradley Method class. It has been great and I think it's really the best one we could have chosen because it's really thorough and covers all kinds of things that other classes don't seem to touch on. Of course, it's a 12-week class so of course it's going to involve things that shorter classes won't. We worked on putting together our birth plans and I may post them once we've gone over them with the instructor and finalized things.

Now, on the Lyme/chronic illness front things have been pretty stable. I'm still not needing IV fluids very frequently at all. I actually went away for a weekend last month and didn't even bring any with me which is the first time I've done that...probably since I started on IV fluids back in 2005! It's so crazy go have this level of freedom without being hooked up to a pump for so much of the day and to not have my port accessed most of the time. I can actually shower every day without having to think about it which, again, hasn't happened since I started on fluids almost 8 years ago! I'm worried that I'll have a huge crash with all of this after the baby is born and my blood volume goes back to normal, but we'll be prepared for that as much as we can with fluids at home and then deal with the issues as they arise.

We (my doctor and I) are preparing for the testing which will be done at birth to see if there is evidence of Lyme or Babesiosis in the placenta or umbilical cord. She's getting a kit for me to take to the hospital and then the samples will be sent off to the lab in California (Igenex Labs, if anyone is interested). I'm not too worried that there will be evidence of the diseases in the tissue samples but there is of course still a level of fear that the antibiotics I've been on during the course of the pregnancy haven't been enough.

One of the things that the testing will determine, other than whether we need to really be worried about Poppy getting either of these infections from me, is whether or not I will be able to have my placenta encapsulated. If you don't know what placenta encapsulation is, here's a website that has some basic information about it – http://placentanetwork.com/placenta-encapsulation/. Basically, it involves cleaning, steaming, and dehydrating the placenta which is then ground up and put into capsules to be taken for the weeks or months after delivery. This greatly reduces postpartum depression, helps with healing, and balances out your hormones. We are the only mammals that do not consume our placentas and, although I know it may seem gross to some people, the reading I've done on it and the people I've talked to about it convince me that it can only be helpful. The only issue is that, with the infections I have, there's some question about whether it's safe or not. So, after talking with my doctor about it, we've decided that if the testing of the placenta comes back negative for both infections we're testing for, I can go ahead and have it done. So I have someone lined up to do it and I'll just have to keep my placenta in the freezer until the results come back.

At my doctor's appointment yesterday we also determined that we won't be doing cord blood testing since testing the fluid is less likely to be accurate than testing tissues (placenta and the cord itself). This is great since it means that we'll be able to do full delayed cord clamping and cutting which, again, is something that I've read a lot about and see it as being a huge benefit to the baby.

I will also be breastfeeding with the blessings of my doctor but it will require me to stay on antibiotics (ones that are safe for breastfeeding, of course) for as long as I'm breastfeeding. For a while my doctor wasn't supportive of breastfeeding but new information she heard at a conference a few months ago showed that it can be a safe option with Lyme disease as long as antibiotics are used. It's a big relief to have her support and not have to fight for it since it's something that I feel very strongly about wanting to do.

I am still on the same antibiotics I've been on since I was about 16 weeks – Ceftin and Zithromax. I'm tolerating them both well and we've been slowly increasing the dose of Zithromax to see where my threshold is since it has caused ringing in my ears (tinnitus) before. So far I'm up to the full dose (500mg) 3-4 days a week and a half dose (250mg) on the other days. I'll most likely continue on these two antibiotics while breastfeeding for at least the first month and then possibly switch off the Zithromax on to something else to avoid the issues with tinnitus.

Other than that, things have been relatively good. Aside from being tired all the time, which I just attribute to being 7 ½ months pregnant and having trouble sleeping now that it's hard to get comfortable, I'm not having many issues. And it's so hard to tell if something is from the Lyme or just from being pregnant (like trouble thinking/concentrating). Overall, though, I feel like being pregnant has made things much better. My doctor joked at my last appointment that maybe I should just have a lot of kids! Eric didn't think that was so funny, but it really does seem like my body likes being pregnant most of the time.

I'll be back soon (hopefully) with more about the preparation for labor and delivery, including my birth plans, and how preparations are going for Poppy joining our family!

Chronic Illness and Pregnancy – 24 Weeks In

Living with chronic illness(es) involves tackling a whole host of challenges. Being pregnant comes with its own set of challenges. When you put the two together...well, my experience (so far) has not been that the challenges are multiplied or compounded. More like they are shifted. And it has become more and more difficult to pinpoint if certain symptoms are illness-related, pregnancy-related, or neither.

