I usually have a rule about not posting any picture that makes me look horrendous or ill, but I've reached a new level of crappy today, and it wouldn't be fair to readers if I didn't tell the truth about my nine-month journey at all times. This is what the last days of my Lyme pregnancy have been looking like. Even the pound of makeup I'm wearing under my eyes can't cover these circles! Someone please put me out and wake me up on Thursday morning.
My Ob/Gyn called yesterday to make sure I hadn't jumped off a cliff, but also to tell me that my c-section was rescheduled to this coming Thursday, the 28th. Five days away. Not too bad at all, considering when I heard the news that we had to postpone the birth, I imagined it would be a much longer wait.
Because we were so close to lung maturity to begin with, and 37 weeks is considered full term, I will not have to have another amnio beforehand. (YES!) It's a done deal. I go in at 6am on Thursday, and we head right to Labor and Delivery.
In the meantime, I've slept a total of three hours each night for the past two nights. Everything on my body itches from the candida, and forgive the TMI, but I pee every hour and a half. Yay pregnancy and antibiotics.
I'm not sure if that's what's making it even tougher this week, or if the emotional stress has kicked some neuro stuff up--it could also be the physical stress of making the trip to the hospital and having the amnio... personally, I'd like to blame the Ambien I took for the first time the other night. That thing did horrible things to me and I haven't felt right (I'm really "fuzzy") in the head since--whatever it was, these last five days are not going to be easy. Pain level 9--feeling like I'm in a bug zapper again. It's OK now, though, because I'm in better spirits about it, and there is a real end in sight.
My husband told work he wasn't coming in yesterday, even though Friday is the busiest day of the week (that has NEVER happened!). We spent a very quiet day with our son and realized that it was better in the long run that the two brothers would not share a birthday. Having time together on Wyatt's special day, just the three of us, doing nothing but sitting around the house and playing was just what we needed. Neither of us are in the best mood, and focusing on our little guy without any pressure of entertaining or checking off to-do lists was amazing. Surprisingly, some people have rudely expressed disappointment that there was no big to-do or sharing of a birthday bash, but frankly, we don't give a flying you-know-what. Can't please everyone, right?
Wyatt had his first piece of cake, and he loved it. My parents showed up later that evening, as expected, for their normal weekend visit, gave the little guy a couple of presents, took some pictures, and that was that. Perfect.
The clock is ticking extra slowly, but we'll make the best of it. We'll meet our new little boy, and I'll get back on some better meds in no time. I may even stop twitching by the time I leave the hospital. Hey, you never know...
Our little boy is a year old today! Happy birthday to Wyatt, the light of my life and reason I will continue to fight forever to beat this. As you can see, he's a happy, healthy little man. For this, I'm beyond grateful.
Well, we had the amnio bright and early this morning. It was uncomfortable, but that's to be expected when someone sticks a long, thick needle into your belly and wiggles it around for a few minutes. Everyone expected great results--so great that we pre-registered, had all of my blood samples drawn in advance, went over the schedule, and the nurses even sent in breakfast for me so I could have a nice meal, since I wouldn't get to have one tomorrow morning.
My husband and I knew better and looked at each other with worry. Then we joked with the nurses that this was way too nice and easy.
And it was.
After waiting all day by the phone for test results, we were finally faced with a difficult (yet not difficult) decision. The numbers for full lung development were to read 2.4 or greater. Ours came back just above a 2.3, which made it right on the line of acceptable. We could still go on with the section tomorrow if we wanted to, but we weren't 100% in the clear.
I was getting mixed signals from the doctor, who felt terrible about having to deliver the news. First, she said that some doctors are trying to do away with amnios as accurate lung tests, because they are unreliable and give false negatives and positives all the time. Second, she didn't expect any problems with our baby, and she consulted the high risk specialists, who agreed that my pain levels and lack of physical function right now would qualify me as approved to deliver. It has gotten that bad.
But worst case scenario, the baby would need an oxygen tube, and essentially that would be my fault. I get sad when I see pictures of little babies with tubes up their noses. Even worse is when they need even more respiratory assistance, and the ultimate deciding factor for us was that our hospital wouldn't be able to provide that, so if the 10 percent chance we had for some really bad lungs occurred, our baby would have to be transported to another hospital to get help. All because I couldn't suck up another week of bed rest and neuro pain.
It was a no-brainer for us, but I have to admit that telling the doctor we would wait it out was harder than I expected. You know how when you're in labor, they tell you to pick a focal point and put all of your energy into that one thing to get you through the tough contractions? Lyme disease is a f*%&$*# never-ending contraction, and July 22nd was my focal point. These last weeks have been horrendous, especially this past week when my help canceled last minute and having my husband working extra hours. But I don't need to get further into symptom woes--you've been down that road. For me right now, it's just magnified and very intense. I chalk most of that up to stress and anxiety, but who really knows why the pain is picking up?
So I sobbed for two hours straight. I couldn't even talk about it with my husband. Honestly, I felt morbid. Not because I have to wait a week. That's fine, my baby needs that. I think 36 weeks of focusing, being optimistic, and keeping a sense of humor backfired. It's hard work to not get depressed about Lyme Disease, and sometimes the blow is too hard to keep positive. This was one of those hard blows, and I finally ended up having a meltdown. Actually, mini-meltdowns keep popping up, so I'm not even sure I'm done with them yet.
Over the last couple of hours, we've had to tell the family the news, have my out-of-state inlaws cancel hotel reservations and reschedule the trip, make new doctors appointments, have my parents reschedule vacation time that was hard to take in the first place, try to get my nanny to cut her personal vacation time short because I need her after all, reschedule the photographer who offered to take newborn photos for free, the list goes on. On top of that, I have a raging systemic candida infection that is wreaking havoc on all areas of my body. And I mean all. I can't treat it until I deliver. But all of this is trivial in the long run.
I think the worst part is the overall disappointment of having to go through all of this in the first place. With Lyme we learn to get rid of all expectations because we never know what we'll get on a day-to-day basis. I also try to take a Buddhist approach to all things, however, I was unable to avoid expectations and suffering this time around. Why? Because I really freaking hurt. I'm tired. I feel like a shitty mother because I can barely chase after my first baby and now I'm struggling with a second on the way. I've spent the last week crying tears of frustration because I am weak, exhausted, and basically stuck in bed, when all I want to do is enjoy the experience of pregnancy and birth and not worry about my health or my children's.
This post was not intended to be whiny or self-indulgent, though I realize it kind of turned out that way. I just want to be truthful and share the dark times as well. Because if you're symptomatic, there will be dark days. And we will all get through them--it just doesn't feel that way when you're deep in it.
Tonight I'm grieving the loss of my old self. Well, a healthier self, anyway. One that would not have to put all of her focus and energy on a specific date in order to survive the day-to-day crap without losing hope. I'm over this Lyme nonsense. I hate even typing the word.
They gave me an Ambien at the hospital to take tonight so that I could be well rested for surgery tomorrow. I'm taking it anyway to catch up on some rest, and hopefully I'll wake up in better spirits. I have to. It's my son's first birthday, and it wouldn't be fair to feel so down on such a wonderful day.
I'll check in again when I find out when I'm really and truly going to have a baby.
I had my last appointment with my ObGyn yesterday! Each time I go in there, I'm treated with such kindness and sympathy that it actually borders on being uncomfortable. Even if I feel terrible like I did yesterday, I try to smile and joke, mostly because there's only so much complaining a person can do--they've heard it all, and that baby isn't going anywhere until Friday morning, no matter what I say.
Conversations always start like this:
Doctor: So how are you feeling now? Counting down the months/days/hours?
Me: I've been better, but I've been worse--but I will offer you a million dollars if you take this baby out of me right now, or maybe on your lunch break? We can do it in the parking lot. I don't even care!
But now I'm counting down the final hours! 48 give or take, but that's assuming my amnio results come back clear for full lung development.
The test is at seven tomorrow morning, and I should know if we're having a baby by noon. If that's the case, I'll get my stuff together, enjoy the rest of the day snuggling as much as I can with my son, and then I leave for the hospital Friday around 5:30 am.
I'm not going to lie. I'm scared of many things right now--
Understandable anxiety about how the amnio will go tomorrow--what if his lungs aren't ready? I've mentally prepared myself for this early delivery, because it's the only thing that's gotten me through this last extra rough month of pregnancy. The nerve pain is driving me nuts. I think the disappointment of having to wait longer will kill me!
What if something goes wrong during delivery?
What if I didn't take enough antibiotics during pregnancy and I have a Lyme baby?
What if I took too many drugs during pregnancy and I have a baby with problems?
What if, what if, what if. That is a horrible way to think, because a person creates unnecessary anxiety--nothing has actually gone wrong yet, and it most likely won't. And if it does, we'll deal with it as it comes. We're not given anything we can't handle or get through, right?
So, one thing at a time. I keep telling myself that, anyway. Amnio in the morning, followed by a nice breakfast at the diner (that's what we did last time, so now it will be a tradition.) I can handle that.
I've been so lucky to have recently had offers from family and friends to help out before, during and after our new baby is born. I had the same offers last time around and rarely took anyone up on them, because I was afraid of asking too much of people and I just wanted to be polite. I like to think that I can do everything myself, and I feel guilty asking others to do things for me. I quickly learned that politeness can result in total exhaustion and a much longer recovery time. I've given it much thought, and here's a list of things I've come up with that might help out the Lyme mamas out there:
1. If she has other children, offer to babysit while she goes for check-ups, or maybe even bring her to one of her many doctors appointments. Lymies often have triple the doctors appointments of an average mom, and it can be hectic trying to arrange childcare during exams or even drive if she's having a sick day
2. Give her a call to see how she's feeling. You'll never get the full story via email or Facebook, and though it's easier to send a note, it's just not as personal. A quick call from a friend will really make her feel like she has a good support system. (Even on days when I feel grumpy and antisocial, and I debate whether to throw the cell out the window, I never regret picking up and spending 20 minutes talking to the person who called me.)