From research I've been doing for many months, probably actually over a year, it seems that when it comes to Lyme disease (and some other chronic illnesses) and pregnancy, women often feel much better when they are pregnant for a few reasons. One of these is that your immune system is suppressed so that you don't reject the pregnancy since the baby is technically a foreign body. With a suppressed immune system, symptoms that are more autoimmune or due to an overactive immune system tend to get better. Although I can't say for sure that this has happened with me, I have found that a number of things have gotten better.

Even while being off of basically ALL of my headache medications, I have not seen a worsening in the frequency or severity of my headaches and migraines. Yes, I still get them and there is a bit more of a challenge figuring out how to deal with and treat them since virtually all pain killers and certainly all migraine medications are not safe during pregnancy. So tylenol and some caffeinated drink have become my go-to when I do get a more severe headache. And a nap (if I'm able to take one) seems to be a help, too.

My fatigue level, which has always been one of my biggest issues, has been a bit more of a challenge. First there was the first trimester fatigue that left me unable to do much of anything without an obscene amount of sleep. I was taking at least one nap a day and usually ready for bed before 8:00pm. Thankfully once I got out of the first trimester, that level of fatigue lifted to an extent but I still have somewhere near my “normal” level of fatigue that I dealt with pre-pregnancy. I had been taking a supplement to help with my energy which was helpful but stopped it very early in the pregnancy because a) the morning sickness made it difficult for me to take more than just the bare minimum of medications and supplements and b) there isn't much information about taking it in pregnancy so my doctor and I decided it would be better if I didn't continue it. Do I notice a difference without it? Maybe. But it's so hard to tell what the cause of so many things is when there is so much going on.

Now we get to my dysautonomia. If you are unfamiliar with what Dysautonomia is, this is a basic description of it from the website of the Dysautonomia Youth Network of America (DYNA):

Dysautonomia is an umbrella medical term utilized for a group of complex conditions that are caused by a dysfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. A dysfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment. Orthostatic intolerance (the inability to remain upright) is a hallmark of the various forms of dysautonomia.

The form of dysautonomia I've been diagnosed with is called Neurocardiogenic Syncope (NCS). I probably more specifically have hypotension rather than syncope because I don't pass out, but I would if I didn't know how to read the warning signs I have and get myself sitting or lying down in time. The symptoms I deal with on a regular basis are dizziness/lightheadedness, nausea, fatigue (yep, it shows up everywhere), shortness of breath, brain fogginess, and less often I experience diminished/loss of vision and hearing when I get close to passing out. The treatment that I have been on for more than 7 years after medications failed to help is daily IV fluid which I administer at home through my port-a-cath. Originally I was getting 1 liter a day but after a few years it was increased to 2 liters and amino acids were added to help me maintain a good nutritional status. This is where it gets interesting.

At first in my pregnancy, it seemed that I needed the fluids more than ever. I was continuing to infuse 2 liters every day and still struggling with symptoms. Maybe things were made worse from the morning sickness I was slammed with or just my body adjusting to being pregnant, but regardless of the reasons I was feeling pretty sick. But then as time went on, I started experimenting with skipping days of fluids. And amazingly I found that there wasn't a big difference with how I felt with or without the infusions. So I started reducing the number of days I was getting the IV fluids (my doctor has given me the green light to do this) and got to the point where I only seemed to need it a few times a week. The longest stretch I've gone between infusions (which just ended yesterday) was well over a week (I believe it was more like a week and a half). There are definitely days when I feel like I probably SHOULD do an infusion, but I just love the freedom so much that I push myself through that and have been managing pretty well. I know I can't keep this up forever and I will need to continue to do fluids here and there to maintain a good level of health, but it's great to have so much more flexibility with it.

The most likely reason that I have been doing better and not needing the regular IV infusions is due to the increased blood volume that happens during pregnancy. One of the possible causes of dysautonomia conditions (and one that we highly suspect I have) is low blood volume. This means that there isn't enough blood to circulate well and keep sufficient blood flowing to all areas of the body, including the brain. With the pregnancy-induced increase in blood volume, the hope was that my dysautonomia symptoms would get better and I might not need the fluids all the time. At first we didn't think that was going to happen because of my worsening symptoms, but it seems that it just took a little time. This could very well mean that once the baby is born and my blood volume decreases again, I could have a really difficult time adjusting so we'll just have to plan the best we can and make sure I have plenty of fluids to hopefully keep me stable.

Overall, at 24 weeks pregnant things are going really well. I know there will continue to be challenges, but in the end it will be worth it all. Every time I feel my son move around or kick me, I can't help but smile knowing all that I've overcome to get to this point.