3. If you live close and are out running errands, ask if she needs anything. There were many times I was craving something specific and was missing an ingredient or two, or sometimes I'd realize too late that I was all out of dog food. Little outings most don't think twice about can sometimes use up a whole day's worth of energy for someone with an illness. A little saved energy here and there makes a world of difference.
4. Offer to come over and entertain her young kids for an hour or so, so that she can rest, or even hang out with all of you without having to get up and chase after the little ones when they get rambunctious. (I'm the best mom in the world when I'm interacting from the couch and someone else gets up to retrieve my one-year-old as he takes off like a lightning bolt across the house and out of eyesight.)
5. Make her laugh. She needs it.
6. Bring over a meal. I thought this was only standard for moms just returning from the hospital, but I swear, the day my neighbor came over with a delicious cooked breakfast (I hadn't been motivated enough to scrounge up more than crackers or cereal in months), my six-month pregnant belly was the happiest it's ever been, and my neighbor's kindness made my entire day wonderful.
7. Don't expect too much from a Lyme mom or Lyme mom to be. It's not that she doesn't want to return your email right away, or that she's purposely canceled plans the last five times in a row. It's really hard for us to predict how each day is going to unfold, and often times it's hard to keep up with the daily pace of active people, especially while pregnant. We try really hard to do everything we can, but sometimes we fall short.
AT THE HOSPITAL
1. Wait for an invitation before you drop in for a visit. There's no telling whether the couple views the hospital as a private time to bond with each other and baby, whether they're getting bombarded with guests already, or, here's the big one--how mom is feeling. My son was born in the evening, and I felt so horrible after 24 hours of labor and a c-section, that I held him for maybe thirty minutes before I was completely out for the night. I can't imagine anyone but my husband being there as I lay there in pain, crying to the nurses for a percocet, still loopy from the drugs already in my system. By all means, let the parents know you'd love to visit, but let them tell you the appropriate time if they're interested in visitors. (My inlaws were so good about this last time--I'm still grateful for their consideration. Even this time, my mother-in-law emailed to tell me that even though they will be in town beforehand, they'll do their own thing until I'm coherent enough to enjoy company and they'll just wait to get the call. So sweet.)
2. When you visit, please hold off on the perfume, hairspray or other chemicals. A.) As it is, many Lymies are extra sensitive to smells, sounds, and tastes B.) There's nothing worse for a mom than seeing her brand spanking new baby get coated with flowery odors, or even worse, cigarette smoke. Washing hands is not enough. Make sure you're clean and as smell free as possible. When Wyatt was born, I didn't have the guts to reprimand the nurse doused in Clinique Happy. She should have known better, but she also dispensed my pain meds, so I wasn't getting on her bad side! However, my husband got an earful when he and a buddy went outside and had a celebratory smoke and trailed it back into the hospital room. Both boys were banished to the bathroom to wash up before they went near the baby. It's uncomfortable all around to have to tell someone they reek. Just be mindful.
3. Tell the mom she looks awesome and did a great job, even if you're lying! ;)
4. Ask if she needs anything from the outside world. (I'm already craving the Starbucks iced coffee someone is going to get stuck bringing me!)
5. Don't be offended if mom isn't up for long visits. Some Lyme moms give birth and feel great, and others struggle with symptoms right after delivery. It's really based on the individual. We know you're there to see that cute little new bundle, but be respectful if Mama needs a nap. (I was more social than I thought I'd be and really enjoyed company. I'm also lucky enough to have a family that knows 5-hour marathon visits would wear us out.
1. If you are invited over to visit and want to bring a gift, supplies are the best. Diapers, formula (if not breast feeding, of course), wipes, bottle brushes, etc. Not that stuffed animals aren't cute and appreciated--it's just that many of us struggle financially, and the everyday stuff helps more than you'll ever know. (When someone hands me a box of diapers, my heart flutters with joy. A can of formula is like gold. Seriously.)
2. Offer to watch the baby so one or both parents can take a nap. Overnights are a little personal, but offering an hour or two during the day is enough to help recharge a parents' battery for a good while. I say parents, because dad or partner is going to be up all night as well in the beginning, especially if mom is extra fatigued and struggling with Lyme stuff
3. Dinner is always appreciated. It's a great old tradition, and it's really just a nice thing to do
4. If you want to help with household chores, don't ask, just do it. No one wants to say, "Sure, wash my dishes and take out the trash! And you can wipe down my counters and bathroom sink, too!" It's embarrassing, and that whole politeness thing gets in the way. It's not that moms don't want the help--on the contrary--it's needed and genuinely appreciated. It's just hard to be put on the spot and rattle off a list of things we want done. Better to just get in there and help, because many of us will say, "Oh no, that's OK," when we really mean, "For the love of God, it looks like a bomb exploded in my kitchen and I need some help!"
How about you? Any advice for people who want to help out a mom struggling with Lyme? Anyone do something special/memorable for you during your recovery?
I am a mother and writer with Chronic Lyme, on the road to acceptance and recovery. I was bitten in 1996, diagnosed 2008. I am living proof that it is possible to live meaningfully and have happy, healthy children while battling this terrible disease